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  1. Trish

    Long Covid-19 and an effective lightning process intervention: A case study, 2024, Arroll et al.

    This is ridiculous, the patient didn't have long Covid, she had about 7 weeks prolonged recovery from acute covid then got better. Many of the people I know who have had Covid have a similar period of a few weeks or months of symptoms then recover without needing mind body mumbo jumbo. Long...
  2. Trish

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Hi @Nitro802, welcome to the forum. Can you tell us more about the article, such as where you hope to get it published and what particular perspective you intend to take. If you don't want to say more on a public thread you could do an Introduce Yourself thread in the members only area.
  3. Trish

    Preprint Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry, 2024, Pretorius

    It seems like the sort of situation where a next step might usefully be to take fresh blood samples from a restricted population group to enable easy comparison. For example, women with normal BMI, not on any medication, with no co-morbidities, and pre menopause, and as a pilot study take ten...
  4. Trish

    Preprint Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry, 2024, Pretorius

    If the microclots are, as suggested, an artefact of the process and only present in vitro, then the question that needs to be asked is, why are there more microclots formed in plasma of pwLC, an intermediate number in pwME and the least in healthy controls. Is there some factor in the blood that...
  5. Trish

    Alexander technique

    I met someone many years ago with ME who was an Alexander teacher. She moved very carefully and sat and stood very upright, but it made no difference to her ME. I remember reading about it at the time. I gathered it was popular with actors and musicians.
  6. Trish

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I'd like to have been a fly on the wall for that conversation. I hope she gave him both barrels. The idea that someone so sick as Whitney is suffering from faulty 'effort preference' is so abusively insulting.
  7. Trish

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    He may have been invited before the Walitt NIH study was published.
  8. Trish

    Review Is the effect of CBT for CFS moderated by the presence of comorbid depressive symptoms? A meta-analysis of three treatment delivery formats, 2024,Kuut

    The BDI-PC is a 7 item questionnaire with each item rated on a 4 point scale (0–3). It is scored by summing ratings for each item (range 0–21). Items are symptoms of sadness, pessimism, past failure, loss of pleasure, self dislike, self criticalness, and suicidal thoughts and wishes.
  9. Trish

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Hmm. I started reading but gave up. It seems to be a hypothesis from a non scientist based on cobbling together anecdotes, blogs by other non scientists, and the odd bit of poor quality research and untested hypotheses.
  10. Trish

    Hairstylists Have Always Been Mental Health Caretakers. Now, They’re Being Trained for It

    If the training is in the form of 'be a good listener, don't argue with or offer advice on how people manage their lives, and have a pile of leaflets available with links to reputable sources of support, that's fine. Any more seems to me inappropriate.
  11. Trish

    A Syndrome in Search of a Virus - ME/CFS, Disease Paradigms, and the Social Function of Pathogens, Emily Lim Rogers, 2024

    I don't remember coming across this author before. She has written other articles and done talks on the subject. Since I can only read the abstract and book description that's full of jargon, I can’t fathom her views or conclusions. It looks like the book will be based on her PhD thesis.
  12. Trish

    UK: Physios for ME

    Wow, you have achieved so much good work in your first 5 years. What a team. :trophy@Thank you.
  13. Trish

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    I think that's important. Single time point or single day upright and activity is not necessarily an indicator of health on that day, it needs to be combined with symptom severity and plotted over time to see what patterns emerge.
  14. Trish

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    Do you mean financial incentives? I'm not sure what you are saying here. If we all worked on fundraising for research instead of using our energy to discuss research here, who would be here to discuss the research with the scientists when they get the funds and come to find us? I see part of...
  15. Trish

    Trial Report Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With [ME/CFS], 2024, Sjogren, Bragée, Britton.

    That seems like cheating. They should report the overall figure, not cherry pick the one piece of data for those who did better that looks impressive.
  16. Trish

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    I strongly disagree with the suggestion that patients should not be discussing the details of scientific research and should devote our energies instead to fundraising to pay the real scientists to do the research. Of course we need more funds for research, but that doesn't preclude patient...
  17. Trish

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    I was also going to suggest time upright as a daily measure, ideally captured automatically with a wearable if possible. I think for 'in the moment', eg hour by hour or several times a day recording it's only feasible to use wearable data (HR, HRV, steps/motion, time upright) and 2 or 3...
  18. Trish

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    I fainted a few times as a child and young adult before ME/CFS, but the cause was identifiable, eg standing too long in hot weather, severe pain (period pain) and having needles stuck in me. These are still true since I got ME, though obviously not period pain any more, as I'm 74. That is...
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