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Video by Dr Myhill: Time to stop the abuse of CFS patients

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Aug 17, 2017.

  1. Valentijn

    Valentijn Senior Member

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    They weren't off-topic, though perhaps tongue in cheek. Dr Myhill was quoted on page 4 of this thread as follows:
    If someone is confused, they can always ask what's going on instead of having the comments deleted :p
     
  2. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I would also say that a sense of humour when reviewing some of these things is essential. it can be quite dry without (resisted the temptation to insert a rich tea biscuit).

    Having said that I understand that too many biscuits can give some people unpleasant symptoms so the biscuit police will always need to be vigilant ...:ninja:
     
  3. slysaint

    slysaint Senior Member

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    that does rather take the biscuit
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I've been thinking about this (over coffee and biscuits).

    The posted Myhill video is good (with exception of the three? factual errors that I heard). I don't really have an issue with the triggers she mentions as leading to ME.

    Perhaps this can be separated from the political/social justice issues around ME. If the advocacy is not focussed around Dr Myhill I think I could feel comfortable convincing anyone I know in the UK to participate by signing.

    I'd like to consider more on what what wide support of this might look like and what it could accomplish. And also on the other hand what problems might there be in advocacy led by Dr Myhill.
     
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  5. Sushi

    Sushi Moderation Resource Albuquerque

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    True, so I left a few "cookie posts" but members were getting lost in all the cookie crumbs and asked for help. :confused:
     
  6. NelliePledge

    NelliePledge plodder

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    Release the missing biscuits!
     
  7. slysaint

    slysaint Senior Member

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    I can just see the next Daily Mail headline "ME patients fight over biscuit-gate".
     
  8. anni66

    anni66 mum to ME daughter

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    It is a better picture than the poorly educated, criminal, benefit amassing images painted by other " experts"
     
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  9. Mij

    Mij Senior Member

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    Does anyone not find it odd that Dr.Myhill states that a "major" reason that so many cases of CFS are caused by 'occupational hazards'?

    "silicon breast implant fatigue syndrome", '9/11 syndrome" etc yet never mentions viral infections. She also says they all switch on autoimmune diseases. We don't know if M.E (as I call it) is autoimmune at this point.

    I'm confused.
     
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  10. Manganus

    Manganus Senior Member

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    No, not really. One has to understand the difference between science and clinical experience.

    Dr. Myhill states what she believes. It is clearly her own interpretation of her own experience. And must be evaluated as such.

    If this is helpful or not is not easy to determine.

    But she might be right.
    On one point, ...
    or on many.
     
    PeeWee, Barry53, TiredSam and 3 others like this.
  11. anni66

    anni66 mum to ME daughter

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    She has info on viral infections on her website and in her book, and until the GMC intervened prescribed antivirals. So, although not mentioned, she does believe that these are also causes/ triggers .
     
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  12. Skycloud

    Skycloud Senior Member

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    I think there's confusion in part because of the murkiness created with the invention of CFS as a term. It's whole purpose was obsfucation. ME is one thing; CFS is another, or several other, things. This really doesn't help.
     
  13. Mij

    Mij Senior Member

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    My sister who has Hashimto's came to visit just recently (she works in Ryadh) and was feeling warmer and more 'fatigued" than me, she needed to rest quite often. She constantly needed the A/C on and I was just peachy cool.

    It was kind of weird considering I've been disabled for 26yrs., heat intolerant but wasn't 'tired', I just couldn't walk or stand for very long.

    She even asked me to make her breakfast :eek:
     
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  14. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    I once believed that ME was a better name than CFS and the UK must have a better understanding of this illness.

    Then I lived there.

    I now refuse to say that my problem is ME.

    Different letters, same cowardly purpose.
     
  15. 2kidswithME

    2kidswithME

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    having heard Sarah speak a couple years ago, I remember how fast she spoke, would have left many listeners in the dust. As I don't have ME I was fine, but I did wonder if some would have struggled to follow. I would encourage her to slow down massively-- it can be done, just needs some practice.
     
  16. sianrecovery

    sianrecovery Senior Member

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    I will definitely feed that back to her, thanks!
     
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  17. sianrecovery

    sianrecovery Senior Member

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    Exactly so. I did a clip when we started the channel on CFS and shame, and I deliberately used the hated CFS title because that was the diagnosis my friend who I was discussing lived and died with, and where so many people start from when they begin investigating the condition post-diagnosis.
     
  18. sianrecovery

    sianrecovery Senior Member

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    Thank you so much for saying what I wasn't eloquent enough to say myself. Dr. Myhill is as far as I know the only practising UK doc who will stand up and say that ME is an illness, not a psychological problem. And that has to mean something.
     
    Jan, anni66, pamojja and 2 others like this.
  19. sianrecovery

    sianrecovery Senior Member

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    I'm fine with criticism of my filming - I want to improve. And thanks for the factual corrections, we have put them in the copy, and I will more carefully fact check the next clips I film. Dr. Myhill made these pieces at my request; she's not trying to put herself forward as a spokesperson for the whole community. As for those on this thread that have called a quack, a lunatic, clueless, etc etc. I find bewildering that the one practising doctor in the UK prepared to go to bat for us evokes such hostility. I find Sarah to be a well-read, sane, and humane and effective clinician, and she has tolerated years of harassment in order to keep treating PWME.
     
  20. sianrecovery

    sianrecovery Senior Member

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    funny you should say that, I've just had a big biscuit use-up. And they were chocolate biscuits too...;)
     
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