1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

United Kingdom: Sussex & Kent ME/CFS Society News

Discussion in 'News from organisations' started by MeSci, Jan 13, 2018.

  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,731
    It's good she replied. You reminded me that my MP (Rebecca Long-Bailey, Lab) hasn't responded to a single email in the last 9 months. Even Theresa May's office wrote back to me when I contacted them! As a lifelong Labour voter I might finally jump ship to the Greens!
     
  2. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,440
    Location:
    Cornwall, UK
    My MP (a Tory, after years of LibDems) sometimes replies. Caroline took quite a while, but then I'm not local to her, so she didn't have to reply at all.
     
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,731
    Usually, they won't reply unless you're a constituent or someone official. Councillors can be better (my mum is a local councillor, and constituents seem to prefer her to their local MP, since she does more locally). I'm impressed Caroline Lucas responded at all. It certainly indicates to me that she's on our side and not just going through the motions.
     
    MEMarge, ladycatlover and Trish like this.
  4. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,440
    Location:
    Cornwall, UK
    Or just that she wanted to respond to a keen long-term Green?
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Merged thread

    Help for children with ME – December
    https://measussex.org.uk/help-for-children-with-me-december/

    eta: from JAn 2020
    https://measussex.org.uk/year-change-january/
     
    Last edited by a moderator: Sep 8, 2021
    Hutan, Simbindi, MSEsperanza and 13 others like this.
  6. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Well, that's no surprise, at least to me.
     
    Simbindi, MEMarge, EzzieD and 15 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Continue to be seriously ill? I wonder just how many of those "many" end up a lot worse than they otherwise might have been, were it not for treatments administered?
     
    Simbindi, MeSci, Forestvon and 10 others like this.
  8. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    885
    Who needs enemies when we have charities like this speaking for us?
     
    Hutan, Arnie Pye, Sisyphus and 21 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    But the only 'research' they seem to highlight is whatever it is they are doing at Sussex Uni.

    this page on their site of congratulations is revealing:
    https://measussex.org.uk/about-us/30-years-plus/

     
    Hutan, Simbindi, Esther12 and 6 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Those congratulations are the type of stuff we used to get at my work for the staff website when I worked in HR. we used to ask senior management in our organisation to give us quotes we could use in support of our projects. I don’t think they are all unsolicited.
     
    Simbindi, Binkie4, Arnie Pye and 8 others like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    Solicited or not, I'm shocked that the MEA were willing to give their congratulations to such a harmful organisation. And it's sad to see politicians being sucked in to supporting such an organisation.
     
    bobbler, Simbindi, Binkie4 and 11 others like this.
  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324

    Sorry, but FFS!

    But if memory serves, Neil was never a member of Barton's notorious IMEGA-e Yahoo Group, which inter alia, was allowed to be used for the doxing of an individual's home address.
     
    Last edited: Jan 26, 2020
  13. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    3,702
    Location:
    Liverpool, UK
    I'm horrified that Caroline Lucas is supporting them. I've sent OH the link to the stuff above, and he says he'll help me write a letter to her. She's not my MP, but she's the only Member of Parliament of the Party that I'm a member of.
     
    Hutan, Simbindi, Binkie4 and 7 others like this.
  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    I think @MeSci tried writing to her once before and got a brush off.

    Edit - which isn't to say it isn't worth writing another.
     
    Simbindi, Binkie4, MEMarge and 6 others like this.
  15. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Did those MP's attend the Parliamentary Group meeting?
     
  16. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,440
    Location:
    Cornwall, UK
    This is what I wrote:

    "Dear Caroline,

    I have been a member of the Green Party for a long time - since before I got ME and my two degrees in biological science (the Masters degree was a distinction, obtained before my recent worsening).

    I have just been shocked to find that you are a patron of the Sussex & Kent ME/CFS Society.

    Please look on the other ME sites, for example the recently set-up site https://www.s4me.info/ (Science for ME), Phoenix Rising and several other sites about ME, and you will hopefully realise that the Sussex & Kent ME/CFS Society does not represent ME properly, and in fact misleads people very badly.

