One of the best videos I've seen on ME/CFS. I feel the same as you. A multi-pronged plan and stabilising the condition and working at getting the body in the healing state. I hope your recovery is continuing. :) Anyone living through and attempting recovery from this devastating illness is pretty amazing in my book. :)
Thank you for making this video, I have had m.e. for 13 years currently bedbound , I had some improvement with thyroxine which hekped for about 3 months but has stopped working. Going to doctor on Friday.Wishing other sufferers love and support through this hellish life reducing illness. X
I realize that many people who obviously don't have ME love to give us advice, like: have good sleep (Duh, I would if I could - bad sleep is one of numerous symptoms), exercise (you should know that exercise is bringing more pain). I am suffering from it for more than 30 years and tried almost everything out there. Drugs and supplements for depression that help some people, almost literally killed me several times (now I know that I also suffer from serotonin syndrome). My IBS and extreme fatigue disappeared after one group session for fibromyalgia sufferers with the energy healer Adam (Canadian). The pain, nausea, dizziness, bad sleep, bad cognitive abilities and weakness are still with me. Extreme diet with no meat, no deary, no sugar, no gluten, huge amounts of juiced vegetables, plus supplemented vitamins, plus cold and hot showers every morning with massaging for the lymph movement, osteopathic treatments... do work, yet is very, very hard to maintain. Because is the whole body that is affected, it must be something with the hypothalamus. I hope and pray for the cure. I don't visit doctors any more. There is no point.
just curious, have you tried adderall? or vyvanse? some kind of ADD medication? i think i have a mild case of ME and have been definitely diagnosed with ADD. I have been described by my family as "lazy" for years. I tell them i'm not lazy. I tell them that I just dont' have any energy to do anything. Pretty much all of my twenties have been spent inside my room, regaining my energy after a my day job of standing all day. None of my co-workers ever have the same complaints as me. But when I took some ADD medication, it sort of seemed like a fog had been lifted and for the first time in my life I didn't have to use pure willpower to push myself through the day. Anyways, I know your comment is four years old, and you said you've tried anti-depressant medications (and i'm familiar with serotonin syndrome which can be deadly) but I'm curiuos if you're tried stimulant medications used for ADD. I only stopped because i know that I will eventually get acclimated to the dosage and getting off the medication leads me to severe depression. It's like something has been turned off inside of me.
So no meat processed foods and lots of vegetables actually help? I was thinking of doing this but I have a physically demanding job and don't think only vegetables and fruit would get me through the day. Whats the science behind this? Being processed faster in the body? Similar to a fast? I've considered taking a few months off again because I think my job is making it worse as well.
Lovely video content! Sorry for chiming in, I am interested in your initial thoughts. Have you researched - Dinanlinson Rebooting Health Approach (search on google)? It is an awesome one off product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some incredible things about it and my friend at very last got excellent success with it.
Excellent Video! Excuse me for butting in, I would appreciate your initial thoughts. Have you tried - Dinanlinson Rebooting Health Approach (just google it)? It is a good one of a kind product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some pretty good things about it and my BF at very last got excellent results with it.
I congratularse you for getting this video out it sema to me like you have been doing a lot of research witch we all souls be doing and dont wait until our millones women I suffered Fibromyalgia &ME/CFS plus crónic Depresión for more than 24 years the last 7 years hace been a night mate however my faith in God have helped me thorough all the loads I carried been sick and a Single Mom of 2 kids like he says in Psalms 55:22 and Isaiah 41:10
I keep trying to add positive feedback into my life. And you have given me hope. In the early '90's I was exposed to very toxic chemicals, fiberglass, & many cancer causing agents. I thought I was dying. Coughing up blood, stones & extreme fatigue with sickness. I feel like a spinning wheel in my mind. But my body won't coropurate. I won't give up. I have 2 adult sons. And they give me a reason to live & to keep trying.😰💖
Thank you once again Giles for another wonderful and informative video blog. It came at just the right time for me, as currently having a set back myself, and it was nice to hear your encouragement, and re-affirm my faith that I am doing the right things to recover :) You present this information so well, it is a checklist of the same conclusions I have reached 5 years in, after much research and trial and error, this will help so many sufferers. You are an ME angel, spreading the word, THANK U!
Also, thank you for all these videos, they are really helping me understand what is going on, but most of all they make me feel understood in a world where CFS is very misunderstood. So thanks a lot. :)
@GetWellFromME thank you so much!!! I wish I would have joined youtube a long time ago!! There's such an amazing support network on here! Ive never felt more understood and supported as I do now. Id never wish my horrible symptoms on anyone but it really is nice to know I'm not alone!!!
I've not been diagnosed by an md but I do have this. After gallbladder surgery in 2003, my high energy left me. This is also when I stopped breastfeeding my son. The next year I had to have my uterus removed b/c I was hemorrhaging. That did me in & ever since then, I've then energy on my very best days of half a person. If I overdo it (which would've been nothing prior to all this) it feels like I've been run over by a truck the next day. I've had weeks in bed after going out for one day! I almost lost the ability to walk b/c I'd been in bed for so long resting. My brain is mush b/c I can't focus to read. Watching an episode of Star Trek is challenging on bad days. I try to engage my mind as much as possibly so I won't loose abilities. My biggest fear is not being able to think and loosing the ability to walk. Lyrical has saved me & given me the ability to be out if bed during daylight, gave a few good, productive hours & then regulate my energy, manage it appropriately & then build back some resemblance of a life. I have lost all my friends and my husband (not b/c I'm ugly either) so my life will never be what it once was, but I hope not to be so sad I hope for death, but joyful enough to be grateful for the good moments in life. There us so much beauty!
