Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.
Nasim Jafry has this rather brilliant RR posted on the BMJ site now:
the autor of the BMJ commentary cited this book:
The concept itself seems to be quite controversial and mostly speculation.
The latest RR:
Link to Neil Abbot's response dated 22 June 2014: http://www.bmj.com/content/329/7472/928?tab=responses
Great to see the charities stepping in with these responses.
The above rapid response to "Is Chronic Fatigue Syndrome a Meme?" say it all in my opinion.
There are people who want CFS/ME to be this or that, organic, psychological ... yet is it nothing but an artifical construct that is causing torture? Torture from psychiatrists (who inclidentally actually often refuse to diagnose the organically ill as having ME) and torture from "ME specialists" who diagnose everyone with it. Which is worse?
What can we as a group or individuals do about the contempt these doctors have shown to the patients they work with please?
To whom can formal complaints be addressed? Can anyone help with the wording of such a complaint?
It seems to me that if they had written this about any other neurological illness it would have been taken seriously, the official answer would not have been a form of 'it's OK because they didn't really mean what they wrote'.
Spread info advocating a complete boycott of the clinic, and maybe organize some picketing out in front?
Complaining to the clinic wouldn't help, since they're the problems. Would complaining to the hospital they're attached to have an impact?
Is there some way to get our outrage into the British media?
Thank you, perhaps we could join forces and draft a complaint to the hospital that could also go to the health minister?
Facebook 22 June 2014: https://www.facebook.com/photo.php?...67.545018383&type=1&theater¬if_t=notify_me
From the website blog: bit.ly/1pZ7aTW
Extra spacing added by moi
Two new responses to the Meme letter are at http://www.bmj.com/content/329/7472/928?tab=responses
As someone who attended the Essex CFS Service I think you should have some more info.
1. The CBT therapist I saw told me she had not trained in CBT.
2. She argued with me about the classification and said ME is classified as a mental health disorder.
3. The clinic as a whole refuse to support benefits claims because they say it is a 'conflict of interests' - when I talked to the admin about it she eventually got back to me and said that that had come from Peter White at Barts.I can't think of another service who would refuse to support claims if they thought the patient was too ill to work. They clearly thought that about me because mainly they wanted me to do less.
4. They fudge their results - I challenged several people I saw about only writing down what I had said when they could construe it to be evidence of the clinics efficacy. I asked the admin later on the phone if the results of end of treatment surveys etc were sent to 'another place' and she said no - I believe this is a lie.
5. The then consultant physio shouted at me in a very angry way when I questioned the reliability of one of thier forms.
6. The fact that they say things like 'you should do as much on a bad day as a good one' makes it clear they have no idea what they are dealing with. My baseline for that would be to do nothing ever.
It's for your own good, benefits are preventing us from recovering. See what Mickael Sharpe says in this Unum document p.21 (guess PW opinion is very similar). http://issuu.com/maxhead/docs/unum_cmo_report_2002
So by refusing benefits, insurance companies are not looking to make profits but they are doing an humanitarian action.
Dx Revision Watch @dxrevisionwatch
RR revised now reads "Anthony D Collings Consultant Physician David Newton personal capacity, Essex" http://www.bmj.com/content/329/7472/928/rr/702549 @MEAssociation
Anthony D Collings, Consultant Physician
Essex CFS Service, Southend University Hospital SS00ry
Dx Revision Watch @dxrevisionwatch
Fact that author details now revised suggests BMJ has not agreed to retraction. If so, good. It needs to stay up @MEAssociation @actionforme
Suzy Chapman, Carer
Re: What causes chronic fatigue syndrome?
23 June 2014
Collings and Newton (1) resurrect a ten year old editorial (2) to present an essay on the potential for viewing CFS as a 'meme-mediated' syndrome.
In the Preface to her 1999 book 'The Meme Machine' (3) Susan Blackmore writes that most of the ideas in her book were conceived whilst bedbound for many months with a chronic, debilitating, post-viral illness.
Forced to give up work, unable to walk, unable to talk for more than a few minutes, unable to use a computer. But she could read and she could think, and as time went on, make notes. It would be two years or so before Ms Blackmore was well enough to consider working again and to develop her ideas into the book.
Ms Blackmore seems uniquely positioned to contribute to this discussion.
1 Collings AD, Newton D. Re: What causes chronic fatigue syndrome? BMJ 2014 (18 June).
2 White PD. What causes chronic fatigue syndrome? BMJ 2004; 329: 928-929 (21 October).
3 Blackmore, Susan (1999), The Meme Machine, Oxford University Press, ISBN 0-19-850365-2.
Competing interests: None declared
Re: What causes chronic fatigue syndrome? A question for Dr Collings
23 June 2014
Dr Collings and colleague (18 June) cite a study suggesting that being ASIAN confers resistance to CFS.
Are there, even in Asia (arguably starting at the Landstrasse in Wien, girdling half the globe - Turkey, most of Russia, all China, Nippon, Hawaii, Afghanistan, Burma, Thailand, Malaysia, Indonesia........), perhaps, tranquil islands, where dwell, perhaps, Lotus Eaters, who are not labelled with CFS?
Cultural immunity. Hmm.
Competing interests: Curiosity
Sorry to hear about that all Joss, but thanks for posting. I really wish I had recordings of my appointments at a CFS clinic, as they seem to be rather more careful with what they put in writing.
This is part of the problem. Information out there gets used no matter how long ago it was publsihed and without regard to whether it is still accurate, thus becoming a meme in itself.
I wonder if this is a last ditch effort to try to defend their position and avoid responsibility for the harm that has been done to patients by trying to make a serious organic neurological disease into a psychiatric one. The truth of myalgic encephalomyelitis will come out as current and future biomedical research is being done. They are on a dying ship. It may take some time, but they are on a dying ship.
You can also try a Google Site Search
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