There are several new publications, in addition to some helpful older ones, available to help patients educate medical professionals about ME/CFS and long-COVID and especially the exertion intolerance that defines these conditions. These documents, guides, and videos should absolutely be shared with your primary care doctor or GP, but they are also helpful for other medical professionals. You can share these with any specialists you see, like neurologists, cardiologists, or rheumatologists. They are also helpful for doctors you see for routine check-ups, like OB/GYN, dermatologist, or even your dentist. And any medical professional who recommends you exercise or is involved with any kind of physical therapy with ME/CFS or long-COVID patients can benefit from knowing about exertion intolerance or Post-Exertional Malaise (PEM). All of these people in the medical profession need to understand how their own specialty fits into the bigger picture of ME/CFS and long-COVID.
Here are some of the best resources available for sharing with medical professionals (available to download, view, or print at the links provided):
ME Factsheet (NEW and available in multiple languages) - this new document from the World ME Alliance provides a general overview of ME: what it is, symptoms, impact. It emphasizes the exertion intolerance and danger of pushing patients to be active and mentions the link with long-COVID.
Pacing and Management Guide for ME/CFS and Long-COVID (for all patients) - from #MEAction - what are ME/CFS and long-COVID with a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources.
Pacing and Management Guide for Pediatric ME/CFS and Long-COVID - same sort of document from #MEAction, with a focus on PEM and pacing, but for kids and teens. Excellent for sharing with pediatricians, school administrators, and teachers.
Post-Exertional Malaise (PEM) Video Training Series - developed for doctors and other medical professionals by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, this video series explains not only what PEM is and how it affects patients but also the science behind it. It's a series of seven very short videos (2-7 minutes each). Scroll to the bottom to watch the entire series in under 30 minutes.
Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - published scientific paper that summarizes all the research proving that exercise/exertion is harmful to patients with ME/CFS and long-COVID - perfect for the medical professional who still insists you should exercise, in spite of you explaining about exercise intolerance. Share this far and wide!
Testing Recommendations for Suspected ME/CFS - from the U.S. ME/CFS Clinician Coalition, the cooperative group including all of the top ME/CFS specialists in the U.S.. They have loads of resources for medical professionals on their website - this document focuses on diagnosis and is perfect for your primary care doctor, GP, or any other medical professional involved in diagnosing you.
Treatment Recommendations for ME/CFS - also from the U.S. ME/CFS Clinician Coalition, this document outlines real medical treatments - for sleep dysfunction, orthostatic intolerance, immune dysfunction, and other aspects of the disease, based on their combined decades of experience treating hundreds of thousands of patients. It is perfect for your primary care doctor, GP, or any other medical professional involved in treating you.
Diagnostic Codes for ME/CFS and Long-COVID - as of last October 2022, ME/CFS and Long-COVID now have their very own ICD codes, the numbers doctors must include for every patient they see. The summary is at that link to print and share with your doctor. They should be using G93.32 for ME/CFS and G93.3 or U09.9 for long-COVID.
I am very fortunate to have an outstanding primary care doctor who understands ME/CFS, was the first one to accurately diagnose me, back in 2003, and has been treating various aspects of the disease in me and other patients for over 20 years. But I plan to print that new ME Factsheet to bring to my new OB/GYN next week and to give to my primary care doctor to ask her to share it with the other doctors, nurses, and physician assistants in her office.
If we all help to share this information, hopefully things will gradually change as more medical professionals understand what ME/CFS really is and how to help, not harm, patients.
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