• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CBT/GET 'treatment' - Does it breach GMC code of conduct?

Messages
2,125
Ever since I read this:
"The General Medical Council make it clear that:
"You must not make unjustifiable claims about the quality or outcomes of your services in any
information you provide to patients. It must not offer guarantees of
cures, nor exploit patients’ vulnerability or lack of medical knowledge.
You must not put pressure on people to use a service, for example by
arousing ill-founded fears for their future health."

I question if the whole (b)PS approach is in breach of this code of conduct.
They claim exaggerated 'recovery' rates.
They claim to be experts and so therefore when telling the patient about the disease their view of the cause of the illness must be right (so exploiting vulnerable patients).
They say it is the 'only way to get better' (by sticking to their regime and ignoring symptoms).

And the whole premise of the CFS version of CBT surely completely goes against everything.

Certainly there are several instances where 'they' have implied that CBT/GET is a cure or that CFS/ME (only using that because they do) is remediable ie curable, given that it is 'only deconditioning' according to them.

Yet the NHS say:
"Causes of CFS/ME
It's not known what causes CFS/ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness.

Suggested causes or triggers for CFS/ME include:

  • viral infections, such as glandular fever
  • bacterial infections, such as pneumonia
  • problems with the immune system
  • a hormone imbalance
  • mental health problems, such as stress, depression and emotional trauma
  • your genes – CFS/ME seems to be more common in some families"
There is no mention of deconditioning, yet this is the theory that NICE guidelines and NHS treatments are based on. o_O
 
Hmm, I think the problem there is that the BPS-ers, nowadays, will say "Sure, there is a biological beginning to it but it's after that when the deconditioning takes hold due to the false illness beliefs". And the NHS information, that you quote at least, is along those lines - the treatments aren't to treat the biological start of ME, it's to treat the subsequent deconditioning.

So I think that they have that get out clause unfortunately.
 
Messages
2,125

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Aren't all BPS claims unjustifiable ?
No, just a heck of a lot of them. There is also the separate issue that their methods used are not reliable. So sometimes they might get it right but even then their science is at best dubious. Having said that I am unaware of any major claim they got right, I just acknowledge that some such claims might exist, somewhere.

BPS is at its core, though not how its most commonly used, just saying that people are embedded in the world and lots of factors impact their health. Its the next step, that psych is the key, or bPs, that has never been substantiated, just argued for, at least in the general sense.

The proper place for BPS is just a mnemonic for reminding doctors that they need to think more broadly. The rest is mostly empty philosophy and unproven claims. If they want more they can do better science. Sadly they rarely rise to the challenge.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think Esther Crawley might have made some unjustifiable claims?
Given she has had opportunity to explain herself regarding her recent potentially libelous comments, and did not, it seems likely the answer is yes on that issue. With respect to overstating the benefits, and downplaying the harms, there is strong evidence there is a yes there too.
 
Messages
2,125
Found this interesting exchange of letters between Sophia Mirzas mother and various officials in search of accountability for the treatment of ME patients.

"
Transparent Construction of letters.
During the years whilst Sophia was ill and dying I had great difficulty in trying to understand why the guidelines of the World Health Organisation (WHO) were ignored by most doctors and social workers.

Having combed through the various discombobulated letters from those at the top of the medical profession as well as those in charge at Governmental level, it is clear to me now, that, although lip-service is given to the fact that the 'WHO's definition is relied on by The Department', neither they nor the doctors are obliged to follow the WHO’s guidelines. This contradicts what they have said. They allow Myalgic Encephalomylyetis (ME) to be treated as a mental illness.

For the past 42 years there has been no Government funded biomedical research into ME. As late as 2005 the Medical Research Council (MRC) stated that there was “no need to understand the causes of ME”. (p3)

The Chief Medical Officer (CMO) accepts the WHO’s classification of ME; she is cited as being the principal medical advisor,(13.7) yet, she can/will/is unable to do anything to implement it.

The General Medical Council (GMC) is responsible for regulating doctors and ensuring good medical practice,(12.4) yet they allow doctors to treat ME as they will. The GMC themselves used psychiatrists as their ‘un-named specialists’ to investigate my complaints regarding Sophia’s forced incarceration in a mental hospital and her ‘treatment’.

The National Institute for Health and Clinical Excellence (NICE) says that it “does not force patients into treatments they do not want”, yet Sophia was forcibly sectioned into a mental hospital 17+17aand18+18a."


Worth a read.
http://www.sophiaandme.org.uk/who cares.html#




 
Messages
2,125
Again, probably already known by a lot of people but was furious to read this from 2015:
http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext

"CBT and GET were based on a hypothetical model of chronic fatigue syndrome whereby symptoms and disability are assumed to be primarily perpetuated by a fear of symptoms and activity, avoidance of activity, and associated deconditioning (lack of fitness). CBT and GET were intended to address these assumed perpetuating factors and to “reverse”2 the illness, leading to “an increase in activity capacity” and ultimately a recovery. CBT mainly focused on addressing fear and avoidance, and GET on reversing deconditioning. The trial's manual for therapists explains the model of illness for GET: “Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology”.1, 2

"In the latest analysis of the PACE trial in The Lancet Psychiatry (February, 2015),3 Trudie Chalder and colleagues explain that CBT and GET did not improve the assumed lack of fitness, as assessed via a step test, and that “fitness measures do not appear to mediate the effects of either treatment”.
Chalder and colleagues acknowledge that the trial outcomes do not support the hypothetical deconditioning model of GET for chronic fatigue syndrome.3"


WTF.
 

Jonathan Edwards

"Gibberish"
Messages
5,256

Binkie4

Senior Member
Messages
644
And are there no other committees that are also responsible?

For a while I sat on committees at one of the medical Royal Colleges. There seemed to be a multitude of committees in the College all with powerful Chairs.

Surely there are places of power where these *doctors* have not infiltrated, places where today's journal results could be placed on an agenda for discussion.

Of course, doctors would need to do this and as @Jonathan Edwards described a few weeks ago, they may fear for their careers. But it does not seem unreasonable in the light of today's publication to expect some medic to place it on an agenda where it could be discussed.

Some of the medical Royal Colleges also have a Patient Forum where patient representatives can raise issues of concern. The most relevant Colleges are probably the RCPsch ( Wessely has not been President since 1st June but he will obviously be extremely influential there; and the RCGP where there might be more chance of influence although Clare Gerada, Wessely's wife, was president or Chair a few years ago although I don't think she is involved there any more although I could be wrong.

Anyone think this is worth attempting? I have no capacity currently. Not even sure if either of these Colleges have a patient forum but their website should say.
 

Binkie4

Senior Member
Messages
644
Thank you @Jonathan Edwards .

The NICE process will develop according to their process I presume and the relevant people might be "restricted" in their views. I think I remember reading that they would respond in Oct to the representations made ( please correct me if I've misremembered). So we have some time to wait.

I wasn't so much thinking of NICE at this moment. What I was musing about was whether there was any way in which something like the RCGP had any process for interested medics or patients to introduce matters (like this issue of JHP)as agenda items on an appropriate Committee. PWME all have a GP, even if they don't consult them very often, so it would be very useful from our point of view if GPs learned from the JHP about the concerns around CBT and GET.
Of course NICE would then need to come up with some changes which we don't know will happen but one step at a time.

I don't know the structure of the RCGP, whether there is a forum for patients to input concerns.
I do know that they exist in some of the Colleges.

Any views or extra knowledge on this?