029 - We need research on severe ME/CFS now
ฝัง
- เผยแพร่เมื่อ 7 ก.พ. 2025
- 25% of myalgic encephalomyelitis (ME/CFS) sufferers reported being homebound, and 4% report being bedridden. Research is urgently needed to better understand these severe cases of ME/CFS.
Below are links to the two open-access articles I mention in the video:
www.ncbi.nlm.n...
www.mdpi.com/2...
Jarred Younger
I live between moderate and severe. It stinks . Because trying to muster the energy to go the doctors office and then once there being treated with disregard is totally defeating . And you just kinda melt away back in the shadows feeling pretty hopeless. That is why I thank God for people like you and your team . Because it gives us this little glimmer of hope and someone out there believes us and knows we are not just being lazy but we are being drained of all of our energy Literally ! I just had to say this and say thank you for not giving up on us
Functional MDs and good naturopaths are far more helpful than standard MDs in my experience. They’re better informed about CFS and related diseases. They actually spend a lot of time with you and test for toxins, mold and other things that standard MDs overlook.
@@ashleylala4293 unfortunately functional medicine doctors are not covered by my insurance nor are they readily available in my area. Which is a problem since I have not been able to physically hold a job in several years
Thank you for seeing us & devoting time to us.
I have been bedbound & tube-fed for life sustaining purposes many years. Those hanging on by a thread needed an intense severe ME research effort 20 years ago to be truthful.
Both UK & US funders have shirked this responsibility, refusing action and funding, ignoring severe ME pretty much entirely. February Nath said NIH was replacing ME research with long covid because it was more common *& severe*. Pfffff. 😡
Congrats to the graduates! It would be amazing to work in your lab. More research into severe ME/CFS would be very valuable. If I can successfully finish my Master's in Nursing, I'm all in to support.
Then you are a hero to me. Thank you for doing the work to continue your life of service.
Dr. Younger, I have so much appreciation of you and your work. I am almost platonically in love. I am so grateful that people like you exist. Hidden bedridden in my own home for years. Crying for help and better understanding of my own suffering. ... You are like a superhero somewhere out there fighting for us!! thank you
After my last big relapse 18 months ago, I crossed the rubicon into 'severe'. I'm bedbound 18-20 hrs a day, only leave home for essential purposes, and get terrible PEM when I do.
I'm participating in a study here in Melbourne Australia later this year. LaTrobe University researchers are coming to collect samples from my home to reduce my PEM.
"crossed the rubicon into severe" boy can I relate to that 😢
Great message and leadership here, Dr. Younger. I move between moderate and severe, my fear is that one day I will become permanently severe. The general public doesn't have a grasp of how disabling ME is, and the diagnostic criteria don't reflect the amount of physical suffering.
Which criteria? The ME-ICC or the Nightingale definition?
Yes..I fluctuate between the two too. Year 6. I wonder why this happens… take care 🌷
Don’t fear too much. I am in year 28 and many of those were bed bound. Everyone has different things in one way or another that can help. I put a comment later but you aren’t alone in this and nobody has the right, not even ourselves to believe that we have to accomplish something great in our lives. Just finding what interests you can give yourself a little boost and having support. Living is an accomplishment and despite the horrible pain it shows our will and tenacity to live and hope for something better 😊
Can you set up a study for postmortem exploration. I already have an Anatomical Gift to the state on file, but I would prefer that those on the frontlines of this illness have my body to study. CTE wasn’t understood until postmortem exams. Rabies gets diagnosed by necropsy. I understand there are logistics to be navigated, but a study has to be proposed before it can be funded and set up. Is anyone looking at this condition from that perspective?
Oops. Wrong section.
I am severe and mostly bed bound. I can occasionally go out in an electric wheelchair but it takes a long time to recover from this. Thank you for all you are doing for us.
Congratulations to Dr. Jordan and Dr. Hajin I wish them long happy and healthy careers and thank you Jarred for all the work that you’re doing, these videos that you share are very informative and inspirational and I’m very grateful for you and doctors like you.
