Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Trish said:
The last I heard, Stuart Murdoch had relapsed. But either way, I don't think he has ever made any claims to understand scientific research methods.
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So let's demand to also include people who had thought they have recovered but did relapse.

Sorry for being cynical - but that's what I was trying to point to: the spectrum of people who have recovered or thought they have recovered and the diversity of reasons (including religious/spiritual ones) to which they ascribe their full, partly or temporary recovery.

I personally know someone who recovered two years after illness onset and see themselves as just lucky – later their child got ill and is now severely affected. Its parent is still well.

It’s impossible to find persons who represent the whole spectrum of people who have recovered (or think they have recovered) from ME/CFS, and as you and others have pointed out, the assumption they qualified for advisory or advocacy only because they recovered doesn’t make sense.
 
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Taking a representative case, as no one can seriously ascribe a reason for their recovery without falling into the "correlation is not causation" trap (although of course this is basically the bread-and-butter of BPS and EBM in general, so correlations are simply cherry-picked the one way they want it to be), how actually useful is that perspective? I see this all the time in LC forums, on twitter and elsewhere. Some people attribute their recovery to a bunch of random things. For a long time there were many drugs and supplements stacks. Do those count? Ivermectin? B12 injection? Freebased hydroxychloroquine? Rainbow therapy? Most testimonies are basically just this:



A simple "I don't know" and happy to return to their old life, which it really must be pointed out and emphasized is something the BPS ideologues explicitly argue is not the case, even though we literally tell them that all the time and in explicit terms. They explicitly argue we must not want our old healthy lives back, even though we literally tell them this is all we want!

I really can't see the usefulness other than complying with an imposition by the editor-in-chief that was lobbied by unknown actors, which takes all the independence out of the process. How much more impositions are there? How many are there that we don't know about?

Cochrane couldn't display more contempt for the process, and for us, if they tried. This is supposed to be a new model and it's actually worse because it won't have the credibility of a working group. The process started 5 years ago. 5 years!
 
A passing thought. If someone can be found who recovered without any intervention, or recovered following careful pacing/resting and being very careful to stay within their current activity capacity, they would be able to make an n = 1 argument that GET is not necessary for recovery.

Perhaps I should put myself forward. I had over 6 months of what would now be diagnosed as ME following what was probably EBV infection many years ago. I was largely bed bound all that time, had no treatment other than pain meds for severe headaches, and recovered completely. GET hadn't been invented back then in the 1970's, and there was no suggestion of any therapy or rehab. (A separate and ongoing episode of ME started 12 years later.)
 
rvallee said:
I really wanted this to work but I think Cochrane set this up for failure on purpose, to then be able to point at how horribly bitter and divisive we are
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Yep, that's where I'm at with this.

Rather than just plain old misunderstanding and confusion this has gone beyond the absurd.

Surely this has to have been deliberately set up so that they can conclude what they want to conclude, claim they've covered as many different viewpoints as possible and that no group was happy. As no one was happy the conclusion of the IAG must therefore be independent and correct, divisive though it maybe.

This is a fine example of what happens when politics takes control of science.
 
Trish said:
The last thing a group examining scientific methodology to ensure the review is carried out in a valid way needs is someone convinced on the basis of their n=1 experience that they know 'the cure'.
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Of course, there wouldn´t be a knowing the cure. But they could be clever enough to know a hypothesis.

And this could be interesting because such a hypothesis might include a mechanism for exertional intolerance.

The point is that researcher at start here in all this GET stuff in fact don´t ask the right questions. I know though, imagination and fantasy - although necessary for good ideas in science - are not part of the scientific technique, and you can make up any technically proper paper with containing complete rubbish.

In so far, there even might be no difference between GET scientists and at least most of n=1 people (only that the first ones may have the better methods at hand).


I am going to repeat myself: without power of judgement only nonsense is produced.

Sly Saint said:
There is also a problem with the definition of recovery.
Presumably they won't be using the PACE version, so if that's not acceptable.......
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This is in fact a clever point, as it seems to referre to a basic act of knowledge like "This is red" (which can be true or false). Such a basic act is not part of the scientific method but is a prerequisite for science.

But the seemingly basic act: "This patient has recovered" is in fact not simply visible, and therefore a matter to investigate as well. And here it shows up, that it is not properly done, and the whole thing can be a lie about people.

I remember slightly "Why are the criteria for recovery so lax? Because otherwise we had no meaningful recoveries." (Micheal Sharp to students, I believe).

This then is what it can come down to:
rvallee said:
No need for conspiracy, it's consistent with the last few decades and with what Cochrane does. They are the establishment now and like all institutions they fall for the iron law of institutions, they are in the business of self-preservation and nothing else.
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Hello,

Following the news from Cochrane that they are seeking someone who has 'recovered' from ME to join the IAG, I'm wondering whether to put myself forward. I have mixed feelings about this role and would only apply if the wider community thought I might be a suitable person, so I'd really appreciate hearing any thoughts you might have on this member's only thread here https://www.s4me.info/threads/shall-i-apply-to-join-the-cochrane-iag.21845/ (Thank you so much, @Trish , for setting this up!)

Katharine
 
Just going to leave here for no reason whatsoever a typical remission (emphasis, not quite recovery) story, by far the most common one I see (out of hundreds and counting), wondering how much that really helps, if it's really relevant to take spurious correlations one way, a signal of sorts, while ignoring all those bits of noisy static that should remind anyone exactly how people latch on to various correlations for ineffective treatments, whether it's a good luck charm, mustard ointments or singing to any of a number of dead gods.

I have read a few stories of people reporting that exercise was crucial to their recovery, though it's the least common I see. I have seen many attributing it to various other reasons, from Ivermectin to Niacin and coenzyme this or even acupuncture (and of course in some cases, vaccination), though there are so many none stand out. This is, however, the most typical story, the same kind we find with recovery from any acute infection, from which all sorts of bad correlations could be cherry-picked if one really wanted to, which is the essence of the BPS model and its various false attribution errors. This is the process from which folk remedies became fashionable, whether actually effective or not.

And I really hope this here is an opportunity to move away from the bizarre clinical model of "actually, correlation is just as good as causation if we do a bunch of interpretative mathemagics on it and make sure only like-minded people are involved in the interpretive dance". I'm not pointing at the rest or fasting here, but on the "I don't know".

 
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