@GetWellFromME yes a 'magic pill' would be nice and easy, but no doubt an integrated approach is the way forward. Of course more research, money for research, and decent accessible help and advice for all of us would be fabulous, but what you are sharing here is pure gold in my humble opinion. I am sure you are helping many many people, for sure! No 'might' about it. Apologies for my enthusiasm, but it's awesome you are taking the time to do these blogs, and to take the time to think of others:)
Have any of you guys tried virgin coconut oil (VCO)? From my experience, at this state of body, VCO is the only nutrient readily absorbed for energy. It is also a broad antifungal, antibacteria, and immune booster. So, depending on your cause of CFS, it may help providing you the energy, or it may even cure the underlying infection. Unless, it is caused by tooth infection in which extraction is the absolute cure.
I and my college professor did study on exactually what you suggest published in Journal of Muscuskeletal Pain in 2000. I had it already than 15 years and I wrote all the questions. Some yes and no, some open end. I was looking for a common thread. toxins, jobs, birth place, genetics, diet, travel. I covered every base. Had 80 questions. As a lay person with only a b.s. degree I wasnt going to find a cure but hopefully a common thread. Well sorry to say never found one. I got struck severely after being healthy, no childhood illnesses other than normal. Was in Air Force. Have had almost 30 yrs. Now. Lot has got better but many symptoms stay. Age getting me now. For anyone watching I facilitated a support group at our local hospital over 23 yrs. I have personally talked to and interviewed over 450 people with this in my group meetings. This person knows his stuff so please take note of his ideas, he is on right track. I also suggest same things. But what helps one may not help another. But dont lose hope keep trying. While no cure there are many things that do help. Give each vitamin etc at least 30 days before giving up. Good luck to all.
@@DA-ln5kz well about the same all I can say at this point is getting old sucks that's a technical term for not fun. If I was still even 50 youth itself made even this illness easier to live with. Age alone has to many of its own bad symptoms to deal with. I would say for my age 70 doing OK. I still clean my house cook one meal a day for us and grocery shop once a week. Lots of friends have moved or died and it's hard to make new friends when you can't get out alot and I miss people. Just husband and 4 cats which keep me busy. I have many days lost in bed completely. Least 2 a week, rest I push thru. Was sure hoping my last 20 years there might have been help for us not a cure but something big to help. Really disappointed will be like this till the end. Been a hard life wouldn't wish on anyone. Best of luck to all cfs sufferers.
l also want to mention I had a bad case of mono when I was in my early teens. Maybe that contributed toward my CFS. I was an anxious kid too and I was diagnosed with IBS when I was about 15. I had a bunch of tests done a few years ago to make sure the IBS hadn't developed into something else. My IBS IS HORRIBLE. Ive noticed that a lot of people that have FMS also have IBS. I decided to research the liver b/c Ive heard that FMS is linked to toxicity and I'm actually shocked at what I found!!!!
Thank you so much, I have watched a few of your videos now and they are so helpful to me and also to help my family and friends understand what is happening and why. Thanks again
I finally got my tonsils out 11 months ago. I've had strep 1 time since my surgery which is MUCH better than what I'm used to but I've been sick and on antibiotics my whole life. When I was 13 my parents got divorced and a few other major life struggles happened that year. That's when the FMS symptoms got real noticeable. While other kids were wearing cool jeans and clothes to school I had to wear soft fabrics because my skin hurt so bad. I was always sore, tired and irritable. I finally got
@VivaciaDreams Thank you, hope you get the energy to watch them, and that they make sense!! Remember, the transcripts are available for you to read on my website too :)
- - I've Suffered Over 32 YEARS Absolute HELL with "Chronic Fatigue Syndrome"/ME/Fibromyalgia/"Severe Mental Impairment" here in Hull,UK; & I'll be Bloody GLAD/Relieved When the Scientist's find a PROPER CURE for it!!!! - I Can't find a girlfriend/wife Because of having them!!.... :( - Am Always falling asleep,etc,etc!!
I don't know if I'm the only one and/or if there are more people commenting on this, but I thought I'd just mention it in case I'm not the only one. I watched this video just now while I'm feeling very ill again (this week and last week aren't doing me any good) and that white background behind the list of possible treatments hurt my eyes like hell. Now don't feel guilty please, I don't blame you. I just wanted to mention it in case more people have this problem when feeling ill.
@ChibiYotsuba Thank you, I'm so pleased if anyone is helped by these videos :) That's a good point about the graphics, I guess thankfully my light sensitivity has got to be far less of a problem for me than it was, and I was going for mega-clear graphics! There is a more pastel shade version of those "slides" on the Get Well From ME Facebook page, if that helps :)
I think you are right. These are exactly the viruses implicated in the diastolic dysfunction found in ME/CFS and the massive increase in numbers of patients who have these illnesses occurred right at the end of the 70s; just when global travel increased. It also appears there are other minor subsets such as chiari malformation, organophosphate and chlorine poisoning, etc. My hyp. is that diastolic dysfunction combines with vascular problems to cause transient CNS ischemia resulting in neuro Sx.
I've got to admit I haven't read the book or read about that in detail (yet!), but from what I have heard, it can sometimes be a very useful approach for some people. It probably isn't the whole answer for everyone, but it's definitely worth aiming to eat an excellent diet, and the GAPS diet seems to have some pretty good general advice, at least.
Very good but telling people to not sleep during the day is not good advice. When your body says sleep, it's best you sleep, and remember that you're not the boss of your body until you are completely well and maybe not even then.
