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  1. V.R.T.

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Worsened hangovers at 19 were one of the first signs along with insomnia and DPDR that something wasn't right with me. When I got full ME/CFS seven years later the hangovers became even worse and I noticed feeling drunker with less alcohol although I was trying to cut down a lot on drinking at...
  2. V.R.T.

    British Association for Counselling and Psychotherapy 'Letter to the Ed' by Emma Hampson

    The current situation in terms of who has the power to shape care and public understanding is not 'balanced' in the slightest. It is weighted almost entirely towards what is the MECFS equivalent of climate change denial. The idea that we should be 'fair' by giving equal standing to the people...
  3. V.R.T.

    Trial By Error: 'An Essay on Living with Severe ME'

    'It’s true that the psychiatrists who hijacked this friendless disease decades ago weren’t using psychiatry to claim that ME isn’t “real”. They were, on the contrary, using ME to try and emphasise that psychiatry is real – “Look how properly actually sick your delusions have made you!” They’ve...
  4. V.R.T.

    Why ME/CFS and Long COVID Activism in Germany Has Been Relatively Successful - blog, 2026, Strottman

    I wonder if something like the beds protests would work here. We have so many questions being asked about ME/LC now in parliament. If there was a similar way to turn up the heat on those with their hands on the purse strings by increasing visibility, especially if the demand was simply fund...
  5. V.R.T.

    Protocol Trial registration: Low-dose Naltrexone for Post-COVID Fatigue Syndrome, 2022, Luis Nacul, British Columbia Women's Hospital & Health Centre

    Posts moved from thread: The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN) It looks like the Canadian one is six months past it's estimated completion date. I wonder why the silence.
  6. V.R.T.

    Psychological symptoms predict long coronavirus disease 2019: a prospective analysis from the Women’s Health Initiative, 2026, Al-Delaimy et al.

    How many people like me were dxed with depression and GAD pre ME/CFS? Anxiety is as bad a name for the DPDR and crippling panic attacks I experienced as chronic fatigue syndrome is for MECFS. As I've said before, I suspect my pre onset symtoms may have been a prodromal or very mild form of...
  7. V.R.T.

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    Me too. Or if either or the combination does turn out to do anything, so I can try it knowing that I'm not just risking nasty side effects and possible deterioation for nothing.
  8. V.R.T.

    Everything is in The Vagus Nerve: What is The Relationship Between Chronic Fatigue Syndrome (CFS) and Coronavirus?, 2020, Selma

    Was this in fibromyalgia? And can you say more or is this unpublished work you can't discuss?
  9. V.R.T.

    Activation of the Lectin Pathway Drives Persistent Complement Dysregulation in Long COVID, 2026, Keat et al.

    All I know about this research group is what JE said about Paul Morgan here:
  10. V.R.T.

    Activation of the Lectin Pathway Drives Persistent Complement Dysregulation in Long COVID, 2026, Keat et al.

    @Jonathan Edwards this is another study from Paul Morgan's group.
  11. V.R.T.

    Activation of the Lectin Pathway Drives Persistent Complement Dysregulation in Long COVID, 2026, Keat et al.

    Abstract looks interesting, decent number of participants. Interested what people think.
  12. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Noting the reservations in the above posts (really hoping the responses aren't flukes, at least! ) If the responses and nk data are indeed real I would still have thought that occams razor would suggest that the separation is due to drug action. Do we have data on how patients with other...
  13. V.R.T.

    Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

    Yes. Someone who would go to this length to prevent any criticism of PACE being published might not much like the idea of biomedical research funding...
  14. V.R.T.

    Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

    The fact that Wessely is still acting like this behind the scenes in 2026 while proclaiming to be retired from ME research is disgraceful. This is why I get angry when people downplay his role in this and turn their nose up at attempts to expose him.
  15. V.R.T.

    The Concept of ME/CFS

    Any idea when we'll see your age of incidence paper? I'm really interested to read it.
  16. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    That makes me think there's more of a chance the NK thing is about drug effect than a marker of subgroups or something mechanistic. If those numbers in non responders are really low and dara needs NK cells to work surely the simplest conclusion is that dara just isn't effective when NK cells are...
  17. V.R.T.

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    One of the responders had ME/CFS for 35 years iirc so it's unlikely she was under 40. Also I don't think the NK threshold for response, if real, was particularly high for the average population, I seem to remember non responder counts were particularly low. But I could be misremembering.
  18. V.R.T.

    There aren’t any answers, we are looking for them and will support you until we find them

    Surely while 'the answers' implies an answer biomedically, 'the solution' implies a solution to the biomedical/treatment issue AND the care and support crisis, therefore negating the need for a forth line? I understand the need to get something about care in there but if the purpose is to draw...
  19. V.R.T.

    There aren’t any answers, we are looking for them and will support you until we find them

    If as Chris Ponting has talked about, a GWAS was actually done 15 years ago, and findings properly followed up on, we might all be living very different lives.
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