Notices by Brian Vastag (brianvastag@sciencemastodon.com), page 3

Patient advocates implored Nath to speed up the study by, for instance, bringing in two patients simultaneously. Or to bring in a patient and a healthy volunteer together. They tried this but decided they didn't have the staff bandwidth to do it. Nath and Walitt both had many other responsibilities & studies to attend to. As a senior NIH official told me about this whole thing: Everyone at NIH has a full plate. They have to push some stuff to the side to make room for new things. 8/

The study was unique in that after the extensive work-up in visit 1, five outside ME/CFS expert clinicians reviewed each case to decide if the patient fit all the published criteria for ME/CFS. This was quality control, to ensure patients really had ME/CFS. Three patients of the initial group were found to have other diagnoses - one had Parkinsonism, one had a rare (and fatal cancer), and so they were excluded from the second phase of the study. 9/

In March of 2018, I returned to Bethesda for the second visit, having been unanimously judged to, in fact, be suffering from ME/CFS. During this visit - another 10 days inpatient - I took a cardio-pulmonary exercise test, which produces very abnormal results in ME/CFS. Exertion makes us sicker, and this test shows that objectively. 10/

I also spent 4 nights inside a sealed metabolic chamber. Every calorie in and out is measured (I'll spare you the scatalogical details). The chamber measures how much CO2 a person exhales, and these numbers together can measure metabolic rate. The chamber was loud - lots of fans - and I didn't get much sleep. Here's my arm sticking out of the chamber for blood work, with my friend Andreas filming for German television. 11/

Visit two was exhausting. I talked with other patients in the study who were sicker than I was, and they were absolutely annihilated by it. Some took months to recover back to their already-shitty baseline functioning. It was an ordeal, but we were all motivated to help move research forward. 12/

Six year ago, I returned to NIH, where I started my career as a science writer, to be a patient in an amibitous study to understand post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The study included 30+ researchers & substudies & was a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick).

NEWS: The study's findings have FINALLY been submitted for publication.

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#MEcfs #ChronicIllness #medicine #nih

The study began after I wrote to then-NIH Director Francis Collins, whom I had talked to in my job as a science reporter at the Washington Post, imploring him to invest in understanding ME/CFS, which has been neglected for decades. I also knew other top administrators at NIH and so decided to use my connections to try to get some movement.

https://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/

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Collins, to his credit, emailed me and said he would move fast. This was in 2015. And he kept his word. He gathered some top clinicians at NIH and told them to design an intramural study - meaning it would take place on the NIH campus in Bethesda, Md. - to try to figure out what goes so wrong in the disease. Collins chose neurovirologist Avindra Nath (pictured with me above) to be priniciple investigator. Nath is the head of clinical neurology at the NIH Clinical Center.

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A 2015 Institute of Medicine report had reaffirmed that ME/CFS was a biological, not psychological, disorder, and there had been other pressures on Collins to act. So he moved responsbility for ME/CFS out of the small and under-funded Office of Women's Health over to the National Institute of Neurological Disorders and Stroke, a more appropriate home.

IOM report: https://pubmed.ncbi.nlm.nih.gov/25695122/

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