Health Rising is proud to announce that the Solve ME/CFS Initiative (SMCI) has become a sponsor.
No organization has played a bigger role in ME/CFS than the SMCI (formerly the CFIDS Association of America (CAA)). Indeed, it’s hard to imagine what the field would look like without our one (for many years) professional organization advocating for ME/CFS and funding research.
Over the years, the SMCI has funded more research into ME/CFS than any other organization. Early on, it was a frequent funder of pathogen studies. Later it played a crucial role by supporting the early work of researchers like Staci Stevens and colleagues of the Workwell Foundation, Alan Light, Patrick McGowan, Dikoma Shungu, Gordon Broderick and others. The SMCI, for instance, was the first group to fund a two-day exercise study in ME/CFS.
Under Research Director Suzanne Vernon’s watch, the SMCI created the first and still the most effective ME/CFS Biobank and brought young new researchers into the field including Patrick McGowan and recent NIH research center awardee, Derya Unutmaz.
Next, Zaher Nahle created the first Patient Registry ever for ME/CFS, produced the yearly Ramsay Research Grants awards – which have funded creative pilot studies into a wide array of subjects – and initiated two other research projects.
The SMCI’s Biobank and Patient Registry showed its heft when the SMCI partnered with three of the four NIH-funded research centers, and then with RTI International – to produce the Data Management Coordination Center which will serve as the research centers’ data hub.
The first Ramsay grant awards explored how problems with metabolism and energy production may affect the immune system. The second set of Ramsay Awards took on an international cast, funding teams from Sweden to Germany to Israel to the U.S. These studies used cutting edge technologies to examine epigenetics, the intestinal virome, T-cells and energy production, and autoimmunity and the gut.
The SMCI also produced a “Discovery Forum” which brought together doctors and researchers and launched two new initiatives to: a) uncover the molecular basis of exercise intolerance; and b) use “functional genomics” to identify targets for drug treatments.
A leader in advocacy over many years, the SMCI took its advocacy efforts to a new level when President Carol Head hired the first full-time professional advocate, Emily Taylor, in the history of ME/CFS. Together with ME Action and others, Emily dramatically increased engagement with Congress on ME/CFS issues, helped “un-zero” the CDC’s CFS program funding, put ME/CFS on the National Organization for Women’s radar, helped get Nevada’s entire congressional delegation to support ME/CFS, and is now pushing Congress to include ME/CFS in its disease funding. The SMCI participated in the overhaul of the CDC’s website which eliminated CBT/GET as recommended treatments for ME/CFS.
Meanwhile, Carol Head brought national attention to ME/CFS when she was honored as one of Oprah’s Health Heroes, and in her interview with Ms. Magazine.
- Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I
- From Bedridden to Advocate: Carol Head Talks Up ME/CFS on Ms Magazine
Running on All Cylinders
The SMCI is clearly humming on all cylinders – research, advocacy and outreach. It’s funding fascinating research, its Biobank and Patient Registry are providing a piece of research infrastructure this field dearly needs, and it’s deeply integrated itself into the new NIH Research Centers. With the hiring of Emily Taylor, the SMCI brought its commitment to advocacy to a new level. Its Facebook pages are the busiest in the ME/CFS community, it helped bring Ms. Magazine into the game, and the quarterly Chronicle provides a meaty buffet of research, advocacy and patient stories.
Health Rising thanks the SMCI for its work over the years, and is proud to have the SMCI join the Simmaron Research Foundation, ProHealth, the Open Medicine Foundation, The HHV-6 Foundation and ethica.io as sponsors.
Interested in becoming a corporate sponsor for Health Rising? Find out more here.
Cortene Update – Part III of the Cortene blogs has been delayed – not because of problems with Cortene, but because of problems with me in the form of another cold (second one this year) – which has left me behind. I apologize for the delay and any anxiety it may have caused. The blog will hopefully be out in a couple of days.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.