Search results

  1. Nightsong

    ME/CFS Skeptic - How many scientific papers are fake?

    Interesting article in Nature News: Low-quality papers based on public health data are flooding the scientific literature The preprint the article is based on specifically mentions the "concerning trends" regarding "works poorly employing two-sample Mendelian randomization applied to openly...
  2. Nightsong

    Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

    An associated commentary by Komaroff in PNAS ("Growing recognition of post-acute infection syndromes"): Link | PDF
  3. Nightsong

    United Kingdom: ME Association news

    That MEA article has nothing to do with apps or Elaros or this [the Elaros] thread. It's a direct response to the claims made about the MEA in the recent, dreadful, "chronicity rhetoric" paper. The extracts are direct quotes from that paper - CS is just illustrating what he's responding to...
  4. Nightsong

    Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit et al

    Surprisingly, MEA have commented on this: https://meassociation.org.uk/2025/07/mea-defends-how-we-raise-money-for-research-how-we-spend-it-and-our-position-on-referring-unproven-claims-about-recovery-programmes-to-the-regulatory-authorities/
  5. Nightsong

    Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit et al

    What is sad about this is that neutral ethnographic research would have been a valuable contribution. We only really have occasional anecdotal patient reports as to what goes on in these clinics. If the authors had simply recorded what was being done and reported on it - or, even better, if they...
  6. Nightsong

    "The impact of leading questions on ME/CFS research: bias and stigma in study design", 2025, Jason et al

    This is actually a rather interesting study. Using the question "What do you think is the cause of your problem with fatigue/energy?" - an open, neutral question - as a baseline showed that patients viewed their illness as overwhelmingly physically driven. But when patients were prompted with a...
  7. Nightsong

    Review (Hungary) Interdisciplinary consensus statement about the diagnosis and treatment of [CFS]/myalgic encephalomyelopathy, 2025, Simonyi et al

    A strongly worded letter from JE, and a really good result: Once again, we appreciate that you have "cleared up" what appeared to be a misrepresentation of our inadequate wording with your articulate and convincing argument. We clearly accept your findings and thank you. Hopefully the authors...
  8. Nightsong

    Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit et al

    Two more thoughts: To what extent is it appropriate, in a supposedly scientific paper, to give your "informants" space to complain about an organisation - the MEA - that has nothing to do with the subject of your paper (supposedly fibromyalgia)? I haven't heard of any research team doing this...
  9. Nightsong

    Comparing DNA Methylation Landscapes in Peripheral Blood from [ME/CFS] and Long COVID Patients, 2025, Peppercorn et al

    Now published in Int. J. Mol. Sci. - https://www.mdpi.com/1422-0067/26/14/6631
  10. Nightsong

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    NIHR: "The Efficacy and Mechanism Evaluation (EME) Programme is accepting full applications for research looking into the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."...
  11. Nightsong

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I was rather curious that the papers recommended to be cited (!) by Dr Conti appeared in the same obscure journal by the same obscure Italian publisher, "Biolife", with which it appears that he is closely associated. A couple of searches led me to these articles concerning Biolife...
  12. Nightsong

    ME/CFS Springer Protocols

    MedicalXpress article about the ME/CFS Springer Protocol: https://medicalxpress.com/news/2025-07-myalgic-encephalomyelitis-major.html
  13. Nightsong

    ME/CFS Skeptic - How many scientific papers are fake?

    From an interesting letter in the BMJ: Link
  14. Nightsong

    News from Canada

    The Sick Times has a story on the "contradictory" and "deeply concerning" Canadian LC guidelines: https://thesicktimes.org/2025/07/08/experts-call-new-canadian-long-covid-guidelines-contradictory-and-deeply-concerning/ Includes some FOIed emails from Paul Garner, who was trying to influence...
  15. Nightsong

    SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis, 2025, Moreau, Fluge, Mella et al

    Abstract: Background Sphingomyelin phosphodiesterase acid-like 3B (SMPDL3B) is emerging as a potential biomarker and therapeutic target in myalgic encephalomyelitis (ME), a complex multisystem disorder characterized by immune dysfunction, metabolic disturbances, and persistent fatigue. This...
  16. Nightsong

    What resources exist worldwide that hold genetic data on people with ME/CFS?

    This paper: https://pmc.ncbi.nlm.nih.gov/articles/PMC11853495/pdf/12879_2024_Article_10238.pdf describes the use of genetic data from Geisinger MyCode (part of an American EHC; CFS defined as ICD-9 780.71 or ICD-10-CMR53.82).
  17. Nightsong

    NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

    I think it would be worth an attempt to try to have the CKS improved. NICE clearly made an effort to create a balance with the composition of the the ME/CFS guideline committee membership, and the result was essentially a compromise between the psychobehaviouralists and those on the committee...
  18. Nightsong

    NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

    The full CKS guide is on NICE's website: https://www.nice.org.uk/media/default/About/what-we-do/Evidence%20Services/CKS/CKS-guide.pdf
Back
Top