The Dark North: Canada Denies ME/CFS Grant Because Disease is Not Real

[Cort]

In reply to: "Will Canada still deny that ME/CFS is a real disease..." and many of the other down on Canada sentiments.

I don't think you can say that Canada denies ME/CFS is a real disease. What happened is admittedly pretty bad, but, there are a lot of other things to consider that have not been mentioned here or in the main article. First, grant review committees are often recruited from all over the world. I was asked to review a grant for a Dutch competition while living in Germany (and being Canadian). The CIHR doesn't really have an opinion of its own per se, they need to rely on the 'experts'. Here they've obviously ended up with one with a clear stance. However, the strong opinion in the rejection letter could be anyone from anywhere, though of course it does reflect on the image of the CIHR. Second, other than the bit of details one could get from the reviewers comments the grant application itself were never shown or discussed. If it was extremely poorly prepared/designed they may have been looking for any argument at all to reject it. Money is tight and there would likely be criticism of the CIHR if they funded a project that in the end was useless (think about PACE). Again, it's hard to say without having seen the grant. Third, there is often a slight misalignment between what is the domain of the CIHR and another funding body (NSERC). Hard core supporters of 'health-related' research may have felt, rightly or wrongly, that biomarker work belongs more under the rubric of NSERC. But it's kind of hard to say given that we don't really know what was in the grant application.

I'm not saying I agree with the rejection, and certainly not with the way it was handled, but I think getting down on the country is unfair.

I agree that it's not representative of Canada per se - as I noted in a comment there is certainly biologically based research coming out of Canada - not to mention the Canadian Consensus Criteria (lol) - but I think when the CIHR handed the first grant application - which was obviously physiologically based - to a someone who believes a psychological approach to ME/CFS comes first and foremost - I think it potentially says a lot about how the CIHR views this disease. They knew the person's background, though.

Hopefully there are other people in the CIHR who don't believe this went down very well. It is such a weird opinion that it may be an anomaly. How Canada intends to collaborate with the U.S. while having this kind of slant is beyond me, for instance - the U.S. is just not interested in this train of thought; the fact that they want to do that could indicate that the grant was drafted by people who are not behind this reviewer.

Canada is a big country and hopefully other voices will prevail.

 

[Cort]

Two things - it was pretty small grant for sure and only one group applied for it. That suggests that Canada is not doing much for ME/CFS and that the interest is pretty low as well. That, by the way, is exactly the situation here in the states. The NIH doesn't fund much ME/CFS research but they also get very few grant applications - about 10 or 20 a year as I remember.

If I am interpereting this correctlt you mean Canada does not have sufficient funding for research.

If this is the case I say BS and if am misinterpretting this I appologize.

The Canadian Government is giving 782 million to disease with way less disability and effective treatments those being HIV and Malaria. This is Canadian tax payer money leaving Canada to support research and treatment in other Countries. Yet 400k Canadians have been DXed with ME/CFS.

Im not saying dont support other Countries but if you have money like that the "Money is not tight." BC for example has huge taxes and is one if not the most expensive place in the world to live.

 

[Katie]

In reply to: "Will Canada still deny that ME/CFS is a real disease..." and many of the other down on Canada sentiments.

I don't think you can say that Canada denies ME/CFS is a real disease. What happened is admittedly pretty bad, but, there are a lot of other things to consider that have not been mentioned here or in the main article. First, grant review committees are often recruited from all over the world. I was asked to review a grant for a Dutch competition while living in Germany (and being Canadian). The CIHR doesn't really have an opinion of its own per se, they need to rely on the 'experts'.

Here they've obviously ended up with one with a clear stance. However, the strong opinion in the rejection letter could be anyone from anywhere, though of course it does reflect on the image of the CIHR. Second, other than the bit of details one could get from the reviewers comments the grant application itself were never shown or discussed. If it was extremely poorly prepared/designed they may have been looking for any argument at all to reject it.

Money is tight and there would likely be criticism of the CIHR if they funded a project that in the end was useless (think about PACE). Again, it's hard to say without having seen the grant. Third, there is often a slight misalignment between what is the domain of the CIHR and another funding body (NSERC). Hard core supporters of 'health-related' research may have felt, rightly or wrongly, that biomarker work belongs more under the rubric of NSERC. But it's kind of hard to say given that we don't really know what was in the grant application.

I'm not saying I agree with the rejection, and certainly not with the way it was handled, but I think getting down on the country is unfair.

Thanks for adding this to the post. Having known nothing about grant applications, you have explained it quite clearly what can go wrong and that grant committees are from all over the world.
When the context or background is missing it's easy to make assumptions especially negative ones.
I've had a recent set-back after a month of doing not so bad. I'm just plain angry at this disease!!! I want to yell at any powers that be to stop this insanity and help us. I'm so very tired and in pain. Sometimes a period of not-so-bad health followed by the inevitable relapse is almost cruel as I get a small glimpse of what my life could be if only...

