By Letter to the Editor on October 10, 2020.
Re: Man suffering from CFS (Sept. 22 Lethbridge Herald).
I would like to let Mr. Gunn and the public know that myalgic encephalitis/chronic fatigue syndrome (ME/CFS) is actually more common than MS. It just does not get the research or attention here in Canada that it does in the U.S., U.K., Australia and Europe. Many sufferers are severely affected – house- or bed-bound for years.
A news release from the Canadian Institutes of Health Research on Aug. 22, 2019 states: “It is estimated that more than 580,000 Canadians live with myalgic encephalitis (ME), formerly known as chronic fatigue syndrome (CFS). This poorly understood, multi-system disease is debilitating and can strike individuals of all backgrounds and at any age.”
ME is an incurable neurological illness. There are no specific diagnostic tests because the cause is not known. There is currently no cure. However, treatment of symptoms can result in great improvements in patients’ conditions.
Physicians in Canada are told about this illness during their training, and provincial medical associations have provided information and treatment guidelines for their members. There are only a couple of doctors in Alberta specializing in patients with ME. However, all physicians should be able to help with the ongoing symptoms and referral to specialists of various kinds as required, just as they do, for example, with their diabetic patients. There is really no excuse for a physicians in Alberta today to say “I can’t help you. I don’t know about it,” although I will admit that in my 30 years as an ME sufferer, that is still the majority response.
You should not have to be paying $60,000 for treatment.
Good resources for appropriate information are:
1. National ME/FM Action Network, 512 33 Banner Road, Nepean, Ont., K2H 8V7 or firstname.lastname@example.org.
2. Bateman Horne Centre.org – for core clinical diagnostic criteria and underlying pathology and for treatment, “quick tips for managing patients with ME/CFS/severe FM who become acutely ill.”
I would like to encourage Mr. Gunn; I have been in his situation and have known many others as well. You will have improvements. For his family/support system – you need to advocate constantly for appropriate care for him.
To the medical community in southern Alberta – educate yourselves. Don’t tell a patient, “I don’t know about this.” Say, “I will educate myself, and in the meantime, I will help you with the best possible treatment for your symptoms.”