|Bob Miller skydiving for ME on May 12|
What a year this has been for the ME/CFS community!
With four major conferences held in the US, the UK, and Australia, the inauguration of two new research and treatment centers, the first FDA meeting to discuss drug development for ME/CFS, fireworks at the CFSAC, the still unabated IOM controversy, an unprecedented consensus from the top 50 ME/CFS experts, two exciting new documentary projects, and an upsurge in advocacy efforts, this has been a year to remember.
Meetings: FDA Developments and Fireworks at CFSAC
The FDA held its first ever ME/CFS workshop, Drug Development for Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME and CFS), April 26 and 27, 2013 in Washington, D.C. The first day of the meeting was titled “Disease Symptoms and Daily Impacts That Matter Most to Patients” and featured presentations by patients, including Dr. Jon Kaiser, Joseph Landson, Charlotte Von Salis, Tasha Kelemen, Matina Nicholson, Mary Schweitzer, Mindy Kitei, and many others. Patient advocates Mary Dimmock, Dr. Janet Smith and Denise Lopez-Majano also described how the illness has affected their family and friends. ME/CFS physicians and researchers Dr. James Baraniuk, Dr. Charles Lapp, Dr. Steven Lempert, Dr. Judy Mikovits, Dr. Derek Enlander and Dr. Dan Peterson addressed the necessity of developing treatments, even if the cause remains unidentified. (You can read about the first day of the FDA workshop HERE.)
The second day of the FDA development workshop for ME/CFS focused on clinical trial design, outcome measures, regulatory issues and possible pathways to expedite drug development for CFS and ME, as well as the development of clinical trials. (You can read about the second day of the FDA workshop HERE and HERE.)
The May 22-23 CFS Advisory Committee (CFSAC) meeting was held, as usual, in
Conferences at Home and Abroad
On January 26, The Institute for Neuro Immune Medicine hosted a patient conference about Gulf War
|Nancy Klimas (center) and staff|
On May 31st, Invest in ME, a UK charity, held its 8th annual conference to explore biomedical research into ME. This year's conference, titled "Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis,” featured a roster of noted physicians and researchers: Dan Peterson and Andreas Kogelnik, who shared the keynote address; Mady Hornig on pathogen discovery in ME; Olav Mella and Oystein Fluge speaking about Rituximab, and more. (For a full program of presentations go HERE. Read Mark Berry's excellent report on this fascinating conference HERE.)
|Dr. Derek Enlander|
The 2nd International Symposium for CFS/ME was held on December 2nd, in conjunction with the opening of the National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University. Hugh Perry (Southampton, UK) gave the inaugural Alison Hunter Memorial Foundation address, including a
The secret attempt of CSFAC in January to shorten (and alter) the wording of the list of priorities led Jennie Spotila to contact Public Citizen, a watchdog non-profit that has litigated cases under FACA in the past. Public Citizen sent a letter of protest to the Acting General Counsel of HHS on February 14, 2013. The letter points out that the FACAviolations deprived “Ms. Spotila and the public generally of important rights to write a letter calling for an immediate investigation into threats made against three members of the CFS Advisory Committee (CFSAC).
HHS dealt with the demand for an investigation with characteristic torpor. After more than four months, Assistant Secretary Dr. Howard Koh finally responded to the request for an investigation with the statement that “Dr. Nancy C. Lee has authority to engage in private conversations with individual members of CFSAC.” After finding Dr. Koh’s letter “completely unacceptable,” Mary Dimmock wrote a second letter to HHS demanding an investigation. As of this writing, the matter is still unresolved.
At the end of 2013, I am sad to report that Karina Hansen, a 24-year-old severely ill ME patient, is still
New Research and Treatment Centers
Griffith University (Australia) opened a new facility, the National
New ME/CFS Film Projects
Ryan Prior’s documentary film project, The Blue Ribbon:
Jennifer Brea, winner of ProHealth’s 2013 Advocate of the Year Award, raised an impressive $210,000 for her full-length
Prediction for 2014
2013 was a year we will all remember, because it was marked by rising expectations. The FDA meetings seemed to signal a renewed interest on the part of the federal government to help ME/CFS patients in our quest for effective treatment, as did the acknowledgment that it was a serious and debilitating disease. The building – and dashing – of those expectations has sparked an outpouring of advocacy efforts unprecedented in recent years. Jeannette Burmeister’s call for the approval of Ampligen, citing “unequal treatment” regarding FDA’s rapid approval of Bexsero vaccine for a Princeton students, is another step along the path we will surely continue to take in 2014.
My prediction for 2014 is that it will be the “Year of the Advocate.” 2014 marks the 30-year anniversary of the Incline Village outbreak, the epidemic that saddled us with the name “chronic fatigue syndrome.” It is clear that those who have been ill since the 1980s have run out of patience. Cort Johnson’s recent analysis of HHS’s lack of commitment to people with ME/CFS is a harbinger of things to come. In the following months there will be more protests, more petitions, more demands for funding, and more exposes of government neglect.
What is truly astonishing, is that after 30 years of being blacklisted, after watching our young people with ME thrown into psych wards, after having research funds “redirected,” after the insults, the derision, the blatant dismissal of an illness which has robbed us of our lives – we are still here, still fighting to make our voices heard … still undefeated.
Originally published on ProHealth.