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

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.

[/USER]

 

Another copied post from the same thread:

 

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. ]

Code:

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

Code:

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

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. .]

 

The gist of some of Brian Hughes' and others' quotes on Twitter put in one sentence by @alex3619 :

"Clinical psych can use objective outcomes for GET, they just fail when they do, every single time."

 

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" [*]

[*] 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

 

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.)

 

Leave here another link that I hope is self-explaining -- I'm sure there is a Tweet somewhere that summarizes the the gist of this:

(HRA= Health Research Authority)

Trial By Error: HRA Report Does Not Vindicate PACE

https://www.virology.ws/2019/02/06/trial-by-error-hra-report-does-not-vindicate-pace/

Forum thread here.

 

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."

 

Code:

https://twitter.com/MTackCVS/status/1431161452711268352

 

https://threadreaderapp.com/thread/1382258225144336386.html

Code:

https://twitter.com/GeorgeMonbiot/status/1382258404215914498

 

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/

 

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'.

 

A reminder:

 

A common sense rebuttal on the argument that 'subjective results are the only important ones because it is how the patient feels that matters':

 

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?

Edit: grammar/ wording -- apologies if previous wording implied Lou Be Lou should have added references to their post.

 

I'll see if I can find the links for those quotes and put them on the post under each quote @MSEsperanza. That will take some time. Just about finished for today.