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United Kingdom: Sheffield ME & Fibromyalgia Group News

Discussion in 'News from organisations' started by Gecko, Oct 9, 2018.

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  1. Grigor

    Grigor Senior Member (Voting Rights)

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    Thank you for that slide @Robert 1973. Super interesting! Good questions!
     
    Grigor, Apr 24, 2020
    #21
    Peter Trewhitt, Andy, Barry and 1 other person like this.
  2. Andy

    Andy Committee Member

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    Well, I've got the technology, as I have used Zoom to connect with all the researchers I have spoken with in our Q&As, but unfortunately I don't have the spare time or energy at the moment to organise anything like this.
     
    Andy, Apr 24, 2020
    #22
    ukxmrv, Peter Trewhitt, Grigor and 3 others like this.
  3. Gecko

    Gecko Senior Member (Voting Rights)

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    Gecko, Apr 25, 2020
    #23
    Sly Saint, Grigor, Peter Trewhitt and 4 others like this.
  4. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
    England
    Sorry so late posting this!

    2pm today Thursday 24th September 2020

    ME/CFS in children and young people - an ideal approach compared with less than ideal approaches

    This talk is especially relevant to families supporting young people and those not getting the support they need from schools and services. It will also be relevant to families supporting young people with long Covid symptoms.

    With Dr Nigel Speight and the TYMES Trust charity.

    Register here to participate to the event (via phone or online) and have the possibility to ask your questions directly to our guests. Or watch the live stream on our Facebook page


    Article on Sheffield ME & Fibro Group Website:
    https://www.sheffieldmegroup.co.uk/post/online-talk-me-cfs-in-children-and-young-people-dr-nigel-speight
     
    Gecko, Sep 24, 2020
    #24
    ukxmrv, Andy, alktipping and 7 others like this.
  5. Trish

    Trish Moderator Staff Member

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    Will it be available to watch later, @Gecko?
     
    Trish, Sep 24, 2020
    #25
    Andy, alktipping, Lisa108 and 1 other person like this.
  6. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
    England
    Sheffield ME & Fibromyalgia Group invite you to:
    Activities include:
    • PIP tips
    • Murder Mystery
    • Mindfulness
    • "Why real food matters" workshop
    • Singing
    • Quiz
    • Play Reading
    • Writing Workshop with childrens author Berlie Doherty
    • "What is a trustee" workshop
    • And more!
    Check out the full calendar of events and how to register here: https://www.sheffieldmegroup.co.uk/octoberfest2020

    ________________

    More info:

    Who is it for?

    We have been organising this festival for the community of people suffering from ME/cfs, Fibromyalgia or/and long Covid symptoms. It is a time to get together and share good moments with people who understand your condition. This festival is free and open to non paid members, and we encourage you to become a member to take part in our future events.

    How to join?

    The whole festival is over Zoom, and you need to register (for free) to each session you wish to attend. The registration page along with more details about each activity can be found by clicking on the name of the activity in the calendar above. You are welcome to join for all of them!

    The registration system is securing the sessions from external intrusions. You are in a safe space. Also, you do not need to turn your camera on during the activities, and you can even join by phone with the number provided in the registration's confirmation email.

    Need help with Zoom?

    Have a look at this short video we created for you. You do not need to download the Zoom app or to have a Zoom account to join us. If after clicking the link you get a pop-up "Open Zoom meetings" to open the app, just click Cancel and then further down click "Join from your browser" just like on the video.

    If you feel unsure about joining an activity over Zoom, we will be happy to answer any questions you might have and we can even guide you through a private 'trial' meeting so you have a first experience of it.
     
    Gecko, Sep 24, 2020
    #26
    Amw66, Andy, Peter Trewhitt and 2 others like this.
  7. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
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    Yes! On facebook immediately and on YouTube as soon as we can get it uploaded.
     
    Gecko, Sep 24, 2020
    #27
    ukxmrv, Andy, alktipping and 5 others like this.
  8. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
    England
    Available on Facebook to watch in your own time now:

     
    Gecko, Sep 24, 2020
    #28
    DigitalDrifter, Andy, alktipping and 7 others like this.
  9. Trish

    Trish Moderator Staff Member

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    Trish, Sep 24, 2020
    #29
    Andy and Gecko like this.
  10. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
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    @18:00 He conflates ME with neurasthenia, without explaining that it would be a misdiagnosis. He should have clarified on that.
     
    DigitalDrifter, Sep 26, 2020
    #30
  11. Gecko

    Gecko Senior Member (Voting Rights)

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    Location:
    England
    First event happening at 2pm today.

    PIP tips: How to successfully navigate the system. Mon 5th @2pm with benefits advisers Ellie and Sarah.

    Click on the event name in the calendar on this page to register and get the link to the zoom session:
    https://www.sheffieldmegroup.co.uk/octoberfest2020


    Or register for another event!!
     
    Gecko, Oct 5, 2020
    #31
    cfsandmore, Amw66, ukxmrv and 2 others like this.
  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    What a great idea and great content - I hope it's a huge success for you.
     
    Amw66, Oct 5, 2020
    #32
    cfsandmore, Gecko and Trish like this.
  13. Gecko

    Gecko Senior Member (Voting Rights)

    Messages:
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    Location:
    England
    Sorry for posting this so late!

    2:30pm Friday 20th November

    Dr Diane O'Leary, philosopher and bioethicist is giving an online talk hosted by Sheffield ME & Fibromyalgia Group.

