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  1. Suffolkres
    Post

    CAN LINGUISTIC ANALYSIS BE USED TO IDENTIFY WHETHER ADOLESCENTS WITH A CHRONIC ILLNESS ARE DEPRESSED? - Jones, Loades, Crawley et al Dec 15 2019

    Adolescence for many is a trial! Being down depressed challenged etc is all part of a 'normal typical adolescent journey'..... at least that was...
    Post by: Suffolkres, Dec 16, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  2. Suffolkres
    Post

    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Thanks for the clarification! I am on acronym overload it appears......
    Post by: Suffolkres, Dec 8, 2019 in forum: ME/CFS research
  3. Suffolkres
    Post

    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    Derek P is sound as a bell as are the Biobank team representatives. Looks to me a case of good intentions being allowed to stray off piste.........
    Post by: Suffolkres, Dec 8, 2019 in forum: ME/CFS research
  4. Suffolkres
    Thread

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    http://www.virology.ws/2019/12/02/trial-by-error-professor-jonathan-edwards-view-of-me/
    Thread by: Suffolkres, Dec 2, 2019, 186 replies, in forum: General ME/CFS news
  5. Suffolkres
    Thread

    Top research priorities in healthcare-associated infection in the UK, 2019, Wilson et al.

    Sent to me by very supportive patient advocate for ME and CFS in Norfolk for nearly 40 years Dr Patrick Thompson ! "There is a mismatch between...
    Thread by: Suffolkres, Nov 29, 2019, 3 replies, in forum: Other health news and research
  6. Suffolkres
    Post

    Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome, 2017, Castro-Marrero et al.

    It's clear I should have read this in more detail!.........
    Post by: Suffolkres, Nov 25, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  7. Suffolkres
    Thread

    Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome, 2017, Castro-Marrero et al.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301046/ Reads rather well
    Thread by: Suffolkres, Nov 24, 2019, 4 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  8. Suffolkres
    Post

    Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

    This is an important questionnaire with data requested by the NICE Guideline development Group and chair Dr. Peter Barry. This request is to...
    Post by: Suffolkres, Nov 16, 2019 in forum: Recruitment into current ME/CFS research studies
  9. Suffolkres
    Post

    Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

    Have capture the questionnaire off the web for pre filling in on line.
    Post by: Suffolkres, Nov 15, 2019 in forum: Recruitment into current ME/CFS research studies
  10. Suffolkres
    Post

    Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

    I know that a paper version to prepare in advance before an upload should exist and should be made available. Most SA are both too physically and...
    Post by: Suffolkres, Nov 15, 2019 in forum: Recruitment into current ME/CFS research studies
  11. Suffolkres
    Post

    ME Association announces three new research grants, Oct 2019

    :hug::hug::hug::hug::hug::hug::hug:
    Post by: Suffolkres, Oct 23, 2019 in forum: ME/CFS research news
  12. Suffolkres
    Post

    Assessment at clinics

    How about an adapted version of the Canadian 'Symptom' scoring chart? It could be used effectively as a kind of audit trail over time. A high...
    Post by: Suffolkres, Oct 14, 2019 in forum: Advocacy Projects and Campaigns
  13. Suffolkres
    Post

    Action for M.E. 2019 AGM and conference 15th October 2019

    Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms. The terms subjective,...
    Post by: Suffolkres, Oct 14, 2019 in forum: General ME/CFS news
  14. Suffolkres
    Post

    Action for ME GP webinars

    Emily also has 'Sharpee Syndrome'....prone to block unwelcome tweets and cannot discuss genuine concerns raised....
    Post by: Suffolkres, Oct 10, 2019 in forum: General ME/CFS news
  15. Suffolkres
    Post

    A potential S4ME project: What are the basic science facts that ME advocates need to know and understand?

    For Advocates, (especially formal or paid ones) surely the first requirement is; Are we talking Advocates or advocates? When dealing with...
    Post by: Suffolkres, Oct 6, 2019 in forum: Advocacy Projects and Campaigns
  16. Suffolkres
    Post

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    :emoji_clap: So sorry to hear of your loss, and sympathies over the pressure you are under; it makes the project all the more special and powerful.
    Post by: Suffolkres, Sep 29, 2019 in forum: Advocacy Projects and Campaigns
  17. Suffolkres
    Post

    How ME/CFS Progresses: A Framework for Research and the Prevention, Treatment, and Rehabilitation in ME/CFS Nacul et al 2019

    1 remember finding this very useful. Carol Sieverling Carol Sieverling of the CFS & FMS Support Group of Dallas-Fort Worth wrote this article...
    Post by: Suffolkres, Sep 27, 2019 in forum: ME/CFS research
  18. Suffolkres
    Post

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    We would be happy to upload these to our GP Training Resource page and material? GP Awareness http://nandsme.blogspot.com/p/blog-page_23.html 1....
    Post by: Suffolkres, Sep 26, 2019 in forum: Advocacy Projects and Campaigns
  19. Suffolkres
    Post

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    Will do. Thanks!
    Post by: Suffolkres, Sep 25, 2019 in forum: Advocacy Projects and Campaigns
  20. Suffolkres
    Post

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    Thanks Natalie. We had an event on the 11th September where ME and CFS training was on the agenda. I heard late in the day from Shelley Mitchell,...
    Post by: Suffolkres, Sep 25, 2019 in forum: Advocacy Projects and Campaigns
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