Thanks for this video. My wife ran the ME and More blog until she passed away in August, age 25. She had comorbidities that compounded her illness, but there's little doubt that ME was the main cause of most of her symptoms. Her death was completely unnecessary and I will never forgive the criminal levels of lying and underfunding that led to it. Rest in piece, Sammy.
Rest in peace Sammy. Fellow ME patient, and Sammy was a part of my every day on Instagram. Her information slides were/still are powerful education for patients, medical professionals, and allies. Her name still is spoken in our ME circles. She is dearly missed in the ME community. We all lose without her here. My condolences.
@@kimberlyfuller3344 Thank you. She put all her effort into making sure her posts were as accurate, informative and readable as possible. We aren't going to let that stop, either.
I’m so sorry for you losing your wife. She was Only 25 yrs old? Sounds like she was robbed twice. I’ve been sick since 2020 but with all information I realize it’s been 30 yrs + I wouldn’t wish this HORRIBLE Illness On Anyone Ever! Keep u in my thoughts & prayers ❤
I got sick in 1977, so this video is a history of my life! I was blamed for my own illness and inability to get better. Thank you for digging out and succinctly presenting the facts of this devastating condition.
As a ret nurse (Norway) I lost all trust in Phsyc doctors. God Bless You. Doctors has done severe harm to you. I am angry and heartbroken. Best wishes for a cure in your physical illness.❤
1978 was the year for me. Any ideas on how to commemorate our approaching 50th anniversaries? On my darker days I’ve been thinking of asking for assisted suicide if improvement does not happen by 2028. Fortunately I have improved recently with MCAS treatment and on Abilify.
This infuriates me. I was telling doctors i was exercise intolerant bc there was a pattern. Ive been depressed & anxious but after so long I've managed to "deal with it" i get frustrated bc "my mind is willing but my body is unable" I'm not lazy, i want to live a full active life. But when washing your hair causes fatigue that holts your plans... what do you do??. I'm over the medical arrogance. Patients know their bodies & symptoms inside out. Listen to your patients or you will never progress past your ego. They are the ones that suffer & lose decades of life.
This is correct statement, and research shows that doctors who listen to patients have higher diagnostic accuracy and better recovery... if you doctor not listening they are not helping you.
Damn right! I just had a sports medicine doctor, based on nothing but his idiotic supposition, tell me that I just need to go to PT to "get stronger." I AM *NOT* WEAK! And physical therapists are even impressed by how flexible I am. But when you know that it's not a question of whether exertion is going to result in laying low to lick your wounds but for how long, and it just doesn't register on the medical community... I'll let you finish that sentence. They claim that I (52) have fibromyalgia. They do nothing but order counterproductive band-aid solutions and pass me off to the next specialist. Rinse and repeat.
@newshodgepodge6329 sorry to hear you're on the same never-ending cycle. I usually crash "the day after, the day after" i call it, the 2nd day after a benign activity & everyone, doctor, physio etc will say "it can't be from that, you would feel it straight away". That is ignorant to start with. Even a fit healthy person who has a huge day out, or starts a new exercise will get soreness or fatigue that can last until they get used to it. It just doesn't stop life as they know it, like it does for us.
@beebee1676 Absolutely! It's rarely the day of or the day after. It's that second day that puts you down for the count. It's such a relief to finally know that other people can relate. Thank you just for posting. 🥹
Before I fell ill, I was a type A go-getter. I would happily work 50 hours a week, and then go out dancing on the weekends. I owned my own home, as well as a rental home. I was happy and outgoing, with the whole world ahead of me. I lost everything overnight, with one viral event that laid me flat. That was 20 years ago, and I've been trying to claw my way back ever since. I'd give ANYTHING to be healthy again!
You can choose bedrest if you view life as intolerable or dangerous. If you get raped, as example, bedrest can be viewed as preferred existence over being out there in the dangerous world.
@@YochevedDesigns Same! Before I got sick, I walked everywhere as my main form of transportation, and took 4 advanced ballet classes a week. Now doing laundry does me in. I want my life back!
This video needs to be MANDATORY viewing for doctors and carers around the world. I have ME and Long Covid, and I have stopped going to doctors all together, because being dismissed makes me so depressed that it's not worth the mental strain.
I went to almost all doctors in my country for covid and covid related issues. I ama doctor too so I have access to medicine partly but except who listens they cant do anything and dont really wanna touch. A doctor gave the long covid diagnose to my mom(Yeah all of my family is sick) and they basically said there are no trestments we cant do anything for you.
@@nsg6225 It triggered mine with 2nd normal vaccine couldnt realise it was due to that then got mrna when I was intern since it was mandatory for us fucked my immune system then got covid it completely gone out of the rails I have issues in multiple systems gut,brain,mental health,osteopenia,seisures,allergies immune deficiency like wtf?! It is been like 4 years and I have been completely functionless after covid itself for 1 year.
When I was told I had M.E at 13 following a severe case of EBV (it was 1994) the doctor specifically added 'but no one believes that's a real illness'. It's been a very rough 32 years...Thank you for making this video 🙏🏻
1995 here. My doctor believed it was real, but he had one other “CFS” patient who recovered with graded exercise after a couple of years. So when that didn’t happen for me and exercise made me worse I was told “exercise is the recommended treatment” and after that I got an eye roll if I brought up my symptoms. I was given all sorts of antidepressants for my “depression” that I didn’t have. I couldn’t find another doctor that would take me so I stayed with him.
Please check out this book, written by a doctor who came down with ME/Fibromyalgia "The New Fibromyalgia Remedy: Stop Your Pain Now with an Anti-Viral Drug Regimen" by Daniel C Dantini. He says Fibromyalgia is ME with food sensativities. Your immune system is attacking something in the food. I can say giving up milk ended sever pain I was experiencing, and the antivirals got rid of a headache I had for a year. I went to a neurologist who wanted to put me on antidepressents, and an immuneologist who didn't help. The only doctor who helped me, was the doctor who agreed to prescribe Valtrex for 3 months.
Thank you for sharing. I'll look into that. How does the Valtrex work for treating ME for you? The Doctor who helped you?... what kind of doc was that? General or specialist?
What has annoyed me most about the way this condition has been treated is doctors' assumptions that a healthy, active, vital.woman would want to spend her life in bed, unable to go out, have friends, have conversations, even wash her hair. The 'you're just lazy and hysterical' pall that's hung over the diagnosis. Doctos seemed incapable of acknowledging a difference between muscle stiffness and general tiredness and complete energy depletion, because after all, women. We all know this would have been taken more seriously if more masculine men were affected. But that aside, just having their illness properly acknowledged is huge for sufferers. Thank you.
It's so incredibly mysoginistic. I always wonder where that hate towards women comes from and how it is possible that it still influences scientific research concerning illnesses.
I wish people wouldnt confuse the issue by bringing the complexities of sexism, and racism into it. I dont see anything here about CFS actually being affected by those things. If you really think those excuses are the only ones used to cover up cfs symtoms, I will just share my experience and you can draw your own conclusions. As a pale male in the military I was forced to get up and excercise every day that wasnt a government holiday. After these I would colapse on my bed, skipping breakfast, and get up 10 minutes before work to barely get ready. And I would sleep though ever weekend I wasnt on duty. I was forced to march for hours through deserts, hills, or snow. or lose my career, home, health care, etc. When I was bleeding from my pens and went to a doctor he said he didnt see blood now, so I was called a liar. My bones ened up wearing away untill holes were visible in my xrays before any reduction in excersise was allowed.
@@Datguy-gw2lp I'm sorry that happened to you I am curious to know the men women ratio of the disease. My estimate it is around the same as anorexia. There are men and boys with anorexia, but the ratio is like they are the exception to the rule. You know how weakness in men gets called being a 🐱, the sexism and misogyny is in the capillaries of the world, and the consistently keeping on of calling it out will not only help women get the treatment from the medical field they are humanely entitled to, but also boys and men who are going through what you went through. ✌️
It is very important to research how many ME patients have died from suicide, driven to it by nil medical recognition, support and appropiate treatment. The dual trials of coping with a serious medical condition with no aknowledgemrnt of the devastating impact on life: loss of relationships, family, marriage, friends, social life, career, financial security and quality of life, resulting in poverty and loneliess, are sometimes an insupportible burden - too much to bear 😢
I'm a childhood traumatic brain injury survivor, and have long been fascinated by the similarities between my symptoms and those of ME/CFS patients. And the terrible life consequences you have described have been exactly mine. For Heaven's sake, the damned thing shows up on most brain MRIs. Doctors are often the most destructive people on Earth.
@@bobtaylor170It showed on your MRI? What kind of MRI, with or without a contrast? Check something called craniocervical instability and dr.Sasha Blashkovic’s book on post concussion syndrome. It may not be a brain, but a neck ligaments problem.
The timeline described here calmly and reasonably makes my blood boil. So much suffering. Sending all my love to everyone affected by this crime against humanity.
"crime against humanity" is such a succinct way to put it... I can think of few things more evil than medical professionals refusing to acknowledge new (proper) research on the basis of "not believing in it", instead choosing to believe the patient must be lazy and/or an attention seeker. They even know their line of thinking is wrong, otherwise they wouldn't need to fudge the research... And they are well aware of that. I will never understand why those kinds of people end up in the medical field when they should themselves be "sectioned". There's a special place in hell for them.
@@darkcreatureinadarkroom1617I was inpatient, outpatient and in the ER at one of the best hospitals in the US this past week. One person knew what MECFS was. Another ordered a thyroid test obviously. One nurse was curious about it and took all the printouts I had made because I knew exactly what would happen. The social worker asked if I wanted to see a therapist. After I said no she brought a pamphlet with psychiatrists and I showed her I already see one. There. At the hospital. She didn't know the difference between psychiatrist and psychologist. In the US I have hope that in twenty years you won't have to explain it's like long COVID and then deny the option of being put in isolation because the nurse doesn't know what long COVID is either
thank you; I contracted chickenpox at the age of 21 and was diagnosed with CFS about a year later. I am now 59 and still waiting on an answer and possible cure. the humiliation, shaming, blaming, ignoring that has come from providers and sometimes family members has been a heavy weight to bear. there are millions of us; thank you for caring enough to help tell our story.
@@RosyOutlook2 in the 80s, that shot wasn't even a thing. I was a senior in Nursing, so who knows where I contracted it. never did have mumps or measles.
I was vaxed as child and had the chicken pox. I ate a heap of dandylions after developing a shingles rash a year ago and it went away. Vit K1/a for the win. Energy returned felt better than I had in my 20's.
I’m Norwegian and got an ME diagnosis in 2005. But luckily I’ve never been told to use therapy or exercise. I have found that I’m far better when avoiding carbs.
I had ME/cfs from 1989-1995. It was the hardest illness I ever experienced, having been completely exhausted for the first year and having a never-ending fever. I then went through cycles of exhaustion, especially if I pushed myself to do too much activity. People accused me of being a hypochondriac. It was just awful.
@valkarkauskas9488 Approx 5% of people with ME recover. At this stage there appears to be no rhyme it reason to it, until we understand the disease better should enough research ever be funded. It's a mystery but how lucky to be in that 5%! They do think that rapid onset of symptoms and aggressive, total rest from the beginning puts you at the greatest chance of recovering. For the other 95% of us it's lifelong, tragically.
I can only empathize, from a position of almost insignificant experience. When I was ~30, I had a rubella infection (no vaccines for boys back when I was young). After a week or so, I felt physically pretty much back to normal and went back to work, shortly before I got slammed for a couple of weeks by extreme fatigue. I could still force myself to get up and slowly shuffle to a local shop every few days to buy food, and even though it took al the mental effort I could muster (and the prospect of otherwise not having anything to eat) to do that, I didn't have any symptoms beyond fatigue. For me, it was only a passing thing, but I still remember the thoughts I had when I was pretty sure the actual infection was gone and this was something different, but things just stayed the same day after day and I was genuinely starting to worry that things just might not get better any time soon, if ever. The thought of that possibly being my new normal was scary enough in itself. The idea that that could be my future *and* that people I thought cared about me might think I was just making it up - I just can't begin to imagine how painful that must be. I suppose that even if things had not worked out OK , I would probably *still* have had the advantage of being a man in my 30s, and being somewhat less likely to be dismissed out of hand by *some* people than a teenage woman would have been, even if our circumstances were otherwise identical.
20+ years of medical gaslighting and worsening illnesses. My ex-husband and my family all think I'm just lazy. A divorce for the former and NC for the latter. I've stopped seeing doctors, none of them listen. Even the well intentioned ones will not listen. They try one or two things, and when they don't work/help, or make things worse, they just insinuate I'm not following their protocols and that I don't want to get well. Thank goodness my partner actually SEES me. He sees me through the good days and the worst days, and can see that I would never choose the bad days. He keeps everything ticking over on those days, and just comes and holds my hand and talks rubbish to make me laugh. When I went NC with my narcissist mother, she tried to bad mouth me to him. Mostly it was her telling him I've ALWAYS been lazy. I got EBV in my teens and I never fully recovered. I've got multiple generic issues and autoimmune issues that never got diagnosed as a kid, because of her shitty views about me. She was always insinuating that I was just making things up and that I was just a lazy hypochondriac. At 40, I've had a gut full. Of her, of my family, and of the medical profession who have absolutely nothing to offer but more gaslighting.
David Tuller of UC Berkeley was instrumental in helping George Monbiot with research. It's great because Monbiot is an international, an award winning investigative journalist who triple checks the source material. This has vindicated David Tuller and many others who fought the biosocial behavioral model of ME/CFS. But were attacked by Simon Wessely and his cronies like Micheal Sharpe. David Tuller stood firm and fought back for nearly a decade. Finally Micheal Sharpe accuses Monbiot of spreading Long Covid by writing an article about his own experience with the illness. That irked Monbiot and awakened him that something was very wrong with these so called ME/CFS specialists. So Monbiot investigated and discovered it truely was the Greatest Medical Scandal of the 21st century. We owe a lot of thanks not just ot Monbiot, but to Tuller and the many others that fought these unethical conmen for so long. Finally the story is going global
Covid does something to the “old” bits of Epstein Barr … I think that’s tied together . I didn’t get vaxxed because I thought the chances for getting Guillane Barre were higher if you had previously had Epstein Barr.
@@BrokenBattery I think it was actually a female MP in a UK parliament inquiry into the ME/CFS PACE Trial who coined the phrase. I might be wrong though. But I'm pretty sure it was used before Monbiot
I was an athlete who got mono and kept running. It killed my immune system, turned into ME. Having a bad mindset that I was lazy and getting right back to running on days I was feeling better only to crash. The lack of information on the disease, made my condition worse. Bad information made use not get treatment and made us worse.
