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  1. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    I've noticed this on social media as well. I understand the disappointment. We all want to feel like our experience could count for something and...
    Post by: Tia, Sep 21, 2022 in forum: Recruitment into current ME/CFS research studies
  2. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Thank you for your help @Kitty but unfortunately I tried it and it didn't work. You got to me in time @Andy ! Thank you. I will do that. I didn't...
    Post by: Tia, Sep 19, 2022 in forum: Recruitment into current ME/CFS research studies
  3. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    arg, I've had my survey ready to send off. Logged in to check it and accidentally, stupidly, pressed the back button on my browser :( Oh dear. Do...
    Post by: Tia, Sep 19, 2022 in forum: Recruitment into current ME/CFS research studies
  4. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Just a thought... I was listening to Adam Buxton's podcast this afternoon and I wondered if it would be worth asking him if he'd do a shout-out...
    Post by: Tia, Sep 16, 2022 in forum: Recruitment into current ME/CFS research studies
  5. Tia
    Post

    Letter to BMJ: "Medical gaslighting: to say that invoking psychological symptoms is equivalent to dismissal is reductionist", Michael Sharpe

    100% That's his approach. He likes to make out that we only reject his model of ME because it's psychological when he must know full well that we...
    Post by: Tia, Sep 16, 2022 in forum: Other psychosomatic news and research
  6. Tia
    Thread

    "Scientists hail autoimmune breakthrough" - the Guardian

    I don't know if this has been posted elsewhere but I thought it was very interesting. I wonder if something like this might end up being helpful...
    Thread by: Tia, Sep 15, 2022, 26 replies, in forum: 'Conditions related to ME/CFS' news and research
  7. Tia
    Post

    Blog: New Study Links 14 Genes to ME/CFS

    Very interesting, thanks Simon.
    Post by: Tia, Sep 15, 2022 in forum: ME/CFS research
  8. Tia
    Post

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    Looks good @Simon M , the visual makes it easier to grasp the concept.
    Post by: Tia, Sep 14, 2022 in forum: ME/CFS research
  9. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Thanks @Andy that's really helpful, I'll give it a read.
    Post by: Tia, Sep 13, 2022 in forum: Recruitment into current ME/CFS research studies
  10. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Thanks for clarifying this. The reason it made me pause for thought is that my NHS records contain a lot of personal information that has nothing...
    Post by: Tia, Sep 13, 2022 in forum: Recruitment into current ME/CFS research studies
  11. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    Chris Ponting was brilliant on radio 4! I hope they'll be more radio coverage, I think it's a great way to get the message out there.
    Post by: Tia, Sep 13, 2022 in forum: Recruitment into current ME/CFS research studies
  12. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    @Andy I have a question about the option of sharing data from NHS records. I'd like to clarify what this means - do the team get access to...
    Post by: Tia, Sep 12, 2022 in forum: Recruitment into current ME/CFS research studies
  13. Tia
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    email safely arrived here - very happy to see it!
    Post by: Tia, Sep 12, 2022 in forum: Recruitment into current ME/CFS research studies
  14. Tia
    Post

    JK Rowling new book — chronic illness references

    I can't make a judgement without reading the whole book.
    Post by: Tia, Sep 2, 2022 in forum: General ME/CFS discussion
  15. Tia
    Post

    High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial 2022 Hansen et al

    Yes, the value of ruling things out shouldn't be underestimated. Just on a personal level, if there had been proper trials into all the things...
    Post by: Tia, Aug 3, 2022 in forum: Long Covid research
  16. Tia
    Post

    The Guardian: I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before

    I think he's speaking from a personal perspective rather than a social/political one. As individual patients, we may find it healthier, on a day...
    Post by: Tia, Jul 28, 2022 in forum: General ME/CFS news
  17. Tia
    Post

    CD4+ Cytotoxic T Cells Involved in the Development of EBV-Associated Diseases, 2022, Ruiz-Pablos

    Thank you for sharing this @Manuel , it sounds very interesting. I am not a scientist and don't have the understanding that some people on this...
    Post by: Tia, Jul 27, 2022 in forum: ME/CFS research
  18. Tia
    Post

    The Chrysalis Effect

    I just read this thread on twitter about the chrysalis effect: [MEDIA] There's a tweet that I think is very accurate that says: "Elaine Wilkinson...
    Post by: Tia, Jul 22, 2022 in forum: Psychosomatic theories and treatments discussions
  19. Tia
    Post

    The Chrysalis Effect

    A bit of Linkedin networking from Chrysalis Effect founder Elaine Wilkins:...
    Post by: Tia, Jul 22, 2022 in forum: Psychosomatic theories and treatments discussions
  20. Tia
    Post

    Careers (and job) advice for people with ME/CFS (maybe particularly young people) - a discussion

    I have a couple of friends who are working as lecturers and finding academia very stressful at the moment but that might be UK specific (lack of...
    Post by: Tia, Jul 14, 2022 in forum: Work, Finances and Disability Insurance
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