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Discouraging News for Canadian ME Patients

Old Bones

Senior Member
Messages
808
Hi All,

I've been taking a break from the forum while preparing for a family wedding -- a daunting task. But, I just couldn't help but report the following news from Margaret Parlor, President of the National ME/FM Action Network. Her email contained the following text:

"Several months ago, the Canadian Institutes of Health Research offered a “catalyst grant” to set up a research network for ME/CFS. The National ME/FM Action Network was part of a team that made a grant application.

We have just received word that our application was denied. You can read the documentation here: It provides interesting quotes like: 'there is no evidence that CFS is a disease', 'psychosocial factors are strongly associated with the development of CFS' and 'research focus on biomarkers is likely to provide limited additional value'."
 

Gingergrrl

Senior Member
Messages
16,171
I've been taking a break from the forum while preparing for a family wedding -- a daunting task.

I was worried about you when you disappeared and glad to know that you are okay (and hoping the wedding goes smoothly and I'm sure it will be beautiful)!

That sucks about the Canadian grant being denied along with the sentences you quoted. I can't bear to read the whole thing or I will get too annoyed.
 

halcyon

Senior Member
Messages
2,482
Wow. What an extremely inflammatory document. I don't speak french, so it's a little unclear, is Natalie Gendron the person that authored this reply or someone else?
 

Old Bones

Senior Member
Messages
808
I was worried about you when you disappeared and glad to know that you are okay.

@Gingergrrl It's nice to know I've been missed. Thanks. Considering what happens in our household (or more accurately, what doesn't happen) to accommodate my health challenges, preparing for out-of-town guests is a major undertaking. But, they are elderly (even more so than me!), and very dear relatives. Their attendance at the wedding is important to us, and without a place to stay, they wouldn't be coming. So, I've given up everything that doesn't involve slowing getting ready, hoping desperately that I don't "poop out" until after the event. But, all eyes will be on the beautiful bride, so if I'm totally "bagged", it probably won't be noticed. At least, that's what I keep telling myself. I expect to be back participating on PR sometime in September.
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
7/27 of the references (26%) cited in the response come from Wessely, Sharpe or Chalder. And I'm not even familiar with the other BPS proponents, so the total percentage BPS representation would be much higher. Not a balanced response.
 

Justin30

Senior Member
Messages
1,065
Hmmm just another thing didnt Canada Create the CCC Criteria used by the NIH and lead to the development of the ICC Criteria....???:thumbdown:

Well why do they DX the disease in Canada then?

Why are they not helping being part of the solution?

This is beyond me i think i need a PR break...
 

Groggy Doggy

Guest
Messages
1,130
Hmmm just another thing didnt Canada Create the CCC Criteria used by the NIH and lead to the development of the ICC Criteria....???:thumbdown:

Well why do they DX the disease in Canada then?

Why are they not helping being part of the solution?

This is beyond me i think i need a PR break...
Its just so unfair, sorry. :(
 

Justin30

Senior Member
Messages
1,065
Hi All,

I've been taking a break from the forum while preparing for a family wedding -- a daunting task. But, I just couldn't help but report the following news from Margaret Parlor, President of the National ME/FM Action Network. Her email contained the following text:

"Several months ago, the Canadian Institutes of Health Research offered a “catalyst grant” to set up a research network for ME/CFS. The National ME/FM Action Network was part of a team that made a grant application.

We have just received word that our application was denied. You can read the documentation here: It provides interesting quotes like: 'there is no evidence that CFS is a disease', 'psychosocial factors are strongly associated with the development of CFS' and 'research focus on biomarkers is likely to provide limited additional value'."

Do you have the full document?
 

Gingergrrl

Senior Member
Messages
16,171
I tried to read it after all and as I suspected, I got too annoyed and had to stop.

Am really confused like Justin said above... Didn't the CCC Criteria come out of Canada? Why are they going backwards in time vs. forwards?

Do they still hold the CCC to be an official medical document? What the hell?!!!
 

Kati

Patient in training
Messages
5,497
Sorry to worsen the party but CIHR awarded the following grant for a little less than 600,000$ for a rehab project.

