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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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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. Sasha

    Sasha Fine, thank you

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    And by the way, that guy is in charge of training GPs, according to his signature.
     
    Bob, Min, Firestormm and 1 other person like this.
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    It would be good to see a significant number of ME and CFS patients who are themselves (or who are former) GPs, clinicians, psychiatrists, psychologists, researchers, nurses, allied professionals, social workers, lawyers etc add their comments to this nasty BMJ RR.
     
    mango, Bob, Firestormm and 6 others like this.
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I've put an alert out on Twitter for medical professionals who have had to give up work due to CFS, ME to respond to the BMJ and also alerted a former GP. Please RT, if you can.

    And if you know a medical professional who has lost their career due to the illness, or has had to reduce their hours or give up work to care for a child or YPWME, partner or relative, please alert them to the BMJ RR thread.
     
    mango, Wildcat, Sean and 9 others like this.
  4. Esther12

    Esther12 Senior Member

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    lol at their response


    http://www.meassociation.org.uk/201...-to-consider-wider-implications-20-june-2014/

    From what I have experienced and read, it seems that it does reflect the ill thought out instincts of many of those making money from biopsychosocial rehabilitative approaches to CFS. The only thing surprising to me about it was that they did such a poor job of veiling their opinions in the way that would allow them to escape any responsibility for them. That they're now arguing that their letter doesn't represent their views is a rather poor attempt to do this retrospectively.

    I'm disappointed that they've semi-backed down (without really acknowledging how ill thought out their views were), when it would have been much more fun watching them try to defend their views.
     
  5. Sasha

    Sasha Fine, thank you

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    That's an excellent idea, Suzy.
     
  6. Dolphin

    Dolphin Senior Member

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    I can't remember whether it has been mentioned already or not that Dr. Collings and Mr. Newton are part of a regional service for CFS headed by Prof. Peter Denton White

    Sample reference (courtesy of @Maxwhd on Twitter):

    http://www.audleymills.co.uk/Referrals/LinkedDocuments/CRU Policy 2010.pdf
     
    Bob, Ritto, Valentijn and 2 others like this.
  7. Sasha

    Sasha Fine, thank you

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    What a bizarre response.

    I simply can't make sense of this. The authors wrote it and asked for it to be published where it would be seen worldwide. If it didn't represent their views, why do it?

    So it would have been OK for doctors to talk about us in this way behind our backs, as long as we didn't find out about it?

    If they'd written this about cancer and were part of an oncology department, would they still have their jobs?

    At least they'll be removing that offensive piece of nonsense.
     
    mango, vli, SOC and 6 others like this.
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    http://www.meassociation.org.uk/201...-to-consider-wider-implications-20-june-2014/

    Full text of response:

    Dear Dr Shepherd

    Thank you for your email.

    The article you refer to has not been sanctioned by the Essex CFS/ME service and does not represent the views of the Essex CFS/ME service or Southend University Hospital NHS Trust.

    It also does not necessarily represent the views of the authors.

    In the first instance, I have instructed the Trust’s communication department to contact the BMJ to remove any reference to the Essex CFS/ME service and Southend University Hospital from the response.

    I have also been informed by the authors that the submission is to be removed.

    This piece was written purely as a hypothetical deliberation.

    It does not reflect the authors’ views on the realities of living with, managing or treating CFS/ME.

    It was naïve of the authors not to consider the implications of a wider publication via the internet of what was intended to spark debate in the medical arena.

    They are very sorry for any distress they may have caused.

    Kind Regards
    Noreen

    Noreen Buckley
    Head of Rehabilitation/Essex CFS Service Manager


    Southend University Hospital NHS Foundation Trust
    Prittlewell Chase I Westcliff-on-Sea I Essex I SS0 0RY
    Tel: 01702 435555 ext 6696 I Email: noreen.buckley@southend.nhs.uk
    Personal assistant/Secretary: Jill Butten ext 8646

    Visit our website: www.southend.nhs.uk
     
    Firestormm and Sasha like this.
  9. user9876

    user9876 Senior Member

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    They are embarrassed and trying to remove their statements from the public record as they know they are not acceptable. However, there is no disciplinary action against the doctors - in effect the CFS service is basically supporting the views but doesn't want them expressed in public.

    I think it needs to stay on record as it shows potential patients for their service that those treating them do not take their illness seriously.
     
    vli, Bob, Firestormm and 6 others like this.
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    It got 4 "Likes", too, which is also disturbing.
     
