Nothing new here except that M.E./C.F.S research is getting more funding, although a drop in the bucket compared to other disease funding. Research is finally breaking through the notion that the disease goes much further than some absurd "guesses" that it is a behavioral or "mental" problem.
People with this disease are truly disabled, that disability goes far beyond an idea of "I don't feel well" that is truly live-changing.
Here is some of the discussion:
People with this disease are truly disabled, that disability goes far beyond an idea of "I don't feel well" that is truly live-changing.
Here is some of the discussion:
'Milestone' Meeting Highlights NIH Efforts to Combat ME/CFS
BETHESDA, Maryland — The National Institutes of Health (NIH) held a 2-day conference on high-level science that is beginning to yield clues to understanding and ultimately treating the complex, multisystem illness now known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The Accelerating Research on ME/CFS Meeting, held on the NIH's main campus on April 4 – 5, brought together experts in basic science, clinician researchers, patients, and patient advocates to share the many research approaches being taken. These include studies in genomics, metabolomics, metabolism, immunology, microbiome, and brain imaging. Many of these studies have identified biological perturbations in patients with ME/CFS that are distinct from normal persons or comparison control patients.
The day before the meeting, on April 3, the NIH sponsored a day-long meeting, Thinking the Future: A Workshop for Young/Early Career ME/CFS Investigators, aimed at bringing new researchers into the field. About 40 persons attended. Some presented posters of their work at the main meeting.
The NIH has tripled its research funding for ME/CFS in recent years, from just $5 million in 2014 to $16 million in 2018. Part of that money has gone to three collaborative centers — Columbia University, in New York City; Cornell University, in Ithaca, New York; and the Jackson Laboratory, in Farmington, Connecticut. At the conference, speakers from each of those institutions gave updates on their work.
On the NIH campus, an in-depth intramural study is investigating a narrowly defined group of about 20 patients who meet multiple criteria for ME/CFS. These patients developed the illness after experiencing a confirmed infection. They have been ill for a period of 6 months to 5 years. In the study, they are being compared to healthy control persons and to patients with confirmed Lyme disease. An interim analysis of data will be conducted soon.
In a brief address, Francis Collins, MD, PhD, director of the NIH, called the conference "a real milestone in our efforts to understand the cause and ultimately to find preventions and cures for ME/CFS" and told the audience that he is "deeply committed" to finding answers.
Collins said that research recommendations included in the landmark 2015 Institute of Medicine (now the Academy of Medicine) report on ME/CFS led the NIH to resurrect its trans-NIH ME/CFS working group, which includes scientists from nearly all of the 27 NIH institutes and centers. The working group is led by Walter Koroshetz, MD, a neurologist who directs the National Institute of Neurological Disorders and Stroke (NINDS), along with dedicated program officers.
That move, Collins said, allowed the NIH to ratchet up funding for the collaborative centers, launched in September 2017.
However, patient advocates say that the current funding level — which dipped slightly in 2019 — is not nearly enough to address the complexity of the illness, nor is it commensurate with the disease burden. It is estimated that in the United States, 1 to 2 million people have ME/CFS; of those, a quarter are homebound or bedbound, and from one third to two thirds are unemployed.
In fact, "ME/CFS is more underfunded vs burden than any disease in the NIH portfolio," according to Arthur A. Mirin, PhD, a retired applied mathematician from California, whose 30-year-old daughter has been ill with ME/CFS half her life. Mirin spoke from the audience during a panel discussion held at the end of the conference. On the basis of disease burden, the NIH should be devoting slightly more than $200 million to ME/CFS, Mirin said.
Comments
Post a Comment