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.
When’s Cortene part 3 coming?
Sorry about the delay! I got smacked by yet another cold which has left me behind on the blogs. It should be out in a couple of days.
Hope you feel better soon Cort! Thanks for all you do for all of us 🙂
Thank u and hope you feel better soon.
Thanks…Health Rising is a labor of mostly love…(sometimes its a labor of frustration 🙂 but what isn’t?) but I can’t imagine doing anything else given the tremendous impact this disease has had on my life. The fact that sponsors like the SMCI, Simmaron, Prohealth, the OMF, Ethica and the HHV-6 Founation enable me to write, work and explore makes me very grateful for their support.
Thank you very much for supporting Health Rising, SMCI!
You have accomplished so much in the last few years and I really like your approach.
Even going back years to the days of CAA, the Chronicle was a welcome source of curated information. I recall the issue (’07/’08?) which first reported on the study by Stevens et al & the 2-day CPET as well as on Dr Chia’s enterovirus study. The Chronicle let me know about the studies and Cort’s articles provided the necessary context and follow-ups. Thank you to both of you!
Having SMCI, Simmaron Research Foundation, ProHealth, the Open Medicine Foundation, The HHV-6 Foundation and ethica.io as sponsors is a testimony to your value in the ME/CFS/FM field.
You and the people working with you deserve their support. As you deserve our support as well.
Often money is tight with this disease, but Healthrising really helped me improve my health. So a small part of the money I save on using less medication goes to Healthrising. Usually I find one should not tell about making donations, but in this case I make an exception.
With the new year fund rising I was really surprised on how low a budget Healthrising does operate and how low a wage Cort pays himself. Healthrising brings better quality info then what the vast majority of doctors can provide, in an easier to understand way and for free. Or better: with optional payment. If a majority of visitors would pay only 10% of what they would pay a doctor for this quality of information, Healthrising could fly even further. Just a thought ;-).
dejurgen
Thanks so much De Jurgen and thanks for your many, many thoughtful comments on the blogs.
Health Rising could do ALOT more. Here’s one idea – the end of ME/CFS and FM (or any disease) is kind of a numbers game: the more people that are involved, the more supporters we have, the more researchers that get interested, etc. The better chance we have of solving these diseases as quickly as possible.
I’m working on an intro to ME/CFS and FM that provides basic information, help in sharing one’s experience with the disease, basic treatment information, the dire need for more funding and advocacy, and research foundations to give money to.
That will go out to every subscriber to the blogs and the Forums. Appended to that effort is a broadscale “How To” effort which will attempt to organize information on all facets of ME/CFS/FM treatments so as to increase our effectiveness in finding treatments and becoming healthier as a community.
Just a 20% increase in our health as a community would reap huge dividends for us in advocacy and funding.
Then being able to advertise – thus drawing more people in – giving them an effective overview of our needs – bringing more people into advocacy efforts and fundraising – that’s one to effectively increase our numbers and our effectiveness and bring about the breakthroughs we need to move forward.
Yes thanks Cort, for your efforts way back to Phoenix Rising & up to now. Back in the 1980s a group of us formed part of the Allergy Association in South Australia (early ME/CFS) and put together a package of “basic information, help in sharing one’s experience with the disease, basic treatment information, the dire need for more funding and advocacy”. We got bombed out with computers, printers, cut & paste, charged a small fee to cover copying & post. So I well know the value of your latest project. Well done. Get better soon. 🙂
Thanks….It is a lot of work – rather daunting really 🙂 but one step at a time as the saying goes.
I hope your salary has increased some with the additional sponsorship Cort. Regardless, the information you gather, interpret and share, thoroughly and objectively is priceless, more than anything it provides hope, which seems so key to improvement, while most of the formal support authorities around the world offer nothing at all.
I keep checking in for the latest blogs, as I cannot believe that with so many sufferers, and with such variability in the disease, a way out cannot be found somehow.
Thanks Steve. I too believe that something will break or is breaking that we don’t as a community know about. Fingers crossed with Cortene, the work Nancy Klimas and Bob Naviaux are doing with treatments will help.
Thank you, SMCI, for supporting Health Rising!!!