• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Discouraging News for Canadian ME Patients

shannah

Senior Member
Messages
1,429
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.

@Kati You're always so good at digging this kind of information out. I've looked around and can't see where you found this. Do you have a link please?
 

Kati

Patient in training
Messages
5,497
@Kati You're always so good at digging this kind of information out. I've looked around and can't see where you found this. Do you have a link please?
This you have to look up on CIHR website http://cihr-irsc.gc.ca ( it won't let me copy the link)
Select language.
Pull the funding tab, and pick 'decisions'
Click on funding decisions notifications.
Next to competition 201605CF1 you click on 'view' and there you are.
 

shannah

Senior Member
Messages
1,429
I was looking under the two 'Database' sections instead of the 'Notifications' areas.

Like fighting your way out of a paper bag some days ...

Thanks @Kati
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This has nothing to do with ME...

looks like they are doing what America did when it sent all the ME/CFS funding into other things many years ago and not into ME/CFS like they were supposed too which ended up getting exposed after wards by whistle blowers.

I cant believe this whole situation is going to repeat but in another country :(
 

Kati

Patient in training
Messages
5,497

Kati

Patient in training
Messages
5,497
It looks like 4 proposals were submitted? Any idea what the other two were? I'm guessing they were also not BPS CFS studies, since the committee selected a non-CFS study.
I don't think they share unsuccessful projects, just like NIH does not discloses the rejected grants. We got wind of this one because the investigator shared with MEFM Action Network who was also named in the proposal.
 

Valentijn

Senior Member
Messages
15,786
Here is another example of a researcher whose grant request was refused by CIHR, on Alzeimer
This is a very recent story, so very well might involve the same reviewer, and would certainly be reflective of the same problems in who is chosen to do the reviews. A particularly nasty bit, which is echoed by the rejection of research into ME/CFS biomarkers:
Comments on her rejected application included this one from an anonymous reviewer: ” … a test for the likelihood and possibly the velocity of (cognitive) decline (for early detection of Alzheimer’s disease) will likely be of minimal value to the afflicted, aside perhaps from allowing them more time to put their affairs in order.” In other words: Why bother diagnosing Alzheimer’s disease early, while people are still healthy?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
[Edited]

In Canada, Prime Minister Harper (voted out of office in Oct. 2015) forbade government scientists to speak about (or publish) their findings if those findings were inconvenient to the government agenda.

This is the sort of thing that sounds like it must be a conspiracy theory until you realize it was public knowledge.

It looks like 4 proposals were submitted? Any idea what the other two were? I'm guessing they were also not BPS CFS studies, since the committee selected a non-CFS study.

The way I understand it is that the grant on offer was actually for a broader purpose, including musculoskeletal research as well as ME/CFS. Four grants were submitted in total, three for the musculoskeletal category and one for ME/CFS. One of these other grants was successful. But I want to emphasize it wasn't a case of another illness 'stealing' from ours:
  • there was certainly enough funding for more than one award, as these were seed grants. Tiny in the grand scheme of things: a drop within a drop in the bucket.
  • these were from two separate 'funding pools', despite being on the same grant.
  • The total amount available for this funding opportunity is $1,200,000 enough to fund two (2) grants. This amount may increase if additional funding partners participate.
  • Of this $1,200,000:
    • $600,000 is available to fund one network relevant to the Musculoskeletal Rehabilitation funding pool.
    • $600,000 is available to fund one network relevant to the Chronic Fatigue Syndromes funding pool.
  • The maximum amount awarded for a single grant is $200,000 per annum for up to three years.

Thanks to Maureen M. for her links to this.

I also thought it was pretty dumbass that they rejected the application on the grounds that this was the first study submitted by this researcher in ME. The NIH in particular is trying to encourage new researchers to join the field; you can't do that if you reject a grant proposal on the grounds that the applicant is a new researcher.

The whole thing gives the impression that Canada wishes ME/CFS research -- and patients -- would just go away, already.

-J
 
Last edited:

Justin30

Senior Member
Messages
1,065
The whole thing gives the impression that Canada wishes ME/CFS research -- and patients -- would just go away, already.

-J

Is there a way to to have MEAction respond to this? Letter, press, NIH help, anything that brings this to the publics attention?

Possibly working together with ME/FM Canada Group to respond to this?
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Is there a way to to have MEAction respond to this? Letter, press, NIH help, anything that brings this to the publics attention?

Possibly working together with ME/FM Canada Group to respond to this?

People are talking about folding it into the #MillionsMissing protests for sure! There are some concrete thoughts about how fold this into that framework. I'd recommend getting in touch with the lead for the Canadian protest

www.millionsmissing.meaction.net -- scroll down to Canada and click on the event to see who is the protest lead.
 

waiting

Senior Member
Messages
463
People are talking about folding it into the #MillionsMissing protests for sure! There are some concrete thoughts about how fold this into that framework. I'd recommend getting in touch with the lead for the Canadian protest

www.millionsmissing.meaction.net -- scroll down to Canada and click on the event to see who is the protest lead.

The link is not working for me today -- can others access it ok?

Edit: never mind, I typed it directly (instead of clicking on the link) & now it worked.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Millions Missing Canada press release:

Research Reviewers as Disease Denialists

Controversy-plagued Canadian Institute of Health Research grant reviewers, in opposition to World Health Organization and Health Canada classifications, take a psychological approach and reject the only application for the only funds earmarked for the neurological disease Myalgic Encephalomyelitis due its focus on biomarker research.

Toronto - August 28, 2016 - “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME).

Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic expressed further concern stating that “the grant refusal is a major setback” for research into ME. “Why is this country so behind the times in recognizing the severity of these disease states?”

Why indeed, would CIHR reviewers dismiss a chronic, complex illness as not “a disease” and preclude any biological research as “research focus on biomarkers is likely to provide limited additional value”?...

More http://www.wireservice.ca/index.php?module=News&func=display&sid=19576
 
Last edited:

Forbin

Senior Member
Messages
966
The committee’s main concern with this application was that the focus on biomarkers (vs. psychosocial and non-biomarker influences) might produce information with limited value in terms of its impact on outcomes and care.

And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action.

Hamlet (3.1.86)​