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

MSEsperanza

MSEsperanza

Senior Member (Voting Rights)
The idea of this thread is to collect useful *short* arguments to refute the claims most often used by BPSionists in reaction to criticism of GET and CBT as treatments for ME.

Note: Before you post here, please read the discussion on the members only thread on non-evidenced and other potentially unhelpful arguments regarding biomedical and psychological ME research.

Every argument posted here should be possible to be backed up with references.

Any addition of reliable references to posts that have none yet are much appreciated.


Edited to add a note (please read it).
 
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Useful arguments from the debate about the new NICE guidelines before the announcement of the delay but still applicable:

Some links copied from other threads:


Jonathan Edwards' quote in the Times (16.08.2021)[*]

Screenshots and transcript tweeted by @Adam pwme.

Code: 
https://twitter.com/ABrokenBattery/status/1427536240711249927

"Professor Jonathan Edwards of University College London, an expert in clinical trials, told Nice that clinical trials of Get and CBT for ME were deeply flawed. He said that the trials were unblinded and that the key measure of success was whether patients reported they were feeling better, on a subjective scale. More objective measures like increased activity or return to work tended not to change.

Edwards added: "We don’t take trials like this seriously in clinical pharmacology so I’m not sure why anyone thinks they’re appropriate in clinical psychology. This is something every medical student is taught about."


Jonathan Edwards' response to MichaelS' comment:

Code: 
https://twitter.com/MatthewJDalby/status/1427545970250768385


Jonathan Edwards said:
If anyone wants to tweet response to [MichaelS]: Someone should tell Professor Jonathan...

I would love to say:
If it was well known that there is no other measure why did PACE set up actometry and abandon it when a Dutch study failed to show a positive? Methods differ between specialities but reliability of evidence is not negotiable (see my NICE testimony).
Click to expand...

Twitter thread by Brian Hughes on the same comment:
(includes a list of objective measures)

Code: 
https://twitter.com/b_m_hughes/status/1427585977858543620

Code: 
https://twitter.com/b_m_hughes/status/1427585977858543620

Unroll:
https://threadreaderapp.com/thread/1427585977858543620.html


Thank you to @Dx Revision Watch and @Adam pwme for your help with links, unroll etc..


[*] Article by Sean O'Neill, The Times, 16.08.2021, [link to the article]

(Edited to remove screenshots and embedded media, for reasons).
 
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Tweets by Dandy@dandydoodlezart

"The reason we have scientific procedures in place is to stop doctors offering treatments based on their own anecdotal opinions. If a doctor decided to ignore guidelines and offer patients “magic water” they’d be rightly struck off. "


Code: 
https://twitter.com/dandydoodlezart/status/1427960094055145475

"They’ve ignored what patients have been saying for years as “anecdotal”citing #NICEguidelines as correct procedure. Now @NICEComms disagrees with them, they claim their own “anecdotal”evidence is superior to science."



Code: 
https://twitter.com/dandydoodlezart/status/1427963236863909894
 
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In the media of late the BPS cabal rely over and over on saying that 'some people benefit, we know this from clinical experience'.

Yet they have never answered the question (unless it's in the null PACE results) if the health of the people treated would have improved anyway naturally simply because some people improve over time.

They cannot use 'clinical experience' because they do not follow up long-term with people who say they have improved. Not to mention that just collecting questionnaire's at the end can lead to biased reporting.

And they seem to not be able to tell precisely which person will benefit and which person will be harmed (they don't believe in harm but that's another issue). If you can't tell at the outset who will benefit I think it safe to say there is a problem there.
 
A point repeatedly made by diverse people -- here by Proinsias Ó Martain (Twitter) :

"Defenders of CBT and GET claim that healthcare workers know these work for some patients. But the PACE results indicate that if there is any real effect it would be too small to distinguish from natural recovery in routine practice."



Code: 
 https://twitter.com/FMM0179/status/1428016565879025693
 
Sten Helmfrid (Twitter) :

"Patients with #MECFS are often accused of “anti-science” activism. The delay in the publication of the carefully prepared NICE guideline on #MECFS because of resistance from parts of the medical establishment with vested interests shows who the real anti-science activists are."



