For those who don’t know, May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) awareness month, at least in California. To kick it off this year, the Workwell Foundation posted the following to Twitter this afternoon (to view on Twitter, click here):
In honor of ME/CFS Awareness month the Workwell Foundation Research team has composed a letter about graded exercise therapy. Please feel free to print & distribute it widely. https://conta.cc/2JI4KWe http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf …
#mecfs#awareness#millionsmssing#nonprofit#research
The Workwell Foundation in California does research on ME/CFS with a focus on functional aspects of the disease and also offers cardiopulmonary exercise testing (CPET). Some people with ME/CFS recommend this testing as it allows them to both measure their impairment for disability applications and also aids the patient in appropriately pacing and avoiding symptom exacerbation. I won’t be discussing this for now because I have not done it (it is expensive and can induce a large crash, and frankly I just haven’t gotten around to it yet), but I very well may do it at some point, and I will write about it if/when I do!
If the above link doesn’t work, the letter can be found on their website under “Research & Latest News” or directly at this link here. It is addressed to health care providers and discusses the dangers of graded exercise therapy (GET) for patients with ME/CFS. It even has a page of references!
I don’t know about you, but I’m definitely considering sending this to all the doctors who have told me I just need to exercise more…