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

[Andy]

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'.

 

[Penelope McMillan]

Sorry if this is covered already, but I was prompted to wonder after reading that patient experience whether the experiences of severe ME/CFS patients will be part of this?

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.

 

[Trish]

The IAG report for July is published:

This is the third monthly report on progress with this project. You can see a list of these reports here. This month, there are updates on:

• Progress on developing the first document for consultation, including comparing the methods of major recent reviews by other groups;
• Membership of the IAG; and
• Developing processes and policies for consultation and engagement.

Along with this report, we’ll be updating bios and disclosures of interest at the end of the month as needed. This month, there is an update for me.

More at link:
https://community.cochrane.org/orga...igh-profile-reviews-pilot/cochrane-exercise-1

 

[Midnattsol]

They will find a recovered pwME to join the IAG? And they've also included the recent CDC evidence review in their analysis? Not sure how I feel about that.

 

[Trish]

I note this:

A tenth member is to be appointed by the IAG, and that has resulted in considerable debate and lobbying. Cochrane’s editor-in-chief, Karla Soares-Weiser, and I met to discuss this, and agreed to expand the IAG to add an additional position for person who has recovered from ME/CFS. Suggestions for this 11th position are welcome by August 22 to: Cochrane.IAG@gmail.com

Why? Is the obvious question.
The IAG needs poeple on it who understand things like trial review protocols, clinical trials, statistics, science, validity of outcome measures etc. Recovery from ME would be somewhere near the bottom of my list for representation. It's not about opinions about what supposedly led to an individual to recover, it's about science.

This whole process seems to me to be so tied up in 'balanced representation' of every permutation of patient experience except the one essential - a thorough understanding of clinical trials, and ensuring that valid scientific conclusions are reached in the review.

 

[Caroline Struthers]

I note this:



Why? Is the obvious question.
The IAG needs poeple on it who understand things like trial review protocols, clinical trials, statistics, science, validity of outcome measures etc. Recovery from ME would be somewhere near the bottom of my list for representation. It's not about opinions about what supposedly led to an individual to recover, it's about science.

This whole process seems to me to be so tied up in 'balanced representation' of every permutation of patient experience except the one essential - a thorough understanding of clinical trials, and ensuring that valid scientific conclusions are reached in the review.

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.

 

[rvallee]

I note this:



Why? Is the obvious question.
The IAG needs poeple on it who understand things like trial review protocols, clinical trials, statistics, science, validity of outcome measures etc. Recovery from ME would be somewhere near the bottom of my list for representation. It's not about opinions about what supposedly led to an individual to recover, it's about science.

This whole process seems to me to be so tied up in 'balanced representation' of every permutation of patient experience except the one essential - a thorough understanding of clinical trials, and ensuring that valid scientific conclusions are reached in the review.

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:

 

[Andy]

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

 

[MSEsperanza]

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.

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

 

[petrichor]

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:

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

 

[Trish]

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.

 

[Trish]

Most of the people I have come across who make public claims of recovery from ME/CFS do so in order to sell their 'recovery story' which usually includes claims of cures by unusual means. 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'.

 

[Sly Saint]

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

 

[Trish]

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

Surely not. I may not have agreed with some of the appointments, but I would trust Hilda and the rest of the IAG not to make such a ridiculous misjudgement.

 

[Hutan]

Surely not. I may not have agreed with some of the appointments, but I would trust Hilda and the rest of the IAG not to make such a ridiculous misjudgement.

I'm not sure that it is much more ridiculous than deciding that 'recovery from ME/CFS' is an appropriate qualification for assessing the scientific quality of the evidence for GET.

The cast of diversity seems to grow ever larger in this public relations exercise. Why shouldn't Lightning Process supporters deserve a spot on the IAG to bring their unique perspective too?

 

[chrisb]

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.

 

[Robert 1973]

At this point, nine members of the IAG have been appointed including me – you can see their bios and disclosures of interest here. A tenth member is to be appointed by the IAG, and that has resulted in considerable debate and lobbying. Cochrane’s editor-in-chief, Karla Soares-Weiser, and I met to discuss this, and agreed to expand the IAG to add an additional position for person who has recovered from ME/CFS. Suggestions for this 11th position are welcome by August 22 to: Cochrane.IAG@gmail.com

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.

 

[Sly Saint]

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.

 

[Jonathan Edwards]

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?

 

[chrisb]

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...