Canadian MSK Rehab Research Network
Principal Investigator(s):
Macdermid, Joy C; Lyddiatt, Anne L; Astephen Wilson, Janie L; Birmingham, Trevor B; Robinovitch, Stephen N; Roy, Jean-Sébastien
Co-Investigators:
Feldman, Fabio; Ashe, Maureen C; Beaton, Dorcas E; Beaupre, Lauren; Begon, Mickael; Bouyer, Laurent J; Carlesso, Lisa; Choinière, Manon; Cote, Julie; Dahan-Oliel, Noemi; Deluzio, Kevin J; Desmeules, François; Dionne, Clermont; Emery, Carolyn A; Ferber, Reed; Ferreira, Louis M; Fitzsimmons, Deborah A; French, Simon D; Gagnon, Dany; Giangregorio, Lora Marie; Gignac, Monique A; Gross, Anita R; Gross, Douglas P; Hayden, Jill A; Hill, Wendy; Hunt, Michael A; Kozey, Cheryl L; Leonard, Guillaume M; Maly, Monica R; Marshall, Deborah A; Marsh, Jacquelyn; Mercier, Catherine; Perreault, Kadija; Petrella, Robert J; Piché, Mathieu; Prado, Carla M; Richardson, Julie A; Robbins, Shawn M; Ronsky, Janet L; Rouleau, Dominique; Rutherford, Derek J; Sinden, Kathryn E; Stock, Susan; Teeter, Matthew G; Tousignant-Laflamme, Yannick; Trejos, Ana Luisa; Urquhart, Nathan A; Walton, David M; Weiler, Hope A; Whittaker, Jacqueline L; Wideman, Timothy H; Wohl, Gregory R; Woodhouse, Linda J
Supervisors:
Institution Paid: University of Western Ontario

Research Institution: University of Western Ontario

Department: Physical Therapy

Program: Catalyst Grant: Musculoskeletal Rehab and ME/CFS Network Grant - MR

Competition(Year/Month): 201605

Assigned Peer Review Committee: CFS Catalyst Grant: Musculoskeletal Rehab and ME/Chronic Fatigue Syndrome

Primary Institute: Musculoskeletal Health and Arthritis

Primary Theme: Clinical

Term (Yrs/Mths): 3 yrs 0 mth
CIHR Contribution:

Contributors Amount: $593600 EQuipment: $6400
External Funding Partner(s):

Partner Name Amount Equipment

External Applicant Partner(s):

Partner Name Amount Equipment

External In-Kind Partner(s):

Partner Name

Keywords: KNOWLEGE TRANSLATION; MOBILITY; MUSCULOSKELETAL HEALTH; NATIONAL PLATFORMS; PAIN; RANDOMIZED CONTROLLED TRIALS; REHABILITATION; TECHNOLOGY; TRANSDISCIPLINARY; WORK

Abstract: Problems with bones, joints, muscles, and the nerves that help people move and interact with the world affect many Canadians. Problems like arthritis, osteoporosis, and injuries cause pain, lack of mobility, and interfere with work and other life activities. Disorders affecting the musculoskeletal system are the largest cause of disability in Canada. Rehabilitation is an approach to help optimize function throughout the lifespan and includes management of health conditions, and prevention of reoccurrences or future problems. To address the large burden of pain and disability, it is important to have a strong research base that can define the best approach to rehabilitation. The aging population and changing healthcare system place urgency on the need for rehabilitation researchers to work together to meet these challenges. This network will bring together researchers from different disciplines and people affected by these problems from across Canada to focus on fundamental problems of chronic pain, mobility limitations, and their impacts on work. The network will establish key research priorities, fund pilot grants and trainee awards that will help people work together on innovative solutions, create platforms so that researchers can share data nationally, and conduct studies at multiple centres. The network will look at innovative new ways to deliver rehab using technology and new discoveries. The research will consider the risk from injury or cumulative loads that occur throughout the lifespan. The research will engage experienced and junior researchers, patients, organizations, and trainees to work together collaboratively. The network is expected to provide a clear vision of what is needed and pilot projects addressing important research questions in a more collaborative way. Also, the network will attract larger funding and more extensive partnerships. The ultimate results will be high-quality research that will have an impact on the health of Canadians.
 

Justin30

Senior Member
Messages
1,065
Does anyone have the actual request to the Canadian Government? The one from ME/FM Canada group?
 

Justin30

Senior Member
Messages
1,065
Sorry to worsen the party but CIHR awarded the following grant for a little less than 600,000$ for a rehab project.

