I recently wrote the health minister of Canada (August 8), copying my provincial and federal MPs, as well as the provincial health minister of Quebec about our situation. I wrote and received a reply in French and don't have the energy to translate it in full along with my letter, but I attached the reply letter to this thread. I framed the situation in trying to make them understand that they are effectively maintaining a policy of systemic discrimination by refusing to address the fact that we have no access to adequate health care appropriate to our condition, which is a protected right under the Canadian constitution. The reply was the usual form non-response of "we're thinking about maybe doing something and waiting for something to happen". Here is the key passage of the response, roughly translated: "The Canadian government invests in ME/CFS research by way of the IHRC. Some studies funded by the IHRC focused on the link between genetic variation and severity of symptoms in patients diagnosed with ME/CFS, as well as on characterizing the best approach for readaptation. IHRC have also supported research aimed at finding new treatments targeting the causes of ME/CFS, as opposed to current treatments that only aim to reduce symptoms in patients. By way of the Institute of Musculoskeletal Health and Arthritis (IMHA), the IHRC are determined to call on patients and their defenders in order to build relations between researchers and patient organisations. To this end, the leadership of the IMHA met with representatives of two important patient organizations in May 2018 in order to discuss the possibility of supporting ME/CFS researchers. Notably, the IHRC actively collaborate with the ME/FM action network as well as other partners to fill gaps in this domain of research. The IHRC intend to intensify collaboration with the ME/CFS community in order to work more closely to identify research priorities. The IHRC will plan in the coming months a workshop bringing together patients and researchers as means of consultation. The workshop will help determine the future possibility of funding to be made available to admissible researchers in Canada. The IHRC recognize the importance of patient participation to the process of research and continue to make it a priority." The only notable mention is the future possibility of a possible workshop that could think about making consultations some time in the future. Talk about commitment as firm as camembert. They speak of some unknown support of some research without actually being able to name it. Can't say I'm disappointed or surprised, I expected nothing. No plan. No commitment. Systemic discrimination and indifference will continue to be the official policy of the Canadian government for the foreseeable future. And the $1.8M in funding at the IHRC for which the only proposal (I think by Alain Moreau) was rejected does not seem to be on track to be spent any time soon. I specifically mentioned that this is a violation of the constitutional rights of half a million Canadians. The reply ignored this part entirely, the premise that we are discriminated in any way is rejected.