Submission to the Scottish Parliament by Jonathan Edwards

@Dx Revision Watch
Any comment to inform a response?

 

Could we submit the S4ME briefing document in support of the petition ( if we have not done so already?)

 

@Lucibee
Please don't leave, I really appreciate your insight and your "digging out the detail" from PACE trial minutes etc.

 

I' m afraid too little sleep and more than 1 glass of Malbec are not a good combination!

 

Lucibee posted the following on her profile, three days ago :

For the sake of my mental health, I'm going to have to leave this forum for a bit.

I really hope she comes back sooner rather than later.

 

Yes, absolutely.

 

Oh, a survey. I really wish people would stop referring to a bunch of questions and opinions turned into numbers as "evidence" or "data", and using it to dismiss much higher quality evidence. And what does "did suggest" mean - did they all say ME is bollocks or didn't they, and how do they know, and how was the question phrased? And was it really "all British neurologists" or 8 out of 10 docs in a room who said their NICE guidelines preferred it?

 

Sounds a bit like the survey the MEA did

 

This perhaps?

http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/

From 2011 (7 years ago, there's been some research progress since then), Authors from King's College, published in the Journal of Psychosomatic Research, "84% of respondents" has been turned into "all British neurologists" now, so it really is a case of "8 out of 10 cats who expressed a preference". Call the Advertising Standards Authority somebody.

 

I suspect the comment is based on this, but, as always, there is no reference, just a generalisation.

 

As far as I know the clinic wasn’t up and running until around five years ago, I went to an informal meeting where some of the staff spoke about the work the clinic did. They were clearly trying to put a ‘we believe ME is neurological’ front on their work, but was also obvious they were conflating ME and fatigue. They don’t for example accept ’entrenched’ patients, whatever the heck that means. I wouldn’t touch them with a barge pole.

Indeed at the event, I asked the senior physio, who was, I have to say, very nice to me, what she could do for me and she said probably nothing that I wasn’t already doing for myself.

I did not know that Edinburgh was involved in PACE recruitment, and am just pretty horrified that NHS Lothian are not accepting aspects of the petition. It beggars belief. But I guess am not really surprised. I also think the clinic is a member of BACME, Esther Crawley’s little outfit.

 

David Wilks was a centre leader during PACE, he was seen as the "ME specialist" in Lothians, and Sheena Spence (physiotherapist) was also involved in PACE. I've heard Dr Wilks has just retired.

In the petition background info we just used Carol monaghan's quote! So they do not accept the quote?

Also does this just mean we can just... not accept stuff now without providing evidence or counterpoints?

We get to respond to the submissions, so this may come in handy- thanks!

 

LOL - that's what I thought. Have you written to them to ask exactly what it is that they do not accept?

Thanks for your work.

 

Not yet! Still expecting a lot more submissions and want to see what others says before we decide how to phrase our response. Problems with PACE should hopefully be pretty comprehensively explained by different submissions, including S4ME's briefing (thanks @Trish!)

I wondered if their point about neurological was because we said neurological disease, rather than neurological condition? But am unsure about their point about WHO, am trying to contact those more knowledgeable than me on this point, so if there's anyone on this forum who can offer insight would be most welcome.

 

Thank you for this great document, @Jonathan Edwards

I have written my comment in portions and come late to this discussion, not having read all comments. Thus, anticipated apologies for a likely disjointed and maybe redundant reply.

In addition to the points highlighted by earlier comments, Jonathan Edward's piece in my opinion encloses useful points to be pursued beyond addressing national authorities, i.e. could be helpful addressing those institutionalized forms of medical science traditions that continue to back the Dysfunctional Beliefs and Behaviours model* of ME/CFS on a broader level -- most importantly maybe Cochrane.

I am a bit worried about how to handle the general question about trial methodology in psychological medicine, though.

With regard to the current BPS approach to ME and "functional/ somatoform disorders", I fully agree with this:

Yet I see two possible conclusions:

1) Most psychiatrists and psychologists are aware of the problem, and might integrate this awareness in their medical practice, i.e. be very cautious to apply treatments labeled in trials as "moderate" effective, whereas "high evidence" wouldn't even exist as a label for treatments. (Actually does not exist in the NICE guideleines I skimmed, also does not exist in the Cochrane review of GET trials. Of course these sources are not sufficient to draw any conclusions).