Im mild because of pacing. If i werent pacing (ie worked full time and attempted to be "normal") id be moderate. Also mild ME/CFS is itself a huge spectrum in my opinion. Thank you so much for your passion and your work.
Thank you for your commentary re severe ME.
I also thank you for highlighting the importance of NOT just assuming severe is just a graduation from mild / moderate (we just don't know) at the moment
Personally I've deteriorated over 15 years following multiple cumulative insults (usually infections in my case) which each contribute to a lowering functional baseline, (occupational health WHODAS score of 85% loss of function)
Thank you to you and your team, and congratulations to the PHD graduates 💙🙏🏼💙
Thank you Dr Younger, your dedication to this cause is greatly appreciated! I'm among many rooting for you 🤜🤛
Thanks Dr Younger for your continued work and for helping and informing us with these videos. Its always a pleasure to see a new video of yours pop up.
Trigger Warning ⚠️
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Very recently we have had an inquest about the death of a 27 yo woman, who suffered from very severe ME, here in the UK. The autopsy found that she had died die to malnutrition caused by ME. Just before she died she was admitted to hospital 3 times via the ER due to her malnutrition but discharged the next day ( I think) each time. This is because the hospital didn't have any guidelines for treating very severe ME patients so they refused to put in a stomach feeding tube, which was what she and her family wanted and I believe what her GP requested.
Despite the inquest the NHS got off very lightly. But this indicates the urgency needed, as you suggest, to find causes and protocols for our very severe friends.
Yes , such a painful thing to read about. I felt so much for her and her family. Our community.
Very thoughtful video, if only all scientists understood ME as well and knew how to talk to and about us. You even adressed the fact that mild is worse than it sounds. I'm moderate/severe and feel bad for those who can still work but need all their spare time to recuperate.
Great video, thank you for calling for specfic research into severe/very severe.
A very commonly reported way we end up severe is through GET/exercise. I was mild for three years, did exercise therapy and have been housdbound and mostly bedbound ever since.
Thank you! I’ve been in bed 95% of the time for 5 years. I have a great integrative doc that has prescribed all the latest off label meds. LDN has been great for pain. I’m losing hope for getting energy back.
I was diagnosed with Long Covid ME/CFS two and a half years ago. I have lingered on the sever side of a Moderate case. Being in a sick fog all the time, for me, is the worst part, but I have found some benefit from French Maritime Pine Bark Extract and Choline. I have tried everything that my doctor, and other experts, have suggested... these two in combination are the only things that have helped. I still have the fatigue but, thankfully, less brain fog. If I over due I get all the worst of ME/CFS flooding back, brain fog and all. Those of us with this learn the hard way not to over extend the little energy we have. I continue to take a plethora of vitamins and minerals because my body burns through them at an alarming rate. Hope this helps anyone else that is suffering.
Long COVID here with body aching caused by the second infection 2 years ago which the first infection in 2020 did not cause. Does French Pine Park really work?
@@theancientsancients1769 Does it make you better? No, but it did help me with brain fog. I am sorry for what you are going through. Talk to your doctor about the combination of Choline and the pine bark extract. I hope you can get a similar positive reaction. My body aching was helped with a low histamine diet. It can't hurt to give it a try... I still limit my histamine intake to date and have very little aching. I was able to get a Paxlovid prescription and it came in very handy when summer Covid was going through my Sonoma County area. It is a good idea to have it at the ready if you start to get sick again.
Thanks for the affirmation that French Maritime Pine Bark Extract and Choline are helpful. I will seek them out
@@famousutopias I use phospholipid choline the more effective type for my liver .. this may explain why months ago I felt better. Now I'm on it again started it recently
Severe ME/CFS here.
A big thank you for your efforts!