 

[WhyWhyWhy]

Canada isn't to blame it is the:

Canadian Institutes of Health Research
160 Elgin Street, 9th Floor
Address Locator 4809A
Ottawa ON K1A 0W9
Canada

Somebody might want to contact them and explain that OHIP or the Ontario Health Insurance Program classifies ME/CFS and Fibromyalgia as neurological diseases. It is one of two provinces to do so in Canada. So in Ontario where this institute is located, they can't claim ME is psychological when the provincial government says it isn't.

 

[Joshua Grant]

@Justin, yes, you interpreted my statement correctly. I'm suggesting that Canada does not have sufficient funding for research. No country does. You could add a few zeros to the figure you cite and it still wouldn't be enough. How many researchers need money? All of them. A lot. The acceptance rate of the average CIHR grant competition is probably somewhere around 10-13%. That means 87-90% of individuals or groups applying for funding don't get it. That's not necessarily because the CIHR (or the individuals making suggestions on behalf of the CIHR) think the research isn't worthwhile. It's because they don't have enough money to meet demand. So they must decide who gets what.

Whose research is most important? That'll depend on which suffering patient you ask. How is the CIHR to determine what has the highest priority? Probably many ways, but one way is whether they're receiving a lot of requests for grants in a particular field. Cort's point about there being only 1 application is extremely important. While it may be frustrating and feel unfair it is not the sole fault of the CIHR that there isn't more being done on ME/CFS. They had 1 application!!! Had I known I would have applied.

If the CIHR opens a competition for ME/CFS research and receives a single submission what are they supposed to conclude? Just because a grant was submitted doesn't mean it would have been a valuable contribution to the field. What if the grant proposal wasn't feasible, was poorly conveyed or itself not a balanced representation of the disorder? Should the CIHR be obliged to give them funding because they were the only applicant? It is common for a researcher to submit the same grant 2-3 times before it gets funded. They use the feedback to strengthen the ideas and aims and slowly work their way into the top 10-13%.

To me it sounds like there may have been more to this than simply a biased ME/CFS expert. Reviewers are selected because they're supposed to know the field. But that causes a problem because they're probably familiar with the people writing the grants. Now lets say Dr. X has been battling Dr. Y for years, in terms of their authority in a subject area, for grant money, tearing apart each others papers when under review for publication, etc. etc. Now Dr. X gets a request from the CIHR to review a grant submitted by Dr. Y. The administrators at the CIHR probably aren't aware of the grudges and battles occurring in academia for every single field that they cover. So, Dr. Y's grant gets torn to shreds and denied, regardless of it's merit. He or she takes the feedback, rewrites the proposal, hopefully better, and submits again for the next competition.

Anyway, I agree, the system in Canada could improve. Funding and research for ME/CFS needs to improve. Who ever made the comment about contacting their member of parliament is probably on the right track.

 

[Justin]

Anyway, I agree, the system in Canada could improve. Funding and research for ME/CFS needs to improve. Who ever made the comment about contacting their member of parliament is probably on the right track.

I here all of what you are saying the Canadian government did only recieve one grant. Thats fine if funds are not available or limited how does this in any way explain $782 million going to diseases out of country that have validated treatments? Thats Canadian tax payer $ leaving the country.

The Grant was to be used for ME/CFS research:
SponsorThe Institute of Musculoskeletal Health and ArthritisDescription

The purpose of the grant would be to build a collaborative network of researchers and research users. The network would be national in scope and would encourage interaction between researchers and stakeholders (“clinicians, decision-makers, industry, patients, and other knowledge-users outside of the academic community”).

Specific objectives for the ME/CFS project are:

• To create an interactive and coherent Canadian network in ME/CFS that will tackle, in a coordinated manner, the clinical research challenges posed by this spectrum of chronic disabling disorders.

• To develop multiple population-based patient cohorts for translational research in ME/CFS.

• To facilitate national collaboration, resource sharing, capacity building and dissemination in priority research areas.

• To provide the needed infrastructure around which to undertake therapeutic and diagnostic clinical studies in Canada. In addition, this network will set the stage for potential future international collaborations.

• To advance research uptake, training, and knowledge translation in ME/CFS across multiple disciplines with a focus on expediting knowledge uptake to mobilize and build the research community.

Eligibility: Independent researcher

In addition to the NPA the Network must include a minimum of one representative from the following groups:

a. New investigator (i.e., an independent researcher within the first five years of their independent career)

b. Patient/family representatives/informal care providers

c. Health care professionals

The Program must be national in scope. The program must include representation from allthree regions: Western (BC, AB, SK, YT, NT) Central (MB, ON, NU) and Eastern (QC, NB, NL, NS, PE).Funding Availability

Maximum amount $200,000/yr to fund approximately two grants.

**An additional 20% (minimum) of the total project amount requested must be supported by outside sources (the network) as cash and/or in-kind**

The Grant money was supposed to be used for ME/CFS as per what was stated.

The grounds for denial "CFS is not a disease"

Further info is here:

http://www.meaction.net/2016/08/26/canada-officials-turn-down-grant-app-because-cfs-isnt-real/

I understand your argument but like u stated you didnt even know about the grant for ME/CFS.

How many other Drs and Groups do you think were not made aware of the grant and further the short time frame allocated to submit a grant?

