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News from Doctors with ME

Discussion in 'News from organisations' started by Wyva, Jun 29, 2021.

  1. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    Last edited by a moderator: Nov 3, 2021
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    3,664
    Thank you so very much for this welcome and heartening news.
     
  3. Louie41

    Louie41 Senior Member (Voting Rights)

    Messages:
    1,308
    Location:
    upper Midwest US
    This looks promising, and I look forward to hearing the views of others more knowledgeable than I.
     
  4. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
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    Location:
    North-West England
  5. Trish

    Trish Moderator Staff Member

    Messages:
    51,860
    Location:
    UK
    Thanks for the link. That position statement on the new NICE guideline looks sensible to me. I hope it's the start of a big publicity campaign among doctors, other health practitioners and clinical commissioning groups who will be deciding what services to provide locally for ME and Long Covid patients, once the new guideline comes out (assuming the new guideline doesn't go back on its key recommendations).
     
  6. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,580
    Location:
    North-West England
    Yep. The release of the final guideline must be the start of a new campaign for properly funded, safe, adequate, specialist services - not some underfunded network of clinics with no central organisation, aims, or data keeping.
     
  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,324
    An unlocked PDF is downloadable from this page (and a copy attached):

    https://doctorswith.me/position-sta...halomyelitis-chronic-fatigue-syndrome-me-cfs/

    PDF:
    https://doctorswith.me/wp-content/uploads/Position-Statement-NICE-2021-guideline-6th-July-2021.pdf
     

    Attached Files:

    Last edited: Jul 3, 2021
  8. Andy

    Andy Committee Member

    Messages:
    21,809
    Location:
    Hampshire, UK
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Louie41, Ariel, InfiniteRubix and 4 others like this.
  10. Wyva

    Wyva Senior Member (Voting Rights)

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    1,368
    Location:
    Budapest, Hungary
    Now people can apply to be a member: https://doctorswith.me/home/join-us/

    Also, you can now read the code of ethics and conduct and application policy: https://doctorswith.me/the-dwme-code/

    "We are thus required to reject applications from individuals who risk breaching these obligations. In particular, we are obligated to exclude individuals or organisations that have prejudicially low standards of scientific process, probity or discipline. We may also require demonstration of significant adoption of requisite standards and/or specific public repudiation of past failings in the field.

    These requirements, or others that the Board deem necessary, are determined by the scientifically prejudicial and discriminatory history of this field. High profile and/or insistent examples of contra-scientific behaviour have undermined the field. These include promotion of low standards, misselling of conclusions, interference in careers of scientists who insist upon minimal standards or manipulation of review mechanisms to evade scientific process. This has even included examples of temporary interest in scientific consensus, which is later replaced by highly publicised reversion to very low standards without scientific accountability.

    This list of events and their risks of reoccurence is not exhaustive."
     
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    Jolly good.

    None of this "but I'm so misunderstood" whinging tactic adopted by some as the default strategy when they are called to account. Trying to play the victim when their words have caused no end of suffering to others.

    If they now believe something different, then it's time to set the record straight and state that clearly and unambiguously.
     
  12. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    Job: We are seeking remote volunteer Science Writers who are based anywhere in the world and can synthesise research articles into summaries, by selecting impactful wording and quotes that share the primary take-home points. These headline points must catch the eyes of our time-scarce professional audience, composed of medics, scientists and policy makers.

    There are no required hours and commitment level can be determined by the applicant.

    Application is by demonstrating ability via a practical exercise. The article must be in formal English.

    Applicants must use the share CV facility to upload a trial post that they must write. Any problems submitting your document can be resolved by email after application.The submitted document must apply our existing research summary post format, which was used for a recent Leonard Jason article (link below). That format must be replicated by you to similarly discuss a specific new article in your document (specific article links also shared below).

    You may also submit additional summaries of other important / recent research in that same format to support your application. This will also demonstrate additional ability to identify new content opportunities, particularly based on research by DwME figures.

    Posts in this specific series of research summaries will not be attributed to the writer. The role will be valid for LinkedIn, CV or other career purposes and we can offer references for work done.

    WordPress experience is advantageous, but not required.

    Format:
    https://doctorswith.me/stigma-and-causal-attribution-new-research/
    - Punchy short post title
    - Intro paragraphs that deliver meaning and context
    - Impactful quote selection 1-3 (length dependent, minimum 1 from actual article, may also include quotes from the authors in other sources about the article)
    - Abstract
    - Citation construction (Lancet or other scientific formats)
    - Identification of all authors who are publicly documented DwME figures e.g. directors, fellows, etc. (names only biographies not necessary)

    Apply above format to:
    https://www.medrxiv.org/content/10.1101/2021.06.14.21258895v1
    Additional citation / quotation can be made from, if you wish:
    https://cfsformecfs.org/2021/07/15/me-cfs-research-state-of-the-art-state-of-the-science/amp/

    Original Facebook post:

     
  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    4,255
    Location:
    Aotearoa New Zealand
    Peter Trewhitt, merylg, Joel and 12 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    9,574
    Location:
    UK
    Myalgic Encephalomyelitis: “How the Paradigm has Shifted”

    https://doctorswith.me/myalgic-encephalomyelitis-how-the-paradigm-has-shifted/
     
  15. Trish

    Trish Moderator Staff Member

    Messages:
    51,860
    Location:
    UK
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
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    Location:
    UK
    Interview with Doctor Nina Muirhead
    "Doctor Nina Muirhead is a graduate of Oxford University who works as a Speciality Doctor in Dermatology Surgery, as well as being Chair of the CFS/ME Research Collaborative Medical Education Working Group, a Director of Doctors with M.E., Forward M.E. representative and Expert Witness for the National Institute of Health and Care Excellence (NICE). She is involved in M.E. research and education and has written a free ME/CFS online training module for healthcare professionals. I was interested to interview Doctor Muirhead, as a medical professional and person with M.E., and she very kindly agreed to answer my questions."
    https://meandmyisland.co.uk/interview-with-doctor-nina-muirhead/

    (transcript and audio)
     
    Jan, Louie41, Kitty and 7 others like this.
  17. Trish

    Trish Moderator Staff Member

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    51,860
    Location:
    UK
    That seems to be an old letter from 29th August.
    Hopefully DwME are putting together a response to the guideline.
     
    Louie41 and MEMarge like this.
  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,199
  19. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Any organisation which breaks this news with

    The commercial opportunities and implications are also notable, not least for the pharmaceutical and financial services industries.”

    Doctors with M.E.

    should be kept at arm's length. IMO
     
  20. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    Sorry, but financial services industries? I'm all for pointing out that money is to be made finding therapeutics (a point not made like this, but in theory), but I cannot understand the reference to financial services.
     

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