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  1. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    The FND GWAs had 22000 participants and had 3 hits across 2 different conditions. DecodeME had 15000 and 8 hits. DecodeME gives the impression of being more on target. In the FND study, two of the hits seemed potentially relevant to neurological illness. It's a shame that the research is...
  2. Hoopoe

    Genetics: HLA-DQA*05:01

    That strikes me as unintuitive. ME/CFS is triggered by a variety of pathogens and my intuition tells me that while specific genetic vulnerabilities for ME/CFS would certainly exist for each of these pathogens, they wouldn't be among the top hits in a GWAS. Variants related to disease process...
  3. Hoopoe

    Genetics: HLA-DQA*05:01

    The genetic findings and the lack of autoantibodies seem to say that roughly the following might be occurring: An immune response against pathogens leads to the side effect of a non-antibody mediated immune attack against the brain. Presumably parts of the brain that are especially involved in...
  4. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    You want to know if it would make sense to study ME/CFS in certain geographic regions? My understanding is that it would not make sense. ME/CFS is not a disease caused by mutations in a single gene. The variants identified in DecodeME are very common in the population and their effect on the...
  5. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    I have mixed feelings about the results. I'm happy that a big step forward has occurred, but the results are merely a hint where to look more in detail. We're still far away from a diagnostic test, understanding the disease and treatment. At least we can call it disease now, and the results seem...
  6. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Can mildly excessive mitophagy promote metabolic inflexibility by removing mitochondria that might perform a little worse under optimal conditions but better in certain specific situations?
  7. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    FBXL4 regulates mitophagy, which is a process where surplus, aged or damaged mitochondria are degraded. When FBXL4 is absent, the levels of BNIP3 and NIX raise and hyperactive mitophagy results. Loss-of-function mutations in FBXL4 are known to cause mitochondrial DNA depletion syndrome 13. In...
  8. Hoopoe

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    I have 3 of the 8 SNPs, in RABGAP1L, CCPG1, CA10. I'm not sure what this means. I can't find information on how common these SNPs are to get an idea of whether I have more of these SNPs than expected by chance or not. Presumably these are fairly common ones. I'm going to try and look the...
  9. Hoopoe

    DecodeME in the media

    It's not available for people accessing it from outside a specific geographical region.
  10. Hoopoe

    Closed UK: DecodeME updates, was recruitment thread.

    I'm not sure if I should be preparing for a little celebration or disappointment.
  11. Hoopoe

    Somatic symptom and related disorders: Guidance on assessment and management for paediatric health care providers 2025 Saunders et al

    Why is the narrative of somatization (or similar concepts) necessary to shift the focus away from unnecessary testing and procedures towards rehabilitative care therapies and providing support to patients? Why can't we just say that we don't know what illness the patient has and how to treat it...
  12. Hoopoe

    Closed UK: DecodeME updates, was recruitment thread.

    @Andy can you say if there are any hits that are statistically significant?
  13. Hoopoe

    Steroid dynamics in myalgic encephalomyelitis / chronic fatigue syndrome: a case-control study [...], 2025, Thomas, Armstrong, Bergquist et al

    I agree that it's really annoying that so many people have negative attitudes towards ME/CFS patients, but I don't think we should be trying to change their views. They will use anything against us, and if there's nothing, they will just make something up... because they simply don't want to...
  14. Hoopoe

    What would successful brainstorming about ME/CFS genes look like?

    It has been suggested that ME/CFS involves genes responsible for neurodevelopment (shared genetic risk factors with autism). It has also been reported that age of onset of ME/CFS has a peak around 15 years. I'm curious about the relationship between this onset peak and the genetic risk factors...
  15. Hoopoe

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    From what I remember, there were many papers on this. There was a small reduction in risk in some studies, in others there was no difference.
  16. Hoopoe

    Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to [CFS] and Long COVID-19 sera, 2025, Mughal+

    How difficult would it be to get an estimate of the size of the serum factors responsible for these effects? How would a researcher try to find out what in the serum is causing the effects? Is it possible that the effects are due to something important missing, rather than something harmful...
  17. Hoopoe

    3 basic reasons why people with ME/CFS can’t be as “academically productive” (learn as much in an academic year) as they could be before the illness

    Society makes no effort to design systems that are compatible with energy-limiting conditions. The medical system has positioned itself as gatekeeper determining who is disabled and this is also part of the problem. It can take years to receive a diagnosis and recognition of disability...
  18. Hoopoe

    Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to [CFS] and Long COVID-19 sera, 2025, Mughal+

    Figure 1 shows some abnormalities with a very good separation of controls and patients. This could be promising. The idea that upon exposure to patient serum, cells can mount an initially successful compensation in response to some signal, which is later followed by dysfunction might explain...
  19. Hoopoe

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    I can also get depressive mood during PEM but it seems to depend on the cause. If the overexertion was mental, PEM can be accompanied by feelings of hopelessness, despair, negativity out of proportion, etc. If the overexertion was mainly due to physical activity, mood can be normal. This change...
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