Discussion in 'General ME/CFS News' started by Countrygirl, Dec 6, 2016.
I must say I think MCS and/or EHS are even further down the hierarchy.
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A quick read could leave the impression that Wessely has superseded Ramsay and nothing new has come since, as though BPS is the only credible model - and just by repeating all the ghastly psychosocial nonsense it reinforces it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.
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.
What is EHS?
Electromagnetic hypersensitivity. Heavily overlaps with MCS.
I just want to add that although I may quibble about emphases, I'm so glad @Keith Geraghty is fighting hard on our behalf, and managing to get lots of really excellent peer reviewed articles published. As I said, maybe this is as far as the BMJ would let them go this time.
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.
I can only access the abstract; any way to post a direct link to the whole article here?
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.
I believe Trish is referring to the blog. @Keith Geraghty is the blog a reasonable summation of the article?
@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?
Good article. Much thanks to the authors.
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.
I believe Im not allowed to distribute the article per se - but under publication rules I can attach a draft version to my University depository - I will do this today, but it can take 24 hours to upload. I shall attach a link once its uploaded.
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.
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.
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
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).
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.
Keep up the good work, @Keith Geraghty . It's great having you fighting our battles. Little by little...
I've got a corner of a postage stamp just the right size for this piece.
You can also try a Google Site Search
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