Year: 2018
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My Norwegian Interview
In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain against all the evidence that their…
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“Talk is Cheap,” Patients Tell NIH
Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged the agency to develop “bold…
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Australian Draft Report Seeks Comments
In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy going forward, also highlights the potentially dangerous impacts of…
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The New Interferon “CFS” Study
I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. Since the study team included…
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The View From Norway
I spent the last week of November in Oslo. The Norwegian ME Association invited me to give a couple of talks and have some meetings with public health officials. The city was charming, even if dark and overcast at this time of year. Not surprisingly, the same tussle taking place over this illness everywhere–between the…
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And Cochrane Makes Another Move…
Yet another interesting development has taken place at Cochrane—and this new development again suggests that things there might be moving in the right direction. On Friday, the organization withdrew a protocol for what is called an “individual patient data” (or IPD) review of exercise therapy for the illness it has referred to as chronic fatigue…
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How BMJ Enabled Bristol’s Ethics Exemptions
Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. Dear Dr. Godlee— As you know, I have spent some time criticizing a 2011 BMJ Open study involving…
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Some Good News on Cochrane
In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself was a revision…
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Some Thoughts About NICE
The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when the organization was…
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Video of October Newry Talk, with Brian Hughes
Here’s a video of back-to-back presentations from last month in Newry, Northern Ireland. On October 2, Brian Hughes, a professor of psychology at the National University of Ireland, Galway, and I both spoke at an event organized by Hope For ME & Fibro Northern Ireland. The title of the event: “The PACE Trial: ‘The Greatest…
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How Bristol Investigators Avoided Ethical Review
I have written many posts about BMJ Open’s 2011 school absence study, which reported that school absence records could be useful in identifying children with chronic fatigue syndrome. However, for reasons not yet adequately explained, the investigators exempted the study from ethical review on the grounds that it qualified as “service evaluation.” To support the…
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An Australian Exchange with Professor Sharpe
Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as the open letter and Professor…