|PANDORA Sponsors Unprecedented Washington Post Advertisement|
PANDORA took the lead in supporting the patient-driven advertising campaign alerting the public to a recent discovery concerning ME/CFS. This ad reflects the patients' voice as shown by a majority voting for this one from a total of four samples. It has brought international attention through the MCWPA press release. That press release has since been translated and distributed in French, Dutch and Spanish, thanks to Cathy Van Riel.
|This bold ad covered 1/2 of a page in the Main|
section of the Dec. 6 issue of The Washington Post.
Readers couldn't miss it.
"This starts a new era of patient-backed advocacy," says the RMCFA December newsletter. "We will fight for awareness and research for these devastating illnesses."
In addition to the ad and the press release, patient Jan Laverick's photo was displayed at Times Square with a caption showing ME/CFS patients are invisible no more. A similar display was shown in Las Vegas. The photo and caption was displayed multiple times. This is a huge step forward in educating the public on the true nature of ME/CFS. That photo is striking and compelling. The MCWPA collaboration is a big accomplishment shared by the patients who donated money and volunteered their time, effort and expertise.
Other organizations have also helped with donations and other resources. Some sent out their own press release.
These other supporting organizations include R.E.S.C.I.N.D., Vermont CFIDS Association, Inc., RMCFA and the Wisconsin ME/CFS Association, Inc., Phoenix Rising, CFS Solutions of West Michigan and CFSknowledgecenter.com.
And many other patient groups and organizations helped us spread the word before and after the ad was published. You can see some success stories here.
Look for more exciting news about the grassroots group, ME/CFS Worldwide Patient Alliance, soon.
One Voice, One Community, One Cause (TM)
|Dept. of Veterans Affairs Taking Comments|
|Dec. 17 is the deadline for turning in comments about a proposed change in the designation of "medically unexplained chronic multi-system illnesses associated with service in the Southwest Asia theater of operations for which there is no record during service." According to the article in Veterans Today, "This is a notice that deserves attention by all veterans and veterans' organizations." |
The issue centers around whether functional gastrointestinal disorders should be included in the "presumption of service connection" if it is developed after the service.
|Proposed Fibromyalgia Diagnostic Criteria Not Welcome by All |
In May, a study in the American College of Rheumatology recommended changing the fibromyalgia diagnostic criteria. Yet, this has not been welcomed by all patient organizations.
|The tender points test,|
in use since 1990, may be
replaced by a new diagnostic criteria for fibromyalgia.
The suggestion is to use a patient-reported point system that determines pain severity in different areas of the body in the seven days prior to the doctor's visit. It also includes the severity of patient-reported fatigue, cognitive problems, headaches and other symptoms. The suggested diagnostic criteria still includes blood tests to eliminate other possible illnesses as the cause of the symptoms.
While many patients find the painful tender points test an unpleasant part of their visits to physicians, others are concerned this shift to emphasizing self-reporting symptoms may move fibromyalgia from the objective to the subjective. Many rheumatologists who suspect a patient has fibromyalgia will slyly test for a reaction in the tender points areas without telling what they are doing, making sure the reaction is natural and not contrived.
Yet, criticism of the tender points test has been that it focuses only on the pain to the exclusion of other symptoms associated with the disease. According to the Massachusetts CFIDS/ME & FM Association website, "Many primary care physicians have been avoiding tender point examinations, or if the exams were performed, they might often have been done incorrectly." Some are suggesting that maybe the tender points test is not as effective in diagnosing men with the disease.
Yet, the National Fibromyalgia Association says about the tender points test: "the procedure should not be looked at any differently than learning and executing a neurological examination which, unlike the FM tender point examination, is taught to all physicians during medical school." The concern is that the proposed new diagnostic criteria may bring back the idea that fibromyalgia is psychological instead of neurological. See their official statement here.
The tender points test requires the person to have pain in 11 of 18 particular spots in the body. Most of these spots are right next to joints, while not in the joints.
|FDA Advisory Committee Recommends Deferral|
|On Dec. 14, the FDA Blood Products Advisory Committee recommended that potential blood donors be asked if they have been diagnosed with ME/CFS, reports the Wall Street Journal. If the individual says yes, then the recommendation is that the person not be allowed to donate blood. |
The committee considered evidence of whether recently-discovered retroviruses are the cause of ME/CFS. According to published reports, some committee members are not convinced that XMRV or MLV causes ME/CFS, but the nature of the disease indicates it could be caused by a virus. At a 9-4 vote, the committee decided to act prudently.
