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  1. Hoopoe

    Michael Sharpe skewered by @JohntheJack on Twitter

    Essentially the position they appear to be trying to take is that bad trial design is OK because patients are upset and call them names on Twitter. Nevermind that maybe patients are upset because of bad trial design and refusal to acknowledge the problems. Yes PACE was just a trial, but...
  2. Hoopoe

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Evidence for an autoimmune disease

    I'm getting the impression that several groups wanted to publish a B cell autoimmunity paper in case of a positive Rituximab trial.
  3. Hoopoe

    Chronic fatigue syndrome: the ongoing medical debate (2018) British Journal of Healthcare Management - George Winter

    What else does it say about PACE? (this article isn't yet available on sci-hub)
  4. Hoopoe

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    We haven't yet had a study that has examined this with good methodology and we need one. It is possible that the IOM criteria are worse than existing criteria (I'm assuming that all are flawed in one way or another and will be until more about the underlying biology is known).
  5. Hoopoe

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    A similar study using NorCAPITAL data was carried out for the Canadian criteria and also concluded that the diagnostic criteria make almost no difference: https://onlinelibrary.wiley.com/doi/abs/10.1111/apa.12950 The diagnostic criteria for NorCAPITAL I'm not sure I'm ready to accept these...
  6. Hoopoe

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    One can make the guess that SEID is being attacked because it's attached to the IOM report which states that the illness is not psychological in origin. If that paradigm were fully accepted, Wyller would find it harder to do the studies he has planned.
  7. Hoopoe

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    There is a link to the NorCAPITAL study here. https://clinicaltrials.gov/ct2/show/NCT01040429 I do not see any attempt to detect PEM. If they did not assess for PEM, they cannot possibly apply the SEID criteria since they require PEM to be present for a diagnosis.
  8. Hoopoe

    AFME decide Geneva is where their #millionsmissing contribution should be

    But aren't they funded by patients in the UK?
  9. Hoopoe

    David Tuller's new crowdfunding campaign (April 1, 2018)

    Did Sharpe's twitter activity cause an increase in donations? He got a lot of responses to this from patients
  10. Hoopoe

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Maybe that we cannot make any sense of their mind and body are one philosophy is because the value of it lies not in being an accurate framework for understanding illness but in advancing careers and financial interests. A political statement that justifies things like the existence of...
  11. Hoopoe

    Very little happening!!

    It's a quiet period in terms of research news but research interest and funding has been increasing so it must be due to chance.
  12. Hoopoe

    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    What is/was Oxfam and why was it a threat to world peace? Edit: nevermind. It's a group of charities that want to reduce famine and poverty.
  13. Hoopoe

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    In my view the militant activist narrative is meant to discourage patients from speaking out. It is an attempt to manipulate our behaviour. They fear an uprising and that is exactly what is happening in some limited fashion. This uprising has still room to grow. The public sympathizes with...
  14. Hoopoe

    KPAX002 as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a prospective, randomized trial, 2018, Montoya et al

    I still believe in the hypometabolism hypothesis, even though this study suggests that (if it plays a role) it's not easily treatable. The study also suggests that a stimulant doesn't really work either.
  15. Hoopoe

    What is Action for ME's current (March 2018) position on the PACE trial?

    The PACE trial used the Oxford criteria for diagnosis which suggests GET is generally ineffective even when broad criteria centering around unexplained significant chronic fatigue are used.
  16. Hoopoe

    ME/CFS Alert - Interview with Michael VanElzakker

    Do patients tend to get more herpes virus blisters compared to the normal population? I had that regularly as child. On the nose, around the mouth.
  17. Hoopoe

    Antipsychotic drugs v CBT versus a combination of both in people with psychosis: rc pilot & feasibility study, Morrison et al, 2018

    Someone seems to think this confirms CBT is better than medication. I have not read more than a few lines from this article and it's interesting that two opposed and incompatible interpretations are being made, much like in the PACE trial.
  18. Hoopoe

    "The denouement". My answer to prof. Knoop.

    The CBT proponents seem rather nervous these days. They can see the end approaching. As Valentijn says in her comment, they have nobody but themselves to blame if the end of CBT for ME/CFS is rather unpleasant and embarassing.
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