    Wildcat, Bob, Firestormm and 3 others like this.
  11. shahida

    shahida

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    It's all very well to attack vulnerable patients but these people -and 'Professor' Wessley is the same- never actually address the very good scientists who are making discoveries. Surely they're insinuating therefore that the likes of Dr klimas, Dr newton etc etc are.....what exactly? And Dr Baraniuk? They spending money doing what exactly? In relation to Sacha's comment I get the feeling that these good researchers don't speak out because of the personal risk to themselves (Dr Lacerda said so publicly) To their reputations and this, I guess is tied in with research funding process which is hardly transparent and fair and probably relies on who you know -ie. a political game.
    We are within our right to keep the pressure up on this individual/s to resign and shouldn't lose the momentum on this one-anyone being so derogatory should lose their job. In this day and age of social media where what you say reaches so many more and has greater consequences, there is a burden of responsibility on people in public and responsible positions. Others have done/said less and had to go. My view.
     
    Bob, rosie26 and Sasha like this.
  12. Valentijn

    Valentijn Activity Level: 3

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    Weird. I think they're now trying very hard to imply that the authors of the nasty letters didn't mean what they were saying, but were just trying to provoke a response for our benefit.

    But due to their complete failure to say that outright, it all looks rather deceitful.

    I said it before and I'll say it again: those men should not have any contact with ME/CFS patients, certainly not as doctors, nor in training other doctors. If I lived in England, I'd be demanding their immediate dismissal.
     
    vli, Wildcat, Bob and 5 others like this.
  13. Cheshire

    Cheshire Senior Member

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    I'm wondering what could represent the view of any author if everything one writes, not in a tweet, but in a published review, does not represent what one thinks?

    That's just one of the poorest excuses I have ever heard of... Like a 8 years old kid surprised in bullying a weak child to get admiration from his peers, and when caught, saying "oh no I didn't mean it".
     
    Nielk, Wildcat, Bob and 4 others like this.
  14. Dolphin

    Dolphin Senior Member

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    Here's an earlier letter from Noreen Buckley of the Essex service, courtesy of @Maxwhd on Twitter who describes it as propaganda:
    http://www.gazette-news.co.uk/search/4453571.How_we_can_help_ME_sufferers_in_north_Essex/

     
    Valentijn likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    So are they still pretending that CBT/GET has anything to do with recovery, or are they over-selling the actual benefits of pacing?

    I'd rather have the forbidden "symptom relief" any day of the week, seeing as the "rehabilitation therapies" have been repeatedly proven to be a complete failure.
     
    Wildcat and Keela Too like this.
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I would also have preferred to see it remain on the site.

    Published on June 18th, it does not appear to have been cached yet by Google. Could someone please check for a cached page URL during the time when we in UK are tucked up with Teddy, as it may be removed over the weekend.
     
    Valentijn and Sasha like this.
  17. Esther12

    Esther12 Senior Member

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    This is why conferences etc, should be recorded and made available to patients. Patients should be able to know what is being said about them behind their backs by those who may end up in positions of authority over them.

    Maybe the BMJ will not remove it? I don't see why they should.

    Archived here, but I think sites can have their content removed: http://web.archive.org/web/20140620163611/http://www.bmj.com/content/329/7472/928/rr/702549
     
    PhoenixDown, Valentijn and Sasha like this.
  18. Esther12

    Esther12 Senior Member

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    Before patients consent to a doctor's biopsychosocial treatment, they should be properly informed about the medic and the proposed intervention. This isn't taken nearly seriously enough with CFS where patients are routinely seen as too 'dysfunctional' to be allowed to make their own decisions about their healthcare. This prejudiced culture is one reason why I think the spinning of results from PACE was so accepted within the British medical establishment.
     
    mango, Wildcat, Cheshire and 6 others like this.
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Esther12 likes this.
  20. Jonathan Edwards

    Jonathan Edwards Board Member

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    I wonder if Ms Buckley might now add that this letter, which is about as well founded as an advert for Wellknown vitamin supplements, does not in fact represent her views and that she was naive to write a letter to a popular gazette not realising it might (shock horror) be read by a professor of medicine who takes the issue of evidence rather seriously. At least the people writing this response have admitted they were bloody fools. I am not sure that getting away with naivety will do though. This was patronising arrogance, as they probably do realise.

    Well done Charles.
     
    vli, catly, Kina and 11 others like this.

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