Category: ME/CFS

I have been trying to convince editors at two BMJ journals to take responsibility for poor decisions. Despite serious nudging and prodding, I have been unsuccessful. The two papers I have criticized as being fraught with methodological and/or ethical missteps are these: “Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care…

Two weeks ago I sent an e-mail to Sir Andrew Dillon and Professor Mark Baker alerting them of problems with the Lightning Process study published last year in Archives of Disease in Childhood. The two men are members of the NICE Guidance Executive and have a hand in the current process of developing what might…

When the PACE trial was published in early 2011, my New York Times editor sent it to me, along with the press release. As a non-staff contributor to the Times, I had started covering the debate over the mouse retrovirus hypothesis and science, but I’d heard nothing about anything called PACE or graded exercise therapy.…

Earlier this month, in advance of a stakeholder meeting, the U.K.’s National Institute for Health and Care Excellence released a draft scoping report. The document outlined the issues slated to be addressed by the committee selected to develop the new guidance for the illness NICE now calls ME/CFS. (The 2007 guidance referred to it as…

It’s been almost a year since the CDC removed its recommendations for GET and CBT as treatments for ME/CFS (or CFS, or ME, or CFS/ME, or even SEID or whatever else one calls this illness or cluster of illnesses). When questioned about the decision, the agency explained that people had misunderstood what was meant by…

Last year, BMJ Open published a paper called “Randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: a study protocol.” The seven authors, all affiliated with the University of New South Wales in Sydney, included Professor Andrew Lloyd, the infectious disease expert and the country’s leading…

Saturday, May 12th, is International ME Awareness Day. (It’s also International Fibromyalgia Awareness Day, and the same for Gulf War Illness and Multiple Chemical Sensitivity. But here we’re mostly focused on the first.) This day in the calendar was adopted years ago as an opportunity to promote the visibility of neuro-immune diseases. It has more…

During my week in Perth, I visited Alem Matthees twice. Alem is the patient who successfully fought Queen Mary University of London for access to raw PACE trial data; reanalyses of these data have exposed how the extensive outcome-switching led to the improved results reported by the investigators. Alem’s health has declined dramatically since that…

A Brief Update: Berkeley’s crowdfunding period closed on April 30th–Monday night. I ended the campaign with $87,580. After Berkeley’s 7.5% in fees, the funds will cover my salary/benefit from July 1, 2018 to June 30, 2019, and some travel costs. I really, really appreciate the fantastic support. Thanks to everyone! I’ve taken a few days…

I’m now at the airport in Sydney waiting for my 12:45 pm flight back home. I arrive in San Francisco at 9:30 am this morning—-gotta love that one-day time change, at least in the eastward direction! I’ve had an amazing six weeks here. I met lots of new friends, connected with others I’d only known…

This post is sort of long and complicated, but I think the details are important given Andrew Lloyd’s outsized role in the ME/CFS domain in Australia. I urge patients to take care not to over-exert themselves in reading it! A few weeks ago, I interviewed Andrew Lloyd, an infectious disease specialist at the University of…

And now, from our good friends in the psychology department at the University of Bath, comes the shopping bag study we’ve all been waiting for. Here’s some information recently disseminated by the university: The purpose of this study is to look at how people with CFS/ME respond when asked to do a physically exerting task,…