Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection
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I think I read that Dr. Avindra Nath now wants to dedicate herself to research on Long Covid........I hope she doesn't return in 5-6 years with the new study. I don't know if the two pathologies are similar, but regarding ME I'm practically sure that it is a persistent and contagious disease because in addition to seeing many of my symptoms in family and friends (unfortunately unprovable) I also saw those symptoms manifested in people who I only met 20 years after the onset of my ME and exclusively in places other than my home....... Therefore we should urge ME associations and research to deepen Nath's study on ME.I think having this disease makes us more likely to see similar symptoms in other people and ascribe them to ME, even though the causes of their symptoms are not due to ME. It also makes us aware when people who do have ME describe their symptoms, whereas if we didn't have ME, their descriptions of symptoms might not have even registered on our minds. The awareness of ME could be considered contagious.
It's a tissue based disease. Everything else downstream of it. Studies keep linking EDS to long COVID and m.e.
The baseline problem is that. Brain issues etc are all problems in these tissue/ collagen based problems.
I'm open to any possibilities tho.
Eds/ autistic like traits, are so common in m.e. patients no matter how under the radar they appear
The baseline problem is that. Brain issues etc are all problems in these tissue/ collagen based problems.
I'm open to any possibilities tho.
Eds/ autistic like traits, are so common in m.e. patients no matter how under the radar they appear
Rufous McKinney
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I generally have observed that over time, we have weaker and weaker tissue, connective tissue, etc.
so I view it as a type of facultative EDS. I was not remotely autistic, but I now feel that way.
I was standing on both of ankles, in a photograph when I was two. I have a defective spine/ I likely have tethered cord and over time, many back problems lasting a lifetime, none of them fixable, really.
The subcutaneous fat bundles have broken down, no fingerprints, I cannot really walk around barefoot.
the whole body gets affected gradually (in my case)
Neck unstable. I know my neck is unstable.
So all this has happened and nobody cares.
SlamDancin
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@Rufous McKinney Hey Rufous I’m so sorry to hear that and unfortunately it’s all too familiar. I too have all sorts of subclinical muscle, connective tissue and psych (I would say autistic but I’m not even sure what that would be like) problems that no doctor ever agrees has any specific dx. I tell them I have CFS and that’s as far as it ever goes. It’s not EDS, it’s not Marfan, it’s not myopathy/neuropathy/dystrophy, the only doctors that jump at the opportunity to label it are shrinks. Can’t get any serious pain medication, can’t get any benzos, all under the guise of doing no harm and yet day in and day out I suffer from being underdiagnosed and under treated. Even when I bring ideas to the doctors who otherwise would be doing nothing they more often than not say ‘we don’t know enough or have enough data to be comfortable doing such and such.’ And when I’ve resorted to self medication in the past I’ve been sent to rehabs. The last two medications I’ve been given by shrinks, VRAYLAR and regular dose Abilify, both gave me movement disorder problems, something that was never even mentioned by the doctors as being a possibility. Then they treat benzos as if they are fentanyl pills. Benzos are the only drug I’ve found out of 100s that reliably gives me functionality back and yet somehow that’s a bad thing because of dependency fears. Dependency that when I was sent to rehab to deal with was adequately treated with phenobarbital. It wasn’t a huge deal to do that even after 3-4 years of daily use. Anyways, It’s truly a hellish unbelievable life that we are expected to live. /rant over sorry
I feel your pain quite literally.
I had a psychiatrist once tell me every make patient he had over 60 showed autistic traits..but I'm guessing it's just the injuries of time and that goes across both sexes.
I care enough to say I hope you're alright and I totally sympathiser.
It blows my mind we've worked this out before the doctors
We are a phenotype. It's so bloody obvious!!!
Afrin talks about adult onset eds. But again I think that's just another slightly stronger phenotype.
I'm the end, everyone ends up with eds like features.
It's just we rub out quicker!!!
Saying that, sometimes the squeakiest gates last the longest.
My auntie has had this all her life..jus. t like me..we've suffered the sane things, sleep paralysis, cognitive issues, heart , kidney problems etc...but she's 87!! And sharp as a tack. Somehow this ill health has kept her in a homestasis that " fitter" peets of hers who are gone.
Life is very wierd
The benzos thing drives me insane.
They think they're being responsible and far out forward thinkers by not prescribing them after giving them out willy nilly to everyone!!!!
