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  1. forestglip

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    Glancing at it right now. Yes this is why I am confused by the 'enduring symptoms' or 'symptom-based disorders' terms: The definition in Katharine's paper seems like it would include basically any chronic symptoms that aren't yet understood (i.e. would have included MS and Parkinson's in 1830...
  2. forestglip

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    Didn't he just get funding for dextro a few weeks ago? Would have been really fast to have a protocol registered already, right? I assume that'll start after some time. Seems like a good thing to have a dose-response study on LDN finally, even if unblinded. (Edit: doses are blinded)
  3. forestglip

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    I added this edit to a post above just now: Maybe someone can come up with one good reference that could be used for one good sentence. Trying to write an example - the first sentence is from the conclusion, and I added the second.
  4. forestglip

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    Isn't the latter a much bigger task that requires evidence that would be hard to fit inside an article of this length? The former is recounting symptoms from patients. The latter requires evidence of causality. What specific kinds of things would you have preferred to be included? Quotes from...
  5. forestglip

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    I don't think I was clear. My point was the term, as defined, should technically include basically any disease mechanism that science is still not able to describe. But the term still 'feels' like it's describing some specific group with a hypothesized mechanism that is basically FND, and so...
  6. forestglip

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    But before that. People still had the symptoms, but no one knew to look at a specific thing in the brain. It'd just be 'enduring symptoms', and then one day, they see the neuron damage, and it becomes a disease with a specific mechanism. My point is that all the uncharacterized 'enduring...
  7. forestglip

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    Thank you so much @kacheston for engaging. On the 'enduring symptoms' terminology - it feels odd to me since it's a new term I haven't seen, but if you were required to use it, I guess you had to. I can see how maybe it could be interpreted by people who want to interpret it this way as "those...
  8. forestglip

    Running FLAMES on DecodeME data

    MAGMA has it for download under the reference section for European: https://cncr.nl/research/magma/ I have no idea if it's the same format as what you'd need for the finemapping part.
  9. forestglip

    Running FLAMES on DecodeME data

    Yeah, I'm not sure of the size. Maybe that's raw individual data while all you'd need is more of a summary format. It just seemed like you might need to apply as a researcher to get access to UKB data. But it's possible there's some source out there we didn't see.
  10. forestglip

    Miscellaneous Research Thread

    Posts about a drug trial in the STIMULATE-ICP project have been moved to: STIMULATE-ICP: A pragmatic, multi-centre, cluster randomised trial of an integrated care pathway with a nested, Phase III, open label, adaptive platform randomised drug trial in individuals with Long COVID: A structured...
  11. forestglip

    STIMULATE-ICP: [...] Phase III, open label, adaptive platform randomised drug trial in [LC]: [Protocol], 2023, Forshaw et al

    Here's the abstract: STIMULATE-ICP: A pragmatic, multi-centre, cluster randomised trial of an integrated care pathway with a nested, Phase III, open label, adaptive platform randomised drug trial in individuals with Long COVID: A structured protocol [Line breaks added] Introduction Long...
  12. forestglip

    Opinion To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! 2025 Lubell

    I made a thread to dicuss this other paper: Connecting the Dots Between ME/CFS, HSD/hEDS, Abnormal Fascia, Lymphatic and Glymphatic System Impairment, and Craniocervical Instability, 2025, Lubel
  13. forestglip

    Preprint Connecting the Dots Between ME/CFS, HSD/hEDS, Abnormal Fascia, Lymphatic and Glymphatic System Impairment, and Craniocervical Instability, 2025, Lubel

    Connecting the Dots Between ME/CFS, HSD/hEDS, Abnormal Fascia, Lymphatic and Glymphatic System Impairment, and Craniocervical Instability Lubell, Jeffrey Abstract This hypothesis paper encourages a comprehensive approach to studying Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)...
  14. forestglip

    STIMULATE-ICP: [...] Phase III, open label, adaptive platform randomised drug trial in [LC]: [Protocol], 2023, Forshaw et al

    Thanks @Nightsong. If anyone's interested, here's a 51 minute talk from Emma Wall from earlier this year:
  15. forestglip

    STIMULATE-ICP: [...] Phase III, open label, adaptive platform randomised drug trial in [LC]: [Protocol], 2023, Forshaw et al

    See post #8 for abstract -------- Nature Medicine: "Eleven clinical trials that will shape medicine in 2026" "Nature Medicine asks leading researchers to name their top clinical trial for 2026, from long-awaited vaccines for infectious diseases to new treatments for advanced cancers and long...
  16. forestglip

    Running FLAMES on DecodeME data

    BioBank would be ideal, since it more closely matches the participants. But 1000G still worked well enough to get relatively the same results when I used it in FUMA the first time, mostly just less significant. I don't think @hotblack and I ended up finding a source for UKB LD files when trying...
  17. forestglip

    Running FLAMES on DecodeME data

    I don't think I tried fine mapping at all. That's about where I gave up trying to do FLAMES. (Edit: I don't think I did pops either actually.)
  18. forestglip

    [Abstract] Desentangling the [LC] biomarker network: Insights into viral persistence and therapeutic response using random forest [...], 2025,Sanson+

    The link still seems to work for me. This came up in Google Scholar alerts and can be seen in search results, but it links to the same thing.
  19. forestglip

    United Kingdom: ME Association governance issues

    Interesting and refreshingly self-aware. Some patients. But other forums are filled with people who think the treatment is in the next supplement. Or people who don't read about ME/CFS every day like us. They got sick, the doctor says there's a name for it, and they expect the doctor to do...
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