MassME Letter to NIH RECOVER Clinical Trials

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Last Updated: 07 April 2023 07 April 2023

 RECOVER_Trial_letter_re__PEM.pdf

Sunday Conversations - November 19, 2023

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Last Updated: 27 January 2024 27 January 2024

"What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness"

Sunday, November 19, 2023, 4 p.m. Eastern Time

Helen McGunnigle

Helen McGunnigle is a graduate of Hampshire College where she studied pre-medical sciences and conducted an ethnographic study of college students living with contested chronic illness (including chronic or post-treatment Lyme disease syndrome, ME/CFS, and fibromyalgia) for her senior thesis. In this Sunday Conversation, Helen highlighted the findings from this research project, exploring the early histories of these illnesses and what exactly makes them so contested. Following the discussion, she lead a conversation on the impacts of living with chronic illness.

Read more: Sunday Conversations - November 19, 2023

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness - Winter 2024

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Last Updated: 05 February 2024 05 February 2024

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness

*Please Note: Due to professional licensing issues, you must be a Massachusetts resident to attend this group

Join us on Thursday nights @ 7:00 pm and Tuesday afternoons @ 3:30 pm ET.

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

There is one registration for the entire session.  Once registered, you are welcome to attend as many meetings as you like.

Winter Session Dates:

Thurs.  Jan 18th at 7pm
Tues.  Jan 30th at 3:30pm
January monthly Topic: Communicating about disability and chronic illness 

Thurs. Feb. 15th 7pm
Tues. Feb. 27th 3:30pm
February monthly topic: Navigating dating/romantic relationships 

Thurs. March 7th 7pm
Tues. March 19th at 3:30pm
March monthly topic: Self advocacy/accommodations for disability 

This group is free for members, with any donations to offset costs welcome. A contribution of $25 or more will include annual membership.  

What age is Young Adult?

Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.

To Register, please fill in the form or confirm your pre-filled information below, and then click the Register button.

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 - September 17, 2023

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Last Updated: 13 September 2023 13 September 2023

CANCELLED !! (as of 9/13)

"Understanding Long COVID: Clinical Approaches and Relationship to ME/CFS"

Sunday, September 17, 2023, 4 p.m. Eastern Time

Jason Maley, MD
Program Director, Critical Illness and COVID-19 Survivorship Program

In this edition of Sunday Conversations with MassME, Jason Maley will discuss what is known to date about the biology of long COVID, the approaches taken in caring for long COVID care in existing clinics, and what is known about the overlap between ME/CFS and long COVID. A recording will be available after the event.

Jason Maley is an Assistant Professor of Medicine at Harvard Medical School and is a Lecturer at the Massachusetts Institute of Technology. He works as a pulmonary and critical care physician and is director of the Critical Illness and COVID-19 Survivorship Program at Beth Israel Deaconess Medical Center in Boston.

The Critical Illness and COVID-19 Survivorship Program was launched in 2021 and is one of only a few in the country to integrate a broad multi-disciplinary team of medical experts to treat patients with persistent symptoms, which are also described as "long-COVID" or "post-acute sequelae of COVID-19 (PASC)." The program is open to anyone experiencing long-COVID symptoms regardless of where they were treated for their initial COVID-19 illness. Patients are initially scheduled for a telehealth visit, and eventually an individual plan is developed for each baptient based on their main deficiencies. More information can be found at the program website at https://www.bidmc.org/centers-and-departments/pulmonary-critical-care-and-sleep-medicine/services-and-programs/critical-illness-survivorship-program

This event has been cancelled due to a conflict. There will be no Sunday conversations on Sunday 9/17. Please stay posted for an updated date for Dr. Maley's presentation!