How GET / CBT model harms. Let us count the ways...

Just wanted to list the different ways the GET/CBT model harms people with ME, directly or indirectly:

Psychological - as Dr Klimas said - paraphrased: They came to the doctor with ME. They left with PTSD.

Physical - contraindicated treatments

Social - perpetuating stigma

Financial - not accessing disability benefits

Research - funding not going to biological

Political - stigma, not worthy of support

Familial - family members may not believe ME is physical

Others?

 

Delayed diagnosis, and hence treatment, of other conditions/diseases a ME/CFS patient might also have, because symptoms are dismissed as imaginary.

 

Yes and also unnecessary ME progression, if i had known what i had years earlier and the real effects of progression i might still fairly functional today by pacing far better over my lifetime.

 

Unrealistic expectations - at present it is unclear that many or even any people fully recover, but this model implies complete recovery is possible and further that as there is believed to be no ongoing underlying medical disorder it implies any improvement/remission will be permenant.

This may mean people take on too much when good, potentially provoking further relapses (ie longer term cycles of boom and bust over years or decades rather than days or weeks). What happens is that it encourages people to operate towards their upper limit and to have expectations of further improvement, so when life, as inevitably happens, throws a curved ball, they have no spare capacity and are forced into over exertion and potential relapse.

That is people do not undertake advanced planning for future, perhaps inevitable, relapses. They fail to make appropriate forward planning for support and financial needs that may/will arise from relapses. Without an adequate understanding of our real prognosis we can not make fully rational decisions about our life planning. Choices of where we live, what work to do, whether to have children, what commitments to make to others need to predicated on the possibility that we may at anytime need to roll back on those commitments, either temporarily or long term.

Because research into CBT/GET has focused on subjective measures, improvement in these subjective measures has been misinterpreted as improvement in the underlying condition and distorted data and understanding of remission and/or recovery.

[Edited to correct grammar]

 

Indeed
Perhaps we should write our own living with ME/CFS guide for patients.

 

People with ME have higher incidences of comorbid conditions than in the general population, so we are more likely than the average person to get cancer, have heart attacks, etc. However under the BPS model it may be that we are less likely to have appropriate assessments.

This is made more explicit under the bizarre psychiatric non-diagnosis of 'Medically Unexplained Symptoms' syndrome where it is stated that patients should not be given any medical assessments or refferals to medical specialists because that will reinforce the 'false belief' that they have a physical/biomedical condition.

 

In the UK can doctors lose their medical licenses by breaking their Hippocratic oath (assuming they take it)?

 

It is a matter of complaining to the GMC (general medical council) and in theory they can suspend or revoke or impose conditions on a doctor's licence to practise. However, as with Dr Myhill's recent group complaint, any complaints relating to CBT/GET have been dismissed. (Though complaints against at least one doctor for opposing CBT/GET were, at least for a while, upheld and he was barred from working with children with ME for a couple of years.)

It maybe until the Cochrane reviews are withdrawn and NICE drop CBT/GET from their official guidelines this unsatisfactory situation will continue.

 

That makes sense
So we really do need to get PACE retracted in our case.

But people who are harmed by heart attacks or cancer or other things because doctors listed to MUS would have a case but it would be twice removed because their doctor will have put into play a concept by other doctors. Perhaps a public campaign is needed to squash this.

 

It may be that most doctors are not so stupid as to ignore the signs of say a heart attack, despite the MUS model's advice to do so. However, I suspect it likely that in areas commissioning full blown MUS services, it will take a number of deaths before anything is done about the approach, even if we get CBT/GET retracted for ME/CFS.

 

In women heart attacks are missed at a higher rate then in men, more then a little bit by dismissal of symptoms (and a bit because they differ slightly). Not to mention many diseases or just the fact doctors take women's complaints less seriously due to sexism (or belief in hysteria). There have been countless accounts of women saying they needed their husband or a male in the appointment with them to get the doctor to take them seriously. Its highly likely MUS is simply an attempt to recategorize psychosomatic explains everything because the authors believe thats how things work.

In addition i have read many accounts of people being dismissed (men and women) with symptoms that were very clear because the doctor was uninformed, incompetent or just believed the patient was faking or exaggerating them. This applies to many if not most diseases, its already a major problem.

Unfortunately giving an additional excuse to dismiss symptoms just means more will be dismissed. And fighting this is not going to be easy. At one point i was thinking of writing a resource for patients to navigate the medical system, it would vary by country but in Canada where i live i had to become an expert in it by necessity, i have had to plow through many doctors to get proper care for myself and for family members. Not because doctors were being malicious (generally) but because of things such as incompetence, laziness, being sent to the wrong specialty, outdated knowledge, well meaning but bad treatment and so forth.

 

I would second that. I continued working longer that I should, until I was eventually force to stop. Then I went into the process of having my contract terminated with no idea of whether I would get pension on grounds of ill health or not. Also several years before being forced to take early retirement I had myself chosen to go halftime because of my health. What I was unaware of until after the fact was this significantly reduced the amount of my subsequent pension.

 

Potential implications for assessment of mental capacity where conflict arises re medical care decisions in severe cases.

Potential for child protection/safeguarding referrals in cases where children have ME.
[PDF] https://www.actionforme.org.uk/uploads/pdfs/families-facing-false-accusations-survey-results.pdf

Broader policy implications to include bringing CFS under remit of IAPT programme as MUS, the public expenditure wastage of this, and circular impact it has on HCP et al., perceptions of the conditon.

 

This is a major issue with the back to school outcome measure. Being back does not mean being able to learn. Objective outcome measures that show learning capacity are required.

 

In Australia we have a National Disability Insurance Scheme, which provides assistance to everyone who qualifies. The problem is they are turning most Australians with ME away on the basis they are not fully treated unless they have done CBT and GET.