@JacquiSiobhanAston Thank you Jacqui, yes it would be wonderful if there were just one cure that worked, or that everyone were able to make a good recovery now - but I do hope that using the best combinations of possible treatments etc might indeed help each person.
@GetWellFromME Ah thank you. :) I'm not always that sensitive to light, but I am when I feel very badly. (I'm physically feeling okay at the moment by the way)
CFS/ME is just a label that's being put whenever there is no other obvious diagnose that doctors can come up with. (It does have something to do with an underlying infection, immune system issues, psychological factors, diet and so on. It's so complex to the point where not even the medical establishment can come up with a clear cause. I suffer from ankylosing spondylitis and CFS/ME, came up positive for lyme disease, suffer from chronic sinus infections and I've also been dealing with depression and debilitating anxiety for years ... The fatigue is obvious in my case - depression, anxiety, adrenals, ankylosing spondylitis, lyme disease and sinusitis are all known to cause fatigue.
It is a very well documented neurological disease stretching back to the 1930s, including the outbreak at the Royal Free Hospital in London in the 1950s and the Tahoe outbreak of the 1980s.
But those diagnosed do not follow the same classification. I think there are other unknown diseases, and often misdiagnoses (cancer, MS, epilepsy, cushings, lyme, glandular problems etc. etc. that actually doctors often pass off patients from these tests if they do have ME so they are caught in a cycle). and it obviously must include those with acute fatigue or mental disorders, since doctors have been pushing that its no different for ages: its likely these with the majority of full recoveries-as in a lesser misdiagnosis...... ...I think they've been diluting that original definition for a long time...
GetWellFromME Many of us know about these well known outbreaks, however, the CDC has not been able to pinpoint what is causing them! That is the main problem..
I believe and I could come off sounding like a conspiracy nut, but all people have to do is throw some pills in a drink and it dissolves and there is no trace of ever being poisoned! The pills I took dissolved in my mouth and I immediately felt ill!!! Now I have ME/CFS.
It seems like I've always had ME and FMS, although not as bad as now.When I was in 1st grade I was diagnosed with strep throat for the first time and I've had it atleast 3-5 times per year, every year since then. Now that I've seen this video I'm wondering if having "chronic" strep my whole life is what brought all this on for me. I was eventually told that I am a 'carrier' of strep throat, meaning that I will test positive for it even when I'm not showing symptoms-it's always in my system...
Thank you. Does brain imaging/ ctscan reveal any abnormality in hypothalamus or in any other related nervous system? Is the financial investment in finding any cause in part of brain help (needed ? )
My doctor diagnosed me with anxiety and IBS only ignoring all my other issues, then she tried Psychosis but because I clearly wasn't, the psychiatrist decided to go with Health Anxiety as if I just made it all up. She also promised to help me find a home, because I'm homeless (yes while I have had serious symptoms and getting worse) then wrote a letter going back on her word....no problem to her being homeless.
I am 55 yr old female and i want to die.i dont have an understanding dr never have for a lot of years no one will believe me.i've been to hell and back and still going the nhs have let me down ive had it for 27 yrs dont get good enuff days very often i need help but falling on deaf ears
GEORGINA O'NEILL Oh Georgia! You poor thing! That is absolutely horrible. I haven't had a doctor who knew what to do for me, but I've at least had ones who believed me. That must be horrible. It makes you feel crazy and question yourself when they say that everything in your blood work is showing up as fine. Just try to get more sleep (I was sleeping around 14hrs a day when I was told that). I have been to see naturopaths who have been much more sympathetic and helpful. I am not fully recovered or functioning, but I am light years away from my days of being pushed around in a wheelchair because I couldn't walk. Are you anywhere near London? I was watching TH-cam videos last night from a place channel called Freedom from M.E. Most of the people who work there have suffered and recovered from ME/CFS. If I was in England, I would definitely call them up for a free 15 min consultation like they offer. I've watched some, but I am going to watch all of their videos for tips and just moral support. I am very happy to tell you some of the things that I think are making a difference for me. Progress is slow and gradual, and I always have to be careful not to over do it, but I think I am moving in the right direction as time goes on. Even though I don't know you, I really feel for you and am thinking of you. Hope some of this helps, Emma.
Hi Emma,im in Scotland thanks for your reply. I get very bad attacks of inflammation, but my dr stood beside me and said you dont have inflammation hes cant know when i have it bad because i cant get down to surgery for blood tests to be done so if im feeling ok never usually am i have all sorts going on its no good going down at a push because i come out belittled and depressed they refuse to come out to me i can walk im in a catch 22 situation,thanks Emma for your kind words you are the very first person who understands,then you have to have it tho to be able to understand no normal even cares to listen my grown up children dont even want to listen let alone care thanks very much i've book marked this page maybe one day they will look at this they are all i have but they dont want me.Im used to that now too.xxxxx
Hang in there. Keep trying. I am over 60 had 30+ years. Severe. I take lots vitamins. Co q10 300 or more helps fatigue a little. Ginsing red panax Korean. Amino acids. Magnesium a must.. I have tried everything under sun. Had one good doc but she left to teach. Its always proving yourself. I ran a support group for 23 yrs at our hospital for people with cfs/ fibro. What helps one may not help another. Keep trying stuff. Do eat yogurt once a day if you can. If your gut is out of order nothing you eat or take will help. Good luck.
hi, I have experience with this disease, I travel by all the world and I noticed that "in north américa Quebec, there are many people who suffer from this disease, according to my research and my experience (I am a biologist) the main causes of this disease are the three following viruses: Epstein bar (mononucleosis), cytomegalovirus (CMV) and herpes. unfortunately the doctor not familiar with the disease or the virus, there are of aggravating other infections, toxoplasmosis ... ect
I HAD A CAR WRECK THAT STARTED EVERYTHING. I WAS BED FAST FOR 2 1/2 YEARS. (CFS) THEN I HAVE HAD ALL MY LIFE, NOT KNOWING, THAT I HAVE EDS, IT GOT WORSE. (EHLERS-DANLOS SYNDROME). COULD THERE BE A RELATIONSHIP BETWEEN THE TWO? I ALSO HAVE MIGRAINE, ALMOST ALL THE TIME. AND I GET CAR SICK. WHAT A WONDERFUL LIFE. ME+EDS= NO LIFE AT ALL.