This is exactly what PANDORA urged in a letter sent to the committee prior to the meeting. Although current FDA policy asks if potential donors "feel well," the relapsing and remitting nature of the illness shows that more needs to be done to protect the public in light of the link to these retroviruses.
On Nov. 14, PANDORA sent a letter to the American Red Cross urging them to not repeat the mistakes seen with HIV in the 1980s. They need to be proactive. PANDORA received a letter from an American Red Cross spokesperson, Stephanie Miller, saying they recognize that their policy on deferring ME/CFS patients needs to be more prominent, one of the main points in the PANDORA letter. On Dec. 3, the American Red Cross issued a statement of their policy.
The copy of the MCWPA ad was sent to the FDA committee also, putting them on notice that the patients are not shy about alerting the public to government actions.
As stated in the PANDORA letter to the committee, if the FDA bans ME/CFS patients from donating blood, other government agencies, clinicians and researchers will be led to creating a universal and more definitive diagnostic criteria. This will also lead physicians to recognize the biological nature of this illness.
The FDA has in its hands the power to spur more research funding and bring credibility to millions of patients who have suffered from bias for decades. Be assured, PANDORA will continue to look for opportunities to advocate for improved quality of life for all who have NeuroEndocrineImmune disorders.
|Autoimmune Reaction Possible in GWI|
|Miami's own Dr. Nancy Klimas, a well-known AIDS, ME/CFS and Gulf War illness clinician and researcher, is included in the list of authors of a study that indicates GWI may include an autoimmune response. |
Similar to some recent studies of ME/CFS patients, they examined how the immune system responds to exercise in people with GWI. While science takes time and multiple studies, PANDORA is pleased to see researcher interest in this disease. Every study helps to move us forward in understanding GWI and other NeuroEndocrineImmune disorders.
|PANDORA Communications Director Featured on RMCFA Website|
|In September, former newspaper editor Tina Tidmore joined PANDORA as the communications director. Since then, she has been put to work with writing a new brochure, attending a conference, writing letters and press releases and more. To see more about her philosophy on advocacy, go here. |
With such great success in the Chase Community Giving project, we feel that we can work together and do more. So....
Let's Do it Again!
American Express is offering $200,000 to five different charities every three months. People vote for their favorite charities once a week. The next three-month round of voting starts on Jan. 1, 2011, but they are accepting nominations for that period now. To be eligible, a non-profit organization must be nominated by many people, meet the American Express requirements and be approved by the TakePart Advisory Board.
- being operationally stable
- Having a presence across the United States
- Having a clear and meaningful mission
- Having a broad support base
- Serving diverse audiences
To read complete information on the American Express Project, go here.
We can't pass up a chance at $200,000.
Go here to fill out the nomination form.
Be sure and enter the full name: Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy, Inc. For step-by-step instructions and a specific suggestion for the comments window, go here.
After nominating PANDORA, we encourage you to do the same for other patient organizations.
|Petition to U.S. Secretary of Health|
By popular demand, we have set up a "sister" petition on Change.org asking US Secretary of Health & Human Services, Kathleen Sebelius,
to meet with PANDORA concerning funding for the NEI Center(TM). We were surprised to find people signing the petition within minutes of our posting it. If you have not signed the petition we have on Facebook and are not on Facebook, then please sign this other petition here.
NOTE: if you have already signed the petition on Facebook, please do not sign this sister petition. This sister petition is for those who do not use Facebook.
As of November 10, the Facebook petition had 1,833 signatures.
Sign the Facebook petition here...
|NEI Center™: Our mission statement|
The NeuroEndocrineImmune (NEI) Center™ is a community patient-driven grass roots project of P.A.N.D.O.R.A, in partnership with the Lanford Foundation-Lifelyme, Inc.
It is the first research center to incorporate biomedical engineering scientific and clinical research, and integrating patient computer aided disease diagnosis and treatment (CADDT) specifically designed for multi-system illnesses and complex diseases.
To read the entire mission statement and for more information, go to P.A.N.D.O.R.A.'s Facebook Cause Page for the NeuroEndocrineImmune (NEI) Center™.