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  1. josepdelafuente
    Post

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    Great, nice one Kitty.
    Post by: josepdelafuente, Feb 9, 2025 in forum: Recruitment into current ME/CFS research studies
  2. josepdelafuente
    Post

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    Ah. Good detective work! Is amifampridine a promising candidate for us? Ironically it looks like I probably can't take part in the trial due to...
    Post by: josepdelafuente, Feb 8, 2025 in forum: Recruitment into current ME/CFS research studies
  3. josepdelafuente
    Post

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    They replied to my email and referred me to this link (the patient information for the trial) -...
    Post by: josepdelafuente, Feb 7, 2025 in forum: Recruitment into current ME/CFS research studies
  4. josepdelafuente
    Post

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    Ok, I've sent an email asking those questions. Will update here if they reply.
    Post by: josepdelafuente, Feb 7, 2025 in forum: Recruitment into current ME/CFS research studies
  5. josepdelafuente
    Post

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    I'm happy to do that, certainly. I'm in a deep crash today so haven't been able to read previous thread posts properly enough to understand if it...
    Post by: josepdelafuente, Feb 7, 2025 in forum: Recruitment into current ME/CFS research studies
  6. josepdelafuente
    Post

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    I'm in the UK, I'm not severe... I could do it. Should I bother?
    Post by: josepdelafuente, Feb 7, 2025 in forum: Recruitment into current ME/CFS research studies
  7. josepdelafuente
    Post

    What are the most interesting ME/CFS-studies of 2024?

    Great post! Thanks so much for doing this work! So valuable
    Post by: josepdelafuente, Jan 1, 2025 in forum: General ME/CFS news
  8. josepdelafuente
    Post

    Article in the i: The long Covid ‘treatments’ to avoid, 2024, Clare Wilson with Garner and Busse

    preach Trish!
    Post by: josepdelafuente, Dec 29, 2024 in forum: Long Covid news
  9. josepdelafuente
    Post

    The Concept of ME/CFS, 2024, Edwards

    I've only just now read Jonathan's piece on Quieos, I think it's fantastic. Super clear and concise. A breath of fresh air. Thanks Jonathan....
    Post by: josepdelafuente, Dec 28, 2024 in forum: ME/CFS research
  10. josepdelafuente
    Post

    Options for genetic testing

    Would this still be your answer now, 5 years on, @Jonathan Edwards ? Or would you say have there now been enough / any advances in research /...
    Post by: josepdelafuente, Dec 27, 2024 in forum: Laboratory and genetic testing, medical imaging
  11. josepdelafuente
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Thanks Andy! Regarding funding - I have nothing specific at all in mind - but is this the kind of project that would be able to receive funding...
    Post by: josepdelafuente, Dec 27, 2024 in forum: ME/CFS research news
  12. josepdelafuente
    Post

    NHS Has a Rare Mitochondrial Disorders Service

    Hi! Was just on this website - https://mitochondrialdisease.nhs.uk/nhs-mitochondrial-services/ I'm pondering if I should try to access this...
    Post by: josepdelafuente, Dec 27, 2024 in forum: Other health news and research
  13. josepdelafuente
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    ok - great! That's good to know... I don't know anything at all about this kind of thing
    Post by: josepdelafuente, Dec 16, 2024 in forum: ME/CFS research news
  14. josepdelafuente
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    I think it says they're looking to raise £7,000,000 (seven million pounds sterling), in the article.
    Post by: josepdelafuente, Dec 16, 2024 in forum: ME/CFS research news
  15. josepdelafuente
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    wow, sounds like amazing news!
    Post by: josepdelafuente, Dec 16, 2024 in forum: ME/CFS research news
  16. josepdelafuente
    Post

    New Video ME/CFS Scandal Explainer

    Amazing work! Thanks so much!
    Post by: josepdelafuente, Nov 21, 2024 in forum: Advocacy Projects and Campaigns
  17. josepdelafuente
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    I feel like "Final Delivery Plan" has a slightly ominous ring to it, as a name! Unintentional I'm sure...
    Post by: josepdelafuente, Nov 8, 2024 in forum: News from organisations
  18. josepdelafuente
    Post

    It never gets easier: the lack of a 'training effect'

    Yes, I definitely experience this or some version of this to some extent! I have given up physical exercise (other than what is essential -...
    Post by: josepdelafuente, Oct 8, 2024 in forum: General and other signs and symptoms
  19. josepdelafuente
    Post

    Impact of Spa Therapy on Symptoms and Quality of Life in Post-COVID-19 Patients with Chronic Conditions, 2024, Maria Costantino et al

    Might also be worth investigating if good things feel pleasant. Controversial I know...
    Post by: josepdelafuente, Sep 17, 2024 in forum: Long Covid research
  20. josepdelafuente
    Post

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 (including PIP consultation)

    I found thinking about the "safely, reliably, repeatedly" part of the PIP regulation really useful for my application - as it can make the...
    Post by: josepdelafuente, Sep 11, 2024 in forum: Work, Finances and Disability Insurance
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