Category: ME/CFS

Last week, The Times ran an article about the open letter to The Lancet concerning the PACE trial, quickly followed by a piece in The BMJ. This morning, I e-mailed the following letter to Fiona Godlee, editor-in-chief of The BMJ and editorial director at BMJ. I cc’d officials at the Health Research Authority, some NICE…

Earlier today I sent the following letter to the e-mail address I found at the website of Red Whale/GP Update, which recently disseminated a recruitment ad for FITNET-NHS. I blogged about it on Monday. I cc’d officials at the Health Research Authority, the agency that regulate research ethics. Dear Red Whale/GP-Update– I am a senior…

A British medical education company has recently disseminated a recruitment ad for a high-profile pediatric study of treatment for what it calls CFS/ME. The recruitment ad’s headline describes the intervention being investigated as “effective,” without caveat or reservation. (Full headline: “Chronic fatigue syndrome (CFS/ME): effective home treatment for teenagers”) To back up this assertion, the…

Two years ago, the Mayo Clinic referred Lisa Alioto, a patient diagnosed with chronic fatigue syndrome, to a three-day rehabilitation program–a mini-version of a multi-week program designed for those with a grab-bag of chronic pain and related conditions. These conditions, as listed on the Mayo website, include fibromyalgia, chronic back pain, so-called “nonepileptic” seizures, migraines,…

Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trial—which Sir Simon had called “a thing of beauty”–to be “so profoundly flawed that it cannot be trusted.” Sir Simon tweeted out a brave front…

Two months ago, Professor Racaniello sent Lancet editor Richard Horton an open letter about the indisputable methodological and ethical failings of the PACE trial. This was a follow-up to Virology Blog’s 2016 open letter to Dr. Horton; the new one detailed what has happened since then. Last month, I re-sent and reposted this new open…

Last week I admonished the US Centers for Disease Control for including fuzzy language about exercise in its new package of “information for healthcare providers.” The way the Mayo Clinic deals with the illness it calls chronic fatigue syndrome is an excellent illustration of why it is so important for the CDC to stop fudging…

Last summer, the US Centers for Disease Control removed graded exercise therapy and cognitive behavior therapy from its website as recommendations for treatment of the illness it was by then calling ME/CFS. Its stated explanation for the change–that readers had misunderstood the recommendations–was nonsense. Readers understood all too well what the agency meant by GET…

Last week, I noticed that Nick Brown, the editor-in-chief of Archives of Disease in Childhood, had appended an “editor’s note” to the Lightning Process study on June 19th. The note is stunningly inadequate. Here it is: This study was published online in Archives of Disease in Childhood after peer review in September 2017. The trial…

Earlier today, I e-mailed the following letter to the members of the House of Commons Science and Technology Committee, which has been investigating issues of scientific and research integrity. I thought it would be a good idea to make sure they knew that this quality appeared to be lacking in some studies in the ME/CFS…

This morning I sent another letter to Fiona Godlee, editor-in-chief at The BMJ and editorial director at BMJ. Hopefully she will take action soon on the two pediatric papers whose publication has demonstrated that something is seriously amiss at the journals under her stewardship, at least when it comes to this domain of research. The…

Last month, Professor Racaniello sent Lancet editor Richard Horton an open letter about the PACE trial signed by 94 scientists, clinicians, academics and other experts. The letter, a follow-up from one sent in 2016, cited the study’s “unacceptable methodological lapses” and called for a fully independent investigation. Since Dr Horton has not responded, I re-sent…