The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002.
Its purpose included advising and providing recommendations to the Secretary of Health and Human Services, through the Office of the Assistant Secretary for Health (ASH), on issues related to research, access and care for individuals with ‘ME/CFS’. Every two years, on September 5, the CFSAC charter is renewed for another two years - so it came as a shock to the community when they received notice on Sept 6, 2018 that the CFSAC charter was not going to be renewed. According to the Federal Advisory Committee Management Handbook, several steps are required for renewal of a charter. One step in the process is a decision memo must be sent to the Secretary of HHS from the Operating Division or Staff Div head to the Secretary. The Designated Federal Official (DFO) was Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health. At this time we do not know if Commander Ceinos sent this memo.
MEadvocacy Advisory Committee member, Colleen Steckel, submitted an application in April 2018 to be considered for a position as a CFSAC voting member. Months passed with no updates on the nomination process raising uncertainty about the future of CFSAC.
An email requesting information about the timing of the next CFSAC meeting received the reply that a meeting was scheduled for Dec 11 and 12, but still no word about applicants being contacted for consideration.
As the deadline for the CFSAC charter renewal approached, an email was sent on Aug 28 asking: “Is there any update on the CFS Advisory Committee Charter being renewed? Information on the web indicates it expires in less than 10 days.”
There was no reply to that email request. The only reply that came was the email everyone received on Sept. 6 stating the CFSAC charter would not be renewed.
PERSPECTIVE ON CFSAC
We are grateful for the staunch advocates and volunteers who have worked hard either on the committee or by giving testimony, often to the detriment of their health. They worked toward adoption and promoting education for myalgic encephalomyelitis as described by the experts in the Canadian Consensus Criteria (CCC) and in the International Consensus Criteria (ICC).
One advocate that stands out is Eileen Holderman who served for 4 years as a voting member on CFSAC. She also acted as Chair of CDC Website Review Subcommittee, Chair of the Education and Patient Quality of Life Subcommittee as well as being a member of the Leadership Committee. Eileen consistently stood up for the proper criteria and name for the disease (as per ME experts) even when faced with threats from the committee’s DFO. Eileen and her subcommittee delivered recommendations to bring down the harmful CDC toolkit which was created with the aid of the CFIDS Assoc of America (now known as Solve ME/CFS).
The harmful CDC toolkit taught our doctors that CFS was treatable using Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET). While in 2018, CDC removed the toolkit from their website, they still recommend incremental activity for people with ‘ME/CFS’ - although without the heading of graded exercise. No official retraction of the harmful recommendations of GET and CBT have been made by the CDC resulting in the continued danger of thousands of doctor offices and medical websites around the country (and worldwide) still recommending harmful therapies. This topic has come up repeatedly in CFSAC meetings with no action taken.
Eileen Holderman pushed for CDC to research the 50+ worldwide outbreaks and to study severe ME patients. Here is a video of Eileen in action:
For the effort of Eileen Holderman and all those who fought for proper criteria and name for ME to be used by all HHS agencies, we are extremely grateful.
The outcome has been that CFSAC provided a vehicle for ME stakeholders, advocates and patients to express their voice, but it has been painfully clear that those voices have been ignored and dismissed. The majority of the recommendations brought forth by CFSAC’s voting members were completely disregarded. HHS just forged ahead with their own agenda - disregarding all ME stakeholders, while still claiming they were addressing stakeholder input.
MEadvocacy watched as repeated requests for adoption of ME expert criteria as expressed by the voting committee, advocates and patients were adamantly opposed by the DFO in charge of CFSAC. Recommendations to adopt ME expert criteria was rejected by HHS. These actions prompted many blogs by MEadvocacy and other concerned advocates regarding the neglect of the ME patients by US health agencies.
Some advocates and advocacy organizations have praised the achievements of CFSAC. One of the accomplishments touted as a success is the IOM report. MEadvocacy has long held the position that the IOM promotes the narrative that ME is a “tired after shopping” disease and does not accurately represent the ME patients. See this IOM vs ICC comparison chart to understand how the ICC more accurately portrays ME as opposed to the overly broad IOM definition.
Instead of being a productive interaction between stakeholders and the government, CFSAC essentially became a vehicle for justifying pushing the vague IOM criteria (SEID) for adoption and use across all health agencies (even NIH which would use IOM for research). MEadvocacy and other independent ME advocates adamantly oppose this approach because the IOM/SEID criteria do not describe the distinct disease ME. The IOM/SEID definition ignores the immune and cardiac abnormalities as well as denies the brain inflammation evidence and at the same time will include those suffering from disparate fatiguing conditions.
ADOPTION OF PROPER CRITERIA WILL LEAD TO THE FOLLOWING:
- Proper criteria leads to reevaluation of every CFS patients’ diagnosis
- Proper criteria leads to respect for the severity of ME
- Proper criteria brings awareness about the most severely ill
- Proper criteria leads to proper medical care for ME patients
- Proper criteria leads to an accurate narrative about the severity of ME
- Proper criteria leads to family members understanding the need for ongoing care
- Proper criteria leads to doctors ordering the right tests and providing real treatments
- Proper criteria leads to insurance companies paying for testing and treatments for immune system and cardiac abnormalities
- Proper criteria leads to patients having a smoother process for disability application
- Proper criteria leads to precise research into ME (not into vague fatigue)
- Proper criteria leads to FDA approval of needed drugs
Proper criteria is instrumental in resolving all the issues that have been raised at every CFSAC meeting by patients and advocates.
MEadvocacy has always recommended having a working relationship with our elected officials to make sure they understood the true nature and severity of ME and the lack of respect and recognition this disease is getting throughout our our health agencies.
Educating our members of congress and their staff about the importance of proper criteria by giving them information using expert materials like the CCC and ICC has been a focus of many of our volunteers and supporters. Explaining how the combining of ME and CFS is NOT in the best interest of ME patients has been met with surprise and then understanding, as case after case of neglect and abuse was brought to their attention.
More work needs to be done to make sure those who are in a position to make a difference have a full understanding of the severity of ME symptoms and the ongoing neglect and abuse we deal with on a daily basis due to the use of improper criteria.
Bringing ME patients together to fight for recognition of ME as per the experts is what we’ve always done and will continue to do.
WHAT YOU CAN DO:
1. Sign the #PwME4ICC petition titled: #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC
2. Contact your members of congress and insist that ME is diagnosed and treated as a separate disease and that our health agencies adopt the ICC for those who have ME. (For those who are overseas, we are reaching across the ocean to like minded advocates to help other countries to push for adoption of the ICC.)
Tell your Member of Congress:
- Focus on ME and not CFS (IOM states ME and CFS are two different diseases)
- Push for CDC to educate doctors how to re-evaluate every CFS patient for ME
- An ME advisory committee should not have DFO in women's health because this is not a women's health issue. ME affects men, women, and children.
- Researchers should use ICC, CCC or consider using the tentative definition of ME described by Frank Twisk which clarifies ME as a neuromuscular disease for patient selection.
- Doctor education should be based on the IC primer.
- Patients deserve a proper diagnosis and proper diagnostic label using expert criteria.
These blogs are specifically focused on CFSAC:
Analysis of CFSAC August 2015 Recommendations for the IOM Criteria (Dec 2015)
Eileen Holderman CFSAC Public Comment About NIH Study (May 2016)
Testifying at CFSAC Dec 2017 and Looking for Changes in 2018 (Jan 2018)