Just My Honest Opinion

Day after day, from my bed, I watch my social media newsfeeds for some news on my disease, especially for anything happening locally in Alabama. But news, by nature, often comes when not expected. And this happened in October, while I was watching a video from Open Medicine Foundation of a presentation at the International Association of CFS/ME conference . Dr. Jon Kaiser was speaking, and he said: “There’s a researcher named Victor Darley-Usmar at the University of Alabama, who works with the Seahorse company—and I think he’s a genius. He is developing an equation to take all the data that the Seahorse test provides and distill it down into a single number called the—he calls it the ‘BHI,’ the bioenergetic health index. So, you know, it would be like getting a PSA or [inaudible]. You get a bioenergetic health index from a blood sample, looking at white blood cell mitochondrial energy production. So I think that’s the cutting edge of this field, and once we start sending our patient...

In early 2015, the Institute of Medicine put out their long feared report on ME/CFS. They searched through the research, and a committee made of experts (both in the disease and in other pertinent fields) made some suggestions that are intended to influence US health agencies. They recommended a new clinical criteria. They recommended a new name. They recommended a new diagnostic code with the new name. They recommended more research funding. They recommended a health provider education/dissemination campaign. They recommended the government set up a screen/diagnostic toolkit for clinicians. They recommended that the criteria be reviewed again in 5 years for any changes science my dictate are needed.   The CDC and NIH have started work on implementing many of these recommendations. The CDC website is expected to be changed soon to have the new criteria. They have a workgroup to help them in the implementation. This workgroup includes patients, SEID experts and...

So it's been a bit frustrating and disheartening for me due to personal circumstances, lately. I was looking to the January Chronic Fatigue Syndrome Advisory Committee meeting to be a justified distraction for a couple of days. But, it brought on more frustration, I hate to say. So, I must purge. And this is the place for me to do so. On Friday, they revisited a previous recommendation because the committee did not get the response they had hoped for from the secretary/government agency. They were discussing what to do, reword? resend as is? don't sent again? The recommendation is: The IOM has acknowledged and identified a distinct medical condition involving systemic exertion intolerance with PEM and universal core criteria.  CFSAC recommends that the disease identified by the IOM be clearly distinguished from other causes of chronic fatigue, such as conditions described by Fukuda et al, 2005 Reeves, Oxford and other forms of chronic fatigue which include pati...

On November 9, Dr. Edward Shorter of Toronto gave a presentation to NIH officials on the history of ME/CFS. The fact this was going to occur was not shared in the NIH conference call with patients just 7 days before. It was quite a surprise considering the other NIH activities related to ME/CFS that was shared. Dr. Avindra Nath , the NIH official leading the new clinical study on ME/CFS, was there on that patient conference call, coming in late. In fact, you can listen to it or read the transcript here . When patients found out about this from someone not at the NIH, advocates sent out the alarm. One of them was Jennie Spotila. She wrote a blog and sent a letter to the leader of the National Institute of Neurological Diseases and Strokes (Dr. Walter Koroshetz) because Shorter's 2015 comments about ME/CFS were disparaging of the patients and discredited the biological basis for the disease (along with a book he wrote about it in the '90s). I too wrote a letter. My letter...