• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Email from Dianne Feinstein


But I Look So Good.
Left Coast
Got this today email today from Senator Dianne Feinstein:

Thank you for contacting me regarding the study and classification of Myalgic Encephalomyelitis (ME). I appreciate the time you took to write and welcome this opportunity to respond.

First, please allow me to extend my sympathy to individuals suffering from ME. I recognize that more research is needed in order to improve diagnosis and treatment of this illness.

At its October 3-4, 2012 meeting, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommended that the Secretary of Health and Human Services (HHS) convene a workshop to create a case definition of ME and Chronic Fatigue Syndrome (CFS). In response to this recommendation, the Secretary of HHS has asked the Institute of Medicine (IOM) to convene a study group to evaluate the different definitions of ME and develop diagnostic criteria for this illness. The study group will consider existing diagnostic criteria, including the 2011 ME International Consensus Criteria and the 2003ME/CFS Canadian Consensus Definition, as it establishes its recommendation.

Please know that I have made note of your opposition to the IOM study group. I believe it is important for researchers to take into account the views of patients as they seek to improve care and diagnostic standards, and the IOM has stated that it will consult with ME patients and providers during the study group process. Please know that I will keep your thoughts in mind as I review legislation related to this issue in the Senate.

Again, thank you for writing. If you have additional questions or comments, please do not hesitate to contact my Washington, D.C. office at (202) 224-3841. Best regards.

Sincerely yours,

Dianne Feinstein
United States Senator


Senior Member
NYC (& RI)
I got the same response from a Senator. It's important to point out to them the deception of HHS trying to make it seem that they are doing this in bona fide response to CFSAC's recommendation.