Useful arguments regarding the evidence provided by psychological and biomedical ME research?

Snowdrop said:
In the media of late the BPS cabal rely over and over on saying that 'some people benefit, we know this from clinical experience'.
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I think “clinical experience” has the potential to be a self-fulfilling prejudice.

In hospital once, I was on a cocktail of intravenous antibiotics, and developed an allergic reaction. One doctor said it was antibiotic X, and when I asked how he knew, he said “because it always is”. Which of course then gets recorded as another statistic reinforcing the notion of antibiotic X causing such a reaction. When the consultant came to see me later and I queried this with him, he fully agreed with my concerns. The doctor may have been right, not sure, but the point is that such unproven assumptions add to the pool of what becomes accepted as clinical experience "evidence", but is nothing of the sort.

The point being that if a medic has a prejudiced belief in the worth of a treatment, that prejudice can become self-reinforcing if the evidence is flimsy but instances of its falsely-perceived benefit get added to the stats … and the bogus stats then get used to argue the validity of the prejudice! The stats become especially bogus where degradations in health are never seen due to patients simply dropping out of treatment, or because the medic’s prejudice leads them to not record it for what it is.
 
Hope it's OK to copy here @Yvonne's post from the thread on the NICE guideline delay.

Yvonne said:
On the face of it, the Sunday Times article is the author’s work in which he expresses his personal opinion with the best intentions. I see instead a carefully crafted article with a very familiar narrative of beleaguered good doctors, who only want the best for their patients. I suspect it is part of a PR campaign which started with the resignations from the committee, then the BMJ article, and which will continue, perhaps intensify during the pause. Here is my analysis:


1. Framing the pause as a patients vs professionals dispute.
"We need to stop quibbling over guidelines"
"This suggests patients and professionals don't all agree."

2. Suggesting ME is not a real disease:
Suggesting it is not real by saying it is real.
"... acknowledging their condition is real"

Why would you even question whether it is real or not? Do patients with asthma or arthritis or diabetes need acknowledgment that their condition is real?

Raising controversy over classification:
"... which the WHO, controversially to some, classifies as a neurological disorder."

Would anyone mention the WHO classification for any other disease?

3. Emphasising the psychological effects by placing them before the physical effects.
"They can feel isolated, alone and unbelieved. Unsurprisingly, about a third of young people we see suffer from significant anxiety or depression. Psychological distress is not the cause of their condition, but it is too often the consequence. Many find the psychological support we offer them extremely helpful, even if it is not a cure."

You could say this about any chronic disease.

4. Framing ME as unique in its heterogeneity.
"With such a heterogenous group in terms of cause, severity and recovery, it's difficult for Nice to come up with guidelines that capture all this variety and a one-size-fits-all treatment plan. So let's just admit and accept that."

This is a false argument. You could say that about any disease. It is like saying ‘Let’s not have a NICE guideline for arthritis because some people just have painful hands while others are unable to walk, some benefit from knee replacement and others don’t.’

"and treat patients on a case by case basis"

All patients with any disease are treated on a case by case basis - that’s the doctors job!

5. Blaming patients for their misperceptions.
"'Graded exercise therapy' - one of Nice's sticking points - as described by some patients may sound awful, but it's not something I recognise"


6. Implying that disagreements result from immaturity.
"We all need to grow up, work together and embrace differences of opinion and strategy."

7. Suggesting alternative therapies are OK for ME
"I have met people with ME/CFS who are desperate for answers and experiment with low-dose naltrexone, anti-virals, acupuncture, mitochondrial supplements, nutritional supplements, yoga, meditation, mindfulness, solution-focused hypnotherapy, the Lightning Process, the Perrin technique, an anti-inflammatory diet, cold showers and more. We need to know if any of these work, and in what circumstances."

For what other disease would a paediatrician suggest alternative therapies? Dangerous and unethical IMO, especially for a paediatrician.

8. Ends with a reasonable plea - surely only an unreasonable person would disagree?
"Let’s start by publishing the Nice guidance, even if we don't all agree on all of it. What we do agree on is that this is a real, deeply unpleasant physical illness that blights the lives of many, and long Covid makes better research and treatments an urgent priority."

Except that research and treatments should have been an urgent priority for decades
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Another copied post from the same thread:

MSEsperanza said:
Code: 
https://twitter.com/drphilhammond/status/1429540281091858434

I'll try to respond to the second part of the question.

