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  1. InitialConditions

    The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’, 2020, Crawley

    It seems Crawley is churning out more and more of this non-quantitative social sciences garbage - the type of stuff you get from humanities academics. You can tell from the title alone with that silly quote.
  2. InitialConditions

    Research news from Bhupesh Prusty

    Again, I'm not sure why putting forward these grand theories is helpful. It's simply a vague hypothesis that links various strands of ME/CFS research.
  3. InitialConditions

    Research news from Bhupesh Prusty

    Yes, he seems genuine, but I'm concerned in the way he is going about engagning with patients. Even annecodtal data/evidence is best collected in an appropriate manner.
  4. InitialConditions

    Research news from Bhupesh Prusty

    Yes, I think that's perhaps what he means. I'm not sure Twitter is the best approach for anyone. If he really wants to engage with patients, could he not be invited to join the forum?
  5. InitialConditions

    Research news from Bhupesh Prusty

    Yes - I think this is what is implied. I'm really not following what he's trying to say. Thought maybe I've missed something.
  6. InitialConditions

    Research news from Bhupesh Prusty

    I was going to start a new thread but I'll post here instead as my comments concern Bhupesh's tweets. Though I am happy for this to become a new thread. Dr. Prusty is clearly exploring engaging with patients over Twitter but some of his tweets have left me confused. First, I'm not sure what is...
  7. InitialConditions

    Low-dose Naltrexone articles and experiences

    Maybe @Dechi - if they so wish - could give us an update a year after the LDN trial?
  8. InitialConditions

    Low-dose Naltrexone articles and experiences

    My feeling with most interventions is that you need to give it at least a month, and probably two months. The problem with LDN is that you'll be told if you have no improvements that the dose is too high, or possibly that the dose is too low! As you are probably aware, the idea is to work up...
  9. InitialConditions

    Low-dose Naltrexone articles and experiences

    You might find this FB group helpful: https://www.facebook.com/groups/200010163370187 My personal experience was that it had little effect, apart from maybe affecting my dreams. I was not on it long enough though, so may give it another try. My feeling is there is a lot of very persuasive...
  10. InitialConditions

    ME Action: The EU committee on petition is preparing a resolution on ME

    I just went to look for my MEPs and then realised we are no longer in the EU. I had forgotten. It's been that sort of year.
  11. InitialConditions

    In progress: A systematic review & meta analysis of the incidence of, and risk markers for, [CFS] and [ME] in population studies, 2020, White

    Here is a presentation by Francis Creed that has been uploaded onto the dxrevisionwatch website: https://dxrevisionwatch.files.wordpress.com/2010/01/hackettaward-creed.pdf
  12. InitialConditions

    In progress: A systematic review & meta analysis of the incidence of, and risk markers for, [CFS] and [ME] in population studies, 2020, White

    Francis Creed (University of Manchester) has edited a book on Medically Unexplained Symptoms with Per Fink
  13. InitialConditions

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    I wonder if Dr Loades realises her fellow peer-reviewer did not bother to read past the absract? It makes a mockery of the whole system.
  14. InitialConditions

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    I had seen this thread but not read it. I saw the article and the review history last night. "I've not read past the abstract". I am still fuming. What calms me down is knowing we have people like David, Jonathan and Michiel (among others) to set the record straight.
  15. InitialConditions

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    I really like this collection of videos and hope they are shared and used widely.
  16. InitialConditions

    (Thesis) Cognitive behaviour therapy for chronic fatigue syndrome Long-term follow-up and Internet-based treatment, 2020, Janse

    those first couple of sentences in the abstract couldn't be more wrong. this looks like master's-level work at best, but I think it's PhD. :banghead:
  17. InitialConditions

    UK: Improving Access to Psychological Therapies (IAPT) articles, blogs and discussion

    I could write for hours on this, but to be brief: I've just started counselling which of course is currently over the phone. I made it clear from the start that I do not rate the questionnaires and PHQ9 / GAD7 scoring at all. My counsellor agreed. We also spoke about how the answers largely...
  18. InitialConditions

    dry eyes

    One chronically dry/stinging eye It is driving me mad. It has driven me mad for years. I am certain something is disrupting the lipid layer in my right eye, and I have a feeling it is something on the inside corner of my upper eyelid, though I don't have any proof apart from how it subjectively...
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