It feels good just listening to a smart guy like yourself talk about this matter-of-factly. (Irrespective of the outlook)
Some days I have a pity party for myself, it’s rough having an illness that other people don’t understand. I find that over time, I just keep to myself more and more. But my heart really breaks for the people who are bed-bound. We really need answers and cures, no one should have to live like that.
Well, darlin, we do have to live like this. The trick is to keep finding our grace over and over again. Acceptance has taken me 35 yrs, but I am happier being what I can be than I was when I was lamenting what I simply could not do or be. We can have rich inner worlds despite what our bodies are doing. It doesn’t matter what anyone else thinks in the end. The only question to be answered is whether we did the best we could. That may not e enough to get the dishes done, but it can be enough to provide some peace. The good doctors are doing the best they can. There is a lot we can do to show up as mentally healthier patients.
Excellent video Jarred. Thank you for the much needed distinction. As a person who is ACTUALLY bedridden unable to stand for 5 years it bothers me when people compare and think the same works for both. For example CBT and counselling that can even be detrimental.
Thank you Jarred. We need more people like you on our side
4:50 ME/CVS has absolutely the WORST leveling system.
I've been "mild" in so many different ways.
Also, when company doctors saw my "mild" diagnosis, they made very wrong assumptions about my capacity.
My mild in 2024 comparing to 5 years ago is like Russia vs Vatican..
I was so so bad back then. And that was still called "mild" 🤬
My doctor gave me a mild diagnosis when I was working 20 hours, crashing from small things and so on.
Hello. I agree that 4 levels may be too crude of a resolution. In my studies, I tend to use continuous measures instead, like the severity of symptoms from 0 - 100. That is better for the statistics. Also, there are so many different aspects to ME/CFS that are being condensed into one description. Your description is a great example of how a single rating can cause lose very important information about the real health of the person. - Jarred Younger
Dear Doctor, thank you very much for all your efforts, passion, life long career dealing with such debilitating illness ❤. I never thought I could have something like that. Now long COVID with CFS for 3 years. Even having a great neurologist, who helps me with symptoms management greatly, meanwhile it's still debilitating thing in my 41. All the best for you and your team ❤. Greetings from Vienna:)
I’m getting better from eating super gut yogurt from Dr.Dave. Started doing Qi Gong. and dropping grains.
I had already been doing seated yoga, EFT, Reiki.
Water fasting drinking ASEA.
I’m not as exhausted as I have been.
Thank you for your trials.
👏 nice. Just started EFT as part of the Optimum Health Clinic program. Helps me a lot with psycho-emotional quality of life. Too early to say anything about PEM and other symptoms…
@@BanzoUnchained I would recommend you also do 5 elements Qi Gong about 10 mins lots of great teachers on here. Balancing organs and energies.
Dropping wheat and corn may make a difference to some. You could try oats.
I hope you continue to get benefits! These are all interventions that I have not had a chance to study. Thanks for the note. - Jarred Younger
@@guidodenbroeder935 yes for myself wheat triggers a couple of issues that I have and I pay dearly for it. I substitute and use even all sorts of grains and lentils. That helps me quite a bit actually and I know others that have mentioned the same. I don’t have celiac disease either.
11:15 I love your thinking around what makes severe patients severe! It's so important to figure this out. And you're putting it so eloquently. Personally, I think that very severe patiënts have some additional issues. Something big is holding them back.
Luckily, I'm seeing some of them get better anyway, after years of experiments with medication. LDN and Abilify seem to be the best bets at this moment.
Especially if alot of us have ADHD autism as the causation with heds.😊
@@Truerealism747 I'd say it's more of a predisposition. I indeed have ADHD myself as well. Dr. Visser who diagnosed me with ME/CFS says that a huge chunk of his patients have ADHD indeed.
It's also difficult for us to recover. Because recovery takes discipline 🙈 something I don't possess.
But I'm trying to find my way.
Do you have (au)dhd?
