the paper said:
Nevertheless, some basic findings are agreed upon.
...
ME/CFS has a variable course.
Spontaneous improvement or even resolution may occur, chiefly with onset before the age of 20[20]. Otherwise, it is a long-term fluctuating illness, in some cases with progressive deterioration.
Adult-onset illness mostly never fully resolves. These patterns suggest that, once initiated, processes responsible for symptoms involve a
shift in a regulatory mechanism, open to ongoing feedback effects, both positive and negative.
I still think that there is a problem with implying that recovery is rare in adults during the first few years, for a number of reasons that include
* the evidence we have suggests it's wrong,
* it opens the door for people to falsely claim that their intervention (rehab clinics, GET, CBT, LP ear seeds...) has worked
* it makes it harder for people in those first years to have hope that things will be better, even though the evidence suggests that they probably will be
If physicians have any sense they will forget diagnostic criteria. Applying them via questionnaire is certainly not how medicine should work. They are a huge red herring. In the months after EBV most people improve and any decent physician knows that. We are interested in the illness that mostly doesn't. You could probably say that a diagnosis of ME/CFS is not allowed for 18 months after EBV on criteria because you have another explanation.
There is a potential for a lot of spurious precision around in this game.
The position that recovery is rare in adults seems to be based largely on the position that 'if ME/CFS symptoms persist, it is ME/CFS. If ME/CFS symptoms don't persist for years, then it was never ME/CFS and is better called something else. But, that ignores all the diagnostic criteria, the NICE guideline, that allow ME/CFS diagnosis at 3, 4 or 6 months - that is the reality that this theory goes out into. I think an example of spurious precision is suggesting that there is a major change in recovery rates at age 20.
Again, I would rather not fiddle about with this because it is irrelevant to the argument being made.
If you are going to make a point about (adult) recovery and say that it is a 'basic agreed finding', it needs to be true. You say you don't want to add to the length, but you could say less and have it be more correct. You could say
"ME/CFS has a variable course. Spontaneous improvement or even resolution may occur, typically in the first few years after onset. Otherwise, it is a long-term fluctuating illness, in some cases with progressive deterioration. These patterns suggest that, once initiated, processes responsible for symptoms involve a
shift in a regulatory mechanism, open to ongoing feedback effects, both positive and negative."
I don't think the evidence about resolution being better for children is terribly strong - factors such as only requiring a 3 month illness duration for diagnosis complicate things. We have much better evidence for rates of recovery being associated with time from onset. I don't think the edit I have suggested creates problems for your theory. Do you?
As someone has said, more than anything it is an exercise in laying out a framework for arguing any model of ME/CFS one might prefer.
In that context, if the fact that many adults meeting ME/CFS criteria at 4 and 6 months subsequently get better with time is ignored, people who prefer the BPS model can use it to their advantage.
I don't want to distract further from the actual theory in this paper, so I'll leave it there.
