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BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. Firestormm

    Firestormm Guest

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    23 June 2014 from mecfsforums:
     
    Last edited by a moderator: Jun 24, 2014
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  2. Firestormm

    Firestormm Guest

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    As we were informed yesterday, the original post by Dr Collings and David Newton remains as a British Medical Journal Rapid Response (quite rightly so in my opinion), but it now states that their madness was expressed 'in a personal capacity'.
     
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  3. user9876

    user9876 Senior Member

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    I think it is disappointing that the Essex service has managed to disassociate itself with they way its staff act. They have not specified the terms of the internal review I suspect from their earlier response it will be all about media handling and public statements. They need to look at staff attitudes and the way these affect patient care.
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    I'm sure that internal review will result in the guilty parties appropriately disciplining themselves ... NOT. :meh:
     
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  5. alex3619

    alex3619 Senior Member

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    Internal reviews are usually strongly biased by self interest. It is not in the interest of any organization to implicate itself or other workers other than those already implicated. What might happen though is they will find that the authors were entirely responsible, and do something about that. There, problem solved, the Essex service is now pure and untainted!
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    I doubt they'll even do that much. The statements made by the manager in the past sound very much in line with the authors' views, and she probably has encouraged those views and even hired based upon them.
     
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  7. alex3619

    alex3619 Senior Member

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    Well, I expect a public reprimand to be more considerate in the future at the very least. I am aware that internal reviews tend to lead to punishment that usually amounts to little more than a stern reprimand.
     
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  8. N.A.Wright

    N.A.Wright Guest

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    I think that underestimates the bureaucratic force within the NHS - it has 60 years of HR practice that supports staffing relations in the biggest employer in Western Europe, once a process has started it doesn't easily stop. It's not clear from Noreen Buckley's letter whether 'full internal review' would lead to a disciplinary process but given how monumentally stupid Collings and Newton (or perhas just one of them) were in using the Trust's name, and the scale of embarrassment that has followed I'd say there's good grounds to expect someone to be identified as being 'responsible'. Given the nature of the fault I'd guess that the 'counselling option' in the action flow chart would be the most likely outcome - not what most people here would want but nicely ironic in the circumstances.

    Since last year Hospital Trusts in England have a new audience to take note of, and that's the local commisioning groups. I'm unclear how the Southend Service is funded but I'd guess the six CGs that cover Essex have inherited contracts with the Service. Contact with the Commissioning Groups might be valuable in changing the focus of the Southend Service but this really needs to be led by local ME/CFS patients, there are a few groups in Essex, I think mostly affiliated to AfME. These groups would have the strongest voice with the Commissioning Groups although AfME and MEA might be listened to as well.

    An aspect of the Southend Service is Dr Collings' apparent semi retired status, he is listed as part time only and seems to be past accepted NHS retirement age. Handled appropriately patients could develop a working relationship with the Hospital with the view to changing the focus of the service under new and more relevant leadership. Patients do have some leverage in this context - http://www.england.nhs.uk/ourwork/patients/ What would be unlikely to achieve change however would be anything that might be characterised as an unwarranted attacks on NHS staff, which would only lead to staff and managment closing ranks.
     
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  9. Min

    Min Senior Member

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    My personal opinion is that no patient should ever have to endure treatment from a physician who has openly expressed contempt of their medical condition..


    It must have taken some thought for a joint response to have been written. It is alarming that a GP who trains other GPs also apparently joined in the belittling of our neurological illness.
     
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  10. Bob

    Bob

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    Last edited: Jun 24, 2014
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  11. N.A.Wright

    N.A.Wright Guest

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    Few people would disagree with the principle but there's no point in having unreasonable expectations where wrongful dismissal claims could cost the NHS £100ks, and where staff would resist change where a witch hunt was perceived. There is also an issue of consultant level recruitment which makes staffing changes a consistent challenge for managers.
    The RR to BMJ was so nuts it's difficult to understand what effort or by who, was actualy involved. It's not unknown for some twit to post something in joint names based on cursory discussions - however Collings whose background is in gerontology does have some fairly unhelpful long standing misperceptions of M.E http://www.echo-news.co.uk/news/8182311.Clinic_helps_people_like_Margaret_cope_with_ME/

    Dr Collings said the condition – which typically affects high achievers and people with obsessional personalities – is still stigmatised

    As far as the additional comments by the GP from south Wales - I read those as being irony aimed at Collins and Newton. This certainly made me laugh:

    Presumably those cases transmitted by Anthony Collings "MeMe" constitute the homozygous form ?
     
