Editorial: Advances in ME/CFS Research and Clinical Care. Friedman, Bateman, Bested, Nahle.

John Mac

John Mac

Senior Member (Voting Rights)
From frontiers in Pediatrics
Editorial on the Research Topic

Advances in ME/CFS Research and Clinical Care spotlights Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a maligned, stigmatized, under-researched disease, which lacks a definitive, objective clinical test for its diagnosis, and definitive palliative and curative treatments.
A few brave physicians attempt to alleviate the suffering of the afflicted.
They rely upon the patients' symptoms to guide them. Physicians can provide symptomatic relief and improve upon patients' abnormal physiological and metabolic parameters by intervening to cause the latter to approach normal limits.
Documented to be more severely disabling than HIV-AIDS, ME/CFS receives disturbingly little funding in the United States and around the world.
ME/CFS patients constitute an identifiable, underserved population that is in need of the recognition which would raise them from their current, underserved or non-served patient status into the mainstream of healthcare worldwide. ME/CFS is a common disease worldwide, affecting approximately 1 percent of the world's population.
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https://www.frontiersin.org/articles/10.3389/fped.2019.00370/full
 
I greatly appreciate the effort and I haven't read far yet. But this makes it sound as though we patients are lying around limply like damsels in distress while the brave researcher, clinician and caregiver knights do battle for us. Sure, there's some truth to that, but it's not the whole truth. It's a bit removed from the 'nothing about me without me' approach that is seen as best practice in the disabled community, and it undermines efforts to have the medical profession listen to the patients.

Advances in ME/CFS Research and Clinical Care makes the statement that despite these impediments, the compassion of the human spirit embedded in researcher, clinician, and caregiver boldly steps into this void, doing what is necessary to advance the science of, and treatment for people with, ME/CFS.
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ME/CFS is a common disease worldwide, affecting approximately 1 percent of the world's population.
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I also think this might be a problem. Sure, no one really knows and there's a grey area where some people may be so lightly affected as to appear healthy, but it's probably better to err on the side of caution. Claiming such a high incidence might make the fact that we are invisible and under-served so unbelievable that the whole idea of ME/CFS might be questioned. I think 0.4% is a better guess for now.
Edit - reading the Valdez paper now - I can see how the writer of the editorial might have settled on the 1% figure.
 
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