13 Nov 2017 | Tuller & Lubet: 'Trial By Error: The Surprising New BMJ Best Practice Guide'

Read the rest: http://www.virology.ws/2017/11/13/trial-by-error-the-surprising-new-bmj-best-practice-guide/

 

In the comments on the blogpost, someone notes that Peter White's name has been removed from the list of reviewers of Baranuik's paper. It doesn't now appear there, certainly.

 

The document referred to in post #37 on the Cochrane thread still includes PDW as reviewer

https://www.s4me.info/index.php?thr...nce-relevant-accessible.557/page-2#post-14072

 

Wow, I want to know what happened there. I am guessing he did not get along well with the other two reviewers and there were fierce debates. Was this the final outcome?

 

It's always distressing when there's not open peer review comments to read.

 

I really hope this isn't a BPS ploy to control the narrative and steal "CFS" leaving a tiny minority qualifying for an ME diagnosis with a new test that when rolled out hardly finds anyone positive.

How many people will be left with a functional or MUPS label?

 

It does seem like a move toward 'MUPS' type stuff is the best political ploy for them, and it's hard for such an amorphous group of patients to organise and push back.

 

I forgot to praise the blog itself! Really great to have Tuller digging into these things. It seems that there's so much to dig into.

 

Apparently there is new version of the document (updated in the last month):

Update: Nov 13th

We wrote this post based on a version of the guide that appeared recently and had been updated on July 31, 2017. That version lists Peter White as among three peer-reviewers. As commenters pointed out soon after the post went up, however, Peter White’s name is no longer on the peer-review list in the currently posted version of the guide, which indicates that it was updated this month. We are trying to determine when and why this change occurred.

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It would be interesting to see what other changes have been made if anyone can get their hands on a copy.

 

MUPS itself is such an idiotic concept. It's a logical contradiction to say that some combination of symptoms is the same underlying problem as some other different combination of symptoms merely because they're both as of yet unexplained. If they're unexplained, then they're unexplained! These people seem to love having their cake and eating it too.

It does feel like MUPS is a purely political construct to facilitate removal of patients with long term chronic conditions from medical and other support programs. And some researchers seem to be happy to produce junk science that provides the "evidence" needed to justify that.

 

Yes, by their logic, every disease was the same disease until technology advanced enough to prove otherwise. They're doing philosophy, not science.

 

I have to take issue with that.

In no way is that doing philosophy. What they are doing is merely lazy thinking and failing to analyse the linguistic concepts which they use.

 

https://www.docdroid.net/O4MrZ7P/freescience.pdf

 

Under Evidence Scores in the new version this has been removed:

Graded exercise therapy and overall improvement: there is poor-quality evidence that graded exercise therapy results in greater overall improvement in symptoms and functioning.[282] [208]

Evidence level C: Poor quality observational (cohort) studies or methodologically flawed randomized controlled trials (RCTs) of <200 participants.

More info from BMJ Clinical Evidence

 

and the reference to this study has also been removed:

282. Moss-Morris R, Sharon C, Tobin R, et al. A randomized controlled graded exercise trial for chronic fatigue syndrome:
outcomes and mechanisms of change. J Health Psychol. 2005;10:245-259. Abstract

 

You beat me to it .

 

Weird. Thanks for noting this stuff.

 

Not read through comments on this post yet. I am just skim reading the guide now, managed to get a copy, and will try to read properly. I have to say on reading so far I still have many concerns. Yes, the guide does point out there is research coming out that shows metabolic dysfunction and graded exercise can make many worse, which on the surface seems progress. Yet the treatment recommendations are still focused on rehabilitation and CBT. Also the document rightly says Oxford and NICE criteria should not be used but still wrongly recommends Fukuda as a valid criteria. It also criticises ICC criteria.

Also says the CFS definitions require PEM. Yet fails (purposely?) to point out that PEM is not essential under the Fukuda CFS defintion for a CFS diagnosis. Are they still wanting to include studies using Fukuda which we know uses mixed patient cohorts making the results dubious. A lot of the assertions use studies using Oxford and Fukuda criteria as evidence for them, even cites PACE as a reference for a claim.

To me, the BPS lot have their finger prints all over the document and I am not surprised until this month Peter White was listed as one of the peer reviewers. It's a mish mash of a guide in my opinion.

 

I've only skimmed through, but that was the impression I got too. A positive step from the utterly terrible positions the BMJ was promoting previously, but not a clean break from the past, and it certainly felt like White had his own 'suggestions' on the text. So long as the field remains so a mess, it seems premature to have any advice on 'treatment'.

Personally, I don't take firm positions on the criteria stuff at the moment. That also seems a mess.