The money was indirectly taken away from CFS/ME research and the reason being CFS is not a disease.

So how can you say it is a disease then say grounds for refusal that it is not a disease? Head scratch.

Further has anything in that grant info been followed through on? Have you heard anything? I havent.

You make a good argument and I see the validation in it but the grounds for refusal are based on old research, saying the disease is not real and I just dont get it at all.

 

[Justin]

If the CIHR opens a competition for ME/CFS research and receives a single submission what are they supposed to conclude?

Was the grant even conveyed to researchers and Drs Universities etc? There are groups in Canada and Drs that deal with the disease.

Just because a grant was submitted doesn't mean it would have been a valuable contribution to the field. What if the grant proposal wasn't feasible, was poorly conveyed or itself not a balanced representation of the disorder?

They made the grant available in a with limited time frame. The reason for denial was its not a disease and the researcher was new and seems to meet all the criteria laid out? Did the grant say anything about pain and rehabilitation for other diseases? My interprtation is no.

 

[Justin]

So you get a new entrant wanting to help in the field that needs help how could CIHR helped this individual or group refine the request based on the limited time frame for proposal? Isnt the CIHR suppose to help 400k sick ME/CFS patients as per what they stated?

 

[Justin]

@Joshua Grant are you a Dr or Researcher im just curious, and if so were you ever made aware of the Grant? Im asking in a non argumentative way.

If not how could people have been made aware of it so they could apply?

 

[Lissa]

I've had a recent set-back after a month of doing not so bad. I'm just plain angry at this disease!!! I want to yell at any powers that be to stop this insanity and help us. I'm so very tired and in pain. Sometimes a period of not-so-bad health followed by the inevitable relapse is almost cruel as I get a small glimpse of what my life could be if only...

Indeed!! I can so totally relate! Right there with you @Katie ...

 

[Cort]

So how can you say it is a disease then say grounds for refusal that it is not a disease? Head scratch.

That is a head-scratcher! The whole thing is a head-scratcher actually. I can't imagine that this kind of thinking is going to prevail.

Thanks for all the info.

 

[Cort]

Great Press Release by ME Action

http://www.meaction.net/2016/09/05/canada-research-reviewers-as-disease-denialists/

Here's one part:

“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”? Federal Minister of Health Dr. Jane Philpott has been under increasing pressure to address the flawed CIHR funding system as researchers become increasingly discouraged with decisions.

 

[J William M Tweedie]

I hope the backlash to this insane decision and moronic decider is a fierce as it was to the PACE study fraud. Anyone can drop a note or more to Canada's
National ME/FM Action Network <mefminfo@mefmaction.com> Initiatives have been undertaken, they tell me, including this thread, but more rigorous action needs to undertaken. The more people write the greater the chances they will step up their efforts. They are in the best position to do more and effectively. The local program here in Vancouver at the Women's and Children's hospital which I have just started, is just learning about this set back and told me today they will investigate. Please write to the Action Network! Thanks. It will of course help us all eventually.

 

[Cort]

I hope the backlash to this insane decision and moronic decider is a fierce as it was to the PACE study fraud. Anyone can drop a note or more to Canada's
National ME/FM Action Network <mefminfo@mefmaction.com> Initiatives have been undertaken, they tell me, including this thread, but more rigorous action needs to undertaken. The more people write the greater the chances they will step up their efforts. They are in the best position to do more and effectively. The local program here in Vancouver at the Women's and Children's hospital which I have just started, is just learning about this set back and told me today they will investigate. Please write to the Action Network! Thanks. It will of course help us all eventually.

Thanks!

 

[ClaireKnowles]

Cray cray. Terribly ignorant and sad.

 

[deboruth]

Wonder if the grant turndown had anything to do with dreadful Toronto Prof Ed Shorter who is paid by U Toronto medical school to be character assassin for PWME. Only solution is to make fun of him and also this ridiculous grant committee in every bit of media you can find . And also do the legal stuff. And have the IOM and P2P and more read into the minutes of Parliament.

 

[ShyestofFlies]

Here we are again?
4 hours ago via Co-Cure listserv...

New Catalyst Grant Competition

The Institute of Musculoskeletal Health and Arthritis (IMHA) of the
Canadian Institutes of Health Research (CIHR) has announced that it
has set aside $200k for ME/CFS research as part of a $1.2M catalyst
grant competition. CIHR will be awarding one-year catalyst grants of
up to $100k each.

This is an opportunity for existing ME/CFS researchers to expand their
research and for other researchers to enter this very interesting area
of study.

The purpose of the CIHR Catalyst Grant program is to provide seed
money, on a short-term basis, to support health research activities
which represent a first step towards the pursuit of more comprehensive
funding opportunities. It is expected that the funds will enable
researchers to generate preliminary data, validate methodology or
tools, and/or explore novel research ideas in the designated areas.

The deadline for applications is January 10, 2016. The applications
will then be reviewed to determine if they qualify for funding. If no
ME/CFS projects are found to qualify, no projects will be funded. The
anticipated announcement date is February 28, 2017 with funding to
start in April.

National ME/FM Action Network