- Last Updated: 03 February 2022 03 February 2022
Dear fellow patient, family member, friend, or provider,
My name is Ken Casanova and I am the patient services coordinator for the Mass. ME/CFS & FM Association – and a fellow patient.
As you know, finding a physician or other health care provider knowledgeable about these illnesses is, next to the illness itself, one of the most daunting tasks a patient and family can face.
Our Association has compiled a database, largely based on patient reports, of physicians and other providers from which we can refer patients for illness evaluation and treatment. The database consists of infectious disease doctors, neurologists, endocrinologists, sleep specialists, pediatricians, primary care physicians, integrative physicians, psychologists/therapists - as well as alternative practitioners.
We recommend doctors who will document disability to Social Security or insurance companies.
We need to improve and update our database. Would you tell us of any physicians or other health care professionals who have provided knowledgeable evaluation and/or treatment of ME/CFS, fibromyalgia, long-covid, chronic-Lyme and similar conditions?
Which illness(es) did the provider diagnose and/or treat? What was the specialty and treatment approach of the provider? Was there improvement? How would you evaluate the provider(s), and would you recommend him or her for other patients?
I want to assure you that the information you give us will be kept strictly confidential and anonymous as it is entered into our database. We do not make our database public – it is strictly private. We also are careful not to send too many patients to any one doctor, so as not to discourage the doctor from seeing patients with these illnesses.
Also, if we have referred you to any providers in the past, we would appreciate any feedback on the referrals.
I realize responding will take some effort and energy, but any information you give us – of whatever length – will be of real benefit to other patients. If it’s easier for us to talk by phone, just write me back with your phone number and we will give you a call.
On behalf of patients and our Association, Thank you.
Ken Casanova, Patient Services
- Last Updated: 09 June 2022 09 June 2022
Congressmen Jim McGovern (D-Massachusetts) and Jamie Raskin (D-Maryland) visited with researchers studying ME/CFS (myaglic encephalomyelitis/chronic fatigue syndrome) and Long Covid (LC) at the University of Massachusetts Chan Medical School in Worcester, Massachusetts on June 1, 2022.
This exciting visit was organized by the Selin Lab at UMass and ME advocate Rivka Solomon, in conjunction with the Massachusetts ME/CFS & FM Association. Fourteen people attended this private meeting, both virtually and in-person.
- Last Updated: 25 June 2022 25 June 2022