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  1. J

    DoH research

    I asked the same questions to the MRC. They responded today saying they have now updated their website with that information. It's available here https://mrc.ukri.org/funding/science-areas/population-systems-medicine/our-science-and-contacts-psmb/cfsme/ Under 'MRC-funded research projects'...
  2. J

    DoH research

    1. There may be. I suppose PubMed may be a good place to start. 2. Oops, yes, that was a typo in my request in fact. Oh well, they understood.
  3. J

    DoH research

    Good idea. Here is the question: To ask the Secretary of State for Health and Social Care, how much funding from the public purse he plans to allocate to biomedical research into Myalgic Encephalomyelitis in the current financial year...
  4. J

    DoH research

    I thought it would be interesting to see which studies were included in the spending on ME in Dinenage's reply to Carol Monaghan's written question. I asked: The Answer states the NIH funding by the Biomedical Research Centres and Units was as follows: 2014-15 280,442; 2015-16 295,626; 2016-17...
  5. J

    Documents from the SMILE trial

    I have today received the decision notice rejecting my appeal to the ICO for the release of the data. I shall be appealing to the FTT. For obvious reasons, I don't want to say too much but two things stand out to me: First, the decision says information for school attendance, fatigue and...
  6. J

    What research do you want to see? (study ideas)

    If I may make another suggestion: the poll should not pit one idea against another but should offer members the chance to support more than one idea. Perhaps the question could be more along the lines of 'Do you think this is a good suggestion?' and then a follow-up of 'Should this be be High...
  7. J

    What research do you want to see? (study ideas)

    Thanks, Andy, I thought it likely that something similar had been done before, though I didn't see one in a quick search. I think it would be good if there could be some sort of briefing done for Ponting. I also think it would be worth splitting any survey/poll in two, as responses seem to fit...
  8. J

    What research do you want to see? (study ideas)

    It's interesting what you say, Barry. My experience has been that URT viruses (of which GF is one of course) have been the worst culprits. There is a long history suggesting some sort of connection between GF and ME. I also think that when I was growing up and was told someone had 'chronic GF'...
  9. J

    Article by Paul Worthley

    This is what I find so frustrating. White, Wessely, Chalder, Crawley, etc all take the illness seriously and have found ways to help some people manage the effects of their symptoms. That is not negligible. If only only they'd stopped there then they would have done some good. They have always...
  10. J

    What research do you want to see? (study ideas)

    I would really like to keep this thread to proposed research if possible.
  11. J

    What research do you want to see? (study ideas)

    OK, so what research do you want to see?
  12. J

    What research do you want to see? (study ideas)

    My own suggestion: Current research seems to focus on finding a biomarker: looking at what is going wrong with ME patients and then hoping this will explain the process and in time a way of fixing things Even the best modern techniques do not reveal everything that happens in the body. As...
  13. J

    What research do you want to see? (study ideas)

    This may be done elsewhere on the site, but I thought it would be interesting to see what research patients would like to see. Perhaps if there is enough then we could do some sort of briefing paper with ideas for Chris Ponting.
  14. J

    Article by Paul Worthley

    Hehe. Brilliant.
  15. J

    Article by Paul Worthley

    Yes, that's right. I hate the deceit: 'Yes, your illness is real.' But then we think hysteria is a real illness. 'Yes, it's triggered by a virus.' And by 'trauma' and anything else come to think of it. 'Yes, it's physical and there are physiological changes.' But we're not dualists and...
  16. J

    Article by Paul Worthley

    This was apparently in the @Action for M.E. journal earlier this year. https://www.metrust.org.uk/2018/07/06/article-by-dr-paul-worthley-in-interaction-magazine/ I don't know anything about Worthley or the ME Trust, though I see Countess of Mar is a Patron. It reads to me as very similar to...
  17. J

    Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach

    I don't. As discussed elsewhere, I am not alone in thinking ME is likely more than one illness. I can only then speak for myself, but 'homeostasis out of control' means absolutely nothing to me. The whole article, to me, is utter gibberish.
  18. J

    Understanding the Lightning Process Approach to CFS/ME; a Review of the Disease Process and the Approach

    I have hacked my way though this turgid nonsense. It is quite extraordinarily awful. It reminds me of two things: one is an explanation of acupuncture I once read; the other is the film Europa Europa (1990) and the explanation for racial superiority. Have a false idea and then build a complex...
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