Long ago i got the finding that "Approximately 33 % of the CD4+ T-lymphocytes are CD45RA and CDRO double positive", always been curious if it had any relevance to ME. Wonder if they looked at that
Very well written @dave30th, and concise and simple enough in what it focuses on (switching of outcomes and pre-registering participants) that it should alert readers with not much prior knowledge.
Thank u!
In hindsight I think getting an actometer as a part of a prospective study, the moment u get the diagnosis, would tell us a lot. The trajectory from mild ME (for those whose who start there), to housebound to bedbound will be pretty striking if its caused by exertion/exercise.
One issue is...
I hope some day we will understand how the disease cud worsen by sustained overexertion (and in some cases just a gradual worsening anyway)
Its one of the most perplexing sides of ME to me
But it should also be a big clue to follow, when we know more. Now we know too little for it to make any...
They are doing an actometer study at the moment, and also testing i believe lactate levels (maybe more just heard it from an patient)
They are not studying overexertion however, just the validity of actometer as an objective marker in ME-studies i believe
Has anyone unbiased looked into the effects of exercise long term on ME-patients? I mean in the graded exercise-studies the ones who get worse end up being omitted from the study (if I dont remember wrong this happened in PACE).
Also, based on my own experience; u need to exercise over a period...
I guess one should do some pilot studies to see if the no impedance findings has any relevance to symptoms. I would probably do that before pursuing it as a diagnostic marker?
Kinda pointless to draw any conclusions without objective markers for improvement or placebo groups. I mean u cant use the retrospective study for anything..
Its fascinating how little we know about alzheimers despite the huge effort
Also what exactly is an animal model with alzheimers when we dont know at all the pathological mechanism of alzheimers?
Even after 5 years i find it notoriously difficult to explain my symptoms. How do u explain having to concentrate really hard to stand/walk, okey u can call it orthostatic intolerance, but the receiver still only knows that i have an intolerance to standing, not how profoundly horrible that...
As far as my understanding is those symptoms, except apnea maybe, are not very normal to see in ME? At least paralysis and syncope would be a red flag for me that there might be something else going on
PS: Im not saying u didnt have ME
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