Code: 
 https://twitter.com/StenHelmfrid/status/1427700676272984064

davidtuller (Twitter):

"absolutely. it is clear who the anti-science "campaigners" are in this case. In its statement, NICE specifically defended the integrity of the process and the final product."



Code: 
https://twitter.com/davidtuller1/status/1427719404188438528
 
To refute desperate arguments like this one from Alastair Miller [*] :

"the fact that most clinicians would support the use of CBT for CFS/ME does not in any way imply that we feel it is a psychological illness.

The reality is that CBT helps symptoms, it helps symptoms in people with cancer, it helps symptoms in people with rheumatoid arthritis, and CFS/ME is very much a “symptomatic” condition – if you don’t have the symptoms, you don’t have the condition. And if CBT can help the symptoms, and there are lots of trials to show that it can, then it can obviously improve the situation."
Click to expand...


MSEsperanza said:
2) How can it be explained that systematic reviews on the benefits of similar treatments for fatigue associated with other illnesses suggest they are effective?
[...]
Even though the simplest answer on question 2) seems to be that ME/CFS is a distinct illness and there is no evidence that fatigue e.g. in MS, RA or Cancer is similar to symptoms experienced by pwME -- maybe there is something that could be learned from the update on this NICE guideline about the difficulties of assessing the evidence delivered by clinical trials on non-pharmacological treatments in general.
Click to expand...

[*] BBC Radio 4 Today, 18.082021 (listen again online from 07.53); transript by @Lucibee posted here
 
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One of the key questions to ask any clinician who claims that CBT and GET are successful is to ask about follow-up assessments. Do those patients who tell their therapists/clinicians that the treatment has been helpful sustain that opinion, say, six months after the therapy has ceased? (The answer will be that they don't know: independent follow-up is minimal). Evidence!

As far as Sharpe's comment about needing to use subjective assessments – "there is no other measure..." – how about employment? The biggest and most obvious consequence to my having ME was my inability to stay in work. Even the PACE trial assessed walking distance and performance on steps, where the therapies offered no useful advantage. GET in particular claims to produce a physical improvement. Evidence!
 
Thanks Graham.
Graham said:
As far as Sharpe's comment about needing to use subjective assessments – "there is no other measure..." – how about employment?
Click to expand...

That's included in @Brian Hughes ' Twitter thread:

MSEsperanza said:
Unroll:
https://threadreaderapp.com/thread/1427585977858543620.html
Click to expand...

If anyone who is on Twitter could generate a PDF and post it here that would be helpful.
(The thread unroll tool seems to offer a function to do this if you have a Twitter account)

@Lucibee @rvallee @Dx Revision Watch
 
Graham said:
One of the key questions to ask any clinician who claims that CBT and GET are successful is to ask about follow-up assessments. Do those patients who tell their therapists/clinicians that the treatment has been helpful sustain that opinion, say, six months after the therapy has ceased? (The answer will be that they don't know: independent follow-up is minimal). Evidence!

As far as Sharpe's comment about needing to use subjective assessments – "there is no other measure..." – how about employment? The biggest and most obvious consequence to my having ME was my inability to stay in work. Even the PACE trial assessed walking distance and performance on steps, where the therapies offered no useful advantage. GET in particular claims to produce a physical improvement. Evidence!
Click to expand...
Yes, with even reduced symptoms I would be able to demonstrate a marked improvement in my ability to carry out named activities of daily living (like having a bath or washing the dishes).
 
Graham said:
One of the key questions to ask any clinician who claims that CBT and GET are successful is to ask about follow-up assessments. Do those patients who tell their therapists/clinicians that the treatment has been helpful sustain that opinion, say, six months after the therapy has ceased? (The answer will be that they don't know: independent follow-up is minimal). Evidence!

As far as Sharpe's comment about needing to use subjective assessments – "there is no other measure..." – how about employment? The biggest and most obvious consequence to my having ME was my inability to stay in work. Even the PACE trial assessed walking distance and performance on steps, where the therapies offered no useful advantage. GET in particular claims to produce a physical improvement. Evidence!
Click to expand...

I can’t remember the reference but didn’t a study of outcomes from UK specialist services indicate their intervention was associated with subsequent increased levels of benefits received and reduced hours worked.

