The influence of the biopsychosocial (BPS) view of ME/CFS in government guidelines and medical practice in different countries (past and present)

Dolphin

Dolphin

Senior Member (Voting Rights)
This thread has been split from a thread discussing a book about Ron Davis:
The Puzzle Solver by Tracie White


I've been following ME/CFS research and news and reading forums for over 25 years. I think that the UK has played a much bigger part internationally in psychologising the condition and presenting the condition as something amenable to behavioural approaches such as CBT and graded exercise therapy than the US. The ratio of funding of biomedical research to behavioural and the like has been very different in the US than in the UK.

Certainly people in the US can have difficult situations but the whole system wasn't taken over by the psychological/behavioural approach the way it was in the UK. Even some good doctors in the UK, such as Abhijit Chaudhuri, ended up promoting CBT and graded activity/exercise and the like to an extent (I can't remember the exact details at this stage but I was involved in organising a talk with him in recent years; we didn't release a recording because we were so disappointed with it). 20 years ago he was challenging the CBT/GET approach in e-letters to the BMJ.

Hopefully things will change in the UK going forward with the new NICE guidelines.
 
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I wasn't meaning to suggest a competition between the UK and US over which country has a worse record with psychologising ME/CFS. Both have got it horribly wrong for a long time, and influenced each other. There seem to be some quite strong parallels, from the way it's described in this book, with dismissal of outbreaks as hysteria, leading doctors using their power to squash biomedical research, and promotion of the psychosomatic view, and CBT and GET.
 
Trish said:
I wasn't meaning to suggest a competition between the UK and US over which country has a worse record with psychologising ME/CFS. Both have got it horribly wrong for a long time, and influenced each other. There seem to be some quite strong parallels, from the way it's described in this book, with dismissal of outbreaks as hysteria, leading doctors using their power to squash biomedical research, and promotion of the psychosomatic view, and CBT and GET.
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Well you did say the situation was "just as bad in the US" so I thought it was worth responding that I'm not convinced.

A lot of people with very severe ME will likely face a lot of difficulties pretty much anywhere at the moment if they look for support but one can't necessarily extrapolate from that to everyone in my opinion.
 
Perhaps we should set up a poll for this? I'm curious myself to know how many pwME on this forum from different countries were advised to do GET and/or CBT. Was this advice given to Canadians? I've not known of or met any.
 
OK, fair point, I made a too sweeping generalisation. I was intending simply to say that, in telling the Lake Tahoe story, and some other aspects of the history there, and the instance Whitney experienced, the book made a good case that there was a serious problem of mischaracterisation of ME/CFS in the USA for many years up until quite recently.
 
Trish said:
OK, fair point, I made a too sweeping generalisation. I was intending simply to say that, in telling the Lake Tahoe story, and some other aspects of the history there, and the instance Whitney experienced, the book made a good case that there was a serious problem of mischaracterisation of ME/CFS in the USA for many years up until quite recently.
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You are correct in what you describe, although I'm not sure if it has improved much recently. Exercise and healthy eating is still being pushed and for most people it is very difficult to get a diagnosis. People forget the US has a very large population compared to the UK and so while there are more ME/CFS specialists and researchers here, the proportion is probably fairly similar to the UK if you exclude the BPS based UK ME/CFS clinics.
 
If one takes media coverage, quite a bit of coverage from the UK in the last 10-15 years would mention graded exercise and CBT, even if they weren't the main reason for the article, more than in most countries including the US it seemed.

As I say, hopefully things will improve with the updated NICE guidelines.

ETA: People in the US may get frustrated that the US government "only" gives $20 million or so per year for research via the NIH and CDC. But nearly all of that goes to biomedical research, as it has for the last couple of decades or more. The US government has been the biggest supporter of biomedical research in the world by a long way. The UK government in comparison has funded a lot more biopsychosocial research than biomedical research.
 