Are you hyper-flexible? Or is it just your skin that's affected? I did a search of Ehlers-Danlos Syndrome and Chronic Fatigue Syndrome, and yes, there definitely seems to be a correlation.
A false statement in this video is this: "fruit sugar, the sugar in fruit". Ignorant people, including some doctors, often mix the word fructose, or fruit sugar with the sugar content in fruit. Fruit contain about equal parts of glucose and fructose and the sugar is processed in a way beneficial to health when eating whole fruit. Free sugar is processed by the body in a way that is bad for the health. There is no significant difference in fructose/glucose relation between fruit and usual sugar.
I am in a wheelchair so really i just stay home dont use it in house its too sore to be up straight i feel i need a brace round me to hold me up im in a lot of pain not been anywhere out doors for years except hospital.Im more sad my family hate me because im like this i'm not a burden anymore they always did only see me when they needed something very hurt because of it they think im lazy.
@Rhondamarie00 So sorry to hear you've been through so much with your illness and everything. I've subscribed to your TH-cam channel! Please do keep in touch via Twitter @GetWellFromME and @ GilesMeehan if you'd like to!
hello i am prathi i am living in India benglore my baby she is not walking talking she is brain is damaged her age 2year doctors sujest speech therapy physiotherapy but I am financial problem no give therophy
Well, they say that CFS normally occurs after an illness, such as Glandular Fever, and there's also a lot of theories that point towards imbalances in gut bacteria. Antibiotics play havoc with gut bacteria, so what if it's the antibiotics, and other meds that are doing the damage? That's my theory anyway. I took a drug called 'Roaccutane' six years ago, before I took it I was in the gym six nights a week, as well as working very long shifts as an aircraft technician. After I took it I was wiped out, and have been trying to recover ever since, receiving several different diagnosis', including CFS and IBS. My body is wrecked, and the bastard doctors who are responsible aren't interested, they just tell you to rest as much as possible, well, I have a life to live!
IDK i vastly improved when i was receiving lymecyclin/tetralysal, a different acne drug from what you took. I also hear some theories related to glandular fever, that if its post-glandular fever its the EBV virus. In fact most people have a dormant EBV virus, they are carriers, so it could be related without coming to full blown glandular...so there's some case that there isn't ENOUGH medication to remove something like EBV.
@@mmedeuxchevaux Holy shit I think I may have done the same thing to myself. I never thought of my stupid fillings. It all lines up with the timing I'm pretty sure too. Mercury poisoning.
@GetWellFromME I subscribed to you too! I look forward to talking to you more. Please watch my video: Ny life is a pain: living with fibromyalgia and chronic fatigue. (edited version) and day4 of my gratitude journal (the one that says pray4me) thank you my friend!
One of the best videos I've seen on ME/CFS. I feel the same as you. A multi-pronged plan and stabilising the condition and working at getting the body in the healing state. I hope your recovery is continuing. :) Anyone living through and attempting recovery from this devastating illness is pretty amazing in my book. :)
I wish someone like you were my doctor. What a lovely presence you have. I hope you're more than two thirds better now.
Thank you for making this video, I have had m.e. for 13 years currently bedbound , I had some improvement with thyroxine which hekped for about 3 months but has stopped working. Going to doctor on Friday.Wishing other sufferers love and support through this hellish life reducing illness. X
I realize that many people who obviously don't have ME love to give us advice, like: have good sleep (Duh, I would if I could - bad sleep is one of numerous symptoms), exercise (you should know that exercise is bringing more pain).
I am suffering from it for more than 30 years and tried almost everything out there. Drugs and supplements for depression that help some people, almost literally killed me several times (now I know that I also suffer from serotonin syndrome). My IBS and extreme fatigue disappeared after one group session for fibromyalgia sufferers with the energy healer Adam (Canadian). The pain, nausea, dizziness, bad sleep, bad cognitive abilities and weakness are still with me. Extreme diet with no meat, no deary, no sugar, no gluten, huge amounts of juiced vegetables, plus supplemented vitamins, plus cold and hot showers every morning with massaging for the lymph movement, osteopathic treatments... do work, yet is very, very hard to maintain. Because is the whole body that is affected, it must be something with the hypothalamus. I hope and pray for the cure. I don't visit doctors any more. There is no point.
bodulica3 you’ve word so hard. I wish you well. Me, ME/CFS 20 years. 🙏🏻
just curious, have you tried adderall? or vyvanse? some kind of ADD medication? i think i have a mild case of ME and have been definitely diagnosed with ADD. I have been described by my family as "lazy" for years. I tell them i'm not lazy. I tell them that I just dont' have any energy to do anything. Pretty much all of my twenties have been spent inside my room, regaining my energy after a my day job of standing all day. None of my co-workers ever have the same complaints as me. But when I took some ADD medication, it sort of seemed like a fog had been lifted and for the first time in my life I didn't have to use pure willpower to push myself through the day. Anyways, I know your comment is four years old, and you said you've tried anti-depressant medications (and i'm familiar with serotonin syndrome which can be deadly) but I'm curiuos if you're tried stimulant medications used for ADD. I only stopped because i know that I will eventually get acclimated to the dosage and getting off the medication leads me to severe depression. It's like something has been turned off inside of me.
