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  1. V.R.T.

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    This is the hard truth of the matter. If we want to stem the biobabble coming out of charities and other advocates great, that could help. If we want to claim patients who are good and don't say the 'wrong' things to doctors won't get mistreated I think that is seriously naive and, from personal...
  2. V.R.T.

    Mitochondria-localised ZNFX1 functions as a dsRNA sensor to initiate antiviral responses through MAVS, 2019, Wang et al

    It really seems like there is a solid theoretical basis for your hypothesis. obviously I am a layman but it seems that there are many ways it could fit with the evidence we have - can you share anything about how your hunt for muscle samples is going?
  3. V.R.T.

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    What could increased expression in the pancreas mean?
  4. V.R.T.

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    I had this paper from yesterday in mind when posting
  5. V.R.T.

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    Ah, my mistake, apologies for flooding the thread with irrelevant speculation then!
  6. V.R.T.

    Open Germany, Greece, Italy, Spain: Safety and Efficacy of Anakinra Treatment for Patients With Post Acute Covid Syndrome (PRECISION)

    Just caught this
  7. V.R.T.

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    Ongoing clinical trial of an IL-1 inhibitor in Long Covid: Derya Unutmaz reports an N=1 improvement from Ankinra (suggested by Grok, of all things [not an endorsement by me]):
  8. V.R.T.

    Hypermethylation of OPRM1: Deregulation of Endogenous Opioid Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia, 2025, Wyns

    Could something like this account for any part of the core symptoms of MECFS? And/or contribute to an immune-brain signalling loop?
  9. V.R.T.

    The human disease-associated gene ZNFX1 controls inflammation through inhibition of the NLRP3 inflammasome, 2024, Huang et al

    From Wikipedia: IL-1β, in combination with IL-23, induced expression of IL-17, IL-21 and IL-22 by γδ T cells. This induction of expression is in the absence of additional signals. That suggests IL-1β is involved in modulation of autoimmune inflammation [15] A link to gamma delta T cells -...
  10. V.R.T.

    Severe people may hold answers to Long COVID. They must be included in research. (The Sick Times)

    This is really important and should be campaigned on more. I'd not heard of the phrase extreme phenotype strategy but the principle is common sense and it is shocking that more studies don't focus on the severe. It may be that signals only transiently visible in mild pwME are more often or even...
  11. V.R.T.

    Severe people may hold answers to Long COVID. They must be included in research. (The Sick Times)

    The sickest thing about ME/CFS is that the illest people are often the people who took all the bullshit advice and declined badly from it. Then they are held up as examples of 'people who didn't take the advice because deep down they don't want to recover'.
  12. V.R.T.

    The NLRP3 inflammasome as a key pathway in the affective and chronic fatigue symptoms of Long COVID, 2026, Zhang et al.

    If that's the case it could be something interesting.
  13. V.R.T.

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    I have a friend with Hashimotos. She has fatigue and struggles with it but works a full time job, exercises, and has a full social life. That isn't PEM. PEM stopped me from having those things when my ME/CFS was mild. I think a lot of autoimmune fatigue is similar.
  14. V.R.T.

    The NLRP3 inflammasome as a key pathway in the affective and chronic fatigue symptoms of Long COVID, 2026, Zhang et al.

    What even is long covid if they excluded people with MECFS though? Or is it just pre existing ME?
  15. V.R.T.

    The NLRP3 inflammasome as a key pathway in the affective and chronic fatigue symptoms of Long COVID, 2026, Zhang et al.

    :banghead::banghead::banghead::banghead:
  16. V.R.T.

    UK House of Lords/ House of Commons - relevant people and questions

    This is good but we need MPs to stand up and ask them to fund SequenceME. Specifically and repeatedly.
  17. V.R.T.

    UK House of Lords/ House of Commons - relevant people and questions

    It's mind boggling that they could be getting so many questions in parliament about this for so long and just keep pretending everything is fine in their replies. It reminds me of that meme of the cartoon dog in the burning house.
  18. V.R.T.

    Australia: New network to support ‘often misunderstood’ conditions

    If only a handful of people recover then the treatments don't work. How can trained professionals not see this? It's cult-like.
  19. V.R.T.

    A distinct monocyte transcriptional state links systemic immune dysregulation to pulmonary impairment in long COVID, 2026, Kumar et al

    TGF-B has been found to be higher in ME/CFS right? Also it says they found HLA DQ was highly expressed in pwLC in the flow cytometry test
  20. V.R.T.

    A distinct monocyte transcriptional state links systemic immune dysregulation to pulmonary impairment in long COVID, 2026, Kumar et al

    Does anyone have any more information about this study? It looks like the summary article is paywalled.
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