Canadian MSK Rehab Research Network
Principal Investigator(s):
Macdermid, Joy C; Lyddiatt, Anne L; Astephen Wilson, Janie L; Birmingham, Trevor B; Robinovitch, Stephen N; Roy, Jean-Sébastien
Co-Investigators:
Feldman, Fabio; Ashe, Maureen C; Beaton, Dorcas E; Beaupre, Lauren; Begon, Mickael; Bouyer, Laurent J; Carlesso, Lisa; Choinière, Manon; Cote, Julie; Dahan-Oliel, Noemi; Deluzio, Kevin J; Desmeules, François; Dionne, Clermont; Emery, Carolyn A; Ferber, Reed; Ferreira, Louis M; Fitzsimmons, Deborah A; French, Simon D; Gagnon, Dany; Giangregorio, Lora Marie; Gignac, Monique A; Gross, Anita R; Gross, Douglas P; Hayden, Jill A; Hill, Wendy; Hunt, Michael A; Kozey, Cheryl L; Leonard, Guillaume M; Maly, Monica R; Marshall, Deborah A; Marsh, Jacquelyn; Mercier, Catherine; Perreault, Kadija; Petrella, Robert J; Piché, Mathieu; Prado, Carla M; Richardson, Julie A; Robbins, Shawn M; Ronsky, Janet L; Rouleau, Dominique; Rutherford, Derek J; Sinden, Kathryn E; Stock, Susan; Teeter, Matthew G; Tousignant-Laflamme, Yannick; Trejos, Ana Luisa; Urquhart, Nathan A; Walton, David M; Weiler, Hope A; Whittaker, Jacqueline L; Wideman, Timothy H; Wohl, Gregory R; Woodhouse, Linda J
Supervisors:
Institution Paid: University of Western Ontario

Research Institution: University of Western Ontario

Department: Physical Therapy

Program: Catalyst Grant: Musculoskeletal Rehab and ME/CFS Network Grant - MR

Competition(Year/Month): 201605

Assigned Peer Review Committee: CFS Catalyst Grant: Musculoskeletal Rehab and ME/Chronic Fatigue Syndrome

Primary Institute: Musculoskeletal Health and Arthritis

Primary Theme: Clinical

Term (Yrs/Mths): 3 yrs 0 mth
CIHR Contribution:

Contributors Amount: $593600 EQuipment: $6400
External Funding Partner(s):

Partner Name Amount Equipment

External Applicant Partner(s):

Partner Name Amount Equipment

External In-Kind Partner(s):

Partner Name

Keywords: KNOWLEGE TRANSLATION; MOBILITY; MUSCULOSKELETAL HEALTH; NATIONAL PLATFORMS; PAIN; RANDOMIZED CONTROLLED TRIALS; REHABILITATION; TECHNOLOGY; TRANSDISCIPLINARY; WORK

Abstract: Problems with bones, joints, muscles, and the nerves that help people move and interact with the world affect many Canadians. Problems like arthritis, osteoporosis, and injuries cause pain, lack of mobility, and interfere with work and other life activities. Disorders affecting the musculoskeletal system are the largest cause of disability in Canada. Rehabilitation is an approach to help optimize function throughout the lifespan and includes management of health conditions, and prevention of reoccurrences or future problems. To address the large burden of pain and disability, it is important to have a strong research base that can define the best approach to rehabilitation. The aging population and changing healthcare system place urgency on the need for rehabilitation researchers to work together to meet these challenges. This network will bring together researchers from different disciplines and people affected by these problems from across Canada to focus on fundamental problems of chronic pain, mobility limitations, and their impacts on work. The network will establish key research priorities, fund pilot grants and trainee awards that will help people work together on innovative solutions, create platforms so that researchers can share data nationally, and conduct studies at multiple centres. The network will look at innovative new ways to deliver rehab using technology and new discoveries. The research will consider the risk from injury or cumulative loads that occur throughout the lifespan. The research will engage experienced and junior researchers, patients, organizations, and trainees to work together collaboratively. The network is expected to provide a clear vision of what is needed and pilot projects addressing important research questions in a more collaborative way. Also, the network will attract larger funding and more extensive partnerships. The ultimate results will be high-quality research that will have an impact on the health of Canadians.

This has nothing to do with ME...