So no meat processed foods and lots of vegetables actually help?
I was thinking of doing this but I have a physically demanding job and don't think only vegetables and fruit would get me through the day. Whats the science behind this? Being processed faster in the body? Similar to a fast?
I've considered taking a few months off again because I think my job is making it worse as well.
@@nk0723some people feel better with meat. It’s all about what helps you
My Manage Tips? meditate (briefly), self-acupressure (dry brushing), scent (lavender), pray (Baha'i), breathe (diaphramic), diet (plant-based-hydrate-fermented), laugh (friends-videos), exercise (walking), learn (often health science-ME/CFS), deepen positive belief system (Baha'i-Religious Scripture), music (listen peaceful-sing-chant-hum), fasting (intermittent after 6p), supplement (B12-selective), find beauty (anywhere), sleep (circadian), work (as worship), support (socialize-help someone) :-) ~ Most ideas, Abdul-Baha, Baha'i Faith
You did a great job at explaining ME. I hope you fully recover!! Sending you positive thoughts!!
Lovely video content! Sorry for chiming in, I am interested in your initial thoughts. Have you researched - Dinanlinson Rebooting Health Approach (search on google)? It is an awesome one off product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some incredible things about it and my friend at very last got excellent success with it.
Excellent Video! Excuse me for butting in, I would appreciate your initial thoughts. Have you tried - Dinanlinson Rebooting Health Approach (just google it)? It is a good one of a kind product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some pretty good things about it and my BF at very last got excellent results with it.
I congratularse you for getting this video out it sema to me like you have been doing a lot of research witch we all souls be doing and dont wait until our millones women I suffered Fibromyalgia &ME/CFS plus crónic Depresión for more than 24 years the last 7 years hace been a night mate however my faith in God have helped me thorough all the loads I carried been sick and a Single Mom of 2 kids like he says in Psalms 55:22 and Isaiah 41:10
I keep trying to add positive feedback into my life. And you have given me hope. In the early '90's I was exposed to very toxic chemicals, fiberglass, & many cancer causing agents. I thought I was dying. Coughing up blood, stones & extreme fatigue with sickness. I feel like a spinning wheel in my mind. But my body won't coropurate. I won't give up. I have 2 adult sons. And they give me a reason to live & to keep trying.😰💖
check out sarah myhill's website, if u havent already
@@kimwarburton8490 thank you so much for responding. I will defiantly check out Sarah's site. :)
Thank you once again Giles for another wonderful and informative video blog. It came at just the right time for me, as currently having a set back myself, and it was nice to hear your encouragement, and re-affirm my faith that I am doing the right things to recover :) You present this information so well, it is a checklist of the same conclusions I have reached 5 years in, after much research and trial and error, this will help so many sufferers. You are an ME angel, spreading the word, THANK U!
I really hope they find a cure for this soon. I have had it for 4 years now and it has changed my life so much.
Infinity Dave how are you now?
Any updates?
Thanks for asking, I am sadly still not great. I ha e found oxygen therapy helps the most. Hope you are all okay too.
Also, thank you for all these videos, they are really helping me understand what is going on, but most of all they make me feel understood in a world where CFS is very misunderstood. So thanks a lot. :)
@GetWellFromME thank you so much!!! I wish I would have joined youtube a long time ago!! There's such an amazing support network on here! Ive never felt more understood and supported as I do now. Id never wish my horrible symptoms on anyone but it really is nice to know I'm not alone!!!
I've not been diagnosed by an md but I do have this. After gallbladder surgery in 2003, my high energy left me. This is also when I stopped breastfeeding my son. The next year I had to have my uterus removed b/c I was hemorrhaging. That did me in & ever since then, I've then energy on my very best days of half a person. If I overdo it (which would've been nothing prior to all this) it feels like I've been run over by a truck the next day. I've had weeks in bed after going out for one day! I almost lost the ability to walk b/c I'd been in bed for so long resting. My brain is mush b/c I can't focus to read. Watching an episode of Star Trek is challenging on bad days. I try to engage my mind as much as possibly so I won't loose abilities. My biggest fear is not being able to think and loosing the ability to walk. Lyrical has saved me & given me the ability to be out if bed during daylight, gave a few good, productive hours & then regulate my energy, manage it appropriately & then build back some resemblance of a life. I have lost all my friends and my husband (not b/c I'm ugly either) so my life will never be what it once was, but I hope not to be so sad I hope for death, but joyful enough to be grateful for the good moments in life. There us so much beauty!
@GetWellFromME yes a 'magic pill' would be nice and easy, but no doubt an integrated approach is the way forward. Of course more research, money for research, and decent accessible help and advice for all of us would be fabulous, but what you are sharing here is pure gold in my humble opinion. I am sure you are helping many many people, for sure! No 'might' about it. Apologies for my enthusiasm, but it's awesome you are taking the time to do these blogs, and to take the time to think of others:)
By far the best video on ME out there
Thank you!!
