News

Sunday Conversations - March 17, 2024

Details: Last Updated: 28 March 2024 28 March 2024

“Dysautonomias 101: More Than Just POTS”

Sunday, March 17, 2024, 4 p.m. Eastern Time

Peter Cariani, Ph.D.

Hayla Sluss, Ph.D

“Dysautonomias” refers to the generic term encompassing all disorders of the autonomic nervous system. In this edition of Sunday Conversations, Peter Cariani, Ph.D., gave a brief overview of the autonomic nervous system and what can go wrong. He also described the role of dysautonomias in ME/CFS, FM, and other chronic conditions, what causes these conditions to be self-sustaining, what medical specialties treat dysautonomias, and added his own thoughts about diagnosis and treatment. Hayla Sluss, Ph.D., presented symptoms and accommodations.

Patient Services - Request for Healthcare Provider Recommendations

Details: 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 - February 18, 2024

Details: Last Updated: 10 February 2024 10 February 2024

Sunday Conversation for February:

Small Group Discussions

"Living with co-morbidities or other serious illnesses"

Sunday, February 18, 2024, 4 p.m. Eastern Time

Please join us for small group discussions on living with ME/CFS and common co-morbidities or other serious illnesses. We will divide into groups based on age/stage of life: Young Adult, Adult, Seniors/Aging, or Ally/Caregiver, wherever you think you fit!

This topic was suggested by several respondents in our recent survey!

**Registration closes one hour before the event begins, so register now!**

Thank You!

Details: Last Updated: 06 December 2022 06 December 2022

On behalf of the Massachusetts ME/CFS & FM Association, THANK YOU FOR YOUR SUPPORT. You will receive an email detailing your contribution.

As you may know, the Massachusetts ME/CFS & FM Association is one of the oldest all-volunteer patient organizations in the United States. Founded in 1985, our Association is committed to serving the needs of ME/CFS and Fibromyalgia patients, their families, and their loved ones. All donations received are used to provide the resources needed in order to accomplish this important work.

Membership benefits include support groups, free entrance to all events and lectures sponsored by the Association, and travel support for advocacy and conferences. Additionally, members automatically receive our e-newsletter which is generally published on a monthly basis.

As a member, please feel free to Contact Us at any time with any questions or issues you might have. In the event you need patient services, we will refer your request to one of the volunteers who work so hard to help our members as best they can.

We are always looking for volunteers to help, for as little as two hours per month. If you have an interest in this area, please visit our website's Volunteer page and let us know how you or your family members can participate.

Again, thank you for your support of the Association.

Together We Can Make A Difference!

Our EIN is 04-3014644. All contributions are tax-deductible to the extent provided by law. No goods or services were provided in return for a contribution. A printed copy of your emailed receipt can serve as receipt for tax purposes.

ME/CFS: Changing the Narrative - Recording Available

Details: Last Updated: 03 November 2023 03 November 2023

Ed Yong is a celebrated science journalist who cares deeply about accurate, nuanced, and empathetic reporting; clear and vivid storytelling; and social equality. His coverage of ME/CFS and Long COVID for The Atlantic has been groundbreaking, and has contributed to a changing public perception of these illnesses, moving us toward a public health agenda that recognizes the serious nature and commonalities of infection-associated chronic conditions, and supports advances in research and clinical care.

Mr. Yong shared with us how he came to the subject of ME/CFS and long COVID and what has motivated him to dig so deeply and tenaciously into them. He explained how he chose sources to interview and how he prepares for those interviews. We heard his thoughts on what is yet to be explored about ME/CFS from a journalistic perspective, and how science journalism contributes to changing perceptions.

Mr. Yong is a Pulitzer Prize-winning science journalist on staff at The Atlantic. In addition to his work for The Atlantic, Yong’s writing has been featured in National Geographic, The New Yorker, Wired, The New York Times, Nature, New Scientist and Scientific American. He is the author of two New York Times bestsellers—An Immense World, about the extraordinary sensory worlds of other animals; and I Contain Multitudes, about the amazing partnerships between animals and microbes.

Visit Ed Yong's website to learn more and sign up for his newsletter.

This event was part of the Association's 2023 Annual Meeting of the Membership.

Hot Topics 1

Page 3 of 19

Start
Prev
1
2
3
4
5
6
7
8
9
10
Next
End