Malpractice then would be only the fault of a minority of psychiatrists and psychologists neglecting an otherwise acknowledged methodology problem and propagating unsupported claims of "moderate effects" or even "high quality" evidence. Since the evaluation of ME trials is allocated to the Cochrane "mental health group" (and I don't think there is a multidisciplinary assessment in the Cochrane "mental health" group), ME trials are evaluated solely by reviewers who are used to see their low standards as regular. Physicians of other disciplines however rely on the Cochrane evaluation with other standards in mind.

or 2) -- there is, in general...

On the one hand it's hard to imagine that there might be a general weakness that has not been addressed before within the disciplines of psychology and psychiatry. Is there really no past or ongoing debate within these disciplines regarding both the participants' and the investigators' bias inherent to the methodology of treatment assessment, necessitating objective measures when blinding is not possible?

Depending on how this question is to be answered, the following sentence could be over-generalizing:

On the other hand, I know from my (non-medical and non-psychological) field of expertise how persistent elephants in a room can be, and how scholars hand on blind spots until these blind spots become an essential part of professional knowledge.

I see the risk of exposing an affront instead of an elephant, though.

Thus I would like to know what the more sophisticated psychologists and psychiatrists think about the challenges of common psychological / psychiatric trial practice due to both investigators' and participants' bias. It would be great to know what e.g. the psychiatrists and psychologists who signed the open letter (by @dave30th and Vincent Racaniello) to the Lancet think: Do they see a general weakness in methodology which within their field of expertise has not been properly addressed yet? Or is it rather a generally acknowledged weakness which only some investigators and reviewers within their field, but more often medical and health care professionals external to their field, fail to address and handle properly?

Any way, I think with highlighting the starting point that

,
there might be an elegant way to address the challenges in trial methodology of treatments that cannot be blinded, free from any flavor of denigrating a whole discipline.

In an other thread, @Sasha put it in plain language:

Perhaps gift-wrapping ME as one of the most urgent multidisciplinary riddles that needs new sophisticated tools to get solved, while the solving process will provide findings and new insights into the understanding of other medical challenges, and at the same time will lay open blind spots in diverse areas of medical research, practice, and healthcare, could attract more top level scientists to investigate in high quality research on ME?

* @Hutan 's term: https://www.s4me.info/posts/84532/

 

Good question for @Carolyn Wilshire.

 

I am not quite sure what you are querying or suggesting @MSEsperanza.

This is not an issue of malpractice but sloppy practice. All psychiatrists are aware of the unreliability of evidence from unbounded trials with subjective endpoints. Anyone who knows why we have placebo-controlled trials knows it. But people are very good at finding ways of not applying what they know to instances in front of them. They find ways of forgetting the principles when it is convenient. That occurs through medicine - doctors are probably no more rational than anyone else. But peer review systems are supposed to encourage disinterested parties to stand back and apply the principles consistently. In psychological medicine this is clearly not happening. I say that partly because of what we see published and partly because of comments I have myself received from referees in response to my various manuscripts about ME and PACE. There is a remarkably consistent message that 'OK we know this sort of evidence is unreliable but you should not raise it as a general issue' (presumably because it would make the referee's research look pretty thin as well).

It is imperative to criticise the CBT and GET trials on these general terms because the specific faults can easily be ironed out. The PACE trial could deb repeated tomorrow using the outcome measures that the authors found worked best for them in the end. So there would be no changing of outcome measures, no anomalies about recovery being worse than entry, no worrying newsletters or anything. The trial would be spotless in all such respects. And it would get the same result. The spurious positive result in PACE is not due to all these peccadilloes. It is due to built in subjective bias. It will be entirely repeatable. Every form of MUS can have its own positive PACE trial that is squeaky clean except for the fatal flaw of bias.

Psychiatrists have to look after people somehow. So they have to work with unreliable evidence in this sort of context. Nobody is going to suggest that because we have no reliable trials of talking therapies for depression that nobody should talk to people with depression. But what need to be avoided are spurious claims of an evidence base from trials that look superficially like good drug trials but in reality are useless.

 

Also, just because patients feel better on some measure after some feel-good intervention, which could be talk therapy or a stay at a spa, does not mean that the illness is being successfully treated. Referring to such an intervention as treatment for an illness would be misleading.