Thank you for this. I was subjected to CBT/GET at KCH in 2003/4. I found the approach insulting, demeaning and bullying. It clearly wasn’t working and had the potential to do immense harm. I called the woman delusional and quit after 2 weeks. My GP (who thankfully was supportive) explained that my insurance payout may be dependent on compliance so I was obliged to return to this stressful program. When I said I was deteriorating they insisted on further sessions until I agreed it helped. As it was difficult enough to physically get to the hospital appointments with very limited energy this took all of 2 sessions. My self preservation strategy to be discharged was to cut out GET completely (otherwise I wouldn’t have been well enough to attend the sessions) and prepare a spreadsheet showing mild improvement. They should be held accountable for the bullying and abuse they inflicted.
Simply insane that they coerced you into compliance by bullying you. It seems obvious to me that the people with the "psychological disorder" were the misogynist practitioners who would rather disbelieve patients and falsify their studies rather than admit their hunch was wrong.
I’ve had this illness since 1987. I cannot begin to tell you how poorly I was treated. And yes, there was a lot of pressure for me submit to psychiatric therapy. The cruelty of this disease and its treatment by the medical community cannot be overestimated.
It’s what the medical establishment did to the German doctor that discovered washing your hands before surgery or delivering babies was good. They literally harassed him into insanity.
A horrible scandal indeed. The attitudes have been pretty much the same in Sweden, causing damage to so many lives - mine included. And there is still practically no help anywhere. Thank you for sharing. Sending love 🕊️
It’s even worse in Finland. One of our leading doctors on ME emigrated to Sweden after he got persecuted by the officials with no understanding of this illness. 😔 I thought it was a lot better in Sweden. Sad to hear it’s not.
Ithink EDS ehlers danlos syndromes ,connective tissue syndromes are a genetic underlying cause of ME cfs. After an infection. Written about it in many fb groups and also to researchers. Weak connective tissue, immune system mcas, vitamin mineral and enzyme deficiencys scarring clottin bleeding extracellular marix, homeostasis, and lots of other things involved mutations in genes..... hypermobile EDS hsd....
Mistreatment of the ill is common. As an attorney, I know of eight cases off the top of my head where cancer patients were mistreated. Six were women, two were young boys with pediatric cancers, and their mothers were also psychologically abused. You see the pattern? By the way, I met most of these cases socially. I represented only one.
Yesss! I've had to explain the spoon theory to all the doctors and nurses at my clinic and they say they've never heard of it before. The irony you ask? I'm a retired psych nurse with multiple diagnoses including sle, me, cf and hashimotos! I've known of spoon theory for years, even before any of those diagnoses! What do they teach medical "professionals " these days anyway?
Thank you for this, I'm tired of doctors telling me "Exercise cannot harm you", I finally feel like I have something I can force them to watch and review that might finally make them listen.
Give them a paper on it from the CDC too. They tend to like that. It's seriously amazing that the CDC has come around finally. I never thought I'd see this in my lifetime.
At my last Rheumatologist appt, I told my doctor that I am concerned that I might have CFS. He immediately said you need to exercise. Completely tone deaf.
@@t.h.8475 How blinking annoying! A similar thing happened to me when I saw my doctor in the street and I said the same thing to him, to which he replied 'well, there's no point coming in to see me as there's no cure'. Oh, thanks, lol.
This was a grand program and thank you for opening up this new dialogue. I'm still told that my chronic pain, stiff muscles, frozen joints, inability to sleep and the exhaustion I feel is a mental health disorder. You bet I'm depressed, put yourself in my shoes for a few years and you'd be depressed and suicidal too. I'm running out of drive, I live only for my grandkids at this point. But, they don't see me as I was, they don't see me at all, so why am I still here? Sad state of affairs. The medical community has abandoned people like me. What a horribly lonely place to be. Doctors defend their treatment, while people suffer. What ever happened to," Do No Harm"?😢
Please know that I really understand and have felt the same depression, questioning my having any reason to go on, not feeling any worth, but please remind yourself that your perspective is off and we need to give ourselves grace and even though we can’t do all the things we use to, or all the things we want to, we can stop pressuring ourselves and accept what we can do when we’re able and when we’re not, give ourselves permission to rest and find whatever we can do, listen to music, wherever brings peace and joy. Pray, listen to the Bible, books, encouraging and motivating things, watch fun movies, open the blinds and let the sunshine in. I’m sure I’m far off from encouraging you, but hang in there and allow yourself smaller moments of what can help you . ❤
Been there for more years than I can remember now definitely earned that t-shirt! 😫 You are definitely not alone self care and avoidance of all things that drain my limited energy resources are no 1 on my list. But sadly the years of not being taken seriously despite a diagnosis in 1995 the GET protocol and an absolute lack of knowledge or understanding from doctors have taken a heavy toll on this already fragile existence 😥 Hoping as ever that the right treatment is available soon 🤞
The "wellcare" is actually sik care. You must be your own doctor. Any question you have youtube or Google or AI csn guide you. It's starts with food. They are poi zoning us. Juice, eat organic. All supplements you need you can find info online. We must save ourselves. They won't.
@@aleyabellydance2 IT starts and ends with our diet, but the internet is full of crazy misinformation. We need fruit and lots of raw food, and stop eating rotting flesh and dairy. So obvious.
Thank you so much for this video. Veteran sufferer of M.E. here. GET has been so damaging for so many, including myself. I will be sharing this video. Hopefully, others will do the same. 🙏
Wow. I was diagnosed CFS back in the early 90's, was recommended GET but couldnt do it, after years of bedrest i slowly improved and got on with life. Rediagnosed last year and was pleased to see progress, that GET was no longer recommended and ME/CFS was fully acknowledged as being biologically based. Yay! Well, in that interim 25 years, I had no idea all this nonsense was going on, and how recent the change actually was. Horrendous treatment of patients. Wow. Thank you for covering this.
And it has yet to reach our doctors. Last year, even patients at Stanford (not Dr. Ron Davis') said that they were being treated abysmally just for having ME.
Since 1995. I tried GET in about 1998 and I asked for this treatment. I'd already been ill for 3 years +, and I knew that the problem was something to do with strength and stamina. So I asked for a referral to a sports medicine clinic. GET didn't get me fully recovered but it got me to the next plateau in recovery. Here's the thing. I honestly believe that if I'd tried GET a year earlier the therapy would have killed me. There was some early research into ME that demonstrated the cycles in the illness and recovery. I can't find any references to that right now but the patients need to be firmly in the driving seat of their recovery. That's what the DWP does not want to hear!
@@GlasPthalocyanine Yes, as long as we stay within our 'window' we might be able to use GET and have it work for us. I did it myself on my own when I was in my 20s and I always hope I can do it again. This makes doctors and health agencies even more confused, which really puts us in a bind having to try to explain and educate everyone everywhere we go. Most people cannot grasp the multi-dimensionality and continual fluctuations of ME.
Wow much needed patient centred documentary. The discrediting of patient’s experience is unconscionable. Here in Australia, the aged care assessment for help doesn’t recognise ME at all as needing reasonable adjustment. Same with disability assessment. GPs are openly hostile & disdainful. Where to turn to when whole “health services” are weaponised against sufferers. And being female makes one labelled “neurotic and hysterical” i.e. making it up/seeking attention/ exaggerating symptoms
Also in Aus, I've been fortunate to be diagnosed by a wholistic doctor following a battery of tests (no pun intended), and a little bit of supplement support. That's it. That's all we have. As far as science that proves the pathology, I only know of muscle puncture tests overseas. Am looking forward to more serious scientific (and therefore non-psychiatric) work in this area.❤
Same here, and once the doctors write that in our files, including hospital files, it doesn't matter what your illness is it's always "anxiety". I've had chronic infections & injuries go untreated bc i was treated as neurotic. Disgraceful.
Yes! I've been diagnosed with fibromyalgia and polyarthritis as well as chronic fatigue (although nowhere near as bad as those poor souls who are bedridden), plus have had several back and joint injuries - including slipped disks, collapsed joints and pulled muscles - and i live with constant pain every day, yet the last time I saw a doctor I was lectured because I've allowed myself to be over sensitive! Un-bloody-believable! lol.
I am a complementary health practitioner who helps people with ME. They come to me for emotional help. I always explain that I do not believe this is a mental health condition, and that, like any other disease, releasing life stresses and learning to pace oneself can help with symptoms. Some clients have lost all symptoms, and some get improved symptoms. It used to be thought that tummy ulcers are because of stress. I have never believed that. And now we know about H Pylori and NSAIDs. In one of my training courses, I was taught to help people with ulcers release stress! I was livid! Thank you for speaking the truth. 🙏🏻❤️🙏🏻
I remember vomiting blood and passing out on a bus being 18 years old in 1980. I did not get a single treatment for the chronic debilitaring stomach pain I had for more than 20 years. In the 2000's I finally got 14 days of triple antibiotic treatment prescribed 4-5 times to get rid of the H. Pylori bacterial infection. Twenty years of pain being labeled as a stressed hypochondriac...😠
With all my heart I thank you George Monibot, this story has been a long time coming and you have documented it so well. As a very long term ME sufferer I burst into tears when I saw the title of your video. Please people be aware that ME is not CFS, a quick look at Dr. Sarah Myhill will explain the differences. Dr. Myhill who has stuck by her patients for decades and suffered at the hands of those despicable psychiatrists and the GME because she helps us. I am alive solely because of her. God bless you George.
@cazzag8254 don't think he is interested as I mentioned 400 papers on vitamin D and ME/CFS and he just ignored it instead of helping others. This video is more of a pity party and poor me instead of helping himself or anyone else. Very selfish.
Based on on your comment, I went to her videos. She uses ME and CFS interchangeably. She also says long COVID is CFS. So where is she making a distinction between CFS & ME?
Yes, Dr Sarah Myhill is another true hero in all of this....refusing to give in despite multiple attempts by the GMC to discredit her and stop her from practising.
Thanx a million for this video 💫❣️ I was accidentally poisoned as a foetus by the highly toxic chemicals that crossed the placenta that my parents worked with...that was 1950...i was diagnosed with Fibromyalgia aged 9 & was told i had growing pains..i stopped growing at age 10 & still was in agony...at age 44 & almost dead i was diagnosed with MECFS at the Royal London Homeopathic hosp in Gt Ormond St..they medically retired me for the rest of my life as i could hardly move..at age 13 i read library books to try & fix myself with the right fuel..at the hospital i was given IVs of nutrients & EPDs i did brilliantly for many years until Austerity Cuts took my homeopathy away & all the treatments...with no plan B i stressed & then had a massive brain aneurysm haemorrhage & Tersons....still here! 😉
The medical world thought Parkinson's patients were faking and called it the fakey shakies in the 1900s. Excellent video. My daughter and myself have been living with ME for 25 years now. Whenever we find anything that substantiates and validates the reality of ME we always feel like ; see, we're not lying about this. It helps. Thank you Broken Battery!
The removal of the term Chronic Fatigue Syndrome is long overdue. It is misleading and disparaging and only serves to hinder progress in research and treatment for M.E.
I'm not so sure that will make a big difference - the psychologists who peddle the biopsychosocial model have changed the names they use (from hysteria to conversion disorder to FND to medically unexplained symptoms) but their core beliefs, that we are malingerers who aren't really sick, never changed. It's those beliefs in the medical establishment that need changing, otherwise switching to just ME as a name will simplify transfer their harmful theories. They'll say ME, but think "just fatigue," in the same way they say "medically unexplained symptoms" but mean hysteria.
@@eladnarra I hear what you are saying and you are right. Public opinion is changing though and in a strange way, we can be thankful for the covid pandemic, the sad fact that so many became ill with long covid, many more peoplle are seeing the illness for what it is. Getting rid of the CFS tag at this time would help shape public opinion. Not a big difference, I agree but a small win and we sure need the small wins
I wholeheartedly agree, but purely for NHS operational reasons. I am working on this very thing, alongside trying to get a cover-up related to the inquest into the public domain. At present Devon County Council is refusing to release the full recordings to me. This is unlawful and an indication of the extent of the issue.
I agree. I have felt for quite a while now that it would help professionals to understand the difference between ME and CFS. That what they were told about CFS does not apply to ME.
@@sarahby7399- I am so incredibly sorry for your loss Sarah. I followed the inquest and cannot imagine what you have been through and are going through.
Thank you for this video. I suffered for decades with this ailment. I lived in California when I first became ill. Went to numerous doctors who insisted I wasn't physically ill, but suffering from some psychological disorder. I went to both psychologists and psychiatrists who could conveniently come up with all kind of childhood traumas and other events that could explain my "mental illness". Unfortunately, it was true that I did have adverse events in my childhood, and I couldn't dispute this. How do you fight back on a diagnosis based on something intangible? I tried for over three years to push myself through this illness until finally I crashed for good. Unable to work, to pay bills and losing my insurance, unable to collect unemployment or disability, I went home to stay with my mother and see the family doctor. To add insult to injury, he told my mother that I was malingering. She believed him. I finally figured out how to pace myself and consume less refined food. I still struggle, but I stay current with the latest studies and keep most of my symptoms under control. I often wonder what my life could have been if only I had gotten the help I needed from the very beginning. Again, thankyou. Please continue what you are doing to get the word out.
I am a sufferer from 1991 after I had Ebstein Barr that was not diagnosed, I have battled this physiological attitude and attack from husband, children, doctors and friends for years…. I have had an up and down three decades, crashing at weekends just so I can work during the week in a continual loop. I fortunately have at least had a sort of remission a few months or if lucky a year before crashing again after the flu. I got COVID late 2022 and I have been struggling since…..getting into a cycle of flu symptoms for three or four weeks and a slow recovery after for several weeks only to repeat the cycle. This year I have had 5 cycles ending in shingles and flu type symptoms for eight weeks, becoming less able to stand and move around for even ten to fifteen minutes, sleeping more and just an overwhelming lack of energy from the moment I wake up.
So disheartening and infuriating 🤯. My 31st year with M.E. and we are still no where with regards to treatment. Thank you for the excellent video Adam! 🙏🏼
36 years for me. At least a prominent Neurologist proficient in ME diagnosed this after onward referral by my GP who had already diagnosed ME. I saw a consultant in Infectious Diseases who called in another Neurologist. I asked for a referral to the Homeopathic Hospital which was no problem. This enabled me to return to a working life for a further 9 years until retirement. I have no clue what is happening these days. There are simply no services.
@@nellk2954 I can relate. I started experiencing symptoms by the time I was barely a tween. Now I'm 52 and still being handed what I call band-aid solutions and shipped off to one specialist after another, every one of them just as dismissive as the one before.
I came down with CFS/ME at 29. I was very athletic. I felt like a had a very small cold and then my world turned upside down. I dealt for years with quack doctors and skeptical family. I gradually improved over several years but never completed recovered. It's a lifelong journey.
