Patient Services - Request for Healthcare Provider Recommendations

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Last Updated: 07 January 2023 07 January 2023

Dear fellow patient, family member, or friend,

My name is Ken Casanova. I am a fellow patient, and the coordinator of the Massachusetts ME/CFS & FM Association’s physician/healthcare provider referral program.

Finding a physician or other healthcare provider knowledgeable about these illnesses is, next to the illness itself, one of the most daunting tasks a patient and family can face. Some people spend years before they find a doctor who can help them.

Our Association has compiled a database, largely based on patient reports, of physicians and other healthcare providers that we can recommend to patients for illness evaluation and treatment. The database consists of infectious disease doctors, neurologists, endocrinologists, sleep specialists, pediatricians, primary care physicians, integrative physicians, counselors, physical and occupational therapists, and other specialists. 

Unfortunately, we know of only a relatively few providers who are knowledgeable about the illnesses – or who at least take the patient and the illnesses seriously  and are open to learning.

We need your help in identifying physicians/medical providers – both PCPs and medical specialists, as well as and other healthcare professionals who will do their best to evaluate and treat these illnesses. 

It comes down to this: Have you seen a doctor or other healthcare provider you would recommend to another patient? 

Patients and their families have so far been the best sources of identifying and recommending providers for ME/CFS, fibromyalgia, chronic Lyme, and now Long COVID.By taking a few minutes to fill out our online recommendation form, you will be doing other patients an invaluable service. 

There are thousands of us, and some of us have been lucky enough to find some doctors who care and try to help. By identifying more of these doctors we can lessen the difficulties patients now have in seeing the relatively few doctors we can recommend. 

To access the form go to https://www.massmecfs.org/provider-recommendation-form   Please fill out the entire form (scroll down) with whatever information you can give us. We may wish to follow up with you by phone. We do try to individualize our referrals based on how the providers approach, evaluate, and treat the illnesses. Different patients have individualized needs. 

If you saw a doctor who was biased or non-responsive you also could let us know,  so that we could avoid referring to him or her.

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 try not to send many patients to any one doctor, so as not to discourage the doctor from seeing patients with these illnesses. The more providers we can recommend, the less strain on the current fewer providers. 

We know there have to be providers out there who are open and willing to help, even if they are not experts – perhaps you have found one or a few.Whatever information you can give us will be of real benefit to other patients. 

On behalf of patients and our Association –  thank you!

Sincerely, 

Ken Casanova,  Patient Services

Sunday Conversations - January 22, 2023

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Last Updated: 28 January 2023 28 January 2023

Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig

Sunday, January 22, 2023, 4 p.m. EST

Thank you for joining us as journalist and ME patient Ryan Prior read excerpts from his new book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, released November 2022 by Post Hill Press. He was joined by marketing specialist and Long COVID advocate Cynthia Adinig, whose experiences obtaining treatment are discussed in the book. Rivka Solomon, long-time ME/LC advocate and MassME member, hosted the meeting.

Following the readings, Ryan and Cynthia responded to questions and comments from Rivka and from the audience. The entire program lasted about 75 minutes.

Click here to view a recording of the presentation.

Read more: Sunday Conversations - January 22, 2023