ME/CFS & FM News
- 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: 27 October 2018 27 October 2018
The long-awaited Pediatric ME/CFS Primer, written by an international group of pediatric ME/CFS expert clinicians, is now published and freely available.
Lead author Peter Rowe states, “Three years ago, Ken Friedman, Alan Gurwitt, and Rosemary Underhill invited an international group of experienced ME/CFS clinicians to write a comprehensive guide to the diagnosis and management of ME/CFS in adolescents and young adults. The IACFSME had published a guide for adults, but there was no similar publication to help clinicians manage the unique aspects of ME/CFS in children and adolescents.”
Not only does the Primer contain a wealth of practical clinical advice, it also includes facts sheets and sections on working with schools and a sample physician’s letter to the school, authored by Faith Newton, Ed. D. It is a valuable guide for health care providers, parents and families, and school personnel.
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer"
Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings and Katherine S. Rowe
Faith Newton Ed.D., Department of Education, Delaware State University, Dover, DE, USA contributed Section “The School System” and Appendix D.
Evan Spivak, DDS, Department of Pediatric Dentistry, Rutgers School of Dental Medicine, Newark, NJ, USA contributed Section “Oral and Dental issues.”
Appendix F is based upon “Considerations Prior to Surgery for Adult ME/CFS Patients” by Dr. Charles W Lapp MD, Director, Hunter-Hopkins Center, Charlotte, NC, USA, with permission.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.