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It's certainly a big problem, especially if, as some suspect, fatigue is a red herring. Studies are based on definitions. Get the definitions wrong, and the studies could be crap. Of course, in a way this is ass-backwards. Disease definitions should be ultimately drawn from study results, but...

Shouldn't researchers continue looking for causative agent(s)? Or are you suggesting focusing solely on a single symptom at a time, or a single cluster? Am I misunderstanding here? I appreciate diagnostics have failed us, that progress to date has been restrained by the limitations of current...

Well, or observe. It's a step removed from first person. For me it is a reminder of the psychs who co-opted the word from that "sickness behavior" veterinarian. But fair enough.

I wonder how this test is different from vestibular occular tests like the VOR test - which theoretically also can be looking for brain stem issues that translate back to the eyes. And what does she mean by "behavioral" signature? Isn't this more reflexive? It strikes me as an unfortunate...

@Michiel Tack, remember when I advised you needed to cast your epi net further back than you appeared to have done? I was doing some reading yesterday and chanced across this 1990 study of chronic Lyme symptoms. If memory serves me, this would have been right before the real BIG push to...

But not about public tests, ie, NHS/CDC/etc. tests? You do. Large variations in Lyme, too, as well as other tick-borne diseases like babesia.

I agree. If that turns out to be the case. There are so many outstanding unanswered questions and so much white noise generated be pure speculation and nothing more.

It seems to me Lyme could cause the immune dysfunction some speculate as causative of ME/CFS. And you could have ME/CFS and then acquire Lyme - or visa versa and have them not at all be related. It's a small world.

Agreed. If ME/CFS is derived from some sort of aberrant immune response, why couldn't Lyme cause such a response?

They cannot prove this. It's assumed. And why boil down the large cluster of symptoms which can characterize Lyme to, um, fatigue? Then seemingly extrapolate from that and suggest that single symptom might qualify a patient for an ME/CFS diagnosis? This to me smacks of medical economics: two...

If I'm not mistaken, @Michiel Tack , although they list several possibilities that could account for the persistence of this sole symptom - odd they should just pick one, potentially trivializing the patient experience - the one explanation I did not see considered was unresolved Lyme disease...

Poop.

Ya think? It is a distressing exercise in deja vu to see different talking heads from the medical community, and in particular the NIH, speak about the same shit, year after year, like it's a Eureka moment.

Psychology needs to be reined in. It is the wilding of medicine, and everyone who turns a blind eye to its ravages contributes to the pain it causes people.

I like "post-acute." I do not like "after infection." "After infection" implies to me the infection is a thing of the past. I'm not sure they have proven this.

@Arvo , I get the same thing, also primarily in my legs. One of these days I need to have a GP opine on it. In the meantime, I just assume it has something to do with low platelets, which I have periodically, and which I ascribe to ongoing babesiosis. Which may or may not be correct. My...

I have bilateral vestibular damage. I was tested and it is pronounced, as I recall. The thing is - and my memory is suspect - I recall the ENTs at this leading research facility opining it could be my brain, that infection may be the cause. I remember asking them how we could check, and they...

Pinwheeling. I get this sometimes when I am laying down. It's really disconcerting. I've gotten so bad I could not do anything but try not to puke. It's like my head is moving desperately to turn behind me, and my eyes are lagging behind and trying to catch up. Only, I'm not moving There are...

Are there any pwME that have gotten/are getting their LDH tested to see if it's elevated?

Isn't there a link between high RDW and NO? I wonder if this relates to decreased red blood cell deformability someone (Ron Davis and others?) found in pwME?