Thanks very much for posting. I am very happy to see that research is finally being seeded in Canada. It has taken decades for these first seeds to be planted. But the patients are still totally abandoned. There is absolutely no one to go to for help. We have looked in Montreal, and Toronto and Ottawa. Yes, we have found GPs (some very kind) often working privately, for money, ready to try things, but no one really knowledgeable about this illness--and often very frightened to try very much of anything. WE have often had to go to the USA because local GPs were simply unwilling to try anything much, for they did not want to lose their licenses and for they did not know this illness, and often suspected it was mental. Researchers have their work and careers to worry about, like any professionals. Dr Moreau has the patients he tests, for his research, which is excellent. But a huge number, the majority of patients here, are simply left abandoned because no one knows what to do with them and there is no where to go. There is a painful divorce between research and the reality of the daily horrific lives of patients and the lack of medical care for them. It is really parallel worlds--at least from my personal experience. Perhaps this is the case with all serious illnesses, I don't know--it must be, I guess.....
Dr. Moreau is a gentleman and a scholar. He has a small research lab at St. Justine Hospital, quite renovated and very nice. And he is dedicated and sincere. However, there is no help for patients, none whatsoever. General Practitioners are poorly if even informed about ME, and it is usually patients who say: can I try this or that. This is not medicine. So, as I posted earlier, there is a total divorce between whatever goes on in research and the life of patients. I guess these cash infusions will help research plod along, as it does. But patients are in hell, basically. Forgive my despair. (Yesterday, a friend with a shoulder injury told me his doctor said to him: "the whole god damn f...healthcare system is broken..." My friend, a very straight laced chap, was shocked the doctor said this. Now with Covid, folks are afraid to go to their doctors, and ME patients are barricaded at home. Doctors are exhausted, and thus impatient and discouraged.....)
Does anyone know anything about this study listed in the ICanCME site above? Has it started? "Another study headed by Dr. Alain Moreau in collaboration with Dr. Ron Davis is searching for endogenous retroviruses in a Quebec cohort of people with severe ME/CFS."
The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) newsletter, April 2022, is available here, https://us6.campaign-archive.com/?u=17faa36a9bf5a8f4dd75a5de6&id=f6a077976c
Source: ICanCME Research Network (Canada) Date: April 18, 2023 URL: https://us6.campaign-archive.com/?u=17faa36a9bf5a8f4dd75a5de6&id=c6843b0abf 2023/2024 New Frontier ME Discovery Grant Program ------------------------------------------------- Call for Proposals. Deadline: Proposals must be submitted by 11:59 pm Atlantic Standard Time, Wednesday May 17, 2023. Please note that this information will also be available on our new website when feasible. What is the Discovery Grant Program? The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network is a national research network of researchers, clinicians, and patient partners working to advance the understanding of ME and its biomedical research. The network launched the New Frontiers Discovery Grant Program to promote the development of new interdisciplinary collaborative ME research teams, foster research excellence, and provide a stimulating environment for research training. http://www.icancme.ca/page.asp?ID=138 Appication Form https://view.officeapps.live.com/op/view.aspx?src=https://mcusercontent.com/17faa36a9bf5a8f4dd75a5de6/files/1d576623-5e53-ad1d-52be-4efa6a2b0bc4/EN_FINAL_ICanCME_Discovery_Grant_Application_Form_April_18_2023_.docx&wdOrigin=BROWSELINK
From the ICanCME Research Network on Twitter, "Funding announcement: ICanCME 2023 ME Stars of Tomorrow #Scholarship Program: https://mailchi.mp/de70b9160260/icancme-research-network-funding-announcement_sot-2023… Deadline to apply is August 30th, 2023. #MECFS #MyalgicE #pwME #MedTwitter #MedStudentTwitter"