Excellent documentary! Appalling behaviour from the med establishment. Unfortunately we are seeing it again on an even bigger scale over people who have suffered effects from a certain “intervention” of the last four years. 🙏🏼
I collapsed with a severe case of mononucleosis in 1977 from which I never recovered. Due to the excessive arrogance within the medical establishment in cahoots with the willful ignorance of our government agencies, I didn't receive a correct diagnosis for my disease until 2010 -- THIRTY-THREE AFTER INITIAL ONSET! During the first 20 years, I suffered through an ongoing deluge of shame, blame, and abuse all too familiar to people with ME, which led me to end contact with most of the people I knew back then. It's been only in the past decade that I've witnessed a sliver of change in attitudes towards ME, but it's certainly far from adequate and doesn't make up for the damage caused to so many for so long. I'd like to see a class action lawsuit filed against those involved in the phony psych research that has wrecked so many lives and led to both patient torture and murder. People with ME deserve to see some justice served in our lifetime.
Thank you for this presentation. Perhaps some doctors are being educated properly about this illness, which for years was not covered in medical schools. One other item that I found is that there are 3 diseases that have post exertional malaise - multiple sclerosis, myasthenia gravis, and myalgic encephalomyelitis. This means that neurologists were already aware of this symptom, but went along with the psych idea even when they saw it in us.
@@maramclaine830And long term of several virus infections (Epstein-Bar, Cytomegalovirus, Q fever). Does anyone know the difference between long term viral diseases and ME?
Well explained, thank you. It's scandalous how some "specialists" treated patients inflicted by this illness. A friend of mine is suffering from ME/CFS and I sent her the link to this video.
I was diagnosed with fibromyalgia in 2020 and recognise so much of the misinformation and lack of real information based on research… it’s very frustrating when you feel so stuck in your own body and physically unable to do anything yet being told you have to keep trying as it’s mostly in your head. I hope those going through anything similar has good support and help when and if needed 🖤
@@allolobophorus a theory I have why carnivore works..because it has residues of ivermectin and other parasitides now found to cure these symptoms and also xancers
Battling this since 1988 at about 38. Has really ruined and limited my life no matter whatI do or how hard I push against it. Did manage college barely in health education. Started facilitated support group at hospital for 23 years. Have study published in Journal of Musculoskeletal Pain in 2000. But it’s been hard push all along spending many days and nites resting and in bed. Days I will never get back. It is a thief of life. Guess I will die before finding a cause or cure. So sad. At 70 not much time left. CBT is B S you can’t think this away, if only.
Great job in elaborating upon the main points of George Monbiot's article. We definitely need more investigative journalism to highlight this issue for the scandal that it is.
I am a survivor of a sleep-breathing disorder called UARS, that has symptoms that overlap with ME/CFS including PEM. I found relief from the symptoms by supporting my breathing with a ventilator. I was extremely lucky since it was all just based on a guess, and all doctors except one were effectively sabotaging my health, much like what is shown in this video.
try some coQ10.. it may help with oxygen hunger, and creates a feedback loop that enables the body to then utilise oxygen to help gain more oxygen, and diminsh breathing disorder causing oxygen depletion to begin with, I believe it is definitely connected to the deficiency of coq10 an essential antioxidant needed for the heart and utilisation of oxygen.. that the sleep apnoea industry is profiteering from at present
I was sent to a psychiatrist, who sent a report to my insurance company with not only my name and address but also another person’s showing the same report was used for more than one person. Luckily my company supported me and fought it for me. That was 25 years ago and although I now have fibromyalgia, with a good deal of pain I am no longer exhausted all the time. I’m one of the lucky ones.
thank you. This confirms my experience. Last spring I ceased all conventional medical care b/c it was not helping, the side effects were worsening my ME and the stress and psychological harm of being constantly dismissed and minimized were harmful. After 9 months I'm almost back to my previous level of disability before I gave conventional medicine "another go". I don't feel "better" compared to my baseline when I stop treatment, I just don't have the added on worsening health factors of pursuing conventional treatment. It's sad that that feels like a win.
Congratulations,.... that's Great News!!..... Is there any specific treatment that caused the turnaround??.... Currently suffering and would be interested in Any information I could possibly use,... Thanks in advance for Your kind Co-operation.. Blessings.😊🙏🙏
Thank you Adam, (Broken Battery)some of the lead players in this appalling scandal make me despair for sections of humanity. I'm glad that yourself and quite a few M.E. activists are still running with this. They have obviously been controled and supported from above and are stiil, it seems, hanging on in there. The Psyches should never of been given control of this devastating condition but their masters deemed it necessary to have pet Psyches in place in order to perpetuate the myth that this was not a chronic physical . condition Now that it is firmly recognised for what it has always been a physical condition it is only right that they are removed completely from any position if control. I suspect though that that won't happen easily as it wouod basicaly be an admission of official Gaslighting over decades. If they do stay in position then they should be firmly ignored. Certainly their leader S.W. has no credibility outside his supported Cabal so his honours should be recognised by history for what they are, belongs furmly in the discredited knight category
It's to cover up the fact they poisoned us. As they are still at it, so don't hold your breath for change. They like fast and slow death. Slow is more lucrative for the Industry. People with severe illness and no validation of it spend a fortune trying to get answers and trying to get treatment. It's evil beyond a lot of people's capacity to face up to. The best natural approach is rest, detox and reducing harmful chemical intake such as sprayed fruit and vegetables. Clothes, cleaning products, personal care items, plastics etc...water, air...Organic and natural everything helps reduce exposure to more poison. Avoid breathing in all fumes as well. That has helped support my body best. For those a bit lost start there.
I had a severe case of Mono back in the 80s. I barely could work, but did after an extended time off. However, I had no life other than work and feeding myself. I was terrified when I could barely lift my hand to turn off the alarm for work I was diagnosed with CFS. I made a cross country move with my husband and became a "housewife" for months until I finally refused to live this way and pushed myself to do more every day. I still suffer low energy and have much pain. But i have given up telling Drs of the former diagnosis. The only things that have helped me was juicing organic fruits and vegetables, eating as clean as possible and resting when I need to. Mostly, I am just exhausted and at almost 70, i doubt anything will change for me. I do hope they figure this out. It is real and not a psychological disease. Yes, CBT is great for managing the deficit of energy without becoming horrifically depressed (maybe), but it is not even remotely required. A prescribed exercise program would have made things soooo much worse for me. May drs and nurses be moved to promote research.
It might sound crazy, but try a carnivore diet. I had chronic fatigue for years and it was gone in a week once i started the diet. I wish someone had told me years ago. I feel like i missed so much time with my first child because of always being exhausted. Luckily he's still young and now i have all the energy in the world!
This is incredible Adam 👏 👏 Thank you so much for taking the time to make this. It's amazing to see the scandal timeline set out so clearly. It would be perfect for a TV channel to pick up and make a special from it.
Thank you for this. I recovered slowly after ten years. My heart goes out to all people with ME, Lyme disease and long COVID ❤ . The way this was hijacked makes me angry.
I was told I was imagining it. That was in the late ‘80’s after my daughter was born. She is about to be 40. Still being told there is nothing wrong with me.
Tnx for researching the history of this travesty and creating a documentary that explains how the prejudices began. Everyone with this illness needs psychological support to cope with all of the losses and issues it brings, but that is different from saying that those psychological issues are the illness. No other illness requires one to defend one’s character. To not be believed when saying, “ You are hurting me.”, is a kind of dehumanization that crushes the spirit of healthy people. I hope the perpetrators in this video become aware of what harm they have done and live with the shame for the rest of their days because the patients lived with the damage for the rest of their days.
There is evidence that "Chronic Fatigue Syndrome" may be caused or partially caused by a lack of a good gut microbiome, we underestimate how beneficial a healthy gut microbiome can be for overall well-being
Thing is there seems to be little to no support or knowledge with gut Microbiome within general practice. Even a gastroenterologist seems limited in their treatment protocol or just labelling everything as IBD or IBS even when symptoms no way mimic those two broad conditions.
i did dr sarah myhill's protocol; paleo-keto, vit c to bowel tolerance and other supplements. Its a protocol which rebalances the gut microbiome, starves out pathological micro-organisms, heals leaky gut, sibo and candida overgrowth. So many of my symptoms went away from doing it, i felt i had rocket-fuel for energy compared to before, i even felt id gained IQ points! I was 100% consistent for 3 months from oct 2018. I went from contemplating getting a wheelchair to 30min daily walks and yin yoga. I have never been bedridden since, nor sofa bound and i had had several months long episodes off n on before. I was even unable to understand or speak language. Nowadays, i dip in n out of keto, mostly paleo. Pizza is my enemy XD
I doubt it's a cause. Just another injurious symptom. I use probiotic drinks and fermented food to manage my symptoms and reduce the damage of activities. However, it helps only to manage the issues. I have been put through pt repeatedly. My last time was water therapy and it was still too much to go as regularly as they wanted me to. My sessions ended up getting pieced out over 3 months insted of the 5 weeks they were going for. Afterwards I was still dealing with high physical stress symptoms and low energy. Still working on my cognitive recovery 2 months later. That's with switching back from a vegan diet to vegetarian so that I can add soft cheese and yogurt to my (pre-) probiotic intake. This illness will not correct itself from any one area of treatment. If gut issues were the cause then correcting the gut symptoms would heal the problem. It's just another regiment of treatment from my experience. Combined with B vitamins it's the most helpful for reducing damage during exertion, but not at curative. My cognition still suffers greatly with any amount of stress even with all the gut friendly dieting.
@@AlluminaOnyxia ANS dysautonomia is the cause and there's maybe 9 different sub-types. Many of us have several sub-types. Myself i fall under posture stress, gut stress, environmental stress, chemical stress and psychological/social/emotional stress = ANS dysautonomia = MECFS symptoms and diagnosis. It takes a consistent, disciplined, yet unhurried, no pressured 'multi-pronged' approach to heal. Like a ship with 9 anchors, it wont move if you only life one up at a time; *Identify potential stressors from your entire life which likely contributed to the 'perfect storm' of MECFS *Reduce symptoms with avoidance, alternatives or actions (such as diet for gut symptoms) *Teach and prove to subconscious you will change and start looking after yourself to keep yourself safe, be it learning to say no, having boundries, food and drink, chemicals, cutting toxic people/things/behaviours/thinking patterns etc etc (long list) *Rebuild body and resilience to stress with extra non-essential movement and meditative techniques *address any trauma *desesntise to stimuli you dont want to avoid. *Reintegration into real world, socialising etc while maintaining discipline and habits that have helped Theres different stages of recovery and what works at one stage wont work in another.
I had a “Doctor” say, “well can’t you get massages?” “Are you exercising?” and so on. This was during a medication review the government makes you have every 12 months, (Australia) I assume because they think somehow it’s magically going to go away, anyway the review is to be done by another doctors opinion, so not my usual doctor. I was so mortified. This fool had a Scottish accent and is at least 65 years old. No prizes for guessing where and what era he did his training! ✌🏼Thanks for the information, it explains everything!🏆
WOW, I'm so impressed and with so much gratitude of your efforts to put all this information together, for a caregiver this is very educational and I will share . Thank you.
After several years of feeling gradually worse and worse with many of the typical ME symptoms, I finally crashed in 1989 and was eventually diagnosed with it, no thanks to my GP who told me I was imagining it. I spent 5 years off sick from work and have been dogged by the illness ever since (I am now 70 and can’t remember what it was like to feel well). Life is a rollercoaster. I’d class my ME as moderate rather than severe, but still life-changing and has been worse over the past few months, curiously since I had the 2024 Moderna Covid jab (may be just a coincidence andI’m not an anti-vaxxer, but seems odd). What I find with medics is still scepticism, in spite of the NICE guidelines and NHS acceptance of it as physical. I’m writing this at 2.30 a.m, lying in bed exhausted but unable to sleep and knowing that, when I do eventually get to sleep, I’ll wake in the morning with flu-like malaise, little or no strength and feelings of hopelessness. I seem to tolerate any exertion less and less.
I am so sorry for all the ME/CFS Patients. I really hope research is going to find something to help 16 Million ME/CFS Patients in this world. Yes, there are 16 Million diagnosed ME/CFS Patients and we don’t know how much more are not diagnosed, so I assume there are way more.
Brilliant analysis and reporting! The very reason I completely mistrust anything the medical establishment authorities say - they are a bunch of narcissistic, psychopathic, compulsive liars. The needless harm they have caused to society is incalculable, yet not one of them is in prison, where they belong.
Your work is BEDROCK and SOOO USEFUL!!! I'm ("mildly") severe, mostly bed tethered and sooo grateful for this video among so many others. WIll be using your materials in my advocacy with disability leaders, home care lobbying, and in demanding our local hospitals stop starving and neglecting us to death. TYSM!! 🙌
My husband is dying slowly but surely, nothing has helped him. To be so helpless in 2024, with all the supposed and real scientific "advances" makes it ever so much harder.
Could be Mast Cell Activation Syndrome or another mast cell disease. A dietary supplement that may then help is Quercetin, see me-pedia Quercetin. Ask his doctor to try an H1 and H2 antihistamine for a couple of weeks to see if it helps. The dose may need to be a little higher than what is recommended over the counter. Never take any medication without first consulting a doctor. See Dr Shepherd on Treating Long Covid with Histamine Receptor Antagonists
I'm in partial remission on the carnivore diet.still need tons of rest and find formal employment a bit risky, but at one point, I thought I would have to live lying down for ever. 🥰
I have a friend who has responded really well on carnivore. He’s in his early 60s very active. Be mindful if you are going to do keto and watch oxalates.
You'll last a few more months then your body will give up and cave in to various meat-caused diseases. But you go ahead and prove my point. Monkeys don't eat meat.
It’s because meat is high in nicotinic acid (niacin) and iron. CFS ME is a mitochondrial issue, you are severely nad+ deficient and most likely iron depleted. You need to supplement with nicotinic acid (flush niacin) and iron (even if you have ok iron level showing in blood test it’s not getting into cells,if this is the case you need lactoferrin also). Should have said nicotinic acid restores nad+ levels in mitochondria/cells via the pries handler pathway.
If there's anything good about the horrible time Dianna Cowern (Physics Girl) has had since she got ME/CFS, is that her, and her husband documenting her illness, and her being such a well liked TH-camr, has brought a lot of awareness to the condition. I knew next to nothing about it before she got ill. Really hoping that awareness, especially among doctors, will improve, and fast, and this condition will get a proper boost in funding for real research. Thank you for this video, it was very informative, and on an important topic!
After 12 years of seeking an answer bc I gave up getting a solution 5 years ago I have concluded that the "profession " knows a lot about a lot of things in regards to the human condition BUT what they will never admit to is that there is a hell of a lot they know NOTHING and will blame the patient... which is of no assistance at all!
