One possible reason the CBT/GET proponents misunderstood ME/CFS so badly

[Hoopoe]

I think I have understood something important that could explain why there exists two groups with very different views on ME/CFS that each think they are right.

The more a diagnosis is unspecific, the more it matters where study participants are recruited from. ME/CFS diagnosed with Fukuda criteria is probably quite unspecific (and the Oxford definition even more so). If you recruit from psychiatry care pathways, you'll get patients that fit this pathway (or else they would not stay there) and can benefit from CBT/GET. This may be what led the CBT/GET proponents to believe they had solved ME/CFS.

When they applied their ideas to a broader patient population in clinical trials that are more representative of the average patient, the treatment didn't work.

This idea of place of recruitment having a great influence on what phenotypes are actually contained in a study cohort could also explain part of the difficulty the field had in reproducing results.

This may have been obvious to some, but I can't recall having this idea stated clearly before.

 

[Jonathan Edwards]

I strongly suspect you are right, even if I cannot prove it,

 

[Trish]

I agree it's an important point. That's been my assumption too. I assumed we all thought that.

 

[Ariel]

I have not seen evidence of good faith belief that these treatments work among such proponents, however. All of the behaviour around research, rewriting history, messing with definitions, and treatments of patient concerns suggests a grift.

There are perhaps some who now really believe in this stuff, as that is what has been taught to them. And that is a shame. They must urgently receive updated education and knowledge.

 

[Hoopoe]

What's a natural way for a person to turn into a grifter? Maybe starting with a treatment that really works for some highly selected patients, then finding out that good money and careers can be made even with false claims of the treatment working for other patients.

 

[Ariel]

Maybe starting with a treatment that really works for some highly selected patients

Does it "really work" for any patients, though? Going for a series of walks? Mixes up cause and effect.

Overall I agree with your point about how a grift might get started, but going for a series of walks and being given handouts "really works" for what patient subset? It strains credulity, or it should, that this would "really work". I don't doubt there are practitioners out there who might believe such things, but I doubt they have really questioned it, as that is not the world they are living in. It is not what they are encouraged to think about. It's not to be questioned that they are the ones "helping".

 

[Sean]

This may be what led the CBT/GET proponents to believe they had solved ME/CFS.

Except they started with the psycho-behavioural explanation, before they had done any research on it.

I don't see any evidence yet that the CBT/GET paradigm works for any group of patients.

 

[Kitty]

Does it "really work" for any patients, though?

It might, especially given that at proof-of-concept stages, more effort and care goes in to delivering interventions and fewer corners are cut.

Some people suffering from depressive illness seem to benefit from talking therapies and gentle exercise, and if some have comorbidities and/or need medications that can make them feel lethargic, it would be surprising if simply getting some decent support didn't make a difference to how they feel.

Obviously it's unlikely to help if they have ME, but as @strategist says, people with all kinds of conditions can be gathered up if you use poorly defined diagnostic criteria.

 

[alex3619]

In considering this view, that its a cohort selection problem, we first have to consider what it is that "works" and how that is determined. I have been considering for years that one of the issues facing medicine is optimization to sub-optimal outcome measures. The second worst area is nutrition, including diabetes diets, but by far away the worst is psychogenic psychiatry. I will call it PP for short.

If they accept questionnaire data as evidence of success in an unblinded psychiatric trial, where patients have their attitudes modified, then there are major problems right there. Studies using objective outcome measures are an almost universal fail. Using suboptimal outcome measures can lead to systematic erroneous conclusions. Every study, every time.

When it comes to whether or not this is a grift, it has the appearance of being so for at least some of the proponents. All of them? I doubt its all of them. I cannot even give an approximate percentage. There are so many other factors here, including cognitive dissonance. They get rewarded for their results, get accolades, get government and corporate support, they cannot possibly be wrong, right? Some patients give them glowing praise in the short term, they cannot possibly be wrong! Oh, except in the PACE trial the long term outcomes, using their own measures, are not significantly different from no treatment at all.

When outcome measures are severely suboptimal, and are adopted in an entire field of medicine, the bias becomes entrenched.

Of course there are blatant exceptions such as the PACE trial. When the lead investigator writes a paper showing they know that use of SD for population SF36PF data is statistically invalid, but does not publicly acknowledge that the SF36PF data does not meet the preconditions for use of SD, and then use it in a study anyway, how is that not deliberate manipulation of data in a clinical trial to obtain "successful" results? Why is this tolerated by the medical profession and medical journals?" How come recovery can be claimed on patients with physical capacities equal to disability in other diseases? How can medical professionals not see this.

This is not just about methodological issues like cohort selection, or even poor outcome measures. This is about deep medical and economic politics.

 

[Sean]

If they accept questionnaire data as evidence of success in an unblinded psychiatric trial, where patients have their attitudes modified,...

Allegedly have their attitudes modified.

The problem, of course, is that those questionnaires are not measuring that variable. They are measuring changes in questionnaire response behaviour.

 

[FMMM1]

When they applied their ideas to a broader patient population in clinical trials that are more representative of the average patient, the treatment didn't work.

Problem is there methodology is so poor they can't prove it works for anyone!
Jonathan (I think) highlighted that sound methodology can cope/deal with the situation where only some people improve --- if your outcome indicators are sound (objective - actimetry etc.).

This idea of place of recruitment having a great influence on what phenotypes are actually contained in a study cohort could also explain part of the difficulty the field had in reproducing results.

Again no evidence to prove/disprove this i.e. because their methodology is so poor.

This may have been obvious to some, but I can't recall having this idea stated clearly before.