I would see this as a potentially positive outcome for people with long term disability, but hardly evidence for GET/CBT as a curative treatment.
 
upload_2021-8-18_20-29-29.png

Sharpe is a Professor of Psychological Medicine, who believes ME/CFS to be a psychologically rooted problem. Yet what he says here is untrue even for psychiatric conditions. A member of my family used to suffer from severe clinical depression, which used to fluctuate a lot. When she was really bad she spent most of her time in bed, would do very little, and not engage with others much at all. When in remission, she would be up and about much more, get out and about, play the piano at the local pub, go on her bike to do the shopping, etc. Those are pretty objective measures for a psychiatric condition.

Where do these people pick up their degree qualifications from? The local jumble sale?
 
The following question about the new NICE guideline I think also deserves a substantiated short answer - any suggestions?

MSEsperanza said:
4) Which role did the potential harm of treatment options in the evaluation of the evidence base play?

I think the point about potential harms could include a short explanation on or reference to why, generally, the evidence of harm is evaluated with different criteria than the evaluation of benefits. In addition, there is the issue with an apparent lack of ensuring the report of harms from non-pharmacological treatments, see:

Struthers, C., It is not only drugs and devices that can harm, HealthWatchUK, 2021, https://www.healthwatch-uk.org/publications/newsletter/newsletter-114/221-114-cbt-get.html
Click to expand...
 
Barry said:
Sharpe is a Professor of Psychological Medicine, who believes ME/CFS to be a psychologically rooted problem.
Click to expand...

As an aside: We had (briefly, fortunately) a GP covering at our surgery who believed much the same, but even he knew that GET and CBT don't work. "I wouldn't recommend this clinic [our local ME service] because they haven't done much to help anyone I've referred – people are still not getting back to work" is an approximation of what he said. I'm sure other GPs have also figured it out, irrespective of their pet theories on causation.
 
From the European ME Coalition's (EMEC) factsheet:

Is there a treatment or cure?

There are no Food and Drug Administration (FDA) or European Medicines Agency (EMA)
approved treatments for ME/CFS. (17,18) In Europe, ME/CFS patients are sometimes offered
cognitive-behavioral therapy (CBT) or graded exercise therapy (GET). (19) The evidence for these
treatments, however, is disputed (20–22) and in multiple surveys, patients report being harmed by
GET or CBT. (23,24)

References for reports of harm:

23. Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’
reports of symptom changes following cognitive behavioural therapy, graded exercise therapy
and pacing treatments: Analysis of a primary survey compared with secondary surveys. J
Health Psychol. 2019 Sep;24(10):1318–33.

24. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive
Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bull IACFSME.
2011;19(2):59–111.

https://europeanmecoalition.com/wp-content/uploads/2020/08/EMEC-Fact-sheet-with-references.pdf

(Don't remember if there is a good summary of NICE'S evaluation of the reports of harms anywhere -- I'm almost sure on of our excellent bloggers wrote about that somewhere?)
 
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I thought I'll leave this suggestion here in case people will find time and energy to work on this someday.

Obviously, to discuss this further will have to wait until forum members' and staff's workload caused by the delayed release of the new NICE guideline will have decreased.

Anyway, here is the suggestion:

Given the current discussion on the thread on the paused NICE guideline, I think we should have a Q&A in addition to Brian Hughes' Ten Points, applicable beyond that matter and including general background about generating and assessing evidence. In a common sense manner, but with references.

For example, Brian Hughes' Twitter thread on objective outcomes is succinct (see this post above) and could be added. I don't have a database or otherwise systematic file of sources though, so would took me months to search the forum to check and add the references.

Also, I don't claim I understand the details or all relevant basics myself.

But I'm sure all relevant info is on the forum or linked there already.

I hope that collecting some points here could be useful to work on such a succinct Q&A / summary of arguments either individually or this could be suggested *someday* to the forum committee to consider it a S4ME project.

Any suggestions from people who might have the capacities and ability to work on this as a 'private' project would be much appreciated.

I could help with starting a members only thread or setting up a private conversation group.

As I'm now really really trying to reduce my forum activity and at best move to the community lounge, I would confine my involvement on bringing people together.

What do you think?
 
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