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Dolphin said:
I've been following ME/CFS research and news and reading forums for over 25 years. I think that the UK has played a much bigger part internationally in psychologising the condition and presenting the condition as something amenable to behavioural approaches such as CBT and graded exercise therapy than the US. The ratio of funding of biomedical research to behavioural and the like has been very different in the US than in the UK.
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How you decide about this matter probably depends on the starting point you take. If the starting point is 1988 then the UK will superficially seem to have greater responsibility. The interesting period is that between, say, 1955 and 1988 when the US was probably leading the way.
 
From what I can tell, prior to 1988, the few investigations that CDC and NIH did focused on a series of outbreaks, which they seemed to view as biomedical, not psychological.

But then, in the mid to late 1980s, CDC butchered the investigation of the outbreaks and NIH's Strauss published peer-reviewed articles and statements in the public media that equated the disease to mental issues. Strauss also strongly supported and magnified the voices coming out of Europe - for instance, promoting the 1996 British Joint Working Group report that promoted the BPS view. The clinical narrative here started to echo the BPS view in the late 1980s and by 1996, CDC's website included information that recommended CBT and GET .

But there were others in the US agencies that openly criticized Strauss' viewpoint/the BPS theory for ignoring the biomedical. And to Dolphin's point, while the NIH funding was relatively small at the time, most of it did not go to the BPS view of disease.

As far as clinical guidance, most of the references for CBT, GET, and the BPS view over the years are UK studies and proponents. And the sheer bulk of those studies with their claims of efficacy and safety has made it nearly impossible to move on clinically in a world of evidence-based medicine, especially with the "exercise is good for everyone" mantra. The IOM and the publication of issues with PACE had started to break that but its excruciatingly slow
 
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It may not be entirely fair to blame only Straus for the change of direction. It was from Eisenberg interpretation of "chronic brucellosis" and "chronic mononucleosis", relying on Imboden Canter and Cluff that the British psychiatrists appear to have learned their trade. There seems to be something of a problem with Imboden. In his papers with Canter and Cluff he wrote about personal psychiatric vulnerability of those with continuing symptoms. In his papers with Ziegler and Mayer he wrote of "conversion reaction". That was from the period 1960 to 1963.

It may be true that in 1996 Straus was parrotting the UK psychs. But in 1988 they were probably parrotting him.
 
Medfeb said:
As far as clinical guidance, most of the references for CBT, GET, and the BPS view over the years are UK studies and proponents. And the sheer bulk of those studies with their claims of efficacy and safety has made it nearly impossible to move on clinically in a world of evidence-based medicine, especially with the "exercise is good for everyone" mantra. The IOM and the publication of issues with PACE had started to break that but its excruciatingly slow
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Yes, lots of doctors around the world have had all sorts of odd views about ME/CFS/whatever but a big problem was the RCTs apparently showing evidence for CBT, GET, etc. They are seen as the highest form of evidence in EBM.
 
Like political history, the roles different countries have adopted in the evolving history of ME or CFS have often been subject to outside influence.

The US influenced the UK and the UK in turn influenced the US.

It may be that the NHS and Benefits and Welfare system in the UK made it a great target to get the BPS message entrenched. Lots of money and careers to be made in illness denial.

To me the really important message is the sheer numbers of lives destroyed based on nothing more than opinion, whether those opinions originated in the US or the UK.

Two of the most advanced & wealthy societies on the planet who have put the careers of the few over the lives and careers of many.
 
Medfeb said:
From what I can tell, prior to 1988, the few investigations that CDC and NIH did focused on a series of outbreaks, which they seemed to view as biomedical, not psychological.

But then, in the mid to late 1980s, CDC butchered the investigation of the outbreaks and NIH's Strauss published peer-reviewed articles and statements in the public media that equated the disease to mental issues. Strauss also strongly supported and magnified the voices coming out of Europe - for instance, promoting the 1996 British Joint Working Group report that promoted the BPS view. The clinical narrative here started to echo the BPS view in the late 1980s and by 1996, CDC's website included information that recommended CBT and GET .

But there were others in the US agencies that openly criticized Strauss' viewpoint/the BPS theory for ignoring the biomedical. And to Tom's point, while the NIH funding was relatively small at the time, most of it did not go to the BPS view of disease.

