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BMJ Blogs: Ethical Failures in the treatment of CFS

Countrygirl

Senior Member
Messages
5,429
Location
UK
http://blogs.bmj.com/medical-ethics...&utm_medium=facebook&utm_source=socialnetwork


Some illnesses are uncool.

That might sound like an inflammatory comment – especially for a medical journal, yet perhaps the biggest concealed fact in medicine is that hierarchies of diseases exist among patients and healthcare professionals. A caste system of illness influences how patients perceive their health complaints, whilst health professionals also hold biases that influence how they treat and rank patients in the medical pecking order.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs. The truth about CFS/ME is that it is a medically contested illness; the NHS and NICE guidelines acknowledge that there are massive gaps in our current understanding around the illness, its cause and its impact on patients. CFS/ME is also illness that can devastate lives, leaving many housebound, bedbound and isolated, not just from society but also in terms of medical support.


Acknowledgment about the limited knowledge about this illness (which, indeed, may turn out to be a cluster of different diseases or illnesses) is frequently overshadowed by disagreement about theoretical models of the aetiology and morphology of ME/CFS. Ramsay’s 1950s model of ME as a post-viral infection causing muscle weakness and neurological inflammation was challenged by psychiatrists McEvedy and Beard, as nothing more than mass-hysteria. ‘ME’ as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndrome’; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs, as well as social trends and social care systems that reward illness seeking behaviours.

Leaving aside medical controversies, what appears to have been forgotten is medicine’s duty of care. Studies consistently show that patients with CFS/ME routinely feel disbelieved, distressed, and deeply dissatisfied with their medical care. In our article [co-authored with Havi Carel] we aim to show that patients with ME/CFS are often dismissed and may even be harmed when doctors ignore or challenge the legitimacy of their illness experience. Research shows that many patients with ME/CFS feel marginalised, neglected, and drop out of mainstream medicine in despair.
 
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2,158
Great to raise the issue. I hope it makes doctors think.

I hate to criticise, but it seems a pity there is no mention of biomedical findings proving Wessely is wrong.

A quick read could leave the impression that Wessely has superseded Ramsay and nothing new has come since, as though BPS is the only credible model - and just by repeating all the ghastly psychosocial nonsense it reinforces it without appearing to question it. I don't think you can 'leave aside medical controversies' when the controversy is based on one side being completely wrong.

I don't want to just be treated with compassion if it's based on a foundation of misinformation and false assumptions. I want real scientific medicine.

Edit - I've just re read the whole article, and it does make many good points, but I still think it leaves the impression that the BPS model may be valid, but that doctors should take more care to listen to patients. To a reader steeped in BPS, it could still leave the impression that they just have to be nicer, not that their model is wrong.

But then this is in the BMJ. Maybe this was as far as the authors were allowed to go. It is a good start.
 
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aaron_c

Senior Member
Messages
691
I give up. How do you convince someone they harbor "faulty illness beliefs" without challenging the legitimacy of their experience? Isn't that like having your cake and eating it too?

That said, perhaps I shouldn't be too hard on some potential allies. Baby steps.
 

Keith Geraghty

Senior Member
Messages
491
Dear PR members

Im online happy to take and answer any questions about our paper.

I will start by saying the paper didnt have enough room to take on the merits of the evidence for the BPS model v other biomedical evidence; our focus was on injustice in the medical encounter - and I think we did a good job highlighting strong evidence of the injustice ME/CFS sufferers face when they seek medical assistance. If doctors dismiss ME/CFS as a medical entity or challenge its basis, whilst also challenging patients and adding to their stigmaisation - this in itself could be harmful to patients; thus its worth recognising and addressing.

To use two examples from my research chats with professionals about ME/CFS:

A nurse at a local hospital once said to me, "if you gave these patients £5000 a day to go to work, they'd soon not have ME"
A GP I was talking with once said to me "all these patients need is anti-depressants and a good pair of running shoes"

I am sure many of you may have more personal examples of negative medical encounters - some will have positive accounts ofcourse, but we were really questioning the basis of the stigma and injustice.
 
