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

Perhaps I wasn't clear, she did not start her career as a scientist or doctor, she started providing input from a consumer perspective and did her PhD later. This is what I mean by background - the PhD came later.

 

https://twitter.com/user/status/1228387074451132416

https://twitter.com/user/status/1228381907215421445

https://twitter.com/user/status/1228382664882872323

https://twitter.com/user/status/1228289137578475520

https://twitter.com/user/status/1228330328722464768

Of course people don't necessarily need to have publications to be on the committee. I decided I wouldn't try to make the list too long.

A number of other people who don't have personal connections with the illness could also be good but when one widens about that much, it means pretty much anyone in the world could be proposed, e.g. many of those who promote exercise therapy.

 

But if I understand correctly, this will just be an advisory group, so not the people who will actually be writing the new review?

 

I wonder if Hilda has been invited for a beer yet. Or perhaps lunch.

 

Yes, we’re still waiting to hear who will write the actual review. This is a good start though.

 

I just read Hilda’s second blog which I missed when it was published.

A couple of points of interest which may have been noted elsewhere:

1. I see that David Colquhoun (prominent pseudoscience buster) has posted a comment below the blog:

2. I was not previously aware of this part of Hilda’s disclosure which appears at the bottom of the blog:

I have just submitted the following responses to David Colquhoun’s comment which I assume will appear after being vetted:

“As an ME patient, I would say:

1. ME/CFS is probably heterogeneous, but that doesn’t mean that the diagnosis is arbitrary. It means that it is probably heterogeneous. There are different diagnostic criteria, some of which are more useful than others, and within those criteria there are likely to be different sub-groups and probably different illnesses. However, that doesn’t mean that the diagnosis isn’t useful. The recognition that there are significant numbers of people who are disabled by illness who meet specific diagnostic criteria (particularly post-exertional malaise, or PEM) is important and necessary for advocacy and research. Equally, I strongly agree with the NIH panel which concluded that “the continued use of the Oxford (Sharpe, 1991) case definition may impair progress and cause harm” (as quoted by Hilda above).

2. A bit like CFS, “cause” seems to be a heterogeneous term used to mean different things. There appear to be a number of triggers for ME/CFS, such as EBV, but knowing the triggers is less important than understanding the mechanism, identifying biomarkers, and developing effective treatments. There has been some limited progress made in identifying potential biomarkers (see, for example, this blog on evidence of “something in the blood”: https://mecfsresearchreview.me/2019...avis-more-evidence-of-something-in-the-blood/) and hypothesising about possible mechanisms but there is still a very long way to go.

Unfortunately, the PACE trial and Cochrane reviews, along with the “collective ad hominem attack” on the ME community by a small group of influential researchers (referred to in Hilda’s previous blog: https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/) appear to have had a significant effect on inhibiting progress by perpetuating the myth that ME/CFS can be reversed by CBT/GET.

3. Agreed. Moreover, the FINE and PACE trials provide good evidence that CBT/GET are ineffective treatments for ME/CFS, even when using very broad and diagnostic criteria.

Thanks for taking an interest in this, David. And many thanks to Hilda for your blogs and for your ongoing efforts to try to help to resolve the issues which have been so harmful to patients.”

 

Interesting because David has previously said ME/CFS is too complicated to comment on and not engaged.

 

My take on this. It is probably heterogeneous but I suspect not as much as some people think. The reason for the perception of CFS being very heterogeneous are the older Fukuda criteria and the Oxford criteria.

The biphasic onset peaks in that one scandinavian study don't look like a diagnostic label with very high heterogeneity to me but something more specific, although it could easily be a few illnesses.

There are also some reasons to think that PEM is not a general feature of major chronic illness but something more specific.

I think one can also see some patterns in how patients describe their illness onset and course.

Point 2, yes, nobody knows what causes it and it's important to repeat this because there's so much bad information out there.

Point 3 yes. It's not even clear that there any mildly effective treatments but there probably are, we just don't know due to lack of studies.

 

I thought Colquhoun was being a bit sneaky with 'no very effective treatments'. Being the sceptic he is why didn't he say we do not know if any treatments are effective.

I am also not sure about the arbitrary bit. High blood pressure is very heterogeneous but the definition is not arbitrary - it is a high blood pressure.

 

I do remember one tweet from Sharpe, after her publication of the consumer-contested evidence article, telling Bastian he wanted to educate her on some assumptions about ME (or I think it was assumptions about us, I have no idea why he used that word but I remember it because of how weird it was, the man is such a weirdo). We don't know if the invitation was accepted but it definitely was offered.

 

Toes curling at thought

 

Luckily for us, Bastian is far more intelligent than Sharpe...

 

https://twitter.com/user/status/1229050809704255490

 

Yes, I imagine the old-boy network must be feeling the need to retch out.

 

Nice word choice

 

I thought it was a Cochrane word choice?

 

Where was that?

 

Sorry, we are being frivolous.