Letter to Christian Dubé, Minister of Health and Social Services


Minister,

We have taken note of the announcement that was made regarding the clinics that will be deployed for the management of symptoms of long COVID and Lyme disease.

We must admit that we are surprised, even shocked, to find that myalgic encephalomyelitis (ME) – also called chronic fatigue syndrome – is not included as agreed. Since the beginning of the pandemic, the similarity between the latter and the long form of COVID has been raised many times by the entire scientific community.

Your opinion
interests us.

Do you have an opinion to share? A text between 300 and 600 words that you would like to submit to us?

It was the hard-won knowledge of people with ME over all those long years of stigma and rejection from the medical community that allowed you to leave with a head start in understanding the portion of long-COVID patients who present with ME-like symptoms.

We have been used as guinea pigs for a very long time (think here of the extremely damaging graduated exercise therapy that was prescribed to them) without having any real support. Unfortunately, once again, patients who are part of the myalgic encephalomyelitis community will be pushed aside, in a project that was originally intended to be for them.

Let us remember that the Ministry of Health itself mandated, in 2010, AETMIS (now INESSS) to draw up a portrait of the situation and the state of knowledge on myalgic encephalomyelitis (called chronic fatigue syndrome at the time). In the recommendations issued in this report, it was clearly stated that it was necessary:

page1image47935872

  • To form interdisciplinary medical teams of consultants capable of establishing the diagnosis of this disease;
  • To create agreements with interdisciplinary community rehabilitation circles;
  • To participate in the training of professionals, both in the university context and in that of continuing education, by organizing, for example, colloquia, workshops and conferences on CFS;
  • To promote and support research on the epidemiology, etiology, physiopathology and management of this disease.

What have you done with these recommendations for over a decade? We were promised, on several occasions, the arrival of this famous clinic, without concrete results. We thought that our patience would finally be rewarded, but we are disappointed to see that this is not the case, once again.

You talk about the importance that “people who are suffering from the consequences of these diseases (long COVID and Lyme disease) receive the services they need”, but what about the 70,000 Quebecers suffering from ’em who have suffered for a long time from said same consequences? Do you stigmatize the diagnosis of ME as far too many people in the medical field still do? Is that why myalgic encephalomyelitis is not advertised in your clinics project as expected?

The MI community feels, once again, neglected and abandoned by our Ministry of Health. We therefore ask that our patience be, for once, rewarded and that we have access to what has been promised to us for several years:

Have access to a specialized clinic that will be able to offer us adequate care and quality care.

We remind you that myalgic encephalomyelitis is also an unknown disease (read here ignored), with persistent symptoms and that it requires more complex management. The need is real and major… Just as much as for people with long-term COVID and Lyme disease.

So… Will ME patients have a place in this clinic? Or will we have to wait another decade?

The AQEM team

On behalf of people with ME who feel invisible



Reference-www.tvanouvelles.ca

Leave a Comment