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I have no other evidence apart from my experiences and what I have seen other people write but I would be very surprised if the majority experience of patients was a positive one. I'm sure that there are a few GPs who, probably from personal experience with someone who has ME outside of their work, have a greater awareness of the issues involved but I'm sure they are few and far between. Nothing will change substantially until the NICE treatment guidelines are changed, removing CBT and stressing that exercise needs to be very carefully monitored to avoid over-exertion.

But thank you for your efforts Keith, each publication like this is another brick worked loose from the BPS wall of pseudoscience.
 
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2,158
I can only access the abstract; any way to post a direct link to the whole article here?

@slysaint I meant the blog piece in the BMJ from which the quote at the beginning of this thread comes.

@Keith Geraghty is there a way to access the whole of your paper that's in the Journal of Medical Ethics.

@Keith Geraghty, I do take your point about the article being about the way medical staff treat ME patients. There are so many horror stories, it's important to say, as you do, that they are unacceptable, unethical and unprofessional. Do you quote examples like the ones you mention here in your JME paper?
 

Sean

Senior Member
Messages
7,378
Good article. Much thanks to the authors. :thumbsup:

‘ME’ as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndrome’; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs,...
Wessely & co's model, work, and advocacy cannot be read in any other way but as a strong unambiguous claim that the primary characterising feature and causal factor in CFS/ME is the post-onset, psycho-socially determined, cognitive-behavioural response from the patient, with all other features being secondary in the causal chain.
 

Keith Geraghty

Senior Member
Messages
491
We do not quote specific patient examples in the paper per se as its a philosophical / ethics paper looking more broadly at epistemic and hermeneutic injustice in the medical encounter with ME/CFS as the focus - in this regard its more important to look at the system and professional v patient collective level. Injustice in any form is usually systemic or constructed in some way - ofcourse it can and does manifest at the individual level in the medical encounter. However, fixing the response of one individual doctor would do little, comapred with fixing the system that causes the injustice/harm/distress.
 

Solstice

Senior Member
Messages
641
I have no other evidence apart from my experiences and what I have seen other people write but I would be very surprised if the majority experience of patients was a positive one. I'm sure that there are a few GPs who, probably from personal experience with someone who has ME outside of their work, have a greater awareness of the issues involved but I'm sure they are few and far between. Nothing will change substantially until the NICE treatment guidelines are changed, removing CBT and stressing that exercise needs to be very carefully monitored to avoid over-exertion.

But thank you for your efforts Keith, each publication like this is another brick worked loose from the BPS wall of pseudoscience.

My GP was pretty clueless about the disease but wasn't afraid to admit that, treats me with kindness, is on board with most of what I try and even helped me with my battle for benefits and taking B12-shots. I guess that's about as good as you can expect for the moment.

My lawyer and the person that gave me a psych-evaluation for me to obtain benefits however, that's a different story alltogether. Stubborn idiots.
 
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2,158
I love big words! Just looked up these two:

Epistemic - relating to knowledge or to the degree of its validation.
hermeneutic - a method or principle of interpretation

However, fixing the response of one individual doctor would do little, compared with fixing the system that causes the injustice/harm/distress.

Point taken. Your target audience is academic and medical, not the general public. They will expect reasoned argument, not heart tugging examples, and it's a systemic failing that needs fixing, not just individual.

Though there is probably a place elsewhere for telling the horror stories of how patients are treated. It would be interesting to collate lots of them, then put them to an audience of medical staff and see how they react. (Perhaps pretending at first that it's about MS or rheumatoid arthritis patients, to hammer the point home).
 

Keith Geraghty

Senior Member
Messages
491
just for your info I wrote and co-authored another paper on Harms associated with the BPS model in ME/CFS - a very detailed article, it went into review for 6 months and then it was rejected by the editor who said "he didnt trust in the term ME, he didnt agree the BPS model was harmful and that we should have balanced the article by writing about what good the BPS model does"

so, please bare with us regarding articles, each covers one particular problem - we will be sending our harms article elsewhere shortly; we have many more papers in production.