    Seeing the big picture: ME, Fibromyalgia, MUS, FND and Long Covid

    Information and registration here: https://www.sheffieldmegroup.co.uk/...icture-me-fibromyalgia-mus-fnd-and-long-covid
     
    Last edited by a moderator: Nov 20, 2020
    Gecko, Nov 19, 2020
    #33
    Barry, ScottTriGuy, Amw66 and 6 others like this.
  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    Amw66, Nov 19, 2020
    #34
    MEMarge and Gecko like this.
  15. Andy

    Andy Committee Member

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    It'll be interesting to find out if she talks about her belief that ME=physical illness, CFS=mental illness.
     
    Andy, Nov 20, 2020
    #35
    shak8, Invisible Woman, Saz94 and 8 others like this.
  16. Trish

    Trish Moderator Staff Member

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    From the description of the talk:
    Surely the aim is to remove all those conditions listed from 'psychosomatic diagnosis', whether suffered by men or by women.

    As Andy says, Dr O'Leary has not retracted her suggestion, in a Rapid Response to a BMJ article recently, that CFS is a psychosomatic condition and ME is a physical condition, which is harmful nonsense. There is no evidence that her purported psychiatric condition 'CFS' exists in any patient. It's a figment of the imagination of the likes of Sharpe et al. who want to throw us under that particular bus.

    I hope someone will ask her this afternoon to clarify this. I might watch it if I remember.
     
    Trish, Nov 20, 2020
    #36
    Arnie Pye, Jim001, TiredSam and 15 others like this.
  17. Trish

    Trish Moderator Staff Member

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    I just tried rather late to sign up to the zoom session, but didn't manage to make it work, so I am watching on FB. I have sent a question to the email address, given in the sign up letter. No idea whether it will get through, as it seems we are supposed to ask on FB. Oh well.
     
    Trish, Nov 20, 2020
    #37
    shak8, Invisible Woman, cfsandmore and 1 other person like this.
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Not impressed with her response to the above question.

    CFS is used very widely in the US

    ETA Trish's question was the first to be asked
     
    MEMarge, Nov 20, 2020
    #38
    Invisible Woman, Mij, Saz94 and 6 others like this.
  19. Trish

    Trish Moderator Staff Member

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    I ended up watching on FB.

    She suggested that ME/CFS has been the heart of the development of psychosomatic medicine, with the PACE trial as the definitive trial not just to justify CBT/GET for ME/CFS, but for all conditions under the MUS umbrella, which she says is now being renamed as FND. I guess she's right about PACE in the sense that Crawley, Moss Morris and their ilk have moved on from PACE to use the same flawed methodology to try to 'prove' directive CBT works for IBS, and other conditions too.

    She has a rather rosy view of how much of a game changer the new NICE guideline will be, I thought. As far as I can see it will probably take the next 30 years to completely undo the harm of the last 30 years, unless we get a difintive biomarker and effective biomedical treatment. It's only a guideline, it's not an instruction to ME clinics to shut down and a new system set up with doctors who understand ME.

    Though she does observe that there is a lot of quiet pushing below the surface to bring long Covid into the psychosomatic field, so she acknowledged the battle isn't over.

    She still has this odd blindspot about using CFS to name a psychosomatic condition and ME for the physical disease. I thought the chair of the discussion handled that very well, politely giving Dr O'Leary plenty of opportunity to row back from that, but instead she just dug herself deeper into the hole.

    Her position now seems to be that doctors know nothing about ME or CFS so they need clarity, with CFS as a psych condition and ME as a physical disease. She claims that is what happens in the USA, which is simply not true.

    She doesn't seem to recognise the possibility that there is no such thing as psychosomatic CFS. Fatigue in mental health disorders like depression is a real thing, so is fatigue resulting from difficult life circumstances, but that's not CFS, nor is it psychosomatic.

    Nor does she acknowledge the harm that comes from publishing in the BMJ a letter redefining CFS as a psychiatic condition, when many all round the world with ME/CFS have CFS recorded in their medical notes and CFS is listed on the official disease naming systems as the same as ME. You can't just decide to rename something and throw millions of patients under a bus like this. It might be all right in philosophy to argue over and redefine terms, but it's not all right for real life patients.

    There was rather too much dependence on Twitter chat as a basis for accusing ME patients of attacking people with FND, which I though was very unfair and unhelpful. Twitter should not be used as a basis for any sort of assumptions about whole groups of patients.

    And she seemed to think it was up to patients to build bridges with the medical community including, I think she implied, those who have got it wrong - I can't see how we can do that with the likes of Wessely, White, Chalder, and their rejection of the draft NICE guideline.

    Anyway, it was interesting to hear her perspective, but I didn't feel I gained any new insights.
     
    Trish, Nov 20, 2020
    #39
    Arnie Pye, Daisybell, Jim001 and 29 others like this.
  20. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    It sounds a bit like the true ME crowd, which seem to sometimes take the position that ME is real and that if CBT/GET work it must be because the patients have CFS which isn't a real illness like ME.

    In my view, progress must be made with solid arguments, not this kind of talk about real and false ME or CFS or whatever.

    An unfortunate side effect of this approach of trying to legitimize ME is that it agrees with the baseless psychiatric theories that depict an imaginary illness (without ever saying it outright).
     
    Last edited: Nov 20, 2020
    Hoopoe, Nov 20, 2020
    #40
    ahimsa, lycaena, rainy and 19 others like this.
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