My first exchange of views with the PACE authors involved the issue of case definition–the criteria used to identify the illness they called chronic fatigue syndrome. This exchange took place courtesy of The New York Times, not long after The Lancet published the results of the PACE trial. In March, 2011, the Times ran a piece about the role of disease criteria in epidemiology, in which I analyzed the PACE trial’s use of the problematic fatigue-based Oxford criteria. (This was actually my second piece involving PACE; the first, a news story, was a piece of crap because I took the study at face value, having never heard of it before the findings were announced.)
One of my goals next year is to write more about so-called “medically unexplained symptoms,” also known as MUS. The term MUS might be useful as a descriptive name for the large category of phenomena that lack a proven pathophysiological pathway. But in the medical literature, and in the minds of those who present themselves as experts in the field, it is framed as an actual diagnosis that can be delivered with full confidence rather than a provisional construct based on the current state of medical understanding.
A new study in the Journal of Psychosomatic Research, posted December 16th, has reported that patients with chronic fatigue syndrome who experience major post-exertional malaise have a greater burden of psychological distress than those whose PEM is minimal or non-existent. Of course, this is not surprising. The sicker people are, with this or any illness, the more likely it is they will experience depression or related emotional turmoil for any number of reasons—the impacts of poor health, discrimination at work, lack of understanding from family and friends, etc.
Yet the paper couches these findings in language that suggests patients are possibly or likely responsible for keeping themselves sick. And the authors appear to overlook the main implications of their own findings.
The human gut microbiome appears to play diverse roles in host physiology, metabolism, and immunity. Most conclusions about what the trillions of bacteria in our intestines actually do come from studies in mice, or correlative studies in humans. An exception is an investigation in humans which shows that antibiotic-mediated alteration of the fecal microbiome* interferes with the antibody response to influenza vaccine.
On Friday, STAT posted my opinion piece about BMJ and the Lightning Process paper–in particular, about BMJ’s decision not to retract the paper despite the multiple documented violations of core ethical and methodological principles of medical research. That anti-scientific decision is potentially harmful not only to children suffering from a stigmatizing illness but ultimately to the reputations of BMJ and Dr Godlee as well.
STAT is an excellent, Boston-based, online reporting operation that examines the nuts-and-bolts of research and policy in health care and medicine. It is widely read and widely respected. STAT has published previous pieces on the illness in question, including this on the downfall of PACE (by Julie Rehmeyer), this on the CDC’s decision to drop its CBT/GET recommendations (by Julie Rehmeyer and me), and this on an insurance decision in a patients’ favor (by Steven Lubet and me). [continue reading…]
Simon McGrath provides excellent accounts of research topics at his blog, ME/CFS Research Review. He is skilled at rendering complicated stuff into easy-to-understand prose. On December 10th, Simon posted this update of developments discussed by Stanford geneticist Ron Davis during a recent talk at the Albert Einstein College of Medicine in New York.
In his talk, Davis discussed the latest on the notion that “something in the blood” is playing a key role in the disease–a topic being explored by a number of research teams in addition to his. With Simon’s permission, I am re-posting his overview of the discussion. Since I am incapable of advanced technological maneuvers, I was delighted to find out that I could just copy Simon’s blog and paste it in here, and the graphics would reproduce here as they appeared there. Whew!
Vincent speaks with members of Prometheus, a team of academic and industrial scientists assembled to develop antibody-based therapeutics against infections caused by tick-borne Crimean-Congo hemorrhagic fever virus and rodent-borne hantaviruses, for which no approved vaccines or specific drugs are available.
This week I attended the Nipah Virus International Conference in Singapore, marking the discovery of the virus 20 years ago. It’s an opportune time to recall the events around the emergence of this deadly pathogen.
What’s going on at the Mayo Clinic? It has been more than two years since the US Centers for Disease Control and Prevention (CDC) removed cognitive behavior therapy and graded exercise therapy as treatments of choice for the illness it now calls ME/CFS. And Mayo still seems not to have noticed that anything has changed—unlike Kaiser Permanente, for example, which acknowledged earlier this year that it had been wrong about the illness.