Have any of you guys tried virgin coconut oil (VCO)? From my experience, at this state of body, VCO is the only nutrient readily absorbed for energy. It is also a broad antifungal, antibacteria, and immune booster. So, depending on your cause of CFS, it may help providing you the energy, or it may even cure the underlying infection. Unless, it is caused by tooth infection in which extraction is the absolute cure.
i just found you, and as a sufferer i am very excited. i need to just feel a bit better to watch through the videos :)
I and my college professor did study on exactually what you suggest published in Journal of Muscuskeletal Pain in 2000. I had it already than 15 years and I wrote all the questions. Some yes and no, some open end. I was looking for a common thread. toxins, jobs, birth place, genetics, diet, travel. I covered every base. Had 80 questions. As a lay person with only a b.s. degree I wasnt going to find a cure but hopefully a common thread. Well sorry to say never found one. I got struck severely after being healthy, no childhood illnesses other than normal. Was in Air Force. Have had almost 30 yrs. Now. Lot has got better but many symptoms stay. Age getting me now. For anyone watching I facilitated a support group at our local hospital over 23 yrs. I have personally talked to and interviewed over 450 people with this in my group meetings. This person knows his stuff so please take note of his ideas, he is on right track. I also suggest same things. But what helps one may not help another. But dont lose hope keep trying. While no cure there are many things that do help. Give each vitamin etc at least 30 days before giving up. Good luck to all.
that sounds like alot of stressors^ is cptsd a factor? worth looking into, esp if u saw combat/had mates killed.
How are you keeping now?❤
@@DA-ln5kz well about the same all I can say at this point is getting old sucks that's a technical term for not fun. If I was still even 50 youth itself made even this illness easier to live with. Age alone has to many of its own bad symptoms to deal with. I would say for my age 70 doing OK. I still clean my house cook one meal a day for us and grocery shop once a week. Lots of friends have moved or died and it's hard to make new friends when you can't get out alot and I miss people. Just husband and 4 cats which keep me busy. I have many days lost in bed completely. Least 2 a week, rest I push thru. Was sure hoping my last 20 years there might have been help for us not a cure but something big to help. Really disappointed will be like this till the end. Been a hard life wouldn't wish on anyone. Best of luck to all cfs sufferers.
l also want to mention I had a bad case of mono when I was in my early teens. Maybe that contributed toward my CFS. I was an anxious kid too and I was diagnosed with IBS when I was about 15. I had a bunch of tests done a few years ago to make sure the IBS hadn't developed into something else. My IBS IS HORRIBLE. Ive noticed that a lot of people that have FMS also have IBS. I decided to research the liver b/c Ive heard that FMS is linked to toxicity and I'm actually shocked at what I found!!!!
Thank you so much, I have watched a few of your videos now and they are so helpful to me and also to help my family and friends understand what is happening and why. Thanks again
much appreciated.i recommend seated meditation and progressive gentle walks as well.
Thank you for your concise and clear advice and support. Much appreciated.
I finally got my tonsils out 11 months ago. I've had strep 1 time since my surgery which is MUCH better than what I'm used to but I've been sick and on antibiotics my whole life. When I was 13 my parents got divorced and a few other major life struggles happened that year. That's when the FMS symptoms got real noticeable. While other kids were wearing cool jeans and clothes to school I had to wear soft fabrics because my skin hurt so bad. I was always sore, tired and irritable. I finally got
@VivaciaDreams Thank you, hope you get the energy to watch them, and that they make sense!! Remember, the transcripts are available for you to read on my website too :)
- - I've Suffered Over 32 YEARS Absolute HELL with "Chronic Fatigue Syndrome"/ME/Fibromyalgia/"Severe Mental Impairment" here in Hull,UK; & I'll be Bloody GLAD/Relieved When the Scientist's find a PROPER CURE for it!!!! - I Can't find a girlfriend/wife Because of having them!!.... :( - Am Always falling asleep,etc,etc!!
British weather and shooting long videos :) Thanks for the comprehensive intro!
I'm going to do a video about liver toxicity in FMS sufferers based on the info I found. Plus I plan to start taking milk thistle and detoxing.
Thank you for your effort in compiling this informative and accurate video.
I don't know if I'm the only one and/or if there are more people commenting on this, but I thought I'd just mention it in case I'm not the only one. I watched this video just now while I'm feeling very ill again (this week and last week aren't doing me any good) and that white background behind the list of possible treatments hurt my eyes like hell.
Now don't feel guilty please, I don't blame you. I just wanted to mention it in case more people have this problem when feeling ill.
@ChibiYotsuba Thank you, I'm so pleased if anyone is helped by these videos :) That's a good point about the graphics, I guess thankfully my light sensitivity has got to be far less of a problem for me than it was, and I was going for mega-clear graphics! There is a more pastel shade version of those "slides" on the Get Well From ME Facebook page, if that helps :)
I also use earplugs to help with sleep and 5HTP...good advice
I think you are right. These are exactly the viruses implicated in the diastolic dysfunction found in ME/CFS and the massive increase in numbers of patients who have these illnesses occurred right at the end of the 70s; just when global travel increased. It also appears there are other minor subsets such as chiari malformation, organophosphate and chlorine poisoning, etc. My hyp. is that diastolic dysfunction combines with vascular problems to cause transient CNS ischemia resulting in neuro Sx.
I've got to admit I haven't read the book or read about that in detail (yet!), but from what I have heard, it can sometimes be a very useful approach for some people. It probably isn't the whole answer for everyone, but it's definitely worth aiming to eat an excellent diet, and the GAPS diet seems to have some pretty good general advice, at least.
you are exactly right with the term.....unbearable sickly exhaustion.
Very good but telling people to not sleep during the day is not good advice. When your body says sleep, it's best you sleep, and remember that you're not the boss of your body until you are completely well and maybe not even then.
