Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/cfs 2017, Goudsmit

Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment

Abstract
The PACE trial is one of the most recent studies evaluating cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome. These interventions are based on a model which assumes that symptoms are perpetuated by factors such as misguided beliefs and a lack of activity. Our analysis indicates that the researchers have shown significant bias in their accounts of the literature and may also have overstated the effectiveness of the above treatments.

We submit that their approach to criticisms undermines the scientific process and is inconsistent with best practice.

In his editorial, Geraghty (2016) reviewed some of the factors that have made it difficult to interpret the findings of the PACE trial. Given its flaws, we have been surprised that scientists familiar with this illness consider the trial to have been carefully designed, rigorously conducted and ‘scrupulously analysed and reported’ (British Association for CFS/ME (BACME), 2011; Crawley, 2013; Miller, 2011). Like Geraghty and others, we have noted the differences in outcomes when the analysis used the original criteria for recovery detailed in the protocol compared to the less stringent ones reported in the paper (White et al., 2013; Wilshire et al., 2016). Moreover, we are disappointed that the researchers have continued to ignore sound evidence in order to promote the view that fear plays a major role in the aetiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and that increasing activity can lead to significant improvements (Spencer, 2015; White et al., 2011).

In this article, we focus on the researchers’ bias and lack of respect for alternative approaches. We believe that this has led to a misrepresentation of the illness, the minimisation of the reported adverse reactions to graded exercise therapy (GET) and a less sympathetic attitude towards patients (Liddle, 2015).

Recent examples of the researchers’ views can be found in the media coverage which followed the publication of the data collected more than 2 years after randomisation (Sharpe et al., 2015). Below a headline proclaiming that ‘ME can be beaten by taking more exercise’, one of the scientists involved in the trial was quoted as stating that ‘patients become terrified of exercise and physical activity for fear that it will make their illness worse. These fears can be overcome by cognitive behavioural therapy or a gradual increase in exercise’ (Spencer, 2015). He went on to say that these ‘are not magic cures – but this is the only game in town in terms of evidence-based treatments’.1

We recognise that articles in the media are not subjected to peer review and that people can be misquoted, but in the case of the PACE trial, many healthcare professionals have echoed these opinions in the medical literature. The message since the first article in The Lancet has been that both cognitive behaviour therapy (CBT) and GET are ‘safe and effective’ (BACME, 2011; Sharpe et al., 2017) or at least more effective than specialised medical care and adaptive pacing therapy (APT; White et al., 2011, 2017).

Given that the results of the trial were published in one of the most prestigious journals in the world, readers will have assumed that the article had been subjected to rigorous peer review. We can therefore understand that many will have been mystified by the negative reactions of patients, support groups and a number of highly qualified health professionals (Davis et al., 2016; Shepherd, 2015).

What most will not know is that for various reasons, scientists in the United Kingdom and the Netherlands have not been offered an objective and balanced view of the rationale behind the CBT and GET protocols for ME/CFS (Goudsmit, 2016; Sunnquist, 2016). Nor will they be aware of the flaws in the design of the various randomised controlled trials (RCTs), and the editorial policies which tend to relegate alternative views to the correspondence sections (Goudsmit and Stouten, 2004).

Other commentaries on the PACE trial have focused on different aspects of the basis, design and reporting of results. We wish to draw attention to the approach adopted by a number of the researchers behind the promotion of CBT and GET which may help to explain some of the anger in the patient and scientific community.

Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment - Ellen Goudsmit, Sandra Howes, 2017 (sagepub.com)

 

Glad to see this one and get this reminder of how simple and straightforward the facts are of what people have done and where the line is on this.

Is this from the time when a whole issue of Journal of Health Psychology was devoted to critique of PACE methodology etc? (as if that even half evens up the amount of critique that has been 'relegated' over the years)?

If so then 5yrs on it feels like it is worth re-doing/re-release + a brief update as an issue. Particularly with the question about whether the 'come to jesus moment' was ducked or is trying to be actively postponed.

It isn't like their data or methods became any more accurate by years passing. So did they act right/honourably about this and improve their methods and note inaccuracies? Where is the personal responsibility for them to undo the damage these awful words and inferences used inaccurately by certain individuals might have caused. It all begins with that. A sort of 'how/what did they do/where are they now'.

