CFSAC Public Comment - Elizabeth Potter, January 2017

RE: Stigma associated with this illness… Public Comment at CFSAC, January 12, 2017

I am Elizabeth Potter, a member of the Massachusetts CFIDS/ME & FM Association.

On May 20, 1985, working at Wang Laboratories as a Senior Systems Analyst, I fell asleep at my desk while typing detailed specifications. When a colleague woke me for the third time in fifteen minutes, I knew something was very wrong! I needed to go home. That became my last day of work.

Within days, my credibility as a respected team leader headed for management ended, replaced by perceptions of hypochondria. I slept 16-18 hours a day as my cognitive functioning rapidly deteriorated. My PCP offered no help and neglected to record my numerous concerns.

Fortunately in 1987, I found a holistic internist familiar with my condition. He gave it a name—Chronic Fatigue Syndrome—and with compassion, helped me to begin to manage my symptoms and he kept meticulous notes.

After five years and two denials, I finally obtained SSDI—a process that significantly reinforced the validity of my condition. Thus when my husband filed for divorce, I assumed I was well armed to receive a fair settlement. Likewise, when my disability insurance provider suddenly cut me off, I felt confident my benefits would be reinstated. In both cases, I lost.

For nearly 32 years, I have lived with the stigma of this serious illness that many still refuse to acknowledge. Financially, had I received fair settlements in both proceedings, I would have the benefit of 2.5 million dollars entering my retirement years and I would still own my home! I was betrayed by my attorneys who failed to believe I was truly ill, and the insurance company that wrongfully broke our contract. The former should be sued for malpractice; the latter for breach of contract. By the time I had recovered enough strength to meet the requirements for filing a complaint; the statute of limitations had long expired. Both the lawyers and the insurance company are protected by the statute of limitations, but who protects me?

Recently, I compiled over 75 symptoms that waxed and waned that I endured for years. Chronic physical pain was sometimes excruciating to the point of tears. Physical de-conditioning created nerve pain, since my muscles could no longer support my vertebrae.

Without comprehensive, stakeholder-approved education, ME/CFS sufferers remain vulnerable to the whims of uninformed experts.

About the Community Letter to the CDC

Eleven patient organizations and 52 individual advocates have called for CDC to remove recommendations for GET (Graded Exercise Therapy) and CBT (Cognitive Behavioral Therapy) from the CDC's ME/CFS website.

Read the community letter.

Last year, following David Tuller’s investigative report outlining the grave problems with the PACE trial, twelve U.S. organizations wrote a letter to the CDC calling for the removal of recommendations and statements based on PACE and similar studies.

One year later, CDC’s website still includes recommendations for CBT and GET along with statements and references based on a psychogenic disease theory and studies using the discredited Oxford definition. This guidance is misleading doctors about the nature of the disease and causing physical harm to patients. Accordingly, ME/CFS patient organizations and advocates are calling on CDC to immediately remove this information.

In CDC’s response to the November 2015 community request to remove this information, CDC stated that it was conducting an initiative to update its medical education materials with the most recent information. However, CDC has since stated that that initiative will only update the diagnostic portion of CDC’s website, not the treatments section. No date has been provided by which the treatments section will be updated. Further, CDC has refused to remove statements and references based on the psychogenic disease theory and Oxford definition, such as those posted on CDC’s Science Clips in February of 2016.

Yet, the evidence against these recommendations and psychogenic views is overwhelming.

Collectively, the reports from the National Academy of Medicine (NAM) and NIH’s Pathways to Prevention and the AHRQ Evidence Review have decisively rejected the psychogenic disease theory and called for the Oxford definition to be retired because it includes patients with other conditions and can cause harm. Further, the AHRQ Evidence Review Addendum stated that there was no evidence for GET and barely any for CBT once Oxford studies were removed. Reanalysis of PACE has demonstrated that its claims of treatment effectiveness were hugely overinflated. Finally, patient surveys and the recent article by Tuller have reported harm to patients from these treatments, a predictable adverse effect given the systemic intolerance highlighted by the NAM report.

CDC’s continued inclusion of this information is scientifically indefensible and medically unethical. To protect patients from further harm, we are demanding that CDC take immediate action to remove such information from the CDC CFS website, the CDC Science Clips website, and all other CDC websites that post information about ME/CFS.


Congressional letter to NIH has 55 House member co-signers

A letter to NIH Director Dr. Francis Collins supporting ME/CFS research and calling for a report to Congress, sponsored by Representatives Zoe Lofgren and Anna G. Eshoo of California, got 55 House member signatures and was sent to Dr. Collins today. This effort was led by a collaboration between #MEAction, Solve CFS/ME Initiative, and a number of other advocates and patient groups including Massachusetts CFIDS/ME & FM Association. This was a bi-partisan effort, and received support from over 10% of members of Congress, certainly a very strong showing! Congratulations to all on this successful outcome.

Read the full press release

See the letter with all signatures

New England Representatives who signed the letter are:

Massachusetts: Joseph Kennedy III, Katherine Clark, James McGovern
New Hampshire: Frank Guinta
Maine: Chellie Pingree
Connecticut: Elizabeth Esty
Vermont: Peter Welsh

If you live in one of these districts, please send your Representative a thank you note!

USAWG submits testimony to Congress

April 15, 2016. Massachusetts CFIDS/ME & FM Association has endorsed Outside Witness Testimony to Congress, prepared by the U.S. Action Working Group (USAWG) and filed today with the House and Senate Appropriations Committees.

The Testimony provides members of the Committees with information about ME/CFS and makes the following funding requests:

  • CDC: Restore funding for ME/CFS in FY17 budget - $6 MM
  • HHS/Assistant Secretary for Health – Office of Women’s Health: Continue funding for Chronic Fatigue Syndrome Advisory Committee - $300,000
  • NIH: Follow through on recent statements to patients by providing significant and specific funding for ME/CFS research, including RFAs

 Read the complete Testimony here (House) and here (Senate).  

The U.S. Action Working Group is a coordinating committee for a number of non-profit organizations and patient/advocates working to advance research on the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).