ME/CFS
Definition
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease with core symptoms of fatigue, restless sleep, post-exertional malaise (PEM) and cognitive dysfunction for more than 6 months. The more frequently studied causes are immunological, psychological/psychosocial, viral, and neuroendocrine/hormone/metabolic.
Over the last few decades, this disease - now regarded as one - has changed its name in accordance with how the community and doctors referred to the diseases, as well as the best way to categorize the disease for the purposes of ICD codes. While Myalgic Encephalomyelitis was recognized by the WHO, at that time there was no such disease as Chronic Fatigue. Over time the challenge was to identify a set of criteria and a coding system that would impact the outcomes of these patients, including ‘fatigue’ which was difficult for patients to describe with dignity and for physicians to quantify. Due to exceptional work done between 2015-2017, there was a lower emphasis on ‘fatigue’ and a greater necessity to include post-exertional malaise as a criteria for ME/CFS.
LITERATURE - DIAGNOSIS AND TREATMENT of ME/CFS
ME/CFS is an invisible illness that disproportionately affects women 2:1. In fact, middle aged women comprise 70% of ME/CFS patients. With fatigue playing a role on these patients there is a tremendous misunderstanding of the disease and misdiagnosis.
As a result of not having diagnostic blood tests or investigative tools plus the variety of case criteria having different selection and inclusion criteria, many clinicians have been skeptical that ME/CFS was legitimate. - Bested et al
A lot of medical management for this disease includes coping: coping with pain and other symptoms, coping with movement, coping with society, and preventing depression. As a result, non-pharmacological treatments that have been studied are largely psychological (counselling, behavioral intervention, etc). In the limited trials that have been conducted on other available non-pharmacological therapies, patients have shown to react well to massage with less adverse affects than from pharmacological therapies. Massage has shown to relieve symptoms of CFS.
Survey Results
While the data is somewhat limited, we do see patients with ME/CFS seeking massage and - to a limited degree - acupuncture.
what they told us
The data on ME/CFS and the management tools are inconclusive and need further investigation. For more information see our Survey Summary.
Femade Approach to treating me/cfs
ME/CFS is not an invisible illness that is often treated through mechanical movement. Because of the fatigue component as well as the post-exertional malaise we have to always be very careful not to push the patient in any way; more so than any other patient profile. To bring the patient any sort of reprieve we would focus on the symptoms of debilitation such as sleep, fatigue and cognitive impairments. These can be assessed and achieved through acupuncture and - based entirely on the patient’s tolerance - massage therapy.
We would also approach symptoms from a naturopathic medicine angle. Here we would be looking to see if the patient’s sleep quality could be improved using natural agents and dietary changes. We would also look at the patient’s blood work to see if the more sedentary lifestyle is impacting organ and systems functionality and would work toward providing more care to the body.
Lastly for this patient demographic we put a huge emphasis on mental coping mechanisms and suggest that patients seeking a community (through our virtual social support groups), one-on-one sessions through our Peer Support, or more structured counseling through our Psychotherapist.
Resources
Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched https://pubmed.ncbi.nlm.nih.gov/33317576/
Review of case definitions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) https://pubmed.ncbi.nlm.nih.gov/32727489/
Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome https://pubmed.ncbi.nlm.nih.gov/28052319/
Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians https://pubmed.ncbi.nlm.nih.gov/26613325/
Complementary and alternative medicine for patients with chronic fatigue syndrome: a systematic review https://pubmed.ncbi.nlm.nih.gov/21982120/