I sat in the green room, 15 minutes before the start of the event, more nervous than I had been for a presentation in recent years. The occasion was the keynote address, which I was about to present before 1500 attendees at the 2018 annual meeting of the American Society for Virology.
I was nervous for two reasons. First, I was trying something completely different for the keynote, and I was not sure if it would be welcomed.
The other reason for my nerves was that my companion for the keynote had not yet arrived.
Respiratory syncytial virus (RSV) is a leading cause of respiratory illness, including bronchiolitis and pneumonia, in the young, elderly, and immunocompromised. RSV poses a substantial public health threat due to its association with severe morbidity and mortality in infants and premature babies.
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 tested the effectiveness of a neurolinguistic programming intervention (used widely but never formally tested) in children and young people with chronic fatigue recruited between 2010 and 2013. Though the number of participants was small, analysis suggested a benefit in terms of physical function (measured by the standard SF 36 scale) at both 6 and 12 months after intervention.[click to continue…]
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 domain. (If the letter sounds familiar, that’s because it is pulled together from previous versions I’ve sent to others.)
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 ongoing refusal of the journal editors and Dr. Godlee herself to take responsibility for this mess and clean up their mistakes is rather shocking. The immediate prompt for my new letter was a recently published article by Phil Parker, founder of the Lightning Process, touting the Archives study as evidence that his training program has healing properties.
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 him the letter earlier this evening (Monday, July 9, PST). In addition to more experts and ten members of the House of Commons, dozens of organizations from around the world are now also urging The Lancet to take prompt action.
The subject line of today’s e-mail:
Re-sending open letter about PACE, with additional signatories
Professor Michael Sharpe blocked me on Twitter many weeks ago but apparently can’t restrain himself from tweeting at me again. Maybe I’ve gotten under his skin.
Yesterday he tweeted what must have felt to him like a slam-dunk question: He wanted to know how many clinical trials I have conducted. The answer is none. But I don’t need to be a clinical trial expert to know that it is impossible to be “recovered” (or “within normal range,” per The Lancet) and “disabled” simultaneously on a primary measure, as happened in PACE. I don’t need to be a clinical trial expert to know that you can’t publish newsletters in which you promote therapies under investigation as already proven to be effective.