@@forismayes I do my father surely has ADHD and CFS howmmuch Ch is autsm.adhd burnout to all his sister's.have fybromyalgia sleep apnea to as my grandfather that side.my mother who I lost last year to severe ms obvously austism heds so I have autism diagnosed late with ADHD heds do you have heds I believe ocd is link to energy to.my son as autism ADHD how is your pain
@@Truerealism747 what's heds?
I don't have a lot of pain, just the usual amount related to orthostatic intolerance after being upright for too long.
@@forismaapparently you can't be diagnosed with CFS with chronic migraine before because that's the causation even though I am worth noting as a baby I slept 23 hrs a day long before CFS fybromyalgia diagnosis is pain your worst symptom.fatigue is a big symptom of autism ADHD check out Dr lenz
Thank you for these information, sir. Appreciate your efforts.
I had mild/moderate CFS for 7 years and then I did the Gardasil series 4 years ago and that put me in the severe (housebound) category and it’s been getting worse ever since. So now I’m 11 years into this illness. My body can’t handle any treatments - everything I try drains me and makes me feel even worse. It’s like I don’t have enough strength to take in the treatment.
Thank you for being passionate about research
given the overlap between ME long Covid vaccine injury and anything with a fatigue or mitochondria element to it I think research of those unfortunate people that are bedbound with ME would surely yield results to so many people
I was extremely fit and cycle racing until I had my vaccine and I now meet all the UK NICE criteria for ME moderate but can’t get a diagnosis of anything
CFS is very similar to Long COVID and now long COVID numbers are much much larger! Which gives much hope for CFS research as more funds go into it
Congrats to Dr. Jordan and Dr. Hodgin 🎉
From a housebound patient, you give me hope Dr. Younger
Thank you Dr. Younger for you research, these videos and your heart for ME/CFS patients. This year is my 42nd living with this awful illness and for most of those years I've been classified as homebound/severe. I've kept up with research during these years and am so happy to see how much you and your team are adding to the knowledge base for it. I do have one question for you.
There is one symptom that was intermittent over the years but now at age 74 has gone from something that starts mid-day and increases over the day to it being almost constant and the greatest impediment to my being able to accomplish the few things I've been able to do so far and nowhere do I see it mentioned. I stopped going to doctors years ago and the few I've had contact with in the functional/holistic field also are clueless. I know we have bad spinal inflammation and I fight it with completely organic diet and herbs that specifically target inflammation and pain, however, I'm now in very severe pain that leaves me incapacitated and that is a tightness around my ribcage and up my back that turns the muscles into stone hardness. It is like wearing an iron vice that tightens, tightens, tightens until it actually pops the ribs out of joint. My last visit to a chiropractor verified that was what was happening but he had no idea why and what to do about it. He put them back in place and that caused weeks of worse symptoms. I also can't speak above a whisper or swallow more than a tiny bite by afternoon due to the muscles going into extreme tightness.
If you have any idea what part of ME/CFS activity might be causing this at least I can continue following more helpful paths of research. Thank you for any clarification on this very severe ME/CFS symptom.
This started in myself 2017 mitochondrial dysfunction threw subconscious brain what I can see any OCD? Hypomobility? My father has CFS to
Also it's related to adrenal glands are ve had it from 17 now 44
@@katb6981 I am into year 44 and your age. Having had several remissions makes it difficult to live with additional autoimmune illnesses whose clinical features and symptoms are similar to ME/Fibro. 2020 was the year that changed everything for me. The stress caused a relapse plus dysautonomia. How do we even know what natural aging is given our history?
@@DanielleRadicanin Sorry to hear it. I know once it was calculated that an ME/CFS' patient's biological age was 23 years older than our chronological so I'm 97 this year, wow I didn't know I'd make it that old! Though 97 is about what I feel every day. lol
@@katb6981 And yet my mind defaults to age 35. Currently, due to circumstances beyond my control, I am averaging 2 hours sleep nightly. Needless to say, I feel impaired and look exhausted and yet, my spirit refuses to give in to my chronological age.