    Last edited: Jun 24, 2014
  12. Sasha

    Sasha Fine, thank you

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    Would these guys getting the boot be an unreasonable expectation if we were talking about MS? I doubt it. I realise you're pointing out the likely realities, though, not approving of the situation.

    I don't see a difficulty here - the effort was on the part of the two who wrote it, surely?

    But no-one puts someone else's name down as a co-author without their permission.

    Argh! So he stigmatises it by association with these qualities and then points out it's stigmatised. What a prince. :bang-head:

    I read them as agreeing with Collings and Newton, with the implication that patients are self-obsessed and it's "all about ME".
     
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  13. Firestormm

    Firestormm Guest

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    Yes I agree. It was very good I thought.

     
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  14. SOC

    SOC Senior Member

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    Essex CFS Service seems to have completely missed the point.

    They apologize that such things were said publicly. They are not apologizing that they have allowed physicians with such ill-informed and insulting beliefs to treat ME/CFS patients. There is nothing that suggests that Essex CFS Service is shocked at the beliefs of their doctors about their patients, or that those doctors, and others with similar beliefs, will no longer be treating ME/CFS patients at their clinic. They are sorry that patients are concerned, not that their physicians would think such ill-informed and unkind things.


    I note, with a certain grim humor, that they are as concerned that other posters made the connection between these doctors and Essex CFS Services as they are that the doctors posted such offensive material in the first place. Apparently patients of Essex CFS Service are not supposed to know what their doctors believe about their illness. Apparently Essex CFS Service does not have the same concern that they do not employ doctors with such beliefs about ME/CFS patients in the first place. :rolleyes:

    Not only was the original BMJ RR post disgusting, the statements by the Essex CFS Service are clueless, self-serving, and insulting.
     
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  15. Sasha

    Sasha Fine, thank you

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    I completely agree, @SOC.
     
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  16. rosie26

    rosie26 Senior Member

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    This clinic is not fit for ME/CFS sufferers. It is obvious that they do not understand our illness.

    Will they slap themselves with a wet bus ticket ? They have made a huge error here and have exposed their wrong attitude and lack of understanding of the serious crippling effects of our illness.
     
    Last edited: Jun 25, 2014
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  17. Kina

    Kina Moderation Team Lead

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    The thread is now open.

    Please restrict your discussion to the subject of the original post -- ME/CFS as a meme (article in the BMJ).

    The split threads can be found here and here.
     
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  18. Roy S

    Roy S former DC ME/CFS lobbyist

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    There are some very good responses from 2004 to the original editorial content. How little some things have changed in the last decade.
    @Tom Kindlon wrote:
     
    Dr. White's views far from universally held by those working in the field
    24 October 2004
     
     
     
    While Peter White is perfectly entitled to his own views on chronic fatigue syndrome (CFS) and propose his own models for the condition, (as in this case where he writes about a speculative theory involving interoception), an analysis of the BMJ's reporting of the illness over the years would suggest that readers of the BMJ are disproportionately "exposed" to articles portraying CFS as a primarily psychiatric condition or at least one that will readily respond to graded exercise therapy and cognitive behaviour therapy.
     
    Here are the results from a quick search of the BMJ archives:
     