Brilliant documentary that needs to be aired on national TV, thank you 🦋💙🦋 (I believe I’ve been permanently harmed and disabled by GET). Diagnosed with M.E. 1995. Neglected and abused for years due to this.
Exceptionally well produced and organised! You successfully managed to avoid getting too bogged down in the weeds. Unfortunately I knew all the information already through living it 😔
Absolutely brilliant Adam. I can’t thank you enough for this. Totally professional and rigorously researched it combines the facts with the relevant film clips to back up the evidence.
thanks for this Adam. I am still working through thousands of pages of evidence from the inquest - much of which Devon County Council insisted on covering up (ably assisted by reporting led by the Times). Once I'm done, I would be interested in producing a sequel on how NHS has been actively blocking treatment for pwME since the NICE review. Others with very severe ME are interested in contributing. A project for 2025, if you're interested.
Thanks, Sarah. Glad you’re getting some help from the times. I’m thinking of taking a break but that sounds interesting will keep it in mind when I start to think about what I do next.
Thank you for your hard work. My extremely supportive GP was unaware of the tragedy in Devon until I informed her. That shows how little publicity an avoidable death in hospital receives
Thank you so much for this excellent explanation of the ME Scandal. I hope that people who are ‘not’ aware of how despicably people with ME have been treated for decades will watch this. As your film shows, the politics around ME go back decades and are complicated, but you’ve done a great job of breaking down the history, highlighting the most relevant points in a very watchable format. Great work!
Thank you for this. My local long Covid service appears to be following this flawed approach of graded exercise therapy and psychological support and I am so angry they are making me feel worse. They don’t even seem to keep up with any research and are just on a cushie little number as far as I can see.
They are on the CDC autopilot and likely put in place cookie cutter protocol, outcomes be damned. Not subject to a law suit if the protocol is followed. Even if despite the patient. Medicine are not trining to cure people any longer. They only follow the algorithms to keep them alive - this way patients remain as clients. Job security.
Yes, can very much confirm everything in this video. ME patient here. Was almost put into a mental health hospital by my doctor. Didn't happen in the end, luckily, but this illness is so misunderstood in all of society.
Thank you for this video. I sort of knew some of this information already but I had no idea how appalling it actually was. I got ME in 2014 but thankfully had already found information that GET doesn't work and can make you worse so I refused this when I was diagnosed. What makes be so angry is the small number of people that have put ME research back by decades. We potentially may have had a treatment or even a cure by now had these people not have pushed their bad science on the world, and aggressively defended it with lies. They are more interested in their reputations that the lives and health of people suffering with an incurable illness.
frustrating being told depression is why I couldn’t get up to shower for 5 days. now I am now depressed BECAUSE i couldn’t get up to shower for 5 days. I don’t know if i actually have ME or if it’s “just lupus”. I had always had extreme insomnia as a kid, but now there are some days where I am literally in bed all day, so tired. how obnoxious that the “treatment” was more exercise, the opposite of helpful.
*This is another example of why psychiatry/psychology should NEVER be allowed separately from neurology and immunology. Separation of the "mind" from the brain and body is a specifically modern, facetious conceit.* I lost someone at age 34 because psychiatry ignored the fact that his concussion in a car wreck had done physical damage, which they tried to doctor with their band-aid/plaster psychiatric "the mind is independent of the body" bullshit.
I am a retired GP. Helping patients with ME was very frustrating. All we had to offer was what the experts advised, ie graded exercise, CBT +/- antidepressants. What I have learned about mitochondrial toxins since retiring, I would certainly suggest cutting out fructose, ethanol, trans fats, and seed oils. All of these have been shown to be mitochondrial toxins, and can all be avoided without putting your nutrition at risk. I don’t know if it will work, but it is better than sticking to the only current recommended treatment, which seems to be useless.
Thank you for sharing your perspective as a retired GP. I’d like to point out that the video specifically discusses the lack of evidence for treatments like GET and CBT in ME, as well as the harm they’ve caused to many patients. NICE and the CDC have withdrawn these treatments because there is no evidence they are effective. I’d encourage a closer look at the flawed research and patient experiences highlighted in the video. Regarding your suggestions about dietary changes, I wouldn’t encourage anyone to follow this advice without evidence to support its effectiveness.
@ There, in a nutshell, is the problem. The only recommended treatment has flawed evidence, but you don’t advise trying something without any evidence. There is certainly evidence that all those substances are mitochondrial toxins, and really, a diet without alcohol and fructose is pretty easy. Trans fats are now banned, and the main culprit in seed oils is thought to be linoleic acid. Olive oil, coconut oil, dripping, and butter all are low in this, and are easy substitutes. If doctors (GPs) can only recommend treatment with a strong evidence base, until any is found, what can we do? No specialists are interested in ME, and while being listened to is important, it doesn’t get the condition better, so why not try it? What is there to lose?
@@BrokenBatteryit is very good advice. Mitochondrial dysfunction has good research, funded by the government. Also by dr myhill and usa dr. It defimately helps. Diet is very useful with mcas which many have too. So there is research. Just unable to post it here.
@@Threadbow Myhills test could not be replicated. Mitochondrial dysfunction may be involved but there isn't any evidence treating the dysfunction helps. Some people with ME do get MCAS but that is separate from ME. meassociation.org.uk/2019/08/independent-researchers-determine-mitochondrial-test-is-unreliable-and-should-not-be-used-as-test-in-me-cfs-09-august-2019/
Do you know whether fasting long enough to get to the full on autophagy stage (72 hours, iirc) have helped people with ME? Because supposedly this is like the ultimate deep cleanse on the body on cell level? ✌️
I have had ME for 19 years but also have dyslexia so have never got my head around the name. My original doctor was good but now retired. Subsequent doctors reduced my condition to “fatigue” on sick notes or correspondence. So demeaning and unhelpful.
@@kategarland7654 I am so sorry. We also have such stories. Don't give up to find a good doctor again. There are really good ones out there that know things about me/cfs. Make sure you check-in via email or phone before you visit, so you know whether they know the disease! Also bring someone to the appointment that helps you explain things, so you can pace your self better. Also, ask in your local self-help group for recommendations! All the best!
I've been suffering for years with Chronic Fatigue along with other symptoms. My Doctor just monitor's me. No investigation, no follow ups and it's so difficult to get an appointment at my Surgery that I've given up going. This is probably due to my PTSD and Chronic Depression.... When I get a good day, I do as much as possible, and then I'm laid up , only going to my local shop for food. I have to take regular rests in the 700 metres i walk. I'm used to being active, so this makes my Depression so much worse...
Thats exactly how i feel, once being very active, now if i do to much one day i suffer for the next three or four, its so frustrating for us. Nobody understands.. Doctors are useless, i have stopped making appointments and even if i did try to make one it would be 6/7 weeks before i could see one. We are being left. the whole system is broken.
I was diagnosed in 2012 following years of gradually declining health. I was a fit and very strong individual, a university educated paramedic working for the West Midlands Ambulance service. I was was medically retired from my career that I loved in 2016 but refused a pension based on the Nice guidelines who used the PACE study. As a result of this negligent malpractice patients have been left without proper research the data collected is corrupt and has to be restarted, meaning no meaningful treatment for another 3 decades. In addition people have died from ME with some of them recognised officially, which is very very hard to do. Usually the medical profession will attribute the cause of death to other factors rather than the underlying problem.
I've newly been diagnosed with ME, and in Finland where I live it's basically considered a "functional" disorder. I'm currently in "treatment" at a clinic for functional disorders, the doctors there have told me I will only heal if I agree with them on the causes of the illness and I've been told multiple times that I will not get better if I don't believe they will heal me. The doctor told me that I will be healed and I have been offered CBT and group exercise therapy, there are no private ME specialists in Finland and I basically don't have any access to any care
there's risto roine who's a private doctor, a neurologist to be specific. he's mainly treating long covid patients but is very much aware of the situation with ME. i think he was part of a group trying to create new guidelines years back for ME and became aware of the situation through that. but he's pretty much the only doctor in Finland who's very clearly on the side of this not being a functional disorder and who keeps up with the research being done
@@nope7576 oh damn thank you!! I still probably won't be able to go see him since I'm poor as all hell but maybe I'll one day get enough money to go see him
Koita tätä: syö kuuri Axiluria (loishäätö) ja siirry syömään pelkästään eläinperäistä ruokaa. Maitokin saattaa olla haitaksi. Ei maksa paljoa kokeilla ja todella saattaa auttaa.
Thank you. A great video. It would be fantastic if this could be a TV documentary and also if we could know how many people actually have ME and how the illness progresses as no one follows or manages patients with ME so there is no data.
Raelan Agle has a TH-cam Channel that profiles how many people have recovered from ME. I recommend anyone with ME review these discussions to see if any of these success stories resonate with them.
Thank you for such clear and informative video. It is very sad to know that because of certain people who probably will never face any repercussions for their actions, many have suffered as a result.
just want to thank you, Broken Battery, for putting all of this together. i’ve not seen another video of this quality and breadth! this is a great service to the ME community 💕
I was called lazy by a doctor who refused to give me sick leave so that I could rest and recover. Not only do I have the ME diagnosis, but also hEDS, POTS (both undiagnosed due to lack of belief in them by doctors) and chronic dehydration and at that time Lyme disease. I had passed out twice and was shaking and crying. But I was just lazy. I've had doctors laugh at me saying ME is made up. The damage done is horrendous and long lasting. The US has recently signed ME with it's own ICD code so it's no longer a vague "post viral fatigue". WHO should also implement this code. This is just as bad as the whole "vaccines cause autism" bs.
Imagine being so fatigued that you get a moment of relief by not inhaling because it takes so much effort. And the muscles in your neck permanently flexed, no way to get them to relax. For months to years. That’s me now. Anyone else?
Thank you for raising awareness about ME. I have suffered a much milder post viral syndrome that could be treated very easily. What kept me I’m a health spiral for two years was lack of a physical diagnosis due to my history of mental heath illness/drs unwillingness to recognise physical post viral symptoms. Eventually it was my psychiatrist’s WIFE who helped me. She is a naturopath who doubles as his secretary and told me I needed to take steps to correct my gut flora. Symptom alleviation was immediate and within a few months I was both symptom and condition free.
Very important information. Brilliant video. Every doc should see it. So called "evidence based medicine" is the way to go, but is not without flaws. Top medical journals are not flawless. More modesty is needed in our handling of the uncertain and the unknown. I feel lucky that during my medical studies I was taught to take seriously the patients own interpretation of sickness. One lesson. one Professor. Whos name I have forgotten but who I am thankful to.
Thanks for this video. My wife ran the ME and More blog until she passed away in August, age 25. She had comorbidities that compounded her illness, but there's little doubt that ME was the main cause of most of her symptoms. Her death was completely unnecessary and I will never forgive the criminal levels of lying and underfunding that led to it.
Rest in piece, Sammy.
So sorry to hear about the passing of your wife Hugh. Heartbreaking 💙
@@hughcaldwell1034 I’m so sorry to read this. Please let me know what the comorbidities were, when you feel able. I’m on blue sky @swastrosarah
Rest in peace Sammy. Fellow ME patient, and Sammy was a part of my every day on Instagram. Her information slides were/still are powerful education for patients, medical professionals, and allies. Her name still is spoken in our ME circles. She is dearly missed in the ME community. We all lose without her here. My condolences.
@@kimberlyfuller3344 Thank you. She put all her effort into making sure her posts were as accurate, informative and readable as possible. We aren't going to let that stop, either.
I’m so sorry for you losing your wife.
She was Only 25 yrs old? Sounds like she was robbed twice.
I’ve been sick since 2020 but with all information I realize it’s been 30 yrs +
I wouldn’t wish this HORRIBLE Illness On
Anyone Ever!
Keep u in my thoughts & prayers ❤
I got sick in 1977, so this video is a history of my life! I was blamed for my own illness and inability to get better. Thank you for digging out and succinctly presenting the facts of this devastating condition.
As a ret nurse (Norway) I lost all trust in Phsyc doctors. God Bless You. Doctors has done severe harm to you. I am angry and heartbroken. Best wishes for a cure in your physical illness.❤
Sorry to hear about the way you were treated
Me too. 1977 marked the abrupt end of my healthy life.
1978 was the year for me. Any ideas on how to commemorate our approaching 50th anniversaries? On my darker days I’ve been thinking of asking for assisted suicide if improvement does not happen by 2028. Fortunately I have improved recently with MCAS treatment and on Abilify.
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
This infuriates me. I was telling doctors i was exercise intolerant bc there was a pattern. Ive been depressed & anxious but after so long I've managed to "deal with it" i get frustrated bc "my mind is willing but my body is unable" I'm not lazy, i want to live a full active life. But when washing your hair causes fatigue that holts your plans... what do you do??. I'm over the medical arrogance. Patients know their bodies & symptoms inside out. Listen to your patients or you will never progress past your ego. They are the ones that suffer & lose decades of life.
💙
This is correct statement, and research shows that doctors who listen to patients have higher diagnostic accuracy and better recovery... if you doctor not listening they are not helping you.
Damn right! I just had a sports medicine doctor, based on nothing but his idiotic supposition, tell me that I just need to go to PT to "get stronger." I AM *NOT* WEAK! And physical therapists are even impressed by how flexible I am. But when you know that it's not a question of whether exertion is going to result in laying low to lick your wounds but for how long, and it just doesn't register on the medical community... I'll let you finish that sentence.
They claim that I (52) have fibromyalgia. They do nothing but order counterproductive band-aid solutions and pass me off to the next specialist. Rinse and repeat.
@newshodgepodge6329 sorry to hear you're on the same never-ending cycle. I usually crash "the day after, the day after" i call it, the 2nd day after a benign activity & everyone, doctor, physio etc will say "it can't be from that, you would feel it straight away". That is ignorant to start with. Even a fit healthy person who has a huge day out, or starts a new exercise will get soreness or fatigue that can last until they get used to it. It just doesn't stop life as they know it, like it does for us.
@beebee1676 Absolutely! It's rarely the day of or the day after. It's that second day that puts you down for the count. It's such a relief to finally know that other people can relate. Thank you just for posting. 🥹
As the saying goes 'there's no point in flogging a dead horse....' Nobody chooses bedrest over living a life.
Before I fell ill, I was a type A go-getter. I would happily work 50 hours a week, and then go out dancing on the weekends. I owned my own home, as well as a rental home. I was happy and outgoing, with the whole world ahead of me. I lost everything overnight, with one viral event that laid me flat. That was 20 years ago, and I've been trying to claw my way back ever since. I'd give ANYTHING to be healthy again!
I had plans dammit!
My father died way too early because the Naysayers just want people to work instead of give them disability and letting them rest.