And listing the classic reactions we have had from some (trying their best to rewrite 'PEM/PESE' to a defintiion and meaning that means that is misunderstood, rewriting history 'it was only ever rehab', trying to do retrospectives, continuing the same poor level of methods, spreading rumours it was just patient lobbying, changing the narrative to 'stress' but in the aim to just soften doing the same thing and claim 'mind-body', pushing other narratives under other poorly defined conditions to further spread even worse methods and unsubstantiated slights on patients). And note the rise of anecdote-driven diversions from any science base from which to push ideologies and treaments in the rise of things like Recovery Norway and LP.

Interesting from a psychological point of view in how some react, but also from an 'industry' point of view?

 

As an aside, reading this one made me have a look at the following. I haven't added it because even though search doesn't bring up an entry here I wonder whether I just mightn't have found the right term:

PACE trial authors continue to ignore their own null effect Vink (2017)

https://doi.org/10.1177/13591053177037

I don't remember having read the following paragraphs before, which mention TNF and cytokine release, but if they do have possibility still (I assume there must be some debate as measures have been discussed here and if it were a 'big goer' still I'd have thought it would be commonly mentioned, but TNF didn't bring anything up for me here) then they do seem to make interesting sense as possibilities.

 

I think we need to give Ellen Goudsmit more recognition. She introduced the disease specific form of 'pacing' for ME, and was a co-author of the original London criteria based on Ramsays description of ME.

Both were hijacked and amended by the bps crew to suit their own agendas.

"Pacing is an activity management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible. First described by health psychologist Ellen Goudsmit in 1989,[1] it gives patients the advice to: “do as much as you can within your limits”.[2] Pacing recognizes research showing an abnormal metabolic and immunological response to exercise in ME/CFS and offers patients a middle ground between post-exertional malaise and the negative consequences of inactivity."

https://me-pedia.org/wiki/Pacing

"The London criteria came back into the center of attention when White et al. announced they were going to use the London criteria to diagnose ME patients in the PACE trial.[13] The actual version used in the PACE trial was however a modified version of the London criteria, not approved by any of the authors. Ellen Goudsmit for example wrote: “The version used in the PACE trial was not written by any of those who were involved with the London criteria. I’ve seen the manual and don’t recognize it.”[1]"

https://me-pedia.org/wiki/London_criteria

 

Actually, she didn't, although she may have been one of the early ones to acknowledge it was a thing. After I got ME in 1983 I learned about it from a 1982 book written by a New Zealand ME sufferer, and there is also an Australian man who keeps claiming on Twitter that he 'invented' it in the 1970s and that the concept was 'stolen' from him. Can't remember his name, but he did post documents showing he was talking about it that far back. So it was already around, but it may be that Ms Goudsmit helped bring it to wider attention.

 

Dr Goudsmit (I don’t agree with everything she complains about but think she has a point when complaining about this, which some people seem to have done deliberately).

 

People who work in medicine and academia are obliged to use the honorifics specific to those professions appropriately and carefully. Laity confers freedom to use or ignore those titles as one wishes.

Personally I’d only ever use a surname, and I admit it would certainly be fishy of someone to call a bunch of academics “Dr” with the only “Ms” being a Phd holder. But that’s not what @EzzieD did.

 

Er, OK. I certainly didn't do it 'deliberately'. As she's a psychologist, I'd hadn't known about the Dr title.

 

OK. It’s from a PhD, actually done on pacing and ME.

Getting acknowledged that she is Dr Goudsmit comes across as very important to her so I thought it fair to highlight.

 

yes pacing as a concept was around a lot longer before. See mepedia link in previous post.
"Pacing is however more frequently used in the context of chronic pain where it has a background in operant conditioning. First described by Wilbert Fordyce in 1976,[18] pacing referred to a time-contingent and gradual increase of activity levels. Fordyce’s main idea was that chronic pain patients shouldn’t be directed by their symptoms but by plans, goals and targets. In this context, pacing referred to the careful planned route, based on positive reinforcements instead of the fear of pain, to reach those goals.[19] Often a task was broken up into manageable parts or quotas so the patient can go forward step by step with breaks in between. Although the principles of operant conditioning are no longer central, in the chronic pain literature pacing still frequently refers to a planned and gradual increase of activity levels."