    Editorials in the BMJ on chronic fatigue syndrome since the start of 1994 (that's how far online searches go back)
    EDITORIALS: S M Lawrie (psychiatrist) and A J Pelosi (psychiatrist) Chronic fatigue syndrome: prevalence and outcome BMJ, Mar 1994; 308: 732 - 733.
    EDITORIALS: Stephen E Straus (appears to have similar views to the psychiatrists about CFS) Chronic fatigue syndrome BMJ, Oct 1996; 313: 831 - 832.
    EDITORIALS: Harvey Marcovitch (Consultant paediatrician who appears to have similar views to the psychiatrists about CFS) Managing chronic fatigue syndrome in children BMJ, Jun 1997; 314: 1635.
    EDITORIALS: Michael Sharpe (psychiatrist) and Simon Wessely (psychiatrist) Putting the rest cure to rest again BMJ, Mar 1998; 316: 796 - 800.
    EDITORIALS: Stephen E Straus (see above) Caring for patients with chronic fatigue syndrome BMJ, Jan 2002; 324: 124 - 125.
    EDITORIALS: Peter D White (psychiatrist) What causes chronic fatigue syndrome? BMJ, Oct 2004; 329: 928 - 929.
    Breakdown of those who wrote editorials: 5 psychiatrists with 2 others expressing views which would be inline with the psychiatrists' views of CFS.
    Classification by the World Health Organisation of ME and CFS: neurological! (ICD-10; G93;3).
    These are just the result of editorials. If one does a general search for "Chronic Fatigue Syndrome", apart from the letters, the vast majority of articles in the BMJ on CFS appear to be either written by psychiatrists or those who hold similar views to the psychiatrists on CFS.
    There has just been a major conference on CFS in the US. Various researchers presented all sorts of interesting studies, many of which would appear not be compatible with the views expressed in this editorial or indeed with the other editorials mentioned above. A summary of this conference can be found at: <<http://www.wicfs->/> me.org/Pdf%20Files/AACFS%202004%20Report.pdf
    More detailed information will be available to be bought in time from the AACFS (American Association for CFS) website www.aacfs.org <http://www.aacfs.org/> <<http://www.aacfs.org>/> . The AACFS is an organisation for clinicians, research investigators and healthcare providers rather than a patient organisation.
    Unfortunately because of the shortage of funds to do research in the area, many of these studies never get replicated.
    I hope the new editor of the BMJ will reflect on these statistics and the readers of the BMJ will be reading an alternative point of view on CFS in the future.

    <http://www.bmj.com/rapid-response/2...ews-far-universally-held-those-working-field>
     
    As has been said the United States and the United Kingdom are separated by a common language. In American this is not just bias. It's prejudice and its effects are ugly.
     
    Last edited: Jun 25, 2014
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  19. Esther12

    Esther12 Senior Member

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    Also, I think this reflects the extent to which many practitioners at ME/CFS centres do not recognise the way in which the results from PACE were spun. If you tell a group of people that they are much more successful than they really are, then of course this is going to lead to all manner of other distortions of thought.

    If the Essex CFS service were to really engage in a serious attempt to understand what has happened here, I think it would have to lead to them calling for the full release of the PACE trial's protocol defined outcome measures, so that they, as well as patients, could have a better understanding of the value of their work.
     
    Last edited: Jun 25, 2014
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  20. Firestormm

    Firestormm Guest

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    In an organisation (any organisation) how do you deal with 'free speech'? Should it be prevented? Should those within the organisation not be permitted to share their thoughts - even irrational seeming ones - publicly? Difficult sometimes - what do you do when you come up against those who don't share your opinion or view of things but who are working for the same goals: which presumably they must be as part of - in this case - the Essex CFS/ME Service e.g. 'helping patients' etc.

    Not that I don't think Dr Collings and David Newton, and Sam Lewis, shouldn't have their expressed thoughts investigated or that there shouldn't be an internal review with representatives of patient support groups/national charities taking part.

    Such thoughts were bound to reflect poorly on the Service itself and it was naive of the authors to think - assuming they did - that posting such thoughts as representatives of a CFS/ME Service would not create such a situation as we now find ourselves.

    Personally, it was for me the nature of the thinking that stuck in my craw. This whole 'meme' nonsense and the simple fact that despite having worked among CFS/ME patients in Essex the only time we heard from Dr Collings - the lead consultant physician - is about 'Meme-theory'. Talk about insulting. But is it still an example of 'free speech'?

    I wonder at the extent to which Essex and the Hospital can censor or discipline. I hope that they can. I hope that they do. But I guess we will have to wait and see.

    Anyone is able to reply to the BMJ or write to a newspaper or express their opinion about anything online in a forum - perhaps such as this - be there layperson or medical professional. At what point does 'free speech' become something at odds with the organisation you work for/represent and something you can/should be disciplined about?

    Rhetorical questions. I am just in that kind of mood this morning.
     
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