There's no nuance. It does smthg to our gut bacteria and vascular system that nothing else does in my experience. Even when tolerance builds.
I get 8 5 mg tablets a month after fighting my doctors over this. I get the same lecture every month when I have to get on my knees to ask for it.
The suffering we go through is far more deleterious to our bodies than allowing some respite.
I don't even want many more than eight...perhaps fourteen a month. The piece of mind it gives me just knowing it can take me away from the edge is great. I hold off on taking them a lot of the time.
I would be happy to sign a contract to say this is my responsibility.
Meanwhile the docs still put you on stuff that they don't even understand the mechanisms of such as anti depressants and are proving extremely hard to come off.
The whole thing has made me scared and wary of their power. With m.e., they know so little and lecture is , who knows so much more than them. It truly is medical abuse and they don't even know it.
SlamDancin
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@Oliver3 That was so well said, and so EXACTLY reminiscent of my experience, that I think I’m going to read that to my shrink when I see him next week. He has told me two months in a row that he’s not completely opposed to prescribing them to me but that there needs to be a future lecture first. I am hoping to get my experience across without having them immediately throw up their usual disregard of what I say as if it’s all ego and bluster.
Hip
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This thread is going off topic.
Glad you feel seen dude
SlamDancin
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Appreciate it @Oliver3. We can start a doctor frustrations thread. I don’t think one exists
Rufous McKinney
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I was put on phenobarbital around the age of seven, and years later, I asked my parents and they could not explain why any of that happened. Like for how long, I don't know that either. Its just this odd childhood thing.
thank you, you are very kind.
I recall turning on the Netflix show, Diagnosis. I think it was the second story, was the Gulf War Syndrome person, with what I"d describe as seriously injury to his brain. I found it so upsetting, I had to turn it off and I won't watch the show.
To be mistreated like that, and you're in the military. And I could just see it, in this man- what that did to his brain.
so I feel it here, too. Something about all this, overlaps somehow and is interrelated in someway.
Something related to the viruses and neuroimmune issues, is breaking down our tissue and these effects are NOT getting included in studies etc.
Rufous McKinney
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nanny state
During this time I had problems and I didn't want to give a short answer....... However you spoke like those doctors who do not recognize the existence of ME, for them those symptoms are common...
In 10 days I spent 39 years with ME, the first few years I didn't think about contagiousness, but then I started to notice that: family members, partners and relatives showed symptoms similar to mine; when you see that these people complain of having headaches that they hadn't had before and are forced to cover themselves with hats and scarves, that they say they have difficulty digesting, joint pain, you realize that they have the same ease as you in contracting colds and flu, they complain of tiredness, you often see them with shiny eyes and dark circles under their eyes; you can't go wrong with this. I believe that is a clear signature of ME and I think I have developed a clinical eye almost like Dr. Melvin Ramsay.
Those were the most difficult years I lived because almost every day I lived with anguish and a sense of guilt (even if it took years to reach the awareness I have today), believe me I hoped I was wrong especially in the summer or when my parents improved. symptoms, but year after year it has become a certainty. This is to say that: when a ME patient considers the fact of having a contagious disease, a world of painful emotions opens up to him, shame towards society, feelings of guilt for having transmitted it to others (especially loved ones) for not having them warned/protected……. one feels greater sense of guilt with friends, relatives and colleagues, less with family members and even less with strangers. So believe me it is much easier for a patient to avoid these thoughts and "espouse" one of the many theories (pollution, genetics, mould, EDS etc.) that the medical world allows us to have (due to objective difficulty in finding the cause, but perhaps at the beginning also for some form of interest) and which sometimes fuels due to the protagonism of some.
If I were a scientist I would have few doubts, the characteristics of ME are: at the beginning it appeared in the form of local epidemics, there is often more than one case in the same environment (family, friends, work) in 2/3 of the sufferers it started out as flu-like and chronically maintains this aspect, we no longer talk about it but until 15 years ago it also affected the pets of ME sufferers. The explanation why it is widespread in all industrialized countries is of course because people travel a lot, while in the third world they don't have time for these things, they have to think about surviving and then it's usually warmer over there...
Good night
Scientists should have understood this even without Covid19, but with Covid we understood that the same virus can give one person some symptoms, to others different symptoms, to some almost no symptoms, while to the more unfortunate ones pneumonia or heart attack and it is transmitted to the animals…
Dude
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