As far as I'm aware there is no evidence that fatigue associated with different illnesses generally is the same type of fatigue or has the same cause or will respond to a certain treatment in the same way.

There are different types of fatigue and fatigability and different patterns. Different types of fatigue can also co-exist and add up.

Plus, fatigue / fatigability is only one of many symptoms of ME.

Independent from the type and cause of fatigue: If people can manage to exercise 5 minutes and that can be improved to (still only) 15 minutes without any payback, in which way could this help people in managing daily activities?

That PEM is not well researched and has different forms doesn't mean that, in general, it is not distinguishable from both immediate fatigability and normal, physiological reactions to exercise.

The delay with which PEM occurs varies. PEM still is a distinct pattern.

I think whereas PEM is a core symptom of ME, 'deconditioning' is not a mandatory feature of the illness in its less severe forms, but can be a consequence of living with the illness for the more severely affected. I don't know if there are reliable figures that support that last sentence. If I remember correctly, it was shown in clinical trials that not all pwME are abnormally 'deconditioned'?

So treating patients with different illnesses and different types of fatigue in your clinic is only wrong if you don't assess symptoms properly and don't use evidence-based treatments based on that assessment.


(I have the feeling, the main purpose of Dr.Hammond's recent twitter activity is trying to undermine the definition of ME that includes PEM as a core symptom.)

Edit for clarity (added a 'not').

Edit 2 to add: The delay with which PEM occurs varies.
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One of @Adam pwme 's very helpful Twitter threads - comment on Tom Chivers' article quoting Jonathan Edwards, Chris Ponting and others -- forum thread here.

[minus the quoted subtitle, see here. ]

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Code: 
https://twitter.com/ABrokenBattery/status/1430417304106459139

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Code: 
https://twitter.com/ABrokenBattery/status/1430417306849619971

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Code: 
https://twitter.com/ABrokenBattery/status/1430423733810962434


[Would like to add a transcript of every linked Tweet. At least, will try to add more links to the single quotes later -- they're all included in the linked Twitter tread though. .]
 
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Reply to Michael Sharpes' or Simon Wessely's variations on 'I would suggest reading the paper' (i.e. the PACE trial paper)/ ..."obtaining the full facts of the dispute before rushing to judgement" [*]

Jonathan Edwards said:
I wonder what Michael Sharpe thinks the commentators have missed in the PACE paper?
Maybe the truncated Y axis?
Maybe the inappropriate comparator arms?
Maybe the absence of any significant objective changes?
Hard to say.
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[*] Simon Wessely in a comment to Steven Lubet, 12.11.2016, https://www.thefacultylounge.org/20...0b#comment-6a00e54f871a9c883301b7c8aeee59970b

Response from Lubet: https://www.thefacultylounge.org/20...simon-wessely-defender-of-the-pace-study.html
 
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On the issue with the combination of subjective outcomes in unblinded trials:

"If results are unreliable, they cannot be considered reliable just because it is difficult to get more reliable ones.”

In the context of using objective outcomes not instead of but in addition to subjective outcomes, the quote is:

"If results are unreliable, they cannot be considered reliable just because it is difficult to get more reliable ones. That this spurious issue is repeatedly raised just emphasises the existence of the difficulty.

"Moreover, methods for mitigating the difficulty exist. The American College of Rheumatology criteria of improvement for rheumatoid arthritis, rather than summing scores from disparate variables, uses a multiple threshold system so that a single improvement index indicates that key subjective outcomes are corroborated by relevant objective ones.

"I am not aware that tools such as this have been applied to ME/CFS trials."

Source: Edwards, J, The difficulties of conducting intervention trials for the treatment of myalgic encephalomyelitis/chronic fatigue syndrome: Expert testimony presented to the NICE guideline committee, 06.09.2019, https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3
 
In addition to the post above, copied from the thread on Ton Chivers' article:

Just once again think we perhaps should prepare counter-arguments for points that critics will focus on? (Especially for sharing the article on social media.)

