Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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CFS Unit at Kings College Hospital (UK)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jul 6, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    erin, MEMum, Luther Blissett and 33 others like this.
  2. A.B.

    A.B. Senior Member

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    I'm surprised there were any patient group supporting this in the first place. Are there really patients around that think they suffer from a "complex of false illness beliefs and avoidance behaviour" and possibly "exercise phobia"?
     
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  3. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Was Sanhouse's "fora" comment alluding to PR?
     
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  4. Invisible Woman

    Invisible Woman Senior Member

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    Well , perhaps if the PACE trial investigators and QMUL would hand over the data we could have a proper discussion. As he's familiar with the "fora" he should be aware we're all up for discussion here.

    If they had any respect for patients they would provide all the information (anonymized, of course) so patients can have informed discussions and make informed decisions. But wait....then maybe his patients would learn something and make different (better?) decisions as Dionysus pointed out in the comments.
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    1. It is fair to state that not all that many patients are well informed about the state of research and treatment in this country, other than where they come into contact with it. That the South East London group have taken this action should hopefully alert more people to what is being done in their name and the gauntlet that they run when getting involved with Chronic Fatigue Services. Presumably, the patients' concerns refer to getting better. When treatments are being offered that have no proven long term benefit and have been reported by users as harmful, the fact that these treatments are being marketed as great successes by Kings is more than enough reason to withdraw compliance.

    2. Where there are differences of opinion, it has constantly been the policy of Chalder et al to ignore patient concerns, obfuscate data, trivialise suffering and generally marginalise and belittle the population who they are reputedly trying to help. There comes a point in any abusive relationship where one simply has to stop engaging with those perpetuating the abuse. That point was reached decades ago and it's high time some local support groups caught up. This is a good start.
     
  6. Esther12

    Esther12 Senior Member

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    Is there a full copy of the Santhouse comments available? Does sound like a hilarious argument from him, considering how KCL/QMUL/PACE have responded to concerns.

    Good to have them be pushed on this.
     
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  7. Yogi

    Yogi Senior Member

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    This is shocking news that there was a patient support group that supposedly was giving legitimacy to Simon Weasely and Trudy chalder at Kings College.

    Can mods move this to general news rather than discussion as everyone needs to know this news.

    It is good that they have now severed their links. Why on earth did they support Kings College in the first place and what was their motivation and what did they get in return?
     
    Last edited: Jul 6, 2016
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  8. worldbackwards

    worldbackwards A unique snowflake

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    It's not uncommon amongst local support groups to take a three wise monkeys stance and be nice to everyone. My local group is pitiful in this respect.
     
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  9. Yogi

    Yogi Senior Member

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    This is all so bizarre.

    Here is the SEL group website

    http://www.selmesg.org

    There are no newsletters that were published. I am sure we would all like to see these.

    "Over the past 11 years, senior M.E. group members have met twice a year with the co-directors of the King’s CFS unit, Professor Trudie Chalder and Dr Alastair Santhouse, to discuss matters of mutual interest. Regular reports of these meetings appeared in the group newsletter for all to see."

    Catherine hale- surprise surprise- works for AFME

    However she did write this good article. But why did it take her 30 years to come to her senses and see the obvious????

    http://forums.phoenixrising.me/inde...ale-the-politics-of-stigma-with-me-cfs.41865/

    Patrica Dr Wolfe is referred to here

    http://forums.phoenixrising.me/inde...media-sensation-patricia-de-wolfe-2009.14468/



    @Esther12 here is his Twitter

    https://mobile.twitter.com/Dr_psychiatry

    Why do they not discuss the PACE trial and instead hide behind the FOI act.
     
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  10. Esther12

    Esther12 Senior Member

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    I've seen a few good things from Catherine Hale in the past.

    Also, while the way some patient groups can turn a blind eye to the harm caused by authority figures, seemingly out of cowardice and deference, is infuriating, it is also worth trying to be understanding of the failings of a small local group imo: if it was set up by people who just wanted a supportive chat over a cup of tea, they might not have thought they'd need to be trawling through academic papers to see how untrustworthy some NHS 'experts' are.
     
    Last edited: Jul 6, 2016
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  11. Esther12

    Esther12 Senior Member

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    PS: The above in no way refers to Colin Barton and the Sussex and Kent ME group, who seem to be busily trying to promote quackery on a national level too.
     
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  12. Wolfiness

    Wolfiness Activity Level 0

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    Hang on, hang on - are places like King's College *still* advancing the view that ME is "a complex of false illness beliefs and avoidance behaviour" ? I thought they had at least in public withdrawn from that position ?
     
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  13. Bob

    Bob

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    Just to clarify, I think Hale works for AfME only in a voluntary capacity.
     
  14. barbc56

    barbc56 Senior Member

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    @worldbackwards wrote:
    I think the irony meter just broke.

    So if I understand correctly, we should be opening a dialogue even though we would be at a huge disadvantage about what we can "dialogue" about because ALL THE BLODDY DATA HASN'T BEEN RELEASED!

    I mean what do they take us for? We patients are not the the ones who are clueless, here!

    So there!:p

    EDIT. I was so outraged, I missed others saying the same thing. I think that's called great minds and all. Saying the same thing, not skimming posts because you want to make your point which you think is unique and it turns out you are just reinventing the wheel.

    My bad. Lesson learned.:D
     
    Last edited: Jul 6, 2016
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  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Well...it would be kind of like being in 1933 Germany as a disabled person and supporting the Eugenicists, wouldn't it? :p
     
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  16. Wolfiness

    Wolfiness Activity Level 0

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    Well, they're not deliberately killing us, it's always accidental.
     
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  17. Dolphin

    Dolphin Senior Member

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    I believe people already spent quite a lot of time answering this question for you in an earlier thread you set up:
    http://forums.phoenixrising.me/inde...psychosocial-model-of-me-poll-included.44836/

    If you think it is incorrect I think the onus should now be on you to say why you think it is incorrect rather than continually appearing to suggest they may be being misrepresented, without giving evidence.
     
    Last edited: Jul 6, 2016
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  18. Wolfiness

    Wolfiness Activity Level 0

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    FFS Dolphin don't start on me, I wasn't picking a fight, it was a question of fact and I would have been satisfied with a yes.
     
  19. Dolphin

    Dolphin Senior Member

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    Yes
     
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  20. Wolfiness

    Wolfiness Activity Level 0

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    Thank you :)
     
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