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1 Uraniabce  Mar 1, 2015 1:34:18pm

It’s a start. So many so-called “imaginary illnesses” aren’t so imaginary.

2 Three Chord Monty  Mar 1, 2015 3:38:58pm

Well, it depends on who you ask. Some of the coverage of this contained some elements that some found curious.

Peter White, professor of psychological medicine at Queen Mary University of London, said it was premature to draw any conclusions from the study.

“Only one out of the 51 immune proteins studied was elevated in all cases compared with controls, something that could happen by chance alone.”

http://www.bbc.com/news/health-31644618

Coverage by Reuters, the Independent, and the Telegraph also gave prominent space to psychiatrists, discussing immunological research. Not unheard of, I suppose, given that there is now some movement towards linking certain cytokine abnormalities to depression. But, still. The Science Media Centre (whose chair is occupied by former Revolutionary Communist Party and Living Marxism member Fiona Fox) issued a statement consulting five ‘experts’ who were quite critical of the paper.

Ian Lipkin happened to run into some interference in his pursuit of researching this illness.

I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness. I was floored. I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score.

Mindy Kitei: A Candid Conversation with Dr. Ian Lipkin

So some enterprising patients as well as scientists got together and formed a
crowdfunding initiative so the Virus Hunter Dr. Ian Lipkin could actually proceed with research.

I know: “Trust science, not scientists.” Still…just a bit odd.

But that’s not the only odd thing that’s happened with this lately. On February 10th, the Institute of Medicine released a report that had been commissioned by the Department of Health & Human Services to come up with a clinical definition of this illness. The cost was $1 million dollars, in a disease category funded by NIH to the tune of $5 million annually.

So, the report was released, with recommendations to HHS including that what was formerly known as Chronic Fatigue Syndrome should now be known as “Systemic Exertion Intolerance Disease.” The panel did an extensive review of the literature and decided on that name due to the number of papers that show that cohorts chosen using strict criteria that are likely to have more accurately captured the disease known as Myalgic Encephalomyelitis (as discovered by Melvin Ramsay and others during one of several noted outbreaks at Royal Free Hospital in 1955, neither the first nor the last), show profound physical dysfunction—collapse, really—as measured on 2-day cardio-pulmonary exercise testing. Healthy controls are fatigued on the 2nd day of a 30 minute exercise bicycle test, while ME (CFS) patients are often unable to complete the test, and show objectively measurable biological abnormalities.

The IOM report reflects this fairly well; some see it as flawed, but they seem to have done a reasonable job of pointing this out. It’s one of the few ways that CFS patients, tagged with a diagnosis believed to describe a condition defined purely by subjective complaints (such as headaches and sore throats and “tiredness” or “fatigue”), can actually try to prove that they are actually ill. But even this has done little persuade the many people who believe the condition to be a matter of laziness/somatization/hypochondria/depression/malingering—with many realizing that admitting they feel this way is not always so well-received, while others have no such qualms, even if they later realize that their own honesty is not necessarily the best policy.

In the UK, however, Graded Exercise is recommended as a safe and effective treatment for “CFS/ME,” as most notably documented in a 2011 study called the PACE Trial which was published in the Lancet. The PACE Trial protocol was changed between its publication and that of the final paper. A book could be written about this, and probably will someday; to sum up, the protocol had initially defined recovery as scoring 85, on a measure in a study where a score
of 65 or less indicated profound disability. When the paper was published, the recovery measure had been changed to 60, meaning a patient could have theoretically entered the trial at 65, and finished at 60, a setback, and still be deemed ‘recovered.’

Howls of outrage, many letters (few published), and a lingering bitterness have done little to persuade the Lancet that they erred in publishing this paper.

Meanwhile, on the same day the Institute of Medicine released their report, the Cochrane Review also released a newly commissioned report that chose not to look at the studies that the IOM panel focused on; instead they chose three where the cohort was defined by the CDC’s Fukuda criteria (Three Chord Monty sez, if you’re still reading, that these criteria suck), and five where the cohort was defined by the Oxford criteria (which are far worse, and suck as much as could ever be possible in an area such as this). The result is of course a rubber stamp that exercise is a safe and effective treatment for this condition—a conclusion that would likely never be reached had they used a stricter criteria such as the International Consensus Criteria for Myalgic Encephalomyelitis.

But for those patients whose illness is defined by a strict criteria such as the ICC-ME far more so than a loose criteria such as Oxford, the Cochrane Review is considered as good as it gets. Kind of like getting published in the Lancet. Indeed, it wasn’t long before the editors of the Wikipedia article on CFS were discussing listing this new review’s recommendations as being a new addition to the article that would be seen, as a secondary source, as evidence of the most powerful sort.

Ian Lipkin has placed himself in the middle of a decades-old squabble that is hard to describe without descending into a narrative that borders on conspiracy theory. The foremost medical authorities on the planet—most specifically the CDC, but also the Mayo Clinic—have led the way in describing the condition as ‘serious,’ but treated effectively with Cognitive Behavioral Therapy, Graded Exercise Therapy, and antidepressants. And since most people seem to think the condition itself is BS, this has all made sense. But now it’s really starting to not make sense. In spite of that, something interesting now pops up, only since a couple of weeks ago, if one does a Google search for “Chronic Fatigue Syndrome” or “Myalgic Encephalomyelitis. There’s a handy info box, supplied courtesy of an apparently new partnership between Google and the Mayo Clinic, which has a three-tab overview of the condition. The ‘treatment’ tab is particularly interesting: antidepressants, physical exercise, stress management, relaxation techniques, support group…clinical psychologist, psychiatrist, etc. All of this is is almost completely in conflict with the report issued by the Institute of Medicine, all 200+ pages of it. What does Mayo care? Everybody knows CFS is BS.

For this patient population, these are…interesting times.


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