You can choose bedrest if you view life as intolerable or dangerous. If you get raped, as example, bedrest can be viewed as preferred existence over being out there in the dangerous world.
@@YochevedDesigns Same! Before I got sick, I walked everywhere as my main form of transportation, and took 4 advanced ballet classes a week.
Now doing laundry does me in. I want my life back!
This video needs to be MANDATORY viewing for doctors and carers around the world. I have ME and Long Covid, and I have stopped going to doctors all together, because being dismissed makes me so depressed that it's not worth the mental strain.
I went to almost all doctors in my country for covid and covid related issues. I ama doctor too so I have access to medicine partly but except who listens they cant do anything and dont really wanna touch. A doctor gave the long covid diagnose to my mom(Yeah all of my family is sick) and they basically said there are no trestments we cant do anything for you.
@@exosproudmamabear558 what kind of doctor are you? So sorry they treat us like this, I have LC too
Did you take the covid vaccine?
@@nsg6225 It triggered mine with 2nd normal vaccine couldnt realise it was due to that then got mrna when I was intern since it was mandatory for us fucked my immune system then got covid it completely gone out of the rails I have issues in multiple systems gut,brain,mental health,osteopenia,seisures,allergies immune deficiency like wtf?! It is been like 4 years and I have been completely functionless after covid itself for 1 year.
@@nsg6225long covid has started at the beginning of the pandemic, long before the vaccines
When I was told I had M.E at 13 following a severe case of EBV (it was 1994) the doctor specifically added 'but no one believes that's a real illness'. It's been a very rough 32 years...Thank you for making this video 🙏🏻
Same 😢
Look at ozone therapy from Italy research
1995 here. My doctor believed it was real, but he had one other “CFS” patient who recovered with graded exercise after a couple of years. So when that didn’t happen for me and exercise made me worse I was told “exercise is the recommended treatment” and after that I got an eye roll if I brought up my symptoms. I was given all sorts of antidepressants for my “depression” that I didn’t have. I couldn’t find another doctor that would take me so I stayed with him.
Please check out this book, written by a doctor who came down with ME/Fibromyalgia "The New Fibromyalgia Remedy: Stop Your Pain Now with an Anti-Viral Drug Regimen" by Daniel C Dantini. He says Fibromyalgia is ME with food sensativities. Your immune system is attacking something in the food. I can say giving up milk ended sever pain I was experiencing, and the antivirals got rid of a headache I had for a year. I went to a neurologist who wanted to put me on antidepressents, and an immuneologist who didn't help. The only doctor who helped me, was the doctor who agreed to prescribe Valtrex for 3 months.
Thank you for sharing.
I'll look into that.
How does the Valtrex work for treating ME for you?
The Doctor who helped you?... what kind of doc was that? General or specialist?
What has annoyed me most about the way this condition has been treated is doctors' assumptions that a healthy, active, vital.woman would want to spend her life in bed, unable to go out, have friends, have conversations, even wash her hair. The 'you're just lazy and hysterical' pall that's hung over the diagnosis. Doctos seemed incapable of acknowledging a difference between muscle stiffness and general tiredness and complete energy depletion, because after all, women. We all know this would have been taken more seriously if more masculine men were affected. But that aside, just having their illness properly acknowledged is huge for sufferers. Thank you.
It's so incredibly mysoginistic. I always wonder where that hate towards women comes from and how it is possible that it still influences scientific research concerning illnesses.
They thoight up until s few years ago that black woman dod not feel pain like other races
Yes and they thought kids did not feel pain and would operate on small children without anesthesia
I wish people wouldnt confuse the issue by bringing the complexities of sexism, and racism into it. I dont see anything here about CFS actually being affected by those things.
If you really think those excuses are the only ones used to cover up cfs symtoms, I will just share my experience and you can draw your own conclusions.
As a pale male in the military I was forced to get up and excercise every day that wasnt a government holiday. After these I would colapse on my bed, skipping breakfast, and get up 10 minutes before work to barely get ready. And I would sleep though ever weekend I wasnt on duty.
I was forced to march for hours through deserts, hills, or snow. or lose my career, home, health care, etc.
When I was bleeding from my pens and went to a doctor he said he didnt see blood now, so I was called a liar. My bones ened up wearing away untill holes were visible in my xrays before any reduction in excersise was allowed.
@@Datguy-gw2lp I'm sorry that happened to you
I am curious to know the men women ratio of the disease. My estimate it is around the same as anorexia. There are men and boys with anorexia, but the ratio is like they are the exception to the rule.
You know how weakness in men gets called being a 🐱, the sexism and misogyny is in the capillaries of the world, and the consistently keeping on of calling it out will not only help women get the treatment from the medical field they are humanely entitled to, but also boys and men who are going through what you went through.
✌️
It is very important to research how many ME patients have died from suicide, driven to it by nil medical recognition, support and appropiate treatment.
The dual trials of coping with a serious medical condition with no aknowledgemrnt of the devastating impact on life: loss of relationships, family, marriage, friends, social life, career, financial security and quality of life, resulting in poverty and loneliess, are sometimes an insupportible burden - too much to bear 😢
💙
I'm a childhood traumatic brain injury survivor, and have long been fascinated by the similarities between my symptoms and those of ME/CFS patients. And the terrible life consequences you have described have been exactly mine. For Heaven's sake, the damned thing shows up on most brain MRIs. Doctors are often the most destructive people on Earth.
❤
@@bobtaylor170 Agree 100%, Hubris, arrogance and wilful Ignorance in the face of Scientific evidence is a fatal combination 😢😡
@@bobtaylor170It showed on your MRI? What kind of MRI, with or without a contrast?
Check something called craniocervical instability and dr.Sasha Blashkovic’s book on post concussion syndrome. It may not be a brain, but a neck ligaments problem.
The timeline described here calmly and reasonably makes my blood boil. So much suffering. Sending all my love to everyone affected by this crime against humanity.
"crime against humanity" is such a succinct way to put it...
I can think of few things more evil than medical professionals refusing to acknowledge new (proper) research on the basis of "not believing in it", instead choosing to believe the patient must be lazy and/or an attention seeker. They even know their line of thinking is wrong, otherwise they wouldn't need to fudge the research... And they are well aware of that. I will never understand why those kinds of people end up in the medical field when they should themselves be "sectioned". There's a special place in hell for them.
@@darkcreatureinadarkroom1617I was inpatient, outpatient and in the ER at one of the best hospitals in the US this past week. One person knew what MECFS was. Another ordered a thyroid test obviously. One nurse was curious about it and took all the printouts I had made because I knew exactly what would happen. The social worker asked if I wanted to see a therapist. After I said no she brought a pamphlet with psychiatrists and I showed her I already see one. There. At the hospital. She didn't know the difference between psychiatrist and psychologist. In the US I have hope that in twenty years you won't have to explain it's like long COVID and then deny the option of being put in isolation because the nurse doesn't know what long COVID is either
thank you; I contracted chickenpox at the age of 21 and was diagnosed with CFS about a year later.
I am now 59 and still waiting on an answer and possible cure.
the humiliation, shaming, blaming, ignoring that has come from providers and sometimes family members has been a heavy weight to bear.
there are millions of us; thank you for caring enough to help tell our story.
The only person I knew who got chicken pox at the age 20 in fact, it was post
just after a CP shot.
@@RosyOutlook2 in the 80s, that shot wasn't even a thing.
I was a senior in Nursing, so who knows where I contracted it.
never did have mumps or measles.
I was vaxed as child and had the chicken pox. I ate a heap of dandylions after developing a shingles rash a year ago and it went away. Vit K1/a for the win. Energy returned felt better than I had in my 20's.
@@RosyOutlook2I've had chicken pox 5 times, last time was about 15 years ago
@@Warlandaepstein Barr viruses are used as vectors in MANY vaccines
I worked with a lot of psychiatrists before getting sick. I found them to be some of the craziest people I've ever met.
You don’t say….
they were not helpful??
Seems like a clockwork orange type of scenario
@@michelemcneill3652 I refer you to Sam Vaknin’s lecture, ‘Medical Doctors and Physicians the most dangerous narcissists of the them all’.
I’m Norwegian and got an ME diagnosis in 2005. But luckily I’ve never been told to use therapy or exercise. I have found that I’m far better when avoiding carbs.
Have you tried the carnivore diet?
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
Food is key. It is poi. Zon. Change your food. Take ivermectin to get rid of parasites. You must do this. Yoyr life will change.
@@btudrus +1 recommend trying carnivore
Exactly the same with me
I had ME/cfs from 1989-1995. It was the hardest illness I ever experienced, having been completely exhausted for the first year and having a never-ending fever. I then went through cycles of exhaustion, especially if I pushed myself to do too much activity. People accused me of being a hypochondriac. It was just awful.
How did you heal it?
Cómo saliste de eso,
Please share how you healed from this?!!
I also lived this, 25 years, gaslit, blamed by family, career and finances ruined .
@valkarkauskas9488
Approx 5% of people with ME recover. At this stage there appears to be no rhyme it reason to it, until we understand the disease better should enough research ever be funded. It's a mystery but how lucky to be in that 5%!
They do think that rapid onset of symptoms and aggressive, total rest from the beginning puts you at the greatest chance of recovering. For the other 95% of us it's lifelong, tragically.
My life from 19 years of age. Wish every family member would listen to this.
I can only empathize, from a position of almost insignificant experience.
When I was ~30, I had a rubella infection (no vaccines for boys back when I was young). After a week or so, I felt physically pretty much back to normal and went back to work, shortly before I got slammed for a couple of weeks by extreme fatigue.
I could still force myself to get up and slowly shuffle to a local shop every few days to buy food, and even though it took al the mental effort I could muster (and the prospect of otherwise not having anything to eat) to do that, I didn't have any symptoms beyond fatigue.
For me, it was only a passing thing, but I still remember the thoughts I had when I was pretty sure the actual infection was gone and this was something different, but things just stayed the same day after day and I was genuinely starting to worry that things just might not get better any time soon, if ever.
The thought of that possibly being my new normal was scary enough in itself.
The idea that that could be my future *and* that people I thought cared about me might think I was just making it up - I just can't begin to imagine how painful that must be.
I suppose that even if things had not worked out OK , I would probably *still* have had the advantage of being a man in my 30s, and being somewhat less likely to be dismissed out of hand by *some* people than a teenage woman would have been, even if our circumstances were otherwise identical.
Can you afford a small or large red light therapy set up? Maybe it will help. Amazon for 150.00 up to 500.00 bucks
Try Urine therapy, literally the cure for almost anything . Read the book 'Your own perfect medicine'
20+ years of medical gaslighting and worsening illnesses. My ex-husband and my family all think I'm just lazy. A divorce for the former and NC for the latter.
I've stopped seeing doctors, none of them listen. Even the well intentioned ones will not listen. They try one or two things, and when they don't work/help, or make things worse, they just insinuate I'm not following their protocols and that I don't want to get well.
Thank goodness my partner actually SEES me. He sees me through the good days and the worst days, and can see that I would never choose the bad days. He keeps everything ticking over on those days, and just comes and holds my hand and talks rubbish to make me laugh. When I went NC with my narcissist mother, she tried to bad mouth me to him. Mostly it was her telling him I've ALWAYS been lazy. I got EBV in my teens and I never fully recovered. I've got multiple generic issues and autoimmune issues that never got diagnosed as a kid, because of her shitty views about me. She was always insinuating that I was just making things up and that I was just a lazy hypochondriac. At 40, I've had a gut full. Of her, of my family, and of the medical profession who have absolutely nothing to offer but more gaslighting.
David Tuller of UC Berkeley was instrumental in helping George Monbiot with research. It's great because Monbiot is an international, an award winning investigative journalist who triple checks the source material. This has vindicated David Tuller and many others who fought the biosocial behavioral model of ME/CFS. But were attacked by Simon Wessely and his cronies like Micheal Sharpe. David Tuller stood firm and fought back for nearly a decade. Finally Micheal Sharpe accuses Monbiot of spreading Long Covid by writing an article about his own experience with the illness. That irked Monbiot and awakened him that something was very wrong with these so called ME/CFS specialists. So Monbiot investigated and discovered it truely was the Greatest Medical Scandal of the 21st century.
We owe a lot of thanks not just ot Monbiot, but to Tuller and the many others that fought these unethical conmen for so long. Finally the story is going global
That was such a good own goal, and yes, we owe a lot to George calling it the greatest medical scandal is such a gift.
Covid does something to the “old” bits of Epstein Barr … I think that’s tied together . I didn’t get vaxxed because I thought the chances for getting Guillane Barre were higher if you had previously had Epstein Barr.
Thank you for explaining this about Mobiot and Tuller. They are HEROES!!
George Monbiot and David Tuller among THE BEST advocates we've had. They deserve some sort of Nobel Prize for their work for pwME!
@@BrokenBattery I think it was actually a female MP in a UK parliament inquiry into the ME/CFS PACE Trial who coined the phrase. I might be wrong though. But I'm pretty sure it was used before Monbiot
I was an athlete who got mono and kept running. It killed my immune system, turned into ME. Having a bad mindset that I was lazy and getting right back to running on days I was feeling better only to crash. The lack of information on the disease, made my condition worse. Bad information made use not get treatment and made us worse.
But it made insurance companies happy.
Thank you for this. I was subjected to CBT/GET at KCH in 2003/4. I found the approach insulting, demeaning and bullying. It clearly wasn’t working and had the potential to do immense harm. I called the woman delusional and quit after 2 weeks. My GP (who thankfully was supportive) explained that my insurance payout may be dependent on compliance so I was obliged to return to this stressful program. When I said I was deteriorating they insisted on further sessions until I agreed it helped. As it was difficult enough to physically get to the hospital appointments with very limited energy this took all of 2 sessions. My self preservation strategy to be discharged was to cut out GET completely (otherwise I wouldn’t have been well enough to attend the sessions) and prepare a spreadsheet showing mild improvement. They should be held accountable for the bullying and abuse they inflicted.
💙
Simply insane that they coerced you into compliance by bullying you. It seems obvious to me that the people with the "psychological disorder" were the misogynist practitioners who would rather disbelieve patients and falsify their studies rather than admit their hunch was wrong.
I can't reply to the OP directly. What do all those acronyms mean? What are they talking about?
@@cattymajivget graded ecercise therapy
@@cattymajivget ... graded exercise therapy.
Cognative behaviour therapy.
Get graded exercise therapy
I’ve had this illness since 1987. I cannot begin to tell you how poorly I was treated. And yes, there was a lot of pressure for me submit to psychiatric therapy. The cruelty of this disease and its treatment by the medical community cannot be overestimated.
Main causes : caffeine abuse and depelted sexual energy
I was diagnosed at 17 in 1995. I fought to graduate high school and have been treated terrible by the medical establishment.
This is yet another example of patients being blamed and belittled for a genuine medical condition.
