Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Sunday Conversations - February 19, 2023

Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life

Sunday, February 19, 2023, 4 p.m. EST

 

Amy Mooney, MS OTR/L

Sallie Rediske, MPT

Melinda Maxwell, PT

 

Amy Mooney, MS OTR/L, joined us to present an occupational therapist's perspective of pacing for PEM. Amy described the essential strategies of pacing for PEM and created a framework to analyze activity and tasks within the limitations of PEM. Offering the physical therapist perspective, Melinda Maxwell and Sallie Rediske discussed physiological biofeedback strategies of pacing. This OT/PT team offered examples of how the pacing for PEM framework can support pwME and Long COVID as they engage in redefined meaningful and purposeful activities of daily living.

Following the discussion, the panelists responded to questions from the audience. The entire program lasted about 90 minutes.

Materials from the presentation:

Read more: Sunday Conversations - February 19, 2023


February Young Adult Support Groups

 Drop In Support Groups for Young Adults with with MECFS FM Lyme Long Covid and Chronic Illness

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


Tuesday, February 7th, at 3:30 P.M. ET


Saturday, February 18th, at 10:30 A.M. ET

 

Please Note: The meeting on Saturday, January 28th has been rescheduled to Saturday, February 4th at 10:30 A.M. ET.  
If you are already registered, there is no need to take action, we will send you the updated Zoom link.
If you would like to join the meeting on February 4th, click here.

 

These drop-in Zoom Support Groups are interactive and provide a safe space for patients to share stories and experiences, ask questions, and offer one another support.

The groups are run by Kerry Lang, LMHC. Kerry is a MA licensed mental health counselor with experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long COVID and ME/CFS.

Please Note: Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents.

What age is considered 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.

You are welcome to register for one or both sessions. These groups are free for members, with any donations to offset costs welcome. We ask non-members to contribute a $10 fee for each session. A contribution of $25 or more will include annual membership.

 

REGISTER FOR THE FEBRUARY 7th YOUNG ADULT GROUP


REGISTER FOR THE FEBRUARY 18th YOUNG ADULT GROUP

 

 

Patient Services - Request for Healthcare Provider Recommendations

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




Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.