E.g.: In addition to the essential points I think Chivers really understood from Jonathan Edwards' expert testimony, it's also actually possible to apply proper research methodology in the field of ME.
  • There are objective measures that are applicable for assessing improvements and deterioration in ME --- see Brian Hughes' Twitter thread here -- forum post here.
  • It's also possible to use subjective endpoints in addition to objective measures as primary endpoints. So using objective measures does not mean to devalue subjective symptoms like pain. But relying only on subjective outcomes in unblinded trials or switching primary endpoints and/or selecting only those points that are likely to support researchers' underlying assumptions (bias), isn't OK.
Edited (wording).

Apologies for being repetitive with these points.
 
Again, help with this collection by adding arguments, Tweets, transcriptions and sources much appreciated, including criticism/ correction of arguments I posted.

(I won't be able to work on this for a couple of days.)
 
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And another link to a useful source from which some sentences could perhaps be extracted for shorter responses:

Patricia Davis, Re: Management of post-acute covid-19 in primary care - A warning to Post Covid sufferers and their clinicians, The BMJ

https://www.bmj.com/content/370/bmj.m3026/rr-7

"People with ME/CFS are battered on all sides by a persuasive mix of treatments promoted on the basis of professional eminence, charisma, or compelling anecdotes, but devoid of good research evidence of efficacy or safety.

"First, there is the NHS itself. CBT and Graded Exercise Therapy (GET) have been the subject of numerous badly run and inaccurately reported clinical trials which showed, at best, transient improvement on inadequate questionnaires easily influenced by therapists. They showed no long term benefit, and no improvement on objective measures such as fitness or return to work [5]. Many patients report long term harm [6]. Yet the NHS still provides CBT/GET. The NICE guideline and Cochrane Review are currently being rewritten.

"Second, there are the multitudes of 'alternative' therapies with enticing sounding names, or named for their founders. None with any sound evidence of efficacy and safety [7]. All potentially eager to sell their wares to unsuspecting post Covid patients.

"Third, there are our fellow patients. ME/CFS is a fluctuating condition, so it is impossible for individuals to know whether to attribute an upswing or remission of symptoms to whatever treatment they were trying at the time, or to blind chance. It is a cause of great concern that we need to warn people with ME/CFS, and people with Post Covid symptoms, against a tiny minority of ME/CFS sufferers who are determined to promote what they believe has cured them.

"Social media campaigns are promoting unproven treatments for ME/CFS and actively targeting post Covid groups too. Some of these may be merely useless, like assorted diets and expensive therapies, but some are unproven and potentially dangerous, such as spinal surgery."
 
MSEsperanza said:
"Clinical psych can use objective outcomes for GET, they just fail when they do, every single time."
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The same appears to apply to CBT, of course -- see this article by the late Graham:

McPhee G. Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome. Journal of Health Psychology. 2017;22(9):1181-1186. doi:10.1177/1359105317707215

https://pubmed.ncbi.nlm.nih.gov/28805529/

Abstract

Most evaluations of cognitive behavioural therapy to treat people with chronic fatigue syndrome/myalgic encephalomyelitis rely exclusively on subjective self-report outcomes to evaluate whether treatment is effective.

Few studies have used measures appropriate to assessing whether cognitive behavioural therapy changes in more objective measures.

A review of studies incorporating objective measures suggests that there is a lack of evidence that cognitive behavioural therapy produces any improvement in a patient's physical capabilities or other objective measures such as return to work.

Future studies of chronic fatigue syndrome/myalgic encephalomyelitis should include some objective assessments as primary outcomes. If this is to include activity monitors, we first need a sound baseline dataset.
 
A second chapter could be added to Graham's paper about recently published papers on CBT not only for ME/CFS but also for other illnesses seen as functional disorders or 'MUS' occurring with 'established' chronic diseases.

Some recent examples, all covered by David Tuller and various co-authors, are summarized here:

"In the academic realm, the Journal of Health Psychology published a rebuttal I co-authored with a colleague of a high-profile paper by Professor Trudie Chalder, one of the lead PACE authors, in the Journal of the Royal Society of Medicine. Another journal, Psychological Medicine, published correspondence I co-wrote with a very smart patient to yet another example of misleading research from Professor Trudie Chalder [on transdiagnostic CBT for persistent physical symptoms].

"*The Journal of Psychosomatic Research published a correction of a study from Professor Peter White, another lead PACE author, based on my complaint. The study, a follow-up to a trial of a self-help graded exercise therapy course, found no benefits for the intervention, but the highlights section failed to mention this inconvenient fact. Now it does.