Perhaps because it’s women patients.
It’s what the medical establishment did to the German doctor that discovered washing your hands before surgery or delivering babies was good. They literally harassed him into insanity.
@@Shelleysnailit’s not just women who’ve been gaslit. Feel for ya’all it’s deliberating.
A horrible scandal indeed.
The attitudes have been pretty much the same in Sweden, causing damage to so many lives - mine included.
And there is still practically no help anywhere.
Thank you for sharing.
Sending love 🕊️
It’s even worse in Finland. One of our leading doctors on ME emigrated to Sweden after he got persecuted by the officials with no understanding of this illness. 😔 I thought it was a lot better in Sweden. Sad to hear it’s not.
@@YugeYun the solution is in orthomolecular medicine,,,, level up ascorbic acid and the minerals and other vitamins... it will work.
Ithink EDS ehlers danlos syndromes ,connective tissue syndromes are a genetic underlying cause of ME cfs.
After an infection.
Written about it in many fb groups and also to researchers.
Weak connective tissue, immune system mcas, vitamin mineral and enzyme deficiencys scarring clottin bleeding extracellular marix, homeostasis, and lots of other things involved mutations in genes.....
hypermobile EDS hsd....
@mariawallstrom4731 It's possible, at least for some.
Mistreatment of the ill is common. As an attorney, I know of eight cases off the top of my head where cancer patients were mistreated. Six were women, two were young boys with pediatric cancers, and their mothers were also psychologically abused. You see the pattern?
By the way, I met most of these cases socially. I represented only one.
I understand the amount of spoons this must have cost you to make, and I am eternally grateful ❤
Yesss! I've had to explain the spoon theory to all the doctors and nurses at my clinic and they say they've never heard of it before. The irony you ask? I'm a retired psych nurse with multiple diagnoses including sle, me, cf and hashimotos! I've known of spoon theory for years, even before any of those diagnoses! What do they teach medical "professionals " these days anyway?
Thank you for this, I'm tired of doctors telling me "Exercise cannot harm you", I finally feel like I have something I can force them to watch and review that might finally make them listen.
Give them a paper on it from the CDC too. They tend to like that.
It's seriously amazing that the CDC has come around finally. I never thought I'd see this in my lifetime.
At my last Rheumatologist appt, I told my doctor that I am concerned that I might have CFS. He immediately said you need to exercise. Completely tone deaf.
@@t.h.8475 How blinking annoying! A similar thing happened to me when I saw my doctor in the street and I said the same thing to him, to which he replied 'well, there's no point coming in to see me as there's no cure'. Oh, thanks, lol.
Dr's told me to run more ...I would get weaker and weaker the more I tried.
Herbs and prayer healed me
@@DevonExplorerthere is a cure
I was cured. It's not a quick fix and takes tremendous discipline, but you can get your life back
This was a grand program and thank you for opening up this new dialogue.
I'm still told that my chronic pain, stiff muscles, frozen joints, inability to sleep and the exhaustion I feel is a mental health disorder.
You bet I'm depressed, put yourself in my shoes for a few years and you'd be depressed and suicidal too.
I'm running out of drive, I live only for my grandkids at this point. But, they don't see me as I was, they don't see me at all, so why am I still here?
Sad state of affairs. The medical community has abandoned people like me. What a horribly lonely place to be.
Doctors defend their treatment, while people suffer. What ever happened to," Do No Harm"?😢
Please know that I really understand and have felt the same depression, questioning my having any reason to go on, not feeling any worth, but please remind yourself that your perspective is off and we need to give ourselves grace and even though we can’t do all the things we use to, or all the things we want to, we can stop pressuring ourselves and accept what we can do when we’re able and when we’re not, give ourselves permission to rest and find whatever we can do, listen to music, wherever brings peace and joy. Pray, listen to the Bible, books, encouraging and motivating things, watch fun movies, open the blinds and let the sunshine in. I’m sure I’m far off from encouraging you, but hang in there and allow yourself smaller moments of what can help you . ❤
Been there for more years than I can remember now definitely earned that t-shirt! 😫
You are definitely not alone self care and avoidance of all things that drain my limited energy resources are no 1 on my list.
But sadly the years of not being taken seriously despite a diagnosis in 1995 the GET protocol and an absolute lack of knowledge or understanding from doctors have taken a heavy toll on this already fragile existence 😥
Hoping as ever that the right treatment is available soon 🤞
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
The "wellcare" is actually sik care. You must be your own doctor. Any question you have youtube or Google or AI csn guide you. It's starts with food. They are poi zoning us. Juice, eat organic. All supplements you need you can find info online. We must save ourselves. They won't.
@@aleyabellydance2 IT starts and ends with our diet, but the internet is full of crazy misinformation. We need fruit and lots of raw food, and stop eating rotting flesh and dairy. So obvious.
Thank you so much for this video. Veteran sufferer of M.E. here. GET has been so damaging for so many, including myself. I will be sharing this video. Hopefully, others will do the same. 🙏
@@abigailporter2933 Thanks so sorry you were harmed by GET
What is GET?
@ Graded Exercise Therapy
Wow.
I was diagnosed CFS back in the early 90's, was recommended GET but couldnt do it, after years of bedrest i slowly improved and got on with life. Rediagnosed last year and was pleased to see progress, that GET was no longer recommended and ME/CFS was fully acknowledged as being biologically based. Yay!
Well, in that interim 25 years, I had no idea all this nonsense was going on, and how recent the change actually was. Horrendous treatment of patients. Wow. Thank you for covering this.
And it has yet to reach our doctors. Last year, even patients at Stanford (not Dr. Ron Davis') said that they were being treated abysmally just for having ME.
@websurfer5772 Sadly, attitudes tarnished by underhand tactics and misdirective research can take longer to catch up than accepted medical practice.
Same here. Since 1998.
Since 1995. I tried GET in about 1998 and I asked for this treatment. I'd already been ill for 3 years +, and I knew that the problem was something to do with strength and stamina. So I asked for a referral to a sports medicine clinic. GET didn't get me fully recovered but it got me to the next plateau in recovery. Here's the thing. I honestly believe that if I'd tried GET a year earlier the therapy would have killed me. There was some early research into ME that demonstrated the cycles in the illness and recovery. I can't find any references to that right now but the patients need to be firmly in the driving seat of their recovery. That's what the DWP does not want to hear!
@@GlasPthalocyanine Yes, as long as we stay within our 'window' we might be able to use GET and have it work for us. I did it myself on my own when I was in my 20s and I always hope I can do it again. This makes doctors and health agencies even more confused, which really puts us in a bind having to try to explain and educate everyone everywhere we go.
Most people cannot grasp the multi-dimensionality and continual fluctuations of ME.
Wow much needed patient centred documentary. The discrediting of patient’s experience is unconscionable. Here in Australia, the aged care assessment for help doesn’t recognise ME at all as needing reasonable adjustment. Same with disability assessment. GPs are openly hostile & disdainful. Where to turn to when whole “health services” are weaponised against sufferers. And being female makes one labelled “neurotic and hysterical” i.e. making it up/seeking attention/ exaggerating symptoms
Sorry, things are so bad in Australia
Also in Aus, I've been fortunate to be diagnosed by a wholistic doctor following a battery of tests (no pun intended), and a little bit of supplement support. That's it. That's all we have. As far as science that proves the pathology, I only know of muscle puncture tests overseas. Am looking forward to more serious scientific (and therefore non-psychiatric) work in this area.❤
Same here, and once the doctors write that in our files, including hospital files, it doesn't matter what your illness is it's always "anxiety". I've had chronic infections & injuries go untreated bc i was treated as neurotic. Disgraceful.
Yes! I've been diagnosed with fibromyalgia and polyarthritis as well as chronic fatigue (although nowhere near as bad as those poor souls who are bedridden), plus have had several back and joint injuries - including slipped disks, collapsed joints and pulled muscles - and i live with constant pain every day, yet the last time I saw a doctor I was lectured because I've allowed myself to be over sensitive! Un-bloody-believable! lol.
I am a complementary health practitioner who helps people with ME. They come to me for emotional help. I always explain that I do not believe this is a mental health condition, and that, like any other disease, releasing life stresses and learning to pace oneself can help with symptoms. Some clients have lost all symptoms, and some get improved symptoms.
It used to be thought that tummy ulcers are because of stress. I have never believed that. And now we know about H Pylori and NSAIDs. In one of my training courses, I was taught to help people with ulcers release stress! I was livid!
Thank you for speaking the truth. 🙏🏻❤️🙏🏻
I remember vomiting blood and passing out on a bus being 18 years old in 1980.
I did not get a single treatment for the chronic debilitaring stomach pain I had for more than 20 years.
In the 2000's I finally got 14 days of triple antibiotic treatment prescribed 4-5 times to get rid of the H. Pylori bacterial infection. Twenty years of pain being labeled as a stressed hypochondriac...😠
With all my heart I thank you George Monibot, this story has been a long time coming and you have documented it so well. As a very long term ME sufferer I burst into tears when I saw the title of your video.
Please people be aware that ME is not CFS, a quick look at Dr. Sarah Myhill will explain the differences.
Dr. Myhill who has stuck by her patients for decades and suffered at the hands of those despicable psychiatrists and the GME because she helps us. I am alive solely because of her.
God bless you George.
Easily treatable with d3 clinical doses.... What is wrong with your brain?
Eat more essential amino acids and essential fatty acids, the clue is in the name.
@cazzag8254 don't think he is interested as I mentioned 400 papers on vitamin D and ME/CFS and he just ignored it instead of helping others. This video is more of a pity party and poor me instead of helping himself or anyone else. Very selfish.
Based on on your comment, I went to her videos. She uses ME and CFS interchangeably. She also says long COVID is CFS. So where is she making a distinction between CFS & ME?
Yes, Dr Sarah Myhill is another true hero in all of this....refusing to give in despite multiple attempts by the GMC to discredit her and stop her from practising.
Thanx a million for this video 💫❣️
I was accidentally poisoned as a foetus by the highly toxic chemicals that crossed the placenta that my parents worked with...that was 1950...i was diagnosed with Fibromyalgia aged 9 & was told i had growing pains..i stopped growing at age 10 & still was in agony...at age 44 & almost dead i was diagnosed with MECFS at the Royal London Homeopathic hosp in Gt Ormond St..they medically retired me for the rest of my life as i could hardly move..at age 13 i read library books to try & fix myself with the right fuel..at the hospital i was given IVs of nutrients & EPDs i did brilliantly for many years until Austerity Cuts took my homeopathy away & all the treatments...with no plan B i stressed & then had a massive brain aneurysm haemorrhage & Tersons....still here! 😉
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
Oh, Stephanie. I'm so sorry to hear this. Very well done for hanging in there and I'm sending you much love your way. :)
The medical world thought Parkinson's patients were faking and called it the fakey shakies in the 1900s.
Excellent video. My daughter and myself have been living with ME for 25 years now. Whenever we find anything that substantiates and validates the reality of ME we always feel like ; see, we're not lying about this. It helps. Thank you Broken Battery!
The removal of the term Chronic Fatigue Syndrome is long overdue. It is misleading and disparaging and only serves to hinder progress in research and treatment for M.E.
I'm not so sure that will make a big difference - the psychologists who peddle the biopsychosocial model have changed the names they use (from hysteria to conversion disorder to FND to medically unexplained symptoms) but their core beliefs, that we are malingerers who aren't really sick, never changed. It's those beliefs in the medical establishment that need changing, otherwise switching to just ME as a name will simplify transfer their harmful theories. They'll say ME, but think "just fatigue," in the same way they say "medically unexplained symptoms" but mean hysteria.
@@eladnarra I hear what you are saying and you are right. Public opinion is changing though and in a strange way, we can be thankful for the covid pandemic, the sad fact that so many became ill with long covid, many more peoplle are seeing the illness for what it is. Getting rid of the CFS tag at this time would help shape public opinion. Not a big difference, I agree but a small win and we sure need the small wins
I wholeheartedly agree, but purely for NHS operational reasons. I am working on this very thing, alongside trying to get a cover-up related to the inquest into the public domain. At present Devon County Council is refusing to release the full recordings to me. This is unlawful and an indication of the extent of the issue.
I agree. I have felt for quite a while now that it would help professionals to understand the difference between ME and CFS. That what they were told about CFS does not apply to ME.
@@sarahby7399- I am so incredibly sorry for your loss Sarah. I followed the inquest and cannot imagine what you have been through and are going through.
Thank you for this video. I suffered for decades with this ailment. I lived in California when I first became ill. Went to numerous doctors who insisted I wasn't physically ill, but suffering from some psychological disorder. I went to both psychologists and psychiatrists who could conveniently come up with all kind of childhood traumas and other events that could explain my "mental illness". Unfortunately, it was true that I did have adverse events in my childhood, and I couldn't dispute this. How do you fight back on a diagnosis based on something intangible? I tried for over three years to push myself through this illness until finally I crashed for good. Unable to work, to pay bills and losing my insurance, unable to collect unemployment or disability, I went home to stay with my mother and see the family doctor. To add insult to injury, he told my mother that I was malingering. She believed him. I finally figured out how to pace myself and consume less refined food. I still struggle, but I stay current with the latest studies and keep most of my symptoms under control. I often wonder what my life could have been if only I had gotten the help I needed from the very beginning. Again, thankyou. Please continue what you are doing to get the word out.
I am a sufferer from 1991 after I had Ebstein Barr that was not diagnosed, I have battled this physiological attitude and attack from husband, children, doctors and friends for years…. I have had an up and down three decades, crashing at weekends just so I can work during the week in a continual loop. I fortunately have at least had a sort of remission a few months or if lucky a year before crashing again after the flu. I got COVID late 2022 and I have been struggling since…..getting into a cycle of flu symptoms for three or four weeks and a slow recovery after for several weeks only to repeat the cycle. This year I have had 5 cycles ending in shingles and flu type symptoms for eight weeks, becoming less able to stand and move around for even ten to fifteen minutes, sleeping more and just an overwhelming lack of energy from the moment I wake up.
💔♥️
This must have been incredibly gruelling to put together-thank you so much for doing so.
So disheartening and infuriating 🤯. My 31st year with M.E. and we are still no where with regards to treatment.
Thank you for the excellent video Adam! 🙏🏼
Sorry you’ve had ME so long 💙
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
36 years for me. At least a prominent Neurologist proficient in ME diagnosed this after onward referral by my GP who had already diagnosed ME. I saw a consultant in Infectious Diseases who called in another Neurologist. I asked for a referral to the Homeopathic Hospital which was no problem. This enabled me to return to a working life for a further 9 years until retirement. I have no clue what is happening these days. There are simply no services.
@@nellk2954 I can relate. I started experiencing symptoms by the time I was barely a tween. Now I'm 52 and still being handed what I call band-aid solutions and shipped off to one specialist after another, every one of them just as dismissive as the one before.
