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

Open UK: Research on how young adults (aged 16-24) with ME/CFS talk about their identity (Emma Williams, Final year trainee counselling psychologist)

Discussion in 'Recruitment into current ME/CFS research studies' started by Dolphin, Jul 18, 2022.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    4,990
    Missense, Hutan, shak8 and 1 other person like this.
  2. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    3,823
    Location:
    Australia
    I know some people are going to criticise the project, but it is worth researching - I still don't have a defined/comfortable identity and I was ill before I was 16.
     
    bobbler, FMMM1, rainy and 11 others like this.
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    I agree this is an important topic. I was in my 30s when my ME started and I had completed my education, had a career and developed a friendship circle. I am very grateful for the opportunities I had pre ME and know how different I would have been as a person had my onset been significantly earlier.

    However, without more information it is hard to know if such research would progress our understanding and management of ME or cause more problems for young people with ME. It depends very much on the researcher. This reads potentially positive, but I delayed commenting in the hope that someone might know more.
     
  4. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,735
    Location:
    UK
    Her later tweets don't sound v encouraging.

    Emma Williams - UoM ME/CFS researcher
    @MECFSatUoM

    ·
    17 Jul

    Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome or ME/CFS, is chronic, fluctuating condition with a wide range of symptoms. The most common symptom is extreme tiredness ME/CFS affects the individual's ability to recover after expending energy (even a small amount)

    Hi, I'm Emma, a final year counselling psychology student conducting research into ME/CFS in young adults. Am super passionate about ME/CFS and have the privilege of working with individuals with ME/CFS day-to-day in the NHS
     
  5. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
  6. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    There's a nice tweet in reply by Anil noting that ME/CFS is not chronic fatigue. Can someone invite Emma here? She clearly means well, but could use some more information (especially given she works 'day-to-day' with people with ME/CFS in the NHS).
     
    Lilas, bobbler, rainy and 9 others like this.
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    @Joan Crawford posted the following to the Sheffield ME and Fibromyalgia Group’s Facebook page:

    See https://www.facebook.com/groups/1463401580612062 (Sorry I could not work out how to link to the post itself, so you need to scroll down to a couple of days ago on the group page. Emma William’s contact details are in the original post.)

    [edited to remove Emma William’s email and phone number because I was not sure if it is appropriate for me to share it]
     
    Last edited: Jul 21, 2022
    shak8, MEMarge, Joan Crawford and 5 others like this.
  8. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

    Messages:
    547
    Location:
    Warton, Carnforth, Lancs, UK
    Hi Hutan,
    I've been in touch with her and chatted with her about her work. I have mentioned this forum along with sources of history etc.
    Bw
    Joan
     
    Lilas, bobbler, FMMM1 and 10 others like this.
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    NelliePledge, bobbler, FMMM1 and 5 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK

Share This Page