Marly Silverman, from Pandora along with other organization members of the coalition for ME have organized a petition for the CDC to change their flawed 5 year plan. Stop researching false illness beliefs, stop researching childhood adversity. Patients need real science, real treatment and stop the legacy that Simon Wessley and Bill Reeves have planted in all of our doctor's brains.
Here is the petition text:
And here is where you need to sign. Don't forget to leave a message and tell them what you think of them, and the impact their decisions have had on you and your family.
Here is the petition text:
Urge Dr. Elizabeth Unger to Change CDC Research of ME/CFS
Greetings,
On Dec. 6, PANDORA and ten other ME/CFS patient organizations sent a letter to newly-appointed CDC chief of the Viral Diseases Branch, Dr. Elizabeth Unger. I urge you to direct her to implement the following changes to the way that agency conducts ME/CFS research:
1) Accept the invitation from patient organizations to an open dialogue through quarterly meetings, where they can inform you of how CDC policies affect patients and their quality of life, and where you can educate the patient community on the reasons for decisions made by the CDC in relation to this disease. PANDORA’s 2009 response to the CDC’s request for input to the 5-year Strategic Plan, as shown on their website, is a good starting point for discussions.
2) Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.
3) Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. The CDC should use the increasingly more popular and scientifically well-received Canadian Case Definition for its current and planned 5-year strategy.
4) For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow. AIDS is a great example of this. In-hospital studies are best conducted in facilities trained and dedicated to the treatment of ME/CFS patients.
5) Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research centers. This is the principle behind the NeuroEndocrineImmune Center promoted by PANDORA and recommended by the New Jersey Legislature.
6) Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, “chronic fatigue syndrome,” rests with the CDC because that is where the current name originated. Invite input from patient organizations, leading ME/CFS researchers, and recognized ME/CFS clinicians in choosing a new name that reflects the pathology and not just one symptom.
7) Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness. Provide current evidence-based information on diagnosis and management of ME/CFS to health care providers, persons with ME/CFS, caregivers, and evaluate associated outcomes.
8) Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.
9) Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.
You have the power to repair, restore, resolve and get it right.
1) Accept the invitation from patient organizations to an open dialogue through quarterly meetings, where they can inform you of how CDC policies affect patients and their quality of life, and where you can educate the patient community on the reasons for decisions made by the CDC in relation to this disease. PANDORA’s 2009 response to the CDC’s request for input to the 5-year Strategic Plan, as shown on their website, is a good starting point for discussions.
2) Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.
3) Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. The CDC should use the increasingly more popular and scientifically well-received Canadian Case Definition for its current and planned 5-year strategy.
4) For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow. AIDS is a great example of this. In-hospital studies are best conducted in facilities trained and dedicated to the treatment of ME/CFS patients.
5) Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research centers. This is the principle behind the NeuroEndocrineImmune Center promoted by PANDORA and recommended by the New Jersey Legislature.
6) Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, “chronic fatigue syndrome,” rests with the CDC because that is where the current name originated. Invite input from patient organizations, leading ME/CFS researchers, and recognized ME/CFS clinicians in choosing a new name that reflects the pathology and not just one symptom.
7) Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness. Provide current evidence-based information on diagnosis and management of ME/CFS to health care providers, persons with ME/CFS, caregivers, and evaluate associated outcomes.
8) Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.
9) Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.
You have the power to repair, restore, resolve and get it right.
[Your name]
And here is where you need to sign. Don't forget to leave a message and tell them what you think of them, and the impact their decisions have had on you and your family.