@@helensmith9153 what did that Homeopathic Hospital do for you and how were you able to return to work? That's amazing.
I came down with CFS/ME at 29. I was very athletic. I felt like a had a very small cold and then my world turned upside down. I dealt for years with quack doctors and skeptical family. I gradually improved over several years but never completed recovered. It's a lifelong journey.
Excellent documentary! Appalling behaviour from the med establishment. Unfortunately we are seeing it again on an even bigger scale over people who have suffered effects from a certain “intervention” of the last four years. 🙏🏼
@@websurfer5772Really? I’ll check that out, thanks! 👍🏽❤
Makes me wonder how many more of these scandals have yet to be uncovered!
Lol no
Doctors are very sympathetic and caring about long covid, as they are and always have been at vaccine injuries
Thank goodness I never sought medical help for my CFS. Heaven knows what condition I would be in now if I had. How cruel are these so-called doctors!!
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
I collapsed with a severe case of mononucleosis in 1977 from which I never recovered. Due to the excessive arrogance within the medical establishment in cahoots with the willful ignorance of our government agencies, I didn't receive a correct diagnosis for my disease until 2010 -- THIRTY-THREE AFTER INITIAL ONSET! During the first 20 years, I suffered through an ongoing deluge of shame, blame, and abuse all too familiar to people with ME, which led me to end contact with most of the people I knew back then. It's been only in the past decade that I've witnessed a sliver of change in attitudes towards ME, but it's certainly far from adequate and doesn't make up for the damage caused to so many for so long. I'd like to see a class action lawsuit filed against those involved in the phony psych research that has wrecked so many lives and led to both patient torture and murder. People with ME deserve to see some justice served in our lifetime.
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
HERE HERE
Thank you for this presentation. Perhaps some doctors are being educated properly about this illness, which for years was not covered in medical schools.
One other item that I found is that there are 3 diseases that have post exertional malaise - multiple sclerosis, myasthenia gravis, and myalgic encephalomyelitis. This means that neurologists were already aware of this symptom, but went along with the psych idea even when they saw it in us.
You forgot fibromyalgia, there isn't much difference.
Fibromyalgia doesn't exist and it's just another way to blame us for our illness and force us onto off label black box drugs like Gabapentin
And Long Term COVID-19
How does it benefit non-psyche specialists to go along with labeling it a mental illness?
@@maramclaine830And long term of several virus infections (Epstein-Bar, Cytomegalovirus, Q fever).
Does anyone know the difference between long term viral diseases and ME?
Well explained, thank you. It's scandalous how some "specialists" treated patients inflicted by this illness. A friend of mine is suffering from ME/CFS and I sent her the link to this video.
@@lyarrastark6254 🙏
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
I was diagnosed with fibromyalgia in 2020 and recognise so much of the misinformation and lack of real information based on research… it’s very frustrating when you feel so stuck in your own body and physically unable to do anything yet being told you have to keep trying as it’s mostly in your head. I hope those going through anything similar has good support and help when and if needed 🖤
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
@@allolobophorus a theory I have why carnivore works..because it has residues of ivermectin and other parasitides now found to cure these symptoms and also xancers
I'm scare to death met her
The humiliation and insulting was n always nonsense n nonstop
Imagine
Confident
Confirmed Belo believer
Geee 😂❤
That's WHY the rabbits head only have one info n proposal
Get DONE clean up
@ I’m sorry but I have no clue what this means…
Thank you for posting this! The gaslighting has been so traumatic. I have medical cptsd because of this. So glad the truth has been proven.
Battling this since 1988 at about 38. Has really ruined and limited my life no matter whatI do or how hard I push against it. Did manage college barely in health education. Started facilitated support group at hospital for 23 years. Have study published in Journal of Musculoskeletal Pain in 2000. But it’s been hard push all along spending many days and nites resting and in bed. Days I will never get back. It is a thief of life. Guess I will die before finding a cause or cure. So sad. At 70 not much time left. CBT is B S you can’t think this away, if only.
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
Great job in elaborating upon the main points of George Monbiot's article. We definitely need more investigative journalism to highlight this issue for the scandal that it is.
I am a survivor of a sleep-breathing disorder called UARS, that has symptoms that overlap with ME/CFS including PEM. I found relief from the symptoms by supporting my breathing with a ventilator. I was extremely lucky since it was all just based on a guess, and all doctors except one were effectively sabotaging my health, much like what is shown in this video.
try some coQ10.. it may help with oxygen hunger, and creates a feedback loop that enables the body to then utilise oxygen to help gain more oxygen, and diminsh breathing disorder causing oxygen depletion to begin with, I believe it is definitely connected to the deficiency of coq10 an essential antioxidant needed for the heart and utilisation of oxygen.. that the sleep apnoea industry is profiteering from at present
@@wendyg8536 You misunderstand, oxygen has nothing to do with it.
@@cebruthiusOf course it has, beside many other causes.
I was sent to a psychiatrist, who sent a report to my insurance company with not only my name and address but also another person’s showing the same report was used for more than one person. Luckily my company supported me and fought it for me. That was 25 years ago and although I now have fibromyalgia, with a good deal of pain I am no longer exhausted all the time. I’m one of the lucky ones.
thank you. This confirms my experience. Last spring I ceased all conventional medical care b/c it was not helping, the side effects were worsening my ME and the stress and psychological harm of being constantly dismissed and minimized were harmful. After 9 months I'm almost back to my previous level of disability before I gave conventional medicine "another go". I don't feel "better" compared to my baseline when I stop treatment, I just don't have the added on worsening health factors of pursuing conventional treatment. It's sad that that feels like a win.
Congratulations,.... that's Great News!!..... Is there any specific treatment that caused the turnaround??.... Currently suffering and would be interested in Any information I could possibly use,... Thanks in advance for Your kind Co-operation.. Blessings.😊🙏🙏
Thank you Adam, (Broken Battery)some of the lead players in this appalling scandal make me despair for sections of humanity. I'm glad that yourself and quite a few M.E. activists are still running with this.
They have obviously been controled and supported from above and are stiil, it seems, hanging on in there.
The Psyches should never of been given control of this devastating condition but their masters deemed it necessary to have pet Psyches in place in order to perpetuate the myth that this was not a chronic physical .
condition
Now that it is firmly recognised for what it has always been a physical condition it is only right that they are removed completely from any position if control.
I suspect though that that won't happen easily as it wouod basicaly be an admission of official Gaslighting over decades.
If they do stay in position then they should be firmly ignored. Certainly their leader S.W. has no credibility outside his supported Cabal so his honours should be recognised by history for what they are, belongs furmly in the discredited knight category
Errata
1-Forgit to thank BrokenBattery, thank you
2-3rd line, f irst word 'They..' is a reference to the Wessely Cabal/Cult/School
It's to cover up the fact they poisoned us. As they are still at it, so don't hold your breath for change. They like fast and slow death. Slow is more lucrative for the Industry. People with severe illness and no validation of it
spend a fortune trying to get answers and trying to get treatment. It's evil beyond a lot of people's capacity to face up to. The best natural approach is rest, detox and reducing harmful chemical intake such as sprayed fruit and vegetables. Clothes, cleaning products, personal care items, plastics etc...water, air...Organic and natural everything helps reduce exposure to more poison. Avoid breathing in all fumes as well. That has helped support my body best. For those a bit lost start there.
I had a severe case of Mono back in the 80s. I barely could work, but did after an extended time off. However, I had no life other than work and feeding myself. I was terrified when I could barely lift my hand to turn off the alarm for work I was diagnosed with CFS. I made a cross country move with my husband and became a "housewife" for months until I finally refused to live this way and pushed myself to do more every day. I still suffer low energy and have much pain. But i have given up telling Drs of the former diagnosis. The only things that have helped me was juicing organic fruits and vegetables, eating as clean as possible and resting when I need to. Mostly, I am just exhausted and at almost 70, i doubt anything will change for me. I do hope they figure this out. It is real and not a psychological disease. Yes, CBT is great for managing the deficit of energy without becoming horrifically depressed (maybe), but it is not even remotely required. A prescribed exercise program would have made things soooo much worse for me. May drs and nurses be moved to promote research.
It might sound crazy, but try a carnivore diet. I had chronic fatigue for years and it was gone in a week once i started the diet. I wish someone had told me years ago. I feel like i missed so much time with my first child because of always being exhausted. Luckily he's still young and now i have all the energy in the world!
That helps mithocondria. Also agree.
Listen to your patients!
This is incredible Adam 👏 👏
Thank you so much for taking the time to make this. It's amazing to see the scandal timeline set out so clearly. It would be perfect for a TV channel to pick up and make a special from it.
Thank you so much!
Thank you for this. I recovered slowly after ten years. My heart goes out to all people with ME, Lyme disease and long COVID ❤ . The way this was hijacked makes me angry.
I was told I was imagining it. That was in the late ‘80’s after my daughter was born. She is about to be 40. Still being told there is nothing wrong with me.
Tnx for researching the history of this travesty and creating a documentary that explains how the prejudices began. Everyone with this illness needs psychological support to cope with all of the losses and issues it brings, but that is different from saying that those psychological issues are the illness. No other illness requires one to defend one’s character. To not be believed when saying, “ You are hurting me.”, is a kind of dehumanization that crushes the spirit of healthy people. I hope the perpetrators in this video become aware of what harm they have done and live with the shame for the rest of their days because the patients lived with the damage for the rest of their days.
There is evidence that "Chronic Fatigue Syndrome" may be caused or partially caused by a lack of a good gut microbiome, we underestimate how beneficial a healthy gut microbiome can be for overall well-being
Especially lactobacillus reuterii regarding small intestines
Thing is there seems to be little to no support or knowledge with gut Microbiome within general practice. Even a gastroenterologist seems limited in their treatment protocol or just labelling everything as IBD or IBS even when symptoms no way mimic those two broad conditions.
i did dr sarah myhill's protocol; paleo-keto, vit c to bowel tolerance and other supplements.
Its a protocol which rebalances the gut microbiome, starves out pathological micro-organisms, heals leaky gut, sibo and candida overgrowth. So many of my symptoms went away from doing it, i felt i had rocket-fuel for energy compared to before, i even felt id gained IQ points!
I was 100% consistent for 3 months from oct 2018. I went from contemplating getting a wheelchair to 30min daily walks and yin yoga. I have never been bedridden since, nor sofa bound and i had had several months long episodes off n on before. I was even unable to understand or speak language. Nowadays, i dip in n out of keto, mostly paleo. Pizza is my enemy XD
I doubt it's a cause. Just another injurious symptom. I use probiotic drinks and fermented food to manage my symptoms and reduce the damage of activities. However, it helps only to manage the issues. I have been put through pt repeatedly. My last time was water therapy and it was still too much to go as regularly as they wanted me to. My sessions ended up getting pieced out over 3 months insted of the 5 weeks they were going for. Afterwards I was still dealing with high physical stress symptoms and low energy. Still working on my cognitive recovery 2 months later. That's with switching back from a vegan diet to vegetarian so that I can add soft cheese and yogurt to my (pre-) probiotic intake. This illness will not correct itself from any one area of treatment. If gut issues were the cause then correcting the gut symptoms would heal the problem. It's just another regiment of treatment from my experience. Combined with B vitamins it's the most helpful for reducing damage during exertion, but not at curative. My cognition still suffers greatly with any amount of stress even with all the gut friendly dieting.
@@AlluminaOnyxia ANS dysautonomia is the cause and there's maybe 9 different sub-types. Many of us have several sub-types.
Myself i fall under posture stress, gut stress, environmental stress, chemical stress and psychological/social/emotional stress = ANS dysautonomia = MECFS symptoms and diagnosis.
It takes a consistent, disciplined, yet unhurried, no pressured 'multi-pronged' approach to heal.
Like a ship with 9 anchors, it wont move if you only life one up at a time;
*Identify potential stressors from your entire life which likely contributed to the 'perfect storm' of MECFS
*Reduce symptoms with avoidance, alternatives or actions (such as diet for gut symptoms)
*Teach and prove to subconscious you will change and start looking after yourself to keep yourself safe, be it learning to say no, having boundries, food and drink, chemicals, cutting toxic people/things/behaviours/thinking patterns etc etc (long list)
*Rebuild body and resilience to stress with extra non-essential movement and meditative techniques
*address any trauma
*desesntise to stimuli you dont want to avoid.
*Reintegration into real world, socialising etc while maintaining discipline and habits that have helped
Theres different stages of recovery and what works at one stage wont work in another.
I had a “Doctor” say, “well can’t you get massages?” “Are you exercising?” and so on. This was during a medication review the government makes you have every 12 months, (Australia) I assume because they think somehow it’s magically going to go away, anyway the review is to be done by another doctors opinion, so not my usual doctor. I was so mortified. This fool had a Scottish accent and is at least 65 years old. No prizes for guessing where and what era he did his training! ✌🏼Thanks for the information, it explains everything!🏆
WOW, I'm so impressed and with so much gratitude of your efforts to put all this information together, for a caregiver this is very educational and I will share . Thank you.
@@beeholtzclaw7935 Thanks much appreciated 🙏
After several years of feeling gradually worse and worse with many of the typical ME symptoms, I finally crashed in 1989 and was eventually diagnosed with it, no thanks to my GP who told me I was imagining it. I spent 5 years off sick from work and have been dogged by the illness ever since (I am now 70 and can’t remember what it was like to feel well). Life is a rollercoaster. I’d class my ME as moderate rather than severe, but still life-changing and has been worse over the past few months, curiously since I had the 2024 Moderna Covid jab (may be just a coincidence andI’m not an anti-vaxxer, but seems odd). What I find with medics is still scepticism, in spite of the NICE guidelines and NHS acceptance of it as physical. I’m writing this at 2.30 a.m, lying in bed exhausted but unable to sleep and knowing that, when I do eventually get to sleep, I’ll wake in the morning with flu-like malaise, little or no strength and feelings of hopelessness. I seem to tolerate any exertion less and less.
Thank you, Broken Battery for all your excellent work. I hope you are well (ish)
Thanks, hope you are doing ok too
I am so sorry for all the ME/CFS Patients. I really hope research is going to find something to help 16 Million ME/CFS Patients in this world. Yes, there are 16 Million diagnosed ME/CFS Patients and we don’t know how much more are not diagnosed, so I assume there are way more.
After the plandemic fiasco, I doubt it. I've lost faith in our institutions. 😢
WOW. I am so appreciative for this video
Brilliant analysis and reporting!
The very reason I completely mistrust anything the medical establishment authorities say - they are a bunch of narcissistic, psychopathic, compulsive liars.
The needless harm they have caused to society is incalculable, yet not one of them is in prison, where they belong.