"*Also based on my complaints, two other journals–Psychological Medicine and the Journal of the Neurological Sciences—corrected papers that both made inflated claims about the cost of MUS to the National Health Service. The senior author of both papers, Professor Anthony David, is a long-time colleague of Professor Chalder and other proponents of the biopsychosocial approach to ME/CFS and MUS. "

And more of the same sort -- about:

  • Non-epileptic Seizures:
https://www.virology.ws/2020/06/26/...-commentary-promotes-eminence-based-medicine/

  • Irritable Bowel Syndrome:
https://www.virology.ws/2020/01/28/trial-by-error-more-on-the-mahana-therapeutics-deal/
 
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I realize the title of the thread should rather be something like 'useful arguments to rebut the mostly inaccurate or just bad responses from PACE trial defenders to critics'.
 
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A common sense rebuttal on the argument that 'subjective results are the only important ones because it is how the patient feels that matters':

Mithriel said:
I can't understand why psychologists keep insisting that subjective results are the only important ones because it is how the patient feels that matters. (They also say objective results are hard to measure which is also ludicrous but that is another story.)
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Mithriel said:
Phobias about things which are not dangerous like, say, a red ribbon are clearly psychological disorders. If a patient undergoes CBT the important result for them is not whether they can say they have no problems with ribbons anymore but actually being able to pick one up.
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Mithriel said:
If you have to do foreign travel for your job it is not important how you feeling about flying but whether you can get on an aeroplane. the objective result is what is important not how you are feeling when you fill out a form, especially as you are caught up in the enthusiasm of finally being told you are no longer trapped by a disorder. That is why results don't hold up at follow up.
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About some BPS proponents' claims of being harassed by ME/CFS activists.

Won't be able to succinctly word anything about that issue in the near future, but glad if anyone else felt up to add some useful points.

Maybe as a start:

I think it's worthwhile to both distance oneself from any harassment but also make clear that for individual cases of harassment there's no evidence that patients with ME/CFS were actually involved. Even if individual cases of harassment could be attributed to social media accounts that share also share topics of ME advocacy, there's still no evidence that the patient community supports such behavior.

Also I think @Lou B Lou 's post on another thread could be helpful -- perhaps someone could help with adding references/ links to sources?


Lou B Lou said:
These quotes are from a Comment to a Times article last year:

The ME/CFS Biobank:

“We do not comment on other's work except via academic publications, but are always happy to talk to the media, both about our own biomedical research and about the amazing kind community of #pwme [ME patients] who our nurses see every week, and who oversee our work through our Steering Group”



ME Research UK:

'Harassment of researchers'

“Our charity has been funding biomedical ME research studies for 17 years, and has supported projects in the UK and overseas. In that time none of our researchers has complained to us of campaigns of harassment, whether from patients or anyone else.
Robust individual exchanges of views may occur from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate”



Professor Chris Ponting, Deputy Chair of UK ME/CFS Research Collaborative stated publicly on 12/5/2019 (at #MillionsMissing Glasgow 2019)

“Can I state categorically that ME scientists are not being harassed by the ME community. We are listening to legitimate questions and concerns about science.”




Derya Unutmaz MD, Immunlogist, researches T cells:

“On the contrary, #MECFS patients are very supportive of our research. They provide us with great insights into this disease and even give new ideas. I personally learned a lot from the ME/CFS community. The interactions also provide us with the motivation we need – science is hard!”



Nicola Clague-Baker, Chartered Physiotherapist, 'PhysiosforME' org, has publicly stated:

“I am an #ME researcher and I have never been harassed by #pwme [people with ME]. I find #pwme the most helpful, informative, enthusiastic and caring people I have ever worked with”
@PhysiosforME



'The 2016 FOI Tribunal - QMUL v the Information Commissioner + Matthees (PACE Trial) - ruled that the assessment of 'ME activist' behavior was “grossly exaggerated” and that the only actual evidence was that an individual had heckled Professor Chalder at a Seminar.

These overblown claims of 'harassment' have been used for years by researchers who don't like their work being legitimately criticised, and subsequently by some journalists looking for a juicy story.'
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Edit: grammar/ wording -- apologies if previous wording implied Lou Be Lou should have added references to their post.
 
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