Don't recall anything setting this out.

EDIT -
The other thing you may need to factor in is that our fellow human beings (we) make up bullshit ---
Yesterday I was talking to a retired (successful) lawyer who recounted an acquaintance (psychologist) who told him ME/CFS was a logical (psychological) post infection response --- don't do anything --- it could be dangerous to do anything.
My acquittance has a niece who recovered from ME/CFS through changing her attitude --- but then some people recover ---- regression to the mean?

 

[John Mac]

I have a vague memory that some of the doctors?/administrators? involved in the setting up of the PACE study were questioning the inclusion of some of the participants as they didn't have CFS and the PACE researchers replying that they wanted them included as they needed 600+ participants for the study to achieve statistical power. I think it was in an email exchange between them and the PACE researchers.

The point being that the PACE researchers were finding their own participants from somewhere else other than the ME/CFS community.

 

[Suffolkres]

I have a vague memory that some of the doctors?/administrators? involved in the setting up of the PACE study were questioning the inclusion of some of the participants as they didn't have CFS and the PACE researchers replying that they wanted them included as they needed 600+ participants for the study to achieve statistical power. I think it was in an email exchange between them and the PACE researchers.

The point being that the PACE researchers were finding their own participants from somewhere else other than the ME/CFS community.

A case of paint (a narrative) by numbers....?

 

[Suffolkres]

A case of paint (a narrative) by numbers....?

Also Barts only had 'ambulatory' mild/moderately affected.. no children nor severely affected. I can remember Tanya from Brame speaking with Peter White, who said, "Oh,,,, we don't serve(or have) patients like you"
So 25% of possible ME patients were effectively ruled/out excluded from consideration. Discriminated against.

 

[JemPD]

I agree with the OP. ISTM that they redefined ME into Tired All The Time (called it CFS, conveniently shortened to CF), then applied their interventions to those who were TATT(CF) dx at their clinics. Some people who are TATT will be helped by thinking more positively & doing more activity, et viola.

I have thought that a long while, but it was reinforced recently because i just joined a fb group for 'PwCFS/ME who are also ____ '
It is full of people who have a CF/CFS dx who think they have ME, but it really sounds like most of them are just burnt out/stressed & find having a big full time career & social life a bit of a struggle. Its extraordinary, they dont seem to know what PEM is other than 'wow i had a big night out last night & am really sleepy today, will have to have an early night tonight'.
I'm not saying that mild sufferers will have the same experience of ME as i do they wont but even a mild dx is supposed to be a significant reduction in ability to do day to day stuff isnt it? Most of these sound perfectly healthy to me.

If people are dx with ME who have very full active lives, but have a few aches & pains & are rather tired after they do more than usual, then.... I've been a bit shocked by it.

 

[alex3619]

they can't prove it works for anyone!

Funny, because they get results that show it works for everyone! Regardless of disease. Regardless of objective outcome measures like gainful employment in prior capacity and for prior hours, or activity measures, or fitness. If this were a finance product it would be analogous to a great many get rich quick schemes. Trust us, we know what we are talking about, don't you wanna be rich? I mean, healthy?

Psychiatry might have made great advances, or at least accurately identified deficits in research, if they had adopted stringent outcome measures. Yes, its a hard field to do research in. So let them relax the research requirements to utter simplicity? Or should they have been even more strict, and disallow bogus research rather than accumulate it till the field is full of it? (I was tempted to post an image of a field full of bovines.)

 

[livinglighter]

I’ve come across same thing in other forums too @JemPD. There seems to be large numbers of people diagnosed with ME/CFS who don’t appear to have it. A significant amount mentioned attending fatigue clinics.

 

[FMMM1]

Psychiatry might have made great advances, or at least accurately identified deficits in research, if they had adopted stringent outcome measures.

Nailed it -- they could have highlighted unmet need -- rather than falsely claiming they understood and could treat ---

Yes, its a hard field to do research in.

I live in Norther Ireland --- ice outside --- maybe 3 deg cel --- yet I notice people out walking with FitBits strapped to their arms. Fluge & Mella managed to assess rituximab [actimetry] --- so how come the psycho bunch can't - oh apart from selecting participants for trials (a single Dutch researcher?) -- the irony.
OK the broader point is that it is difficult --- a generic symptom (fatigue) isn't much of a clue, and a likely highly heterogeneous population adds to the complexity, but we now have tools like GWAS

So let them relax the research requirements to utter simplicity? Or should they have been even more strict, and disallow bogus research rather than accumulate it till the field is full of it? (I was tempted to post an image of a field full of bovines.)

Yip manure

 

[Peter T]

I’ve come across same thing in other forums too @JemPD. There seems to be large numbers of people diagnosed with ME/CFS who don’t appear to have it. A significant amount mentioned attending fatigue clinics.

I forget the references, but isn’t it generally said that there is a 40% misdiagnosis rate (false positive) with ME/CFS, which means there are a lot of people out there who have been told they have ME/CFS but don’t actually have it. Having said that any research study should be checking the diagnosis of their subjects.

 

[FMMM1]

I have a vague memory that some of the doctors?/administrators? involved in the setting up of the PACE study were questioning the inclusion of some of the participants as they didn't have CFS and the PACE researchers replying that they wanted them included as they needed 600+ participants for the study to achieve statistical power. I think it was in an email exchange between them and the PACE researchers.

The point being that the PACE researchers were finding their own participants from somewhere else other than the ME/CFS community.

If they'd done the study properly then they'd have been able to identify anyone who significantly improved --- I think some heterogeneity is to be expected in ME/CFS