    This is an illness which has been misrepresented and under-funded for decades, with the consequence that sufferers are doomed to a life of being disbelieved, mocked, underfunded, etc. Many of us were extremely able before the illness hit.

    I am passionately Green, and used to be very active until the disease made it impossible. I therefore hope fervently that you will take this email seriously, and either make urgent enquiries of the Society of which you are a patron, or simply leave, perhaps instead joining one of the more correctly-run organisations.

    There is at last a lot of movement within this illness, with America dropping references to the hugely-damaging GET (graded exercise therapy) and the ill-placed CBT (cognitive behavioural therapy), and the UK at last listening to patients and reviewing their guidance properly. (It will take a couple of years.) I would like to see the Green Party at the forefront of this revolution.

    Thank you for your time and attention to this important matter.

    Yours sincerely"

    ref https://www.s4me.info/threads/more-from-sussex-kent-me-cfs-society-date-unknown.1906/#post-33304

    I posted her reply on the same thread,

    and then I wrote:

    "Dear Caroline,

    Sorry for the delay, but my brain hasn't been working very well!

    The first article is quite good, but the rituximab study sadly didn't succeed. It may be promising for a minority of patients (maybe 30%).

    I'm glad that you signed EDM 271.

    I'm aware of the review of the NICE Guidance, and am pleased that you are keeping an eye on it. So am I, but we need to be very vigilant. We thought that the last review would produce valid results, but sadly it didn't.

    My criticism of the Sussex & Kent ME/CFS Society is based among other things on the influence of advisors such as Professor Esther Crawley (info about her can be found in numerous places) and Dr Alastair Miller (See for example https://www.s4me.info/threads/not-a-recommendation-alastair-miller-on-cfs.1685/).

    NB Jonathan Edwards, who says "Competent researchers in ME/CFS have no problem at all with patient 'activists', who value good quality research. It is not in fact that well meaning and dedicated researchers have problems with 'activists' but rather that self-promoting researchers have a problem with patients and academics such as myself calling them out for shoddy work" is a highly-qualified retired doctor and academic.

    Dr Neil Harrison appears to be OK: https://www.s4me.info/threads/cmrc-...-the-board-of-the-cmrc.2809/page-8#post-50903

    See also http://www.independent.co.uk/news/l...chronic-fatigue-illness-disease-a8133616.html

    I hope this is clear - please let me know if anything needs clarifying. I can't promise to reply quickly - ME has taken its toll on my brain after 23 years. It may be mendable!

    Yours sincerely,"

    The quotes are both from this site. Sorry I can't engage more at present. The messages are all in the same thread, I think.
     
    Last edited: Jan 27, 2020
    Hutan, Simbindi, Binkie4 and 12 others like this.
  17. TiredSam

    TiredSam Committee Member

    Messages:
    10,482
    Location:
    Germany
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Sussex ME Society call for NHS services to be further developed
    https://www.gscene.com/news/sussex-me-society-call-for-nhs-services-to-be-further-developed/

    I really wish someone (Carol Monaghan?) would put Caroline Lucas straight on the SMES.

    I am also at a loss as to how the members continue to support Colin Barton and CBT/GET.
     
    Last edited: May 9, 2020
    Simbindi, MEMarge, Sean and 6 others like this.
  19. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Certain members on here have taken the time to write polite letters explaining the issue. She doesn't seem interested in hearing it, or concerned that she is asking for things a majority of ME patients might not want - apart from Colin & his cronies.
     
    Hutan, Simbindi, lunarainbows and 4 others like this.
  20. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    So what the hell is the point of promoting treatments predicated on deconditioning and unhelpful beliefs! How two-faced and hypocritical can you get. If they still want to peddle these ideas then they should rename their society - this clearly shows ME/CFS is not what they are about.
     
    Simbindi, Mithriel, MEMarge and 4 others like this.

Share This Page