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    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    Since worsening of symptoms after activity is a key feature of the condition they were trying to study it would have been sensible to match the activity levels required for each intervention. Edit: Removed superfluous 'a' in first sentence .
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    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    Just realised this is bit probably a bit of a logical leap. We don't know what he said to the interviewers - or how much editorialising went on. It would be difficult to prove culpability here. This doesn't change the fact that he has factually invalidated some of the press coverage.
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    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    This is a massive own goal on Sharpe's behalf. He's basically admitted that it wasn't the just trolling that caused him to leave (it was the attempts to invalidate his research which he can't publicly portray as harassment because of the ICO ruling) . This renders the Times and Daily Mail...
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    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    Please double check this but when I fact checked this from the Kelland article I could not find any of Sharpe's or Per Fink's from the same same periods listed on the site suggesting the list isn't comprehensive. (Which Kelland probably should have realised as her interviewees work wasn't...
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    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    I agree with @Cinders66; I think contacting Reuters with a polite email disputing things we can back up with data (ie. Cochrane ) might be the way to go. I doubt it will get anywhere but we can always try. Edit : pressed post too soon!
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    David Tuller: Trial By Error: Cochrane's Report on Courtney's Complaint

    Does anyone think it would be worth sending this new evidence with a request for a correction to Reuters and the Guardian?
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    Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

    You can read reviews of the David D. Sherry on Vitals.com (health professional reviewing website) they make interesting reading. Here are some: Why didn't the podcast producers check to see what patients were saying about this doctor ? I literally just had to google "David D. Sherry" and...
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    Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

    I'm currently looking into research of the David D. Sherry the doctor/researcher mentioned in the podcast. This isn't his paper on Chronic Regional Pain Syndrome but another on a similar treatment program for children with fibromyalgia: The Treatment of Juvenile Fibromyalgia with an Intensive...
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    Cochrane ME/CFS GET review temporarily withdrawn

    I'm guessing they are struggling with red tape specifically -the not withdrawing the review without the author's permission thing? I like this bit though (my bolding): It's almost (but not quite) an admission that previous review was completely unfit for purpose.
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    Royal College of Surgeons blog: Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?

    I think this is where the mental capacity act should come into play. It sets clear boundaries about when a person can and cannot be assumed to lack the ability to make decisions about their health. Here is a summary from the NHS website (my bolding); I'm no expert but I don't think PWME or...
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    Cost-effectiveness of interventions for medically unexplained symptoms: A systematic review, 2018, Wortman et al

    Does anyone else find it ironic that in a paper on cost-effectiveness (which presumably cost money to research) the only conclusion they could draw is that one therapist to many patients is cheaper than one to one?
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    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    There's quite a bit of research to show that does happen and its called diagnostic overshadowing (although the term originally was coined for the same thing happening to people with learning disabilities).
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    Impairments in cognitive performance in chronic fatigue syndrome are common (2019) Newton et al.

    It would have made sense to repeat the tests several times in short space of a time (24-48hrs) to investigate the effect of PEM on congnitive function. Speaking of which I could see no mention of the sequence they administered the tests in; if it was the same order for every participant then...
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    (not a recommendation) What it’s like to live with chronic fatigue and depression

    I can't vouch for the accuracy of that anecdote but I do know that kind of stuff happens enough to have a name; When a patient's account of true but odd/implausible events are dismissed as a sign of mental illness it's known as 'The Martha Mitchell Effect'. It's named after the wife of a...
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    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    I've just read the interview with Nick Brown that was included in the article. It seems like "the data thugs" might be able to help us debunk some of the BPS work. Are they aware of the political reasons this piece of research is being hyped beyond all recognition? I am certainly interested in...
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    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Am I just being really cynical here or does anyone else suspect that the hype surrounding this paper has nothing to do with importance of the results and is instead a scrambling attempt by those involved to gain some plausible deniability with regards to their previous disregard for bad research...
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    The prevalence and treatment of health anxiety in Chronic Fatigue Syndrome (CFS) - Jo Daniels 2018

    I've uploaded a copy of the health anxiety questionaire they used for everyone to look at but here are some of of the statements on the questionaire that indicate high health anxiety; I worry a lot about by my health. I am aware of aches and pains in my body constantly I constantly see...
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    Carol Monaghan has applied for a debate in UK House of Commons main chamber

    I think part of the problem is that detailed scientific discourse is difficult to fit into a parliamentary debate where speakers have limited time to make their point so MPs may choose to go for the easy emotional impact option of reading testimonies from constituents regardless of how ill...
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    Cluster randomised controlled trial of training practices in reattribution for medically unexplained symptoms (2007) Richard Morris et al.

    Hi I found this guide sheet about MUS from Royal Society of Psychiatrists from 2011. This is the advice it gives on dealing with MUS patients. It cites the paper in the references. This is what it says about reattribution; Which is a very positive spin on the results. But what's more...
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