Your work is BEDROCK and SOOO USEFUL!!! I'm ("mildly") severe, mostly bed tethered and sooo grateful for this video among so many others. WIll be using your materials in my advocacy with disability leaders, home care lobbying, and in demanding our local hospitals stop starving and neglecting us to death. TYSM!! 🙌
Thank you glad they are useful and thanks for sharing
How .any of us are listening while horizontal?
Yep.
And in hospital
✋🛌
Yes. Surgery 6 days ago as well.
@@elizabethgrace6677 ♥️
My husband is dying slowly but surely, nothing has helped him. To be so helpless in 2024, with all the supposed and real scientific "advances" makes it ever so much harder.
Could be Mast Cell Activation Syndrome or another mast cell disease. A dietary supplement that may then help is Quercetin, see me-pedia Quercetin.
Ask his doctor to try an H1 and H2 antihistamine for a couple of weeks to see if it helps. The dose may need to be a little higher than what is recommended over the counter.
Never take any medication without first consulting a doctor.
See Dr Shepherd on Treating Long Covid with Histamine Receptor Antagonists
This is an ABSOLUTELY BRILLIANT documentary on ME. Watch it if you’re new to the ME world.
I'm in partial remission on the carnivore diet.still need tons of rest and find formal employment a bit risky, but at one point, I thought I would have to live lying down for ever. 🥰
I hope you keep seeing improvements.
❤❤
I have a friend who has responded really well on carnivore. He’s in his early 60s very active. Be mindful if you are going to do keto and watch oxalates.
You'll last a few more months then your body will give up and cave in to various meat-caused diseases. But you go ahead and prove my point. Monkeys don't eat meat.
It’s because meat is high in nicotinic acid (niacin) and iron. CFS ME is a mitochondrial issue, you are severely nad+ deficient and most likely iron depleted. You need to supplement with nicotinic acid (flush niacin) and iron (even if you have ok iron level showing in blood test it’s not getting into cells,if this is the case you need lactoferrin also).
Should have said nicotinic acid restores nad+ levels in mitochondria/cells via the pries handler pathway.
If there's anything good about the horrible time Dianna Cowern (Physics Girl) has had since she got ME/CFS, is that her, and her husband documenting her illness, and her being such a well liked TH-camr, has brought a lot of awareness to the condition. I knew next to nothing about it before she got ill. Really hoping that awareness, especially among doctors, will improve, and fast, and this condition will get a proper boost in funding for real research. Thank you for this video, it was very informative, and on an important topic!
After 12 years of seeking an answer bc I gave up getting a solution 5 years ago I have concluded that the "profession " knows a lot about a lot of things in regards to the human condition BUT what they will never admit to is that there is a hell of a lot they know NOTHING and will blame the patient... which is of no assistance at all!
Brilliant documentary that needs to be aired on national TV, thank you 🦋💙🦋 (I believe I’ve been permanently harmed and disabled by GET). Diagnosed with M.E. 1995. Neglected and abused for years due to this.
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
Exceptionally well produced and organised! You successfully managed to avoid getting too bogged down in the weeds. Unfortunately I knew all the information already through living it 😔
@@jennyhorner Thanks Jenny 🙏
Absolutely brilliant Adam. I can’t thank you enough for this. Totally professional and rigorously researched it combines the facts with the relevant film clips to back up the evidence.
thanks for this Adam. I am still working through thousands of pages of evidence from the inquest - much of which Devon County Council insisted on covering up (ably assisted by reporting led by the Times). Once I'm done, I would be interested in producing a sequel on how NHS has been actively blocking treatment for pwME since the NICE review. Others with very severe ME are interested in contributing. A project for 2025, if you're interested.
Thanks, Sarah. Glad you’re getting some help from the times. I’m thinking of taking a break but that sounds interesting will keep it in mind when I start to think about what I do next.
@ the Times is not helping me. It IS helping the cover up.
Thank you for your hard work. My extremely supportive GP was unaware of the tragedy in Devon until I informed her. That shows how little publicity an avoidable death in hospital receives
Thanks a lot fo all the work!!
I've got the diagnose 30 years ago.
We all need someone who will spokes for all of us.!!
Thanks again!!❣️
Thank you so much for this excellent explanation of the ME Scandal. I hope that people who are ‘not’ aware of how despicably people with ME have been treated for decades will watch this.
As your film shows, the politics around ME go back decades and are complicated, but you’ve done a great job of breaking down the history, highlighting the most relevant points in a very watchable format. Great work!
Thank you for this. My local long Covid service appears to be following this flawed approach of graded exercise therapy and psychological support and I am so angry they are making me feel worse. They don’t even seem to keep up with any research and are just on a cushie little number as far as I can see.
A tip if you have LC; See B r y a n A r d i s page/videos about this!
They are on the CDC autopilot and likely put in place cookie cutter protocol, outcomes be damned. Not subject to a law suit if the protocol is followed. Even if despite the patient. Medicine are not trining to cure people any longer. They only follow the algorithms to keep them alive - this way patients remain as clients. Job security.
Yes, can very much confirm everything in this video. ME patient here. Was almost put into a mental health hospital by my doctor. Didn't happen in the end, luckily, but this illness is so misunderstood in all of society.
An important, well explained, and professionally produced video, thank you very much for all your hard work on this.
Thank you for this video. I sort of knew some of this information already but I had no idea how appalling it actually was. I got ME in 2014 but thankfully had already found information that GET doesn't work and can make you worse so I refused this when I was diagnosed. What makes be so angry is the small number of people that have put ME research back by decades. We potentially may have had a treatment or even a cure by now had these people not have pushed their bad science on the world, and aggressively defended it with lies. They are more interested in their reputations that the lives and health of people suffering with an incurable illness.
frustrating being told depression is why I couldn’t get up to shower for 5 days. now I am now depressed BECAUSE i couldn’t get up to shower for 5 days. I don’t know if i actually have ME or if it’s “just lupus”. I had always had extreme insomnia as a kid, but now there are some days where I am literally in bed all day, so tired.
how obnoxious that the “treatment” was more exercise, the opposite of helpful.
*This is another example of why psychiatry/psychology should NEVER be allowed separately from neurology and immunology. Separation of the "mind" from the brain and body is a specifically modern, facetious conceit.* I lost someone at age 34 because psychiatry ignored the fact that his concussion in a car wreck had done physical damage, which they tried to doctor with their band-aid/plaster psychiatric "the mind is independent of the body" bullshit.
I am a retired GP. Helping patients with ME was very frustrating. All we had to offer was what the experts advised, ie graded exercise, CBT +/- antidepressants. What I have learned about mitochondrial toxins since retiring, I would certainly suggest cutting out fructose, ethanol, trans fats, and seed oils. All of these have been shown to be mitochondrial toxins, and can all be avoided without putting your nutrition at risk. I don’t know if it will work, but it is better than sticking to the only current recommended treatment, which seems to be useless.
Thank you for sharing your perspective as a retired GP. I’d like to point out that the video specifically discusses the lack of evidence for treatments like GET and CBT in ME, as well as the harm they’ve caused to many patients. NICE and the CDC have withdrawn these treatments because there is no evidence they are effective. I’d encourage a closer look at the flawed research and patient experiences highlighted in the video. Regarding your suggestions about dietary changes, I wouldn’t encourage anyone to follow this advice without evidence to support its effectiveness.
@ There, in a nutshell, is the problem. The only recommended treatment has flawed evidence, but you don’t advise trying something without any evidence. There is certainly evidence that all those substances are mitochondrial toxins, and really, a diet without alcohol and fructose is pretty easy. Trans fats are now banned, and the main culprit in seed oils is thought to be linoleic acid. Olive oil, coconut oil, dripping, and butter all are low in this, and are easy substitutes.
If doctors (GPs) can only recommend treatment with a strong evidence base, until any is found, what can we do? No specialists are interested in ME, and while being listened to is important, it doesn’t get the condition better, so why not try it? What is there to lose?
@@BrokenBatteryit is very good advice.
Mitochondrial dysfunction has good research, funded by the government.
Also by dr myhill and usa dr.
It defimately helps.
Diet is very useful with mcas which many have too.
So there is research.
Just unable to post it here.
@@Threadbow Myhills test could not be replicated. Mitochondrial dysfunction may be involved but there isn't any evidence treating the dysfunction helps. Some people with ME do get MCAS but that is separate from ME.
meassociation.org.uk/2019/08/independent-researchers-determine-mitochondrial-test-is-unreliable-and-should-not-be-used-as-test-in-me-cfs-09-august-2019/
Do you know whether fasting long enough to get to the full on autophagy stage (72 hours, iirc) have helped people with ME?
Because supposedly this is like the ultimate deep cleanse on the body on cell level?
✌️
Outstanding work, thank you for your energy!
We are dealing with this disease for years and I still cannot pronounce it properly.
My congratulations to your seemingly effortless achievement!
I have had ME for 19 years but also have dyslexia so have never got my head around the name. My original doctor was good but now retired. Subsequent doctors reduced my condition to “fatigue” on sick notes or correspondence. So demeaning and unhelpful.
@@kategarland7654 I am so sorry. We also have such stories. Don't give up to find a good doctor again. There are really good ones out there that know things about me/cfs. Make sure you check-in via email or phone before you visit, so you know whether they know the disease! Also bring someone to the appointment that helps you explain things, so you can pace your self better. Also, ask in your local self-help group for recommendations!
All the best!
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
I've been suffering for years with Chronic Fatigue along with other symptoms.
My Doctor just monitor's me.
No investigation, no follow ups and it's so difficult to get an appointment at my Surgery that I've given up going. This is probably due to my PTSD and Chronic Depression....
When I get a good day, I do as much as possible, and then I'm laid up , only going to my local shop for food.
I have to take regular rests in the 700 metres i walk.
I'm used to being active, so this makes my Depression so much worse...
Thats exactly how i feel, once being very active, now if i do to much one day i suffer for the next three or four, its so frustrating for us. Nobody understands.. Doctors are useless, i have stopped making appointments and even if i did try to make one it would be 6/7 weeks before i could see one. We are being left. the whole system is broken.
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
Try carnivore. Seriously. It cured my chronic fatigue that's I'd had for *years* in about a week. It felt like a true miracle.
"When I get a good day, I do as much as possible."
That's not a good idea. It is essential to pace with CFS.
I was diagnosed in 2012 following years of gradually declining health. I was a fit and very strong individual, a university educated paramedic working for the West Midlands Ambulance service. I was was medically retired from my career that I loved in 2016 but refused a pension based on the Nice guidelines who used the PACE study. As a result of this negligent malpractice patients have been left without proper research the data collected is corrupt and has to be restarted, meaning no meaningful treatment for another 3 decades. In addition people have died from ME with some of them recognised officially, which is very very hard to do. Usually the medical profession will attribute the cause of death to other factors rather than the underlying problem.
I've newly been diagnosed with ME, and in Finland where I live it's basically considered a "functional" disorder. I'm currently in "treatment" at a clinic for functional disorders, the doctors there have told me I will only heal if I agree with them on the causes of the illness and I've been told multiple times that I will not get better if I don't believe they will heal me. The doctor told me that I will be healed and I have been offered CBT and group exercise therapy, there are no private ME specialists in Finland and I basically don't have any access to any care
there's risto roine who's a private doctor, a neurologist to be specific. he's mainly treating long covid patients but is very much aware of the situation with ME. i think he was part of a group trying to create new guidelines years back for ME and became aware of the situation through that. but he's pretty much the only doctor in Finland who's very clearly on the side of this not being a functional disorder and who keeps up with the research being done
@@nope7576 oh damn thank you!! I still probably won't be able to go see him since I'm poor as all hell but maybe I'll one day get enough money to go see him
Koita tätä: syö kuuri Axiluria (loishäätö) ja siirry syömään pelkästään eläinperäistä ruokaa. Maitokin saattaa olla haitaksi. Ei maksa paljoa kokeilla ja todella saattaa auttaa.
Thank you for this video, it gives hope and voices to those of us who are severely unwell with no chance of reprieve!
Apparently the carnivore diet has been able to reverse symptoms. Check out interviews on "No Carb Life"
Thank you. A great video. It would be fantastic if this could be a TV documentary and also if we could know how many people actually have ME and how the illness progresses as no one follows or manages patients with ME so there is no data.
Thanks I hope it’s used by journalists and doctors as a resource to learn about the history
@@BrokenBattery 🙏
Raelan Agle has a TH-cam Channel that profiles how many people have recovered from ME. I recommend anyone with ME review these discussions to see if any of these success stories resonate with them.
Thank you for such clear and informative video. It is very sad to know that because of certain people who probably will never face any repercussions for their actions, many have suffered as a result.
Thanks for your in-depth research on this often shoved under the rug illness!
This information proves in matters of health we are truly alone.
just want to thank you, Broken Battery, for putting all of this together. i’ve not seen another video of this quality and breadth! this is a great service to the ME community 💕
Thank you 🙏
I was called lazy by a doctor who refused to give me sick leave so that I could rest and recover. Not only do I have the ME diagnosis, but also hEDS, POTS (both undiagnosed due to lack of belief in them by doctors) and chronic dehydration and at that time Lyme disease. I had passed out twice and was shaking and crying. But I was just lazy.
I've had doctors laugh at me saying ME is made up.
The damage done is horrendous and long lasting.
The US has recently signed ME with it's own ICD code so it's no longer a vague "post viral fatigue".
WHO should also implement this code.
This is just as bad as the whole "vaccines cause autism" bs.
This one goes straight to the All My Homies-playlist ❤
Thank you for reporting on this.
Thanks. Phsyc doctors has done harm and should be removed from ever holding a job in health care. Ret nurse Norway
Who is watching this video while they are affected or wondering about Narcolepsy?
I was diagnosed with Narcolepsy in 2011
and now is 2024
Imagine being so fatigued that you get a moment of relief by not inhaling because it takes so much effort. And the muscles in your neck permanently flexed, no way to get them to relax. For months to years. That’s me now. Anyone else?
Thank you for raising awareness about ME. I have suffered a much milder post viral syndrome that could be treated very easily. What kept me I’m a health spiral for two years was lack of a physical diagnosis due to my history of mental heath illness/drs unwillingness to recognise physical post viral symptoms.
Eventually it was my psychiatrist’s WIFE who helped me. She is a naturopath who doubles as his secretary and told me I needed to take steps to correct my gut flora. Symptom alleviation was immediate and within a few months I was both symptom and condition free.
Very important information. Brilliant video. Every doc should see it. So called "evidence based medicine" is the way to go, but is not without flaws. Top medical journals are not flawless. More modesty is needed in our handling of the uncertain and the unknown.
I feel lucky that during my medical studies I was taught to take seriously the patients own interpretation of sickness. One lesson. one Professor. Whos name I have forgotten but who I am thankful to.