Moderate to severe. Sometimes I’m housebound, sometimes I can get out for a bit. Ran an errand yesterday, but had to nap when I got back. Slept so hard I didn’t know what day it was when I woke up. 🤣
I think ME/CFS is seriously under reported. But At last there’s someone smart and empowered like our good doctor to look at this. There really is a dearth of real knowledge of this syndrome that forces people into either an incorrect diagnosis or getting no help at all. Probably the most gaslit and dismissed sub population ever.
I find it fascinating that certain groups of symptoms show up in different contexts as different things- gulf war syndrome, ME/CFS, mitochondrial dysfunction (look at the checklist at various Mito sites), atypical major depression, and now Long Covid.
I’ve been battling this since the 1970s and it’s been an unpleasant roller coaster ride that puts me at best in the “mild” to “moderate” range and complete debility at times in my life. While normal people are behind the wheel of the car in the journey of life steering their energy into this activity or that, many of us here are behind the car pushing it through the journey of life, missing the scenery and fulfilling activity along the way.
I hope this research reveals a basis for effective therapy
Its also interesting and needs studying about "progressive" ME. like those who just continue to get worse over time despite pacing or medicating whereas others can stay the same or even have better periods
Bravo, Dr. Younger! Thanks so much for advocating for us more severe patients.
Dr. Mark Vink is severe and did a case study on lactate or lactic acid. This is the first time I've heard people with mild ME being able to work full time lol
Amazing video, yet again. Clear-headed leadership and call to action. I hope it sees results.
The issue is the profit motive that not only favors only profitable treatments, but pulls money from cheap solutions - perhaps even deliberately.
I have all but begged my doctor to help me. I even told her I think about suicide. She sent me to shrink. I didn't go. Unbelievable!!! I'm planning on sticking around to take care of my pets. I have no humans, none and my kitties love me. I also have 4 old chickens and 2 goldfish. I don't want to be here. I live in poverty. Husband left when I got sick. Not complaining, just facts. Glad to get rid of husband.
I went to the psychiatrist and he was a great help in guiding me through diagnosis and my declining health.
I mean, I understand what you are going through, I am mostly housebound and bedridden and live for my cat. I had no expectations from the psychiatrist and was shocked to be seen and heard. I hope you find someone who can be there for you. Hang in. Hugs.
Girl! You just enumerated lots of reasons for anyone to benefit from talking to a mental health professional. Invest in what you CAN do something about. My circumstances are similar, but I have an appropriate person to talk to about my personal problems. Keep that appointment with YOURSELF in that supportive setting. If my mind is the only thing left that I have any chance of controlling, I am going to to apply myself to learning how to do THAT well. It isn’t a “ you thing”, it is just a human thing . Doctors are detectives, not magicians. Give a therapist good clues, and they can show you some known culprits you CAN conquer. I found perspective to be good medicine. Do what is yours to do, and I will cheer for you.
Thank you for the update!
Good luck with the grants! Thank you for your work.
Yay team! We can all do our homework while we wait. Just tuning in to these videos is taking a step forward.
Hi Dr. Younger, first of all thank you for your work. I’m humbly asking if you would begin to consider mold exposure and illness more during your research. I became severe after living in a moldy building and getting many respiratory infections. Many people develop ME/CFS or a related condition known as CIRS after significant and prolonged indoor mold exposure. Mold and mycotoxins are known to cross the BBB, probably causing microglia inflammation as you’ve documented in previous videos. I just want those people, myself included, to be part of and benefit from your scientific process. ❤
Back in1987, when CFS was introduced in an attempt to hide an outbreak of ME from the tourists, there was an ongoing problem with mold in the same area. These patients also generously received the CFS label so the CDC could ignore them as well.
Same here….good question ..moved into a ‘newly painted and carpeted’ home 6 years ago. Bed/housebound for 2.5 years- in a new place now. 6th year of ME/CFS-MCAS etc ..
Mold made me really sick….. wondering if it triggered my me/cfs too!