@JacquiSiobhanAston Thank you Jacqui, yes it would be wonderful if there were just one cure that worked, or that everyone were able to make a good recovery now - but I do hope that using the best combinations of possible treatments etc might indeed help each person.
@TheLibra2767 Thank you! Keep encouraging him to keep hanging in there :)
Could I possibly ask about the dosage you take? :)
@GetWellFromME Ah thank you. :) I'm not always that sensitive to light, but I am when I feel very badly. (I'm physically feeling okay at the moment by the way)
Anyone watching this video needs to watch/listen to: Faith Canter, Sarah Myhill, Optimum Health Clinic, Health Recovery
CFS/ME is just a label that's being put whenever there is no other obvious diagnose that doctors can come up with. (It does have something to do with an underlying infection, immune system issues, psychological factors, diet and so on. It's so complex to the point where not even the medical establishment can come up with a clear cause.
I suffer from ankylosing spondylitis and CFS/ME, came up positive for lyme disease, suffer from chronic sinus infections and I've also been dealing with depression and debilitating anxiety for years ... The fatigue is obvious in my case - depression, anxiety, adrenals, ankylosing spondylitis, lyme disease and sinusitis are all known to cause fatigue.
It is a very well documented neurological disease stretching back to the 1930s, including the outbreak at the Royal Free Hospital in London in the 1950s and the Tahoe outbreak of the 1980s.
But those diagnosed do not follow the same classification. I think there are other unknown diseases, and often misdiagnoses (cancer, MS, epilepsy, cushings, lyme, glandular problems etc. etc. that actually doctors often pass off patients from these tests if they do have ME so they are caught in a cycle). and it obviously must include those with acute fatigue or mental disorders, since doctors have been pushing that its no different for ages: its likely these with the majority of full recoveries-as in a lesser misdiagnosis......
...I think they've been diluting that original definition for a long time...
jorgepeterbarton
GetWellFromME Many of us know about these well known outbreaks, however, the CDC has not been able to pinpoint what is causing them! That is the main problem..
I believe and I could come off sounding like a conspiracy nut, but all people have to do is throw some pills in a drink and it dissolves and there is no trace of ever being poisoned! The pills I took dissolved in my mouth and I immediately felt ill!!! Now I have ME/CFS.
It seems like I've always had ME and FMS, although not as bad as now.When I was in 1st grade I was diagnosed with strep throat for the first time and I've had it atleast 3-5 times per year, every year since then. Now that I've seen this video I'm wondering if having "chronic" strep my whole life is what brought all this on for me. I was eventually told that I am a 'carrier' of strep throat, meaning that I will test positive for it even when I'm not showing symptoms-it's always in my system...
Very good and lots of good advice for all of us with ME/CFS and Pots Syndrome thank you.
I am still looking for the best doctors.
Thank you. Does brain imaging/ ctscan reveal any abnormality in hypothalamus or in any other related nervous system? Is the financial investment in finding any cause in part of brain help (needed ? )
You are awesome! Very wise info!
brilliantly explained. Thank you
Great video!
Everything you say are the same conclusions I have reached since having these symptoms for more than 25years.
MELATONIN? ONLY BY PRESCRIPTION IN UK.. and VERY DIFFICULT TO CONVINCE DR TO PRESCRIBE IT !!!!!!!!!!
@JacquiSiobhanAston Thank you, much much appreciated! :)
True inspiration of help/information for #MECXFS sufferers like my bf. ;)
TheLibra2767 how is your bf now?
Excellent, excellent advice. Well done.
10 years passed and doctors still have no clue. Ridiculous.
My doctor diagnosed me with anxiety and IBS only ignoring all my other issues, then she tried Psychosis but because I clearly wasn't, the psychiatrist decided to go with Health Anxiety as if I just made it all up. She also promised to help me find a home, because I'm homeless (yes while I have had serious symptoms and getting worse) then wrote a letter going back on her word....no problem to her being homeless.
I am 55 yr old female and i want to die.i dont have an understanding dr never have for a lot of years no one will believe me.i've been to hell and back and still going the nhs have let me down ive had it for 27 yrs dont get good enuff days very often i need help but falling on deaf ears
GEORGINA O'NEILL Oh Georgia! You poor thing! That is absolutely horrible. I haven't had a doctor who knew what to do for me, but I've at least had ones who believed me. That must be horrible. It makes you feel crazy and question yourself when they say that everything in your blood work is showing up as fine. Just try to get more sleep (I was sleeping around 14hrs a day when I was told that). I have been to see naturopaths who have been much more sympathetic and helpful. I am not fully recovered or functioning, but I am light years away from my days of being pushed around in a wheelchair because I couldn't walk.
Are you anywhere near London? I was watching TH-cam videos last night from a place channel called Freedom from M.E. Most of the people who work there have suffered and recovered from ME/CFS. If I was in England, I would definitely call them up for a free 15 min consultation like they offer. I've watched some, but I am going to watch all of their videos for tips and just moral support.
I am very happy to tell you some of the things that I think are making a difference for me. Progress is slow and gradual, and I always have to be careful not to over do it, but I think I am moving in the right direction as time goes on.
Even though I don't know you, I really feel for you and am thinking of you. Hope some of this helps, Emma.
