Letter to Christian Dubey, Minister of Health and Social Services

Minister,

We have noticed the announcement made regarding the clinics that will be appointed for management. Symptoms of chronic Kovid and Lyme disease.

Myalgic encephalomyelitis (ME) – also known as Chronic Fatigue Syndrome – We must admit that we are both shocked and even surprised that it is not included as agreed. Since the beginning of the epidemic, the similarities between the latter and the long-standing Kovid have been repeatedly raised by the entire scientific community.

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The hard-earned knowledge of people with ME regarding the stigma and rejection that comes from the medical community before you exit to understand the part of chronic Kovid patients with ME-like symptoms.

We have long been used as guinea pigs (think here of the most harmful graduate exercise therapy prescribed for them) without any real support. Unfortunately, once again, patients who are part of the myelogenous encephalomyelitis community are actually pushed aside in the project intended for them.

Recommendations not followed

Recall that in 2010 the Ministry of Health itself ordered AETMIS (now INESSS) to draw a picture of the condition and cognitive status on myalgic encephalomyelitis (then known as Chronic Fatigue Syndrome). Among the recommendations issued in this report, it is clear that this is necessary:

• Establishing interdisciplinary medical teams of consultants capable of establishing this diagnosis;
• To formulate agreements with interdisciplinary community rehabilitation circles;
• To participate in the training of specialists in the university context and in continuing education, for example, by conducting dialogue, workshops and conferences on CFS;
• To promote and support research on epidemiology, etiology, physiopathology and disease management.

What have you been up to with these recommendations for over a decade? We have on many occasions promised the arrival of this well-known clinic, without any specific results. We thought our patience would finally be rewarded, but once again we were disappointed not to see that happen.

A stigma?

You’re talking about the importance of “people with the consequences of these diseases (chronic Kovid and Lyme disease) receiving the services they need”, but what about the 70,000 Quebecars who have been suffering for a long time? The same consequences? Are you stigmatizing the diagnosis of ME as many people in the medical field are still doing? Is that why myalgic encephalomyelitis is not advertised as expected in your clinic project?

The MI community, once again, feels neglected and abandoned by our Ministry of Health. So we want our patience to be rewarded once and for all with what we have been promised for many years:

Have access to a specialized clinic that can provide us with adequate care and quality care.

Myalgic encephalomyelitis is also an unknown disease (read here ignored), with persistent symptoms and we remind you that it requires more complex management. The need is real and major … the same goes for people with chronic Kovid and Lyme disease.

So … is there a place for ME patients in this clinic? Or will it be another decade?

AQEM Team

On behalf of people with ME who feel invisible