Mold is often a piece of the puzzle for us. I grew up in a home that had a mold issue. I had severe pain in the limbs which was always worse at night. I would be up at night crying Dr told me it was growing pains but it never went away. Until I hit 30 and my Dr tested for mold. My levels were still sky high for 4 different mycotoxins despite me moving out of the mold home more than a decade prior. I also had high levels of the toxins bromopropane and perchlorate. We just really don’t detox well at all, our glutathione tends to be depleted or maybe we just don’t make enough. Detox protocols did help the pain in my limbs. I’m still struggling with long Covid now.
Anyway, I pray to God that we get this mess figured out so we can all get healthy and live actual lives.
@@goldilockz6517 there are many triggers for this for sure. Strange how some can shake them off and others of us just can’t.
I’m lucky I am usually mild/moderate. I have been able to do this by resting mostly. When I did work more I was more moderate. Could only work part time then rest but couldn’t do anything else and couldn’t really walk much. I worked 1.5 blocks from home and drove many days. Couldn’t walk up my steps some days. Now I work from home because not willing to get worse again. But I agree I wouldn’t call mild ME mild.
Should we rename the classification of the disease as grade 1 to 4? It feels anmore respectful way to describe the disease. I am moderate, but there is nothing moderate about my disease.
34 years, 28 of them mild, now moderate, made even worse by covid, and I wholeheartedly support this idea.
Hi Jarred. I really appreciate your work and that you share information about it. It gives hope which is a strong medicine itself. Please let me know the best way to send you a message. Thanks- Ken
My second COVID infection 2 years ago caused progression especially with muscle pain , disturbed sleep
I saw a comment about lactic acid and it reminded me of how many lumber punctures that I have had and they always found an anomaly with the lactic acid……12 times over 26 years 😂
2024 - almost no studies available on this topic? That's literally insane....
Thank you Dr
Agreed 💯
Is there any chance you could test the high vitamin D3 and k2 plus the co factors that Dr Eric berg says to take in his TH-cam videos, in a study please 🙏 and see if it helps M.E.
Should be in combination with high-dose vitamin C. For such a study to be valid, make sure that the participants are real ME patients.
I take it along with high dose C. If something isn’t going to affect your regular medication interactions then I say what do I have to lose? I make sure of the dose and that my doctors are aware.😊btw D3 and K2 work well with Calcium if you have to take that but years ago there was a study done in the US showing that basically the majority of the population was not getting enough D and even though it is stored in our fat ( ADEK are) it is common to have 3000-5000IU a day and it is considered very necessary for those who don’t get enough sunlight and to help with even the blues.
Push!
Thank you for this video. I got covid as an older person in 2023, l cleaned the virus and went down hill very quickly, straight to severe and have been housebound/ chairbound since, more time in bed than out of it. I have questioned if its all the same illness and l would be happy to participate in any of your research.
Have any of you guys shadowed these people? Seen if they have common denominators that they don't know might be relevant, all live with a veteran, or if their tasks are disruptive and harder with narrowed paths and less facilitations or cooperation. Everything became impossible, frequency disruptions,. If i wasn't exhausted by encountering an obstacle course when I try to make doctors appointments and participating practices, i might be diagnosed with something like this. The top left quadrant of my birth chart is empty, for me, but something else is harvesting my efforts. I just sound crazy trying to explain it.
There are specific symptoms that define ME/CFS. See 2011 International Consensus Criteria for details. BTW, you can't 'shadow someone with very severe ME/CFS, bc they can't physically tolerate light, sound, speech or interaction of any kind. This disease isn't psychosocial. It's physical.
After long covid event on top of rheum arthrts unable to conquer fatique - sleep 12 hrs wake take 3 to 4 naps thru day still no energy-starting w gut microbiome but believe boosting mitochondria health and biogenisis onky solution
I'm bedridden 24/7. Luckily I can get up for meals and bathroom. Everything is a struggle.
I was born with this condition. It's been getting worse as I age.
I don't know if I have fibromyalgia or ME/CFS. What's the difference? I do feel ache in every muscle.
