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https://www.virology.ws/2021/07/13/...L0KtXY-xHLFXcUXaolInFywErvuZGDLjRZj55rVqhlAIw
Trial By Error: Some Lightning Process Updates
13 July 2021 by David Tuller Leave a Comment
By David Tuller, DrPH
A Final Round in Norway
Who is ‘Voices of Recovery’?
New Crawley-Parker Paper on LP and CBT
Trial By Error: Some Lightning Process Updates
13 July 2021 by David Tuller Leave a Comment
By David Tuller, DrPH
A Final Round in Norway
Lightning Process supporters got some bad news recently when a Norwegian national research ethics panel rejected a proposed study because it was poorly designed and fraught with conflicts of interest, as I wrote about here. But that wasn’t the end of the drama.
Although the ethics panel’s decision was meant to be final and not subject to appeal, the study team appealed anyway, sending a long letter to the ethics panel defending the trial’s methodology and disputing the charges of conflicts of interest. The ethics panel agreed to take up the issue one more time. After another review, the panel reinforced its initial action by firmly rejecting the proposed study a second time. The ethics panel has made clear that it is not categorically against research into the Lightning Process—just this inadequate effort...............
Who is ‘Voices of Recovery’?
I’ve checked out the website of a group called Voices of Recovery, which carries the headline “Live a Life You Love.” This group has become an official stakeholder in the ongoing process of the UK’s National Institute for Health and Care Excellence (NICE) to create new clinical guidelines for ME/CFS. In November, NICE released a draft version that explicitly recommended against the LP, and invited comments from stakeholders. The agency is scheduled to release a final version next month.
According to the Voices of Recovery website, the organization was “founded in 2020 to represent the voices of those that have fully recovered from chronic illness, particularly Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) and fibromyalgia…We know these diagnoses are not a life sentence! We have over 50 members who have all fully recovered to prove otherwise.”.................
New Crawley-Parker Paper on LP and CBT
One of the arguments that LP proponents have made in its favor is that it is like CBT in some ways. This debating point arose during the debates in Norway over that now-defunct proposed trial. Professor Michael Sharpe, one of the three lead PACE investigators, has said the LP “has similarities to cognitive behaviour therapy.”
In some people’s minds, I guess, comparing the LP to CBT is meant as a sign of respect and validation for the former—the presumption being that CBT itself enjoys a positive reputation. Viewed from a sideways perspective, it looks more like the reverse–that these experts are essentially affirming that their version of CBT is a muddle of nonsense like the LP, with both interventions based on unproven mechanisms of action...........