Hi Emma,im in Scotland thanks for your reply. I get very bad attacks of inflammation, but my dr stood beside me and said you dont have inflammation hes cant know when i have it bad because i cant get down to surgery for blood tests to be done so if im feeling ok never usually am i have all sorts going on its no good going down at a push because i come out belittled and depressed they refuse to come out to me i can walk im in a catch 22 situation,thanks Emma for your kind words you are the very first person who understands,then you have to have it tho to be able to understand no normal even cares to listen my grown up children dont even want to listen let alone care thanks very much i've book marked this page maybe one day they will look at this they are all i have but they dont want me.Im used to that now too.xxxxx
27 yrs too long now i was told i wont get better
Hang in there. Keep trying. I am over 60 had 30+ years. Severe. I take lots vitamins. Co q10 300 or more helps fatigue a little. Ginsing red panax Korean. Amino acids. Magnesium a must.. I have tried everything under sun. Had one good doc but she left to teach. Its always proving yourself. I ran a support group for 23 yrs at our hospital for people with cfs/ fibro. What helps one may not help another. Keep trying stuff. Do eat yogurt once a day if you can. If your gut is out of order nothing you eat or take will help. Good luck.
Almost forgot which is better for you, biofilm or digestive enzymes?😵😷🤷🤔🤞
Excellent video, thank you.
That was so enlightening
hi, I have experience with this disease, I travel by all the world and I noticed that "in north américa Quebec, there are many people who suffer from this disease, according to my research and my experience (I am a biologist) the main causes of this disease are the three following viruses: Epstein bar (mononucleosis), cytomegalovirus (CMV) and herpes. unfortunately the doctor not familiar with the disease or the virus, there are of aggravating other infections, toxoplasmosis ... ect
I HAD A CAR WRECK THAT STARTED EVERYTHING. I WAS BED FAST FOR 2 1/2 YEARS. (CFS) THEN I HAVE HAD ALL MY LIFE, NOT KNOWING, THAT I HAVE EDS, IT GOT WORSE. (EHLERS-DANLOS SYNDROME). COULD THERE BE A RELATIONSHIP BETWEEN THE TWO? I ALSO HAVE MIGRAINE, ALMOST ALL THE TIME. AND I GET CAR SICK. WHAT A WONDERFUL LIFE. ME+EDS= NO LIFE AT ALL.
Are you hyper-flexible? Or is it just your skin that's affected? I did a search of Ehlers-Danlos Syndrome and Chronic Fatigue Syndrome, and yes, there definitely seems to be a correlation.
A false statement in this video is this: "fruit sugar, the sugar in fruit". Ignorant people, including some doctors, often mix the word fructose, or fruit sugar with the sugar content in fruit. Fruit contain about equal parts of glucose and fructose and the sugar is processed in a way beneficial to health when eating whole fruit. Free sugar is processed by the body in a way that is bad for the health. There is no significant difference in fructose/glucose relation between fruit and usual sugar.
Antivirals if you caught hhv4, hhv5, or hhv6
6 years ago. Damn. And still the public doesn't care.
Thx for the vid btw
You can't get well from M.E. there's no cure. All you can do is try and balance things as best as possible and don't overdo it.
I am in a wheelchair so really i just stay home dont use it in house its too sore to be up straight i feel i need a brace round me to hold me up im in a lot of pain not been anywhere out doors for years except hospital.Im more sad my family hate me because im like this i'm not a burden anymore they always did only see me when they needed something very hurt because of it they think im lazy.
Jack the Ripper yeah that's what the video is about
@CheZDr Thank you :)
@Rhondamarie00 So sorry to hear you've been through so much with your illness and everything. I've subscribed to your TH-cam channel! Please do keep in touch via Twitter @GetWellFromME and @ GilesMeehan if you'd like to!
hello i am prathi i am living in India benglore my baby she is not walking talking she is brain is damaged her age 2year doctors sujest speech therapy physiotherapy but I am financial problem no give therophy
the website ( www.getwellfromme.com ) is not working.
are you in remission
This thing seems to occur after illnesses that require pharmaceutical drugs/antibiotics, I think it's caused by drug damage.
Tell me more about this. Please. I've wondered if something else caused it.
Well, they say that CFS normally occurs after an illness, such as Glandular Fever, and there's also a lot of theories that point towards imbalances in gut bacteria. Antibiotics play havoc with gut bacteria, so what if it's the antibiotics, and other meds that are doing the damage? That's my theory anyway.
I took a drug called 'Roaccutane' six years ago, before I took it I was in the gym six nights a week, as well as working very long shifts as an aircraft technician. After I took it I was wiped out, and have been trying to recover ever since, receiving several different diagnosis', including CFS and IBS. My body is wrecked, and the bastard doctors who are responsible aren't interested, they just tell you to rest as much as possible, well, I have a life to live!
DJShearer I got CFS within a month of getting amalgam fillings.
IDK i vastly improved when i was receiving lymecyclin/tetralysal, a different acne drug from what you took. I also hear some theories related to glandular fever, that if its post-glandular fever its the EBV virus. In fact most people have a dormant EBV virus, they are carriers, so it could be related without coming to full blown glandular...so there's some case that there isn't ENOUGH medication to remove something like EBV.
@@mmedeuxchevaux Holy shit I think I may have done the same thing to myself. I never thought of my stupid fillings. It all lines up with the timing I'm pretty sure too. Mercury poisoning.
@MsFigster :)
Martin hayes
Good sleep, vitamin b 12, excersize, diet, and. An ssri for depression and add
Edi Kabashi lol
@GetWellFromME I subscribed to you too! I look forward to talking to you more. Please watch my video: Ny life is a pain: living with fibromyalgia and chronic fatigue. (edited version) and day4 of my gratitude journal (the one that says pray4me) thank you my friend!
please sujest me
look up the WHO definition of M.E. and you will find there are specific dxtic criteria. you'll also find there IS NO CURE.
What has happened to u?
why do you have to push the bollocks 'treatments' like nlp related. we need more and better scientific research