I think you have fibro if your pain is worse than your exhaustion and ME if your exhaustion is worse than your pain. There's a lot of cross over of symptoms, though, as I understand it.
Check out Dr lenz ime diagnosed with both decades do you have hypomobility autism ADHD causes it with sleep apnea.ldn helps with fatigue not pain.also apparently you can't get diagnosed CFS with chronic migraine as this causes all symptoms but I am quote Dr silver
A disease 'ME/CFS' doesn't exist. Depending on where you live and what doctors you meet, your fibromyalgia may get falsely diagnosed as 'ME/CFS'. ME, meanwhile, is caused by enteroviruses. You don't get born with it.
@@ShelleysnailI still don't see the need for 2 different syndromes depending on which symptom is worse.
@@slomo4672 Myalgic Encephalitis- myalgia refers to aches but encephalitis refers to the brain and the extension includes everything under the “dura mater”. Our spinal cord is part of our nervous system. The terms chronic fatigue and ME have been put together but in the literal sense of ME other things such as viruses, bacteria and fungi can cause an “itis” there. Generally speaking though the link with long term chronic pain has been associated with neurological findings and some have short bouts of an infection that gets handled with antibiotics if bacterial or antifungal meds for molds but when it hangs on and nothing changes it and is associated with the other then that is the terminology typically used. Also since our muscles actually crave to be moved, one can get serious cramping and that is even with stretching and exercise but as much as one can do does have good results in gentle motion and mobility according to what each doctor or our bodies say we can try. It surely is a struggle and we become more weakened in bed and it becomes a vicious cycle certainly.
Thank you!
Hi don't know if it's finished yet but the quadrant institute in Norfolk UK is/ was doing a trial on FMT for severely effected patients.
I've not seen any results it was scheduled just at the start of the COVID pandemic and all efforts were turned to that as you would expect
I may be suffering from long Covid the last 3 years. However, I feel that it is ME/CFS that is not being diagnosed. Any recommendations where I can go for a proper diagnosis? I improved slightly but have plateued and I am still not functioning normally. I live in the midwest Chicago or Southern WI. Any recommendations would be gratefully appreciated.
If you had COVID infection or vaccine the likelihood is long COVID which cause almost identical symptoms
My brother live there.. good info from u Chicago, is it north western?, also Cleveland clinic 🙏❤️
@@CK-hu8vz I have heard meh lately from Mayo Clinic’s response and since people come from far away some want them to come back for “ classes” when the information can be printed and handed to someone. Chronic fatigue syndrome has no blood test that says that this is what you have. Any family physician listening to your situation will do a basic check and oftentimes refer one to a rheumatologist to either confirm or find out if there are any genetic or inflammatory increases in the blood. You would want to request blood work to wait until you feel your worst. They also might refer you to infectious disease or an immunologist too.
Is it common for there to be skin discolouration over inflamed area ? Is that a vascular sign and if so would any more typical scans shows irregularity?
Lack of O2 to cells, neuro inflammation, blood pooling, discoloration 🙏❤️
@@brendabrenner2891 yes. I’ve just not heard of others with me/cfs having it. This is a permanent mark on my head. Not pooling in other parts of body that fluctuates.
Hi - Sorry, IDK what that could be. My daughter has weird discoloration around mosquito bites that lasts for weeks; I think they might be Henoch-Schönlein purpura. This usually only affects children, but she is an adult (she's 22, but could pass for 12). I reminded her to take pictures since it is good to document things (it helped me to have photos of skin changes last time I saw a rheumatologist).
What in your opinion be the one thing I could present to my doctor to read? Trying to educate them they know nothing! My neurologist is open to reading something I see him for migraines. I just want a condensed version that they would actually take the time to read. I understand most doctors are not interested so I need something that will peak their interest, but the good information I am in the Gulf Shores, Alabama area. I have family in Birmingham and I do visit from time to time.