Although the piece in mepedia says
"This form of pacing is quite dissimilar and sometimes even contrary to the form of pacing used in ME/CFS."
I'm not so sure that this isn't the form of pacing being applied across the board on the NHS, or certainly something very similar.
see thread:

NHS Talk Plus Video Modules for people with Long Term Conditions (LTC) | Science for ME (s4me.info)

 

The form of pacing I practiced in the early to mid 1980s was specifically for ME, not for pain or anything else (I didn't even know it was used for anything else), and didn't include plans, goals or targets. I heard about it in the news back then and via ME support groups, when ME was still viewed as biomedical before the psychs jumped in, as a way for people with ME to not overtax their little strength. The idea was to learn by experience how much activity you could do before starting to feel worse, take note of that duration, and then not exceed it. The book I read in 1982 said "We have to learn the limits the illness imposes and live within them, not up to them."

Prior to that, I'd been pushing myself hard to return to normal activities and to do vigorous exercise, making myself worse. When I learned about pacing, it was a revelation - I finally stopped getting worse and then slowly improving. No big professional multidisciplinary team was needed back then to teach you how to do it, just the ability to figure out your own limitations and stick to them. If you started feeling improved enough after, say, a few months, you could try doing a little more, but only a little, and back off if you got worse. There was no planned/graded increase of activity levels.

 

My assumption would be that it's a natural concept that some or many people would tend to arrive at by trial and error on their own, and so it isn't surprising to me if multiple people are credited as the first, because they all might have been the first in their areas or in their networks. I would doubt it has a single point of origin as applied to this illness. But I could be missing something.

 

Agreed and the consistency across independents who did do it in detail is perhaps the interesting part.

I’ve never understood did the life of me why if all clinics were going to do was ‘manage’ why they didn’t allow patients to describe their own pacing needs (which might be eccentric given variations across people in PEM and sleep reversal but also in age and fitness vs severity of PEM - someone might walk fine but then be bed bound for days where another walks slow etc) and then just sign these off adjustment wise.

And for HCPs primary job to have been the opposite of what most clinic ‘course’ seem to still be intent on doing the opposite of: advocating for individual patient needs at all their touch points AND being able to fo do because they now better understand his it various across different severities and people.

I do think when we all get bound up about ‘pacing’ and calling it ‘treatment’ rather than coping if survival - we forget it really is just a descriptor of the limitations we live under.

I find it so dystopian we’ve been left begging to get back to being sold our ‘blight’ as if it is ‘our saviour’.

would a load of middle aged male surgeons getting this have been ok with being told to micromanage their life to when they can nap or think. It’s just disgusting it is ever suggested as that in any kind of enforcement/could have avoided yourself sense. Particularly in younger people who’ve choices on whether they ever want to experience life things.

It should be seen as let’s all write down a life you would want to live as the best we can get health-wise if other people don’t frustrate it. And people start taking it seriously

 

(not having a dig by the way)
you mention the book on another thread about pacing.
"The Mile High Staircase by Toni Jeffreys (1982)".
does it actually use the term 'pacing'?

nor did I until very recently. But having looked at the 'pacing for pain' it explains where many elements and the general framework of the 'bad versions of pacing for ME' come from.

 

I can't remember whether it was specifically called 'pacing' in the book. But it described pacing as we know it, for ME. (If someone can find a copy of this long-out-of-print book, which I gave away when I recovered from ME in 1990 [only to relapse badly in 2005...], it would be interesting to see if the book called it pacing.) Yes that 'pacing for pain' does sound a bit reminiscent of the CBT/GET type of stuff, ugh.

 

that's already happening as we are included in MUS,PPS,LTCs

https://www.s4me.info/threads/nhs-t...r-people-with-long-term-conditions-ltc.32893/

(personally I would prefer 'energy management' which ties in with Jasons 'Energy envelope' theory; although its not perfect it is more in line with the original idea behind 'pacing for ME').