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September 2015

Research 1st News | September 2015

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Charles Darwin lived in miserable health and debilitating fatigue until his death at the age of 73. It is quite ironic that one of the most recognizable names in the history of science, famed for his theory on “the origin of species,” was baffled by the origin of his own affliction. Darwin’s physical dysfunction was at times so incapacitating that it caused him extreme depression as well as a dying sensation. In his 50s, Darwin also experienced transient, yet immobilizing, paralysis with exertion in addition to frequent memory loss and difficulties in verbal expression—not unlike what is referred to as post-exertional malaise and “brain fog” in ME/CFS vernacular.

He often shunned company during severe episodes, at times for days on end, as many in our community are forced to do. Not even Darwin’s access to his elite network of fellow scientists or the best medicine of his time could explain the underpinnings of his symptoms or provide him relief. An English psychiatrist, Dr. John Bowldy, concluded that Darwin’s illness must be psychosomatic! Bowldy argued that Charles was still grieving the loss of his mother, who passed away when he was 8. Yet historians never described a grief-stricken Darwin, nor did he in his own autobiography.

Instead, what was verifiably documented is a slew of physiological and biochemical abnormalities like dysotonomia, visual disturbance, gastric dismotility, abdominal pain, muscle wasting, lactic acidosis, peripheral neuropathy, tachycardia, dizziness, seasickness, nausea and severe headaches. All clinical manifestations that bear striking resemblance to the spectrum of ME/CFS symptoms and associated morbidities including POTS. Read More...

Yours,

Zaher Nahle
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

RESEARCH ROUNDUP

 

Update on CDC ME/CFS Funding

As we recently conveyed to our community, the $5.4 million in CDC funding for ME/CFS has been stricken from the Senate’s version of the 2016 federal budget. ME/CFS was the only disease to be reduced to $0.

The Solve ME/CFS Initiative played a key role in spreading the word about this funding threat, which would mean that a monumental multi-year, multi-site CDC ME/CFS study would have to be truncated prematurely. Our organization and others encouraged patients to contact the key staff members who serve the Senators on this budget committee to urge them to restore the funding in the 2016 budget. Patients sent hundreds of emails to the staff members, who heard our community’s voice loud and clear.

TO READ MORE, GO HERE 

 

Carol Head Speaks at CFSAC Meeting

The Chronic Fatigue Syndrome Advisory Committee held a two-day public meeting in Washington, D.C., Aug. 18-19.

Solve ME/CFS Initiative President Carol Head had the opportunity to deliver brief remarks as part of the two-day agenda, given our organization’s role as a non-voting member on the committee.

In her remarks, Head addressed the inherent and to date insurmountable challenge of fitting the “huge round peg ” of ME/CFS patient need into the extraordinarily small square hole of National Institutes of Health funding. “The fundamental disconnect is that process doesn’t work for this illness,” she said.

TO Read More, GO HERE 

NEWS AND EVENTS

 

SMCI Interviews Musician, ME Patient Stuart Murdoch

The Solve ME/CFS Initiative recently caught up with Stuart Murdoch, lead singer of the band Belle and Sebastian, while he was in Los Angeles performing as part of a world tour. Belle and Sebastian is an indie band from Glasgow, Scotland. The band just released its ninth album, “Girls in Peacetime Want to Dance,” in January 2015. ​

In the interview, Murdoch talks openly about his experience with Myalgic Encephalomyelitis, which left him bedridden for several years. Murdoch says it was when he was bedridden that he discovered his ability to write songs and that the songwriting served as a foothold for him as he climbed out of the worst part of the illness.

TO READ MORE AND WATCH THE VIDEO, GO HERE.

 

Carol Head Quoted in MedPage Today

Solve ME/CFS Initiative President Carol Head was quoted in a recent article, “Chronic Fatigue: A Call for Real Answers to a Real Disease,” which was published in MedPage Today. Head was contacted for the article following her remarks at the Aug. 18-19 Chronic Fatigue Syndrome Advisory Committee meeting in Washington, D.C.

In the article, Head addressed the pressing need for greater awareness and understanding of the disease among healthcare professionals. "I can think of few things that would do more to lighten the burden for [ME/CFS] patients than to have every physician believe it's real," she said.

TO READ MORE, GO HERE.

NEWS AND EVENTS

 

SMCI Launches Humans of ME/CFS Website

The Solve ME/CFS Initiative has launched a website to help increase awareness of, and ultimately research funding for, ME/CFS. The website, “Humans of ME/CFS,” is a takeoff of the popular “Humans of New York” photoblog and Facebook page

The site features the faces and stories of those suffering from ME/CFS so that those who are in charge of allocating research funds cannot deny the widespread devastation this disease has inflicted on so many for so long.

We have developed an easy-to-use interface for you to upload your 500-word story and photo to be included on the website. To do so, go here.

To view the new Humans of ME/CFS—HOMECFS—website, go to: HOMECFS.SolveCFS.org

 

ME/CFS Shares Core Features of Major Diseases

The Solve ME/CFS Initiative has created an infographic to demonstrate the severity of the physical symptoms experienced by the millions of ME sufferers worldwide.

The graphic demonstrates that ME/CFS has the core features of major diseases, such as Stage 2 Alzheimer’s, Rheumatoid Arthritis, Multiple Sclerosis, Parkinson’s and cancer after one week of chemotherapy. Unlike ME/CFS, however, all of those illnesses have available FDA-approved treatments and are viewed as debilitating physical diseases by both health care practitioners and the general public.

TO VIEW THE GRAPHIC, GO HERE.

 

NEWS AND EVENTS

 

Dr. Alan Light to Present Oct. 15 Webinar

The Solve ME/CFS Initiative’s 2015 webinar series continues with Dr. Alan Light, Professor of Anesthesiology and Neurobiology and Anatomy at the University of Utah. He received his PhD from the State University of New York at Upstate Medical Center and was a Postdoctoral Fellow at the University of North Carolina-Chapel Hill.

Dr. Light received a Javits Award from the National Institutes of Health for his research on descending control of pain. His current research focuses on the mechanisms of the sensations of muscle pain and fatigue and the plasticity they undergo following inflammation, injury and in functional diseases such as Chronic Fatigue Syndrome and Fibromyalgia.

Dr. Light has previously received research funding from the Solve ME/CFS Initiative.

To register for the free Oct. 15 webinar, which occurs at 1 p.m. Eastern time, go HERE.

 

 

SUPPORT US

 

To support our important work, please visit SolveCFS.org/Donate. Consider joining our Sustainers Circle, where your monthly gift ensures we can move forward toward making ME/CFS understood, diagnosable and treatable. It is donations from people just like you that make progress possible.

Thank You!

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Phone: 704-364-0016
Email: SolveCFS@SolveCFS.org
Address: P.O. Box 36007, Los Angeles, CA 90036-0007

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