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

Not surprising, that's the Alan Carson who is an author on many of the FND papers, along with Jon Stone and the rest, that are relentlessly churned out to try and establish FND as a 'thing'.

 

I have been severe in the past.
The reason there are three of us as a team from ME/CFS Australia is that I am still mostly bedbound and have limited capacity.
I do my advocacy work as part of a team with Penelope Del Fante, who has been very severely ill in the past, and is currently mostly bedbound.
With two of us together, we can manage to do work that neither of us alone could even consider.
Geoffrey Hallmann is a listed team member, who will attend meetings if I am unable.

It is certainly our intention to bring the lived experience of severe ME to the IAG.

Additionally, I am heavily networked with people who have a wide range of illness severity. I seek their input and try to be transparent about when I am speaking for myself and from my experience, as opposed to when I am representing our community.

 

That's exactly what I thought! Why? Without a clear diagnostic biomarker (yet) how can you be sure a recovered person had ME in the first place? It depends when they were diagnosed, by whom, and using what diagnostic criteria. As you say @Trish this review is about sorting the wheat from the chaff in terms of scientific methods.

 

I honestly can't see any point to this. The best data we have is 5% recovery. It's not very reliable data but that's the best we have because people with neither stake nor interest in the matter keep refusing to do any better. So any such person could at best be representative of 5%, the exception. And in a fluctuating disease that is not only most commonly relapsing-remitting but also commonly misdiagnosed, this really can't tell any any more than asking what lottery winners did to win.

It's possible to find such a person. But to represent the 5% exception, seems either pointless or perilous. One clear thing that Long Covid has especially emphasized is how varied the illness presentation is, not only between people but in time. So much that it requires massive cohorts simply to glimpse the most common patterns. I can't see how 1 person's account can serve any purpose. It also depends on where we place the cutoff because the overall symptomology is too similar whether someone is ill for a lifetime or 6 months.

As usual, there is an XKCD for that:

 

I've got three words to add to this - 'Long' Paul Garner...

 

We could propose to also appoint misdiagnosed persons who are aware of their misdiagnosis.

I agree this move seems to be bad news (and ridiculous), but trying to think of the spectrum of recovered persons I'm aware of, how about Leonard Jason? (Not sure if he sees himself as fully recovered, though.)

Edited to add: Or Stuart Murdoch? https://me-pedia.org/wiki/Stuart_Murdoch

 

The 5% figure came from a review (https://pubmed.ncbi.nlm.nih.gov/15699087/) that mostly relied on people that had been sick for around 5 years or longer, and on studies that had relatively short follow ups (most with 2 years or less). For people sick for less than 5 or 2 years the chance of recover seems to be substantially better, and it also seems to be better for people that get sick when young

 

I hate to say it but this seems like a sneaky way to get the Lightning Process into the mix.

 

It would be interesting to know where the initiative for this move came from. Was it Hilda, or is it something imposed upon her? Sometimes those who say they agree with a decision have little choice.

 

Thanks for the latest progress report, @Hilda Bastian. Like others, I’m puzzled why you and Karla Soares-Weiser decided to add “a person who has recovered from ME/CFS” to the IAG. Please can you explain your reasoning behind this decision?

To be clear, I would have no objection to someone with relevant expertise being included who happened to have recovered after being diagnosed with ME/CFS, but I can’t understand why you feel it is relevant to appoint someone because that have recovered from ME/CFS, for the reasons others have given above.

 

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.......

eta: if they consider the PACE authors definition of recovery to be OK then half the ME/CFS community would be eligible for this appointment.

 

I agree that this recovery business makes a mockery of the whole exercise. Would one have someone who had recovered with homeopathy on a homeopathy review? Or someone who had recovered without homeopathy?

 

Well, we might not...