As far as clinical guidance, most of the references for CBT, GET, and the BPS view over the years are UK studies and proponents. And the sheer bulk of those studies with their claims of efficacy and safety has made it nearly impossible to move on clinically in a world of evidence-based medicine, especially with the "exercise is good for everyone" mantra. The IOM and the publication of issues with PACE had started to break that but its excruciatingly slow
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Probably has to do with the architecture of the health care systems, the US simply doesn't have this unified thing that can push through a single-minded idea like Wessely, Gerada and others with influence did through the NHS. US medicine is simply too large to have a small mutual admiration society bubble and the BPS model doesn't hold much value to organizations like the CDC and the NIH, it's pretty much worthless to them in fact. They are just independent enough not to be influenced by unscientific concepts.

Right now the US is the only player in the LC research space, everyone is focused on what it means in clinical practice and how costly it would be not to throw LC off the same cliff they built for us. Ironic that this may only be the case because of the weird market system the US has. I'm not sure if the US had anything like the NHS and NICE it would not have promoted the same. It's that little bit of independence that changes everything.
 
rvallee said:
the BPS model doesn't hold much value to organizations like the CDC and the NIH, it's pretty much worthless to them in fact. They are just independent enough not to be influenced by unscientific concepts.
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So why did the CDC have CBT and GET recommended on their website until recently?

rvallee said:
Right now the US is the only player in the LC research space
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Certainly the biggest player, but not the only one.
 
Mij said:
I'm curious myself to know how many pwME on this forum from different countries were advised to do GET and/or CBT
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I think in the US for many years this generally filtered down to clinicians as recommendations for exercise and psychotherapy as generic ways to go. As implemented, these "treatments" might have resembled GET and CBT as outlined more formally in UK but I doubt a lot of US clinicians were specifically using those terms. I mean, CBT in general is used in US but it is not necessarily the dominant form of talk-psychotherapy here.
 
I have siad on another thread that there was a paper presented by Barry Blackwell and Mary Gutmann Of University of Wisconsin at the 2nd international Conference on Illness Behaviour held in Toronto in 1985. This was published in 1986 in a book edited by McHugh and Vallis. Most of the elements described in the Maudsley and Oxford models seem to appear. These include "a progressive stepwise program of physical retraining under skilled medical supervision...with goals that are set to coincide with whatever activity level is required to restore the individual's independence at work or in the home".

The only comparable work I have found in the UK was by Edwards in 1986 in the infamous "you can cure your effort syndrome if you really want to" paper, but that seemed much more isolated and less worked out.

It would be interesting to know when the Mayo adopted CBT and GET like treatments. It would not surprise me if it was earlier than anything published by SW on the subject.
 
rvallee said:
Probably has to do with the architecture of the health care systems, the US simply doesn't have this unified thing that can push through a single-minded idea like Wessely, Gerada and others with influence did through the NHS. US medicine is simply too large to have a small mutual admiration society bubble and the BPS model doesn't hold much value to organizations like the CDC and the NIH, it's pretty much worthless to them in fact. They are just independent enough not to be influenced by unscientific concepts.
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Yes, I think the centralised NHS and NICE system was likely a big reason why CBT and GET took over in the UK. But a large percentage of people in the UK in general seem very attached to the NHS: they stand up for it more than virtually anything else. It certainly can have its benefits particularly over the US system (which isn’t the only other healthcare system in the world) but that doesn’t mean the system is the best in all regards and every scenario/can’t cause problems.
 
Dolphin said:
Yes, I think the centralised NHS and NICE system was likely a big reason why CBT and GET took over in the UK. But a large percentage of people in the UK in general seem very attached to the NHS: they stand up for it more than virtually anything else. It certainly can have its benefits particularly over the US system (which isn’t the only other healthcare system in the world) but that doesn’t mean the system is the best in all regards and every scenario/can’t cause problems.
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My sense is that NHS is great if you have a broken leg or most things which meet standard and well-known diagnostic criteria with standard treatments. It seems terrible if you have a complicated or poorly understood illness. In the US, if you have no health insurance, it's awful no matter what. If you have decent health insurance, which is a big if, you have some freedom to doctor-shop and find specialists who actually understands your illness.
 
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