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  1. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    I thought it was pretty good, though I get fed up with presenters who interrupt people in the middle of saying something significant with another question. There were a couple of times when I think that led to good points not being able to be completed.
  2. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Daily mail article is based on the Good Morning Britain TV interview with Sarah Boothby and Charles Shepherd.
  3. Trish

    Dr Avindra Nath, NIH USA, views on ME/CFS and Long Covid

    I don't suppose most people at NIH have any thoughts at all about ME/CFS, and are happy to leave it to Nath and WalItt. If it's those 2 running NIH in- house research, I'd be glad they are not going to continue to research ME/CFS. They have done too much harm already. I just hope this doesn't...
  4. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    That's fantastic to see they have given so much space in the print edition. These are the 3 online articles we've seen this week, which may be the same articles with different headlines. The Guardian Devon woman died from malnutrition due to severe ME, coroner concludes The Guardian What is ME...
  5. Trish

    Writers needed to debunk pseudoscience—paid

    I would want to know more about the project before taking them up on this. The subtext on the website is about sex and gender, and may be a disguised project with a particular ideological standpoint nothing to do with science. As we are all too aware from ME/CFS issues, data can be found that...
  6. Trish

    How do you recover from the trauma of systemic disbelief?

    I think if you can find a good counsellor their training should mean they don't make judgements about your physical or mental health or try to change you according to some psychological theory. Rather their role is to be a good listener who provides a safe space for you to explore your thoughts...
  7. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Good Guardian article today: I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions Tells Maeve's story with quotes from her diary, her parents, David Strain and Sonya Chowdhury.
  8. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Members only thread here.
  9. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    I think it's probably too early to see what good will flow from this situation. Another thread would just split the discussion. If you want a brief view of what has happened so far, maybe look at the summaries in the News in Brief, and read the main articles linked there, including David...
  10. Trish

    Thesis Investigation of the Gut Microbiome and Host Metabolome in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Jaa-Kwee

    I've only read the abstract. This seems to suggest nothing of note was found.
  11. Trish

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thanks, Binkie4. I think you may be reading too much into Cochrane's reply. It came only an hour or so after our email being sent, and is just a standard acknowledgement presumably from an office person. We have yet to see whether we get substantive responses to anything.
  12. Trish

    Well-known, famous people with Covid-19 and Long Covid

    You beat me to it. I watched it too. He seemed to be pointing to his chest as the problem area. I find it concerning that sports people are being allowed to compete in very strenuous sports when positive, not only because it may contribute to going on to develop Long Covid, or possible...
  13. Trish

    Severe ME Awareness Day 2024 CPD course

    I also hesitated over that, but it didn't say the child had Covid, just an infection. And he clearly fitted NICE guideline ME/CFS diagnostic criteria. Of course he could have both LC and ME/CFS.
  14. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    From the above quote: I assume this is based on the effort preference nonsense in the Walitt paper. And so the harm goes on.
  15. Trish

    Too much focus on your health might be bad for your health: Reddit user’s communication style predicts their Long COVID likelihood, 2024, Segneri+

    We are aware of this issue. When we updated our forum rules recently we added a rule that permission will not be given to use any part of the forum as source material for research. We also made a copy of the rules public, so there is no excuse for researchers not being aware of this rule...
  16. Trish

    Severe ME Awareness Day 2024 CPD course

    I did the 5 questions and of course scored 5/5. It presents a single case of a child who gets ME/CFS aged 13 and takes you through a series of scenarios as he reaches adulthood. I think it's pretty good, if taken seriously it shows how best to treat someone and asks what should be done in each...
  17. Trish

    Too much focus on your health might be bad for your health: Reddit user’s communication style predicts their Long COVID likelihood, 2024, Segneri+

    Could it be something as simple as those who go to Reddit to discuss their psychological and health issues will be open about their long covid, whereas those who opt not to discuss such personal health issues on Reddit will continue not doing so when they get long covid? I agree this research...
  18. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    That brief comment is ambiguous. It could be read as raising the issue that people with total allergy syndrome have similar difficulties with medical care. I don't think we have any way of knowing what the writer meant.
  19. Trish

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Posts discussing names for ME/CFS have been moved to: Diagnosis of ME and the use of the labels ME and CFS.
  20. Trish

    Sex bias in pain management

    The thing that surprised me in this article was not the stuff about pain, which I have seen before, but the bit about women being made to wait longer in emergency departments.
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