Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are interchangeable titles used to describe the same illness. Sometimes this illness is simply referred to as ME/CFS. It is a chronic condition characterized by many symptoms including sleep issues, headaches, depression, bowel dysfunction, brain fog, and dizziness. Every patient experiences the ME/CFS in a different way and symptoms can fluctuate over time. But most notably, all patients experience intense fatigue, which cannot be reduced with sleep or rest.
Research in ME/CFS
ME/CFS is under-diagnosed partially because the condition is still not very well understood. Not only does this lack of knowledge keep people from a diagnosis, it can also severely impact those who are diagnosed by hindering access to effective treatments.
One of the biggest issues with ME/CFS research is that it does not adequately receive consumer feedback. This is an essential ingredient for all research endeavors, but especially when symptoms and experiences vary so much from patient to patient.
The Exercise Dispute
One of the most highly contested therapies for this condition is exercise.
The whole debate comes down to the nature of this disease. Those who advocate for exercise often believe that patients can reverse their own condition if they work hard enough. This is not to say that all of these individuals believe the diagnosis is a hoax, but they do believe that it can somehow be cured by the patient’s actions. These advocates suggest graded exercise therapy (GET) and cognitive behavioral therapy (CBT) as treatments.
Patients and many of their advocates have a different view. They argue the condition is more complex than something that could be cured by doing some sit ups. In fact, many patient surveys have shown that GET can actually worsen symptoms and cause relapses for the vast majority of people. Instead, these individuals recommend pacing. Pacing involves maintaining awareness of your own energy levels and responding accordingly. This allows patients to maximize what they are able to do when they are having a high functioning day. Pacing gradually allows for an increase in what ME/CFS patients can accomplish, but doesn’t suggest itself as a cure or treatment that can block all symptoms or relapses.
Some are confused by this entire debate. After all, what could possibly be wrong with exercise? Actually, quite a lot for ME/CFS patients. It can exacerbate some of their most debilitating symptoms. Still because exercise is well-known to be a healthy and beneficial thing, many who would normally contest its prescription for their illness don’t. Unfortunately, that can mean worse outcomes for patients.
We Need to Do Better for Patients
At the bottom of it all, we need more research for ME/CFS. But, within this research we need to include more patients in the discussion. There is more to this disease than can be cured by a patient’s attitude. This is a real disease, affecting real people. We need to do better for patients.
“Believing ME/CFS is a condition that can be cured by attitude and effort is stigmatizing, no matter how carefully you try to frame it.”
You can read more on this controversial topic in this article, which also discusses many of the problematic clinical trials and research endeavors regarding exercise for this condition.
Unfortunately, not all research is good research. It is an ever-developing field. In recognizing this, we must do everything in our power to ensure that patients are not negatively impacted by studies with even the best intentions.
It starts by involving them in the discussion.