I have severe and greater lack of conditioning certainly is a factor. I've had loads of blood work and scans and nothing is found. But what if something like neuro sjogren's is involved? No one investigates this thorough enough (blood work never conclusive).
@@baileystruss7319 interesting. Sjogren’s, and different cancers such as multiple myeloma indeed are correlated with our immune system. My father had both and my brother has fibromyalgia and CF and is moderately affected and had to stop working. I also have it with a side order of an active gene that also gave me PSA and EDS. My mom’s side of the family doesn’t have this. What if everything is related to our immune system and our body’s inability to perfectly keep making cells because essentially that is what happens? Could people stop death? No but the focus is at least to try to provide palliative measures so that those whom have these issues can have some quality of life for sure.
Very interesting AM in UK . I was an industrial chemist who went into pharmaceuticals. Been sporty /active.... Got the 2024 (flirt) covid from American relations at a wedding...... Now 3mths later... still tired and in some pain. I understand this isn't quite your point but does smth happen to trigger mce
Hope it won't turn into long covid.... And what's mce?
Ty ,
But Sadly not enough done , not early enough for most people in their lifetime !
It’s been known / around for Over 70yrs now & swept under the carpet or addressed as mhd , by most so called profLs 😵💫🙄 & still all we’re doing is talking. , documenting & research ing 😫
We don’t need stats we need action , treatment , cures etc … ! 🤔
People are during , I feel it’s not good enough, not fast enough 😵
Less talk & more action / trials NOW 👏
Jmo
Does anyone know of a good doctor in Colorado? I have neuropathy fibromyalgia and chronic fatigue
Where is your neuropathy I have fybromyalgia CFS is the neuropathy fnd are you hypermobile
As well-meaning as this is, medication or an identification of an enzyme or mechanism is the last thing ME sufferers need. After suffering from ME for half my adult life, seeing the best ME doctors in the world, trying different treatments and medications with no results, I decided to take matters into my own hands. I got out of my moldy house, ended my bad relationship, I used sauna, meditation, organic diet, time outdoors, and I completely recovered. I think a lot of people with ME experience a learned helplessness that only perpetuates as their illness progresses. They need to take responsibility for their own healing, since only they know what is causing their illness. A big component of thisbis psychological.
What research paper are you basing your comment on that this is a psychological problem? I contracted M.E after having glandular fever 13 years ago, I'm not sure how taking responsibility for having a virus and ending up with M.E will help. I've put a lot of effort into getting better. Glad you were able to work through your psychology issues.
@@scrappylass5159I agree with you. The victim blaming is a huge barrier to people getting well.
I do think there's a psychological component that _feeling hopeless makes things worse_ because there are feedback loops that reinforce ill health.
*_But attitude is not the cause!!_*
And it is extremely important to understand this, as _the victim blaming is part of that system of hopelessness._
There is a very fine line between blame and empowerment.
And when you're very tired, and can't do as much as even you want to do, it's so easy to cross from empowered (which can drive you to improvement) to blame (which can drive you to despair.)
@@scrappylass5159 you missed my point entirely, but I'm glad you're getting better.
@kikijewell2967 no victims blaming here, quite the opposite.
Each of us are totally responsible and powerful enough to recover on our own.
This is pretty harsh. Be kinder to those who suffer from this illness please.
Huge thank u for being a loght in a dark tunnel 🌟, along with dr paul Anderson, Seattle , Dr john Campbell, UK, Dr al aly, dr wes ely, TN (400.pg grant)..
Retired frducatir, 41 years, was pre med, ser 11 drs who treat 11 bidy parts 😡..none knonwhat talking about, ..fluctuate between sever(w crash) + moderate..learned to pace, follow flccc guidelines/protocol, but w celiac, gut dysbiosis, hi malabsorption, now w histamine, food intolerances, + yes, ldn, choline, meth blue, lymph ckeanse manual, etc..thank u for all u are + do🙏❤️🌟
Excuse brain fog texting.. retired educator 🙏