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

[Cort]

MEAction reported today that Canada opened a grant for finding biomarkers in ME/CFS - and then when a grant application came through denied it in part because

1. ME/CFS is not a real disease and
2. It's a psychological disorder and the grant application did not focus on psychology.

[fright]

[/fright]The stated reason for the Institute of Musculoskeletal Health and Arthritis (IMHA) grant was to:

• 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.

The term "clinical research" apparently applies only to psychological research, and the denial was written by someone determined to block any biologically based grant. The Institute of Musculoskeletal Health and Arthritis (IMHA) must have known what they were doing when they handed the first grant application to this reviewer, and gave all future applicants a shot across the bow: don't give us any applications seeking to uncover the biological basis of ME/CFS. Given the language used in the review fibromyalgia patients shouldn't expect much better from Canada.

The initial grant's language that ME/CFS was part of a "spectrum of chronically disabling disorders" perhaps set the tone for what was to follow. The grant reviewer immediately took the authors of the application to task for assuming that ME/CFS was a disease.

From the MEAction post

The application notes “The disease is challenging because the etiology and pathophysiology are not well understood.”; however, there is no evidence that CFS is a disease…. There is evidence that suggests labels assigned to medically unexplained syndromes are an artifact of medical specialization.(3)

As to Canada's hopes to "synergize (with) research activities in ME/CFS in Canada and the United States" at the NIH - well, good luck with that; the NIH is almost entirely focused on biology in the U.S., and the recent IOM and P2P reports emphasized again and again that ME/CFS is real disease. That, in fact, was the first and most important message the reports sought to get out; it apparently never got through to the IMHA.

The grant reviewer described ME/CFS entirely in psychological terms:

Psychosocial factors are strongly associated with the development of CFS. For example, individuals with CFS have been found to rate themselves higher than controls on the ‘hard-driving’ and ‘many outside interests’ of the Bortner type A personality scale. Individuals with CFS have also been found to adopt confrontational coping styles and to rate themselves highly on an ‘action proneness’ scale. CFS has been found to be associated with a Defensive High Anxious coping style, which may directly affect physical well-being through the hypothalamic-pituitary-adrenal (HPA) axis . Another study of 195 individuals diagnosed with CFS found that over 80% satisfied diagnostic criteria for Depression or Generalized Anxiety Disorder, and depression is an established risk factor for development of CFS

He/she then referenced Vermoulen's hypothesis that ME/CFS is a psychological disease that occurs when people mistakenly believe their symptoms mean something and become inactive to avoid them.

Attributing symptoms to underlying physical pathology results in low levels of physical activity, which in turn amplifies fatigue severity.

Looking for diagnostic biomarkers? That's apparently a fools errand.

The stated goals of the proposed network are reasonable (i.e. create a research network, standardize care, provide education to researchers and clinicians, and host an annual meeting to develop collaboration); however, the strong focus on undiscovered physical pathology and failure to acknowledge the substantial literature that has established psychosocial factors as both a cause and perpetuating factor for CFS is concerning.

The fact that a partner to the grant saw ME/CFS as a physical disease was apparently a big no no - and a cause for the grant rejection:

The applicants advise that “the ME/FM Action Network is one of our primary partners.” A review of this organization’s site (http://www.mefmaction.com/) reveals a focus on conceptualizing CFS as a physical disease best managed by rest and activity limitation.

The response to the grant was not good anyway - only one application was made for the three year $600,000 grant and the grant opportunity is closed now. Unless the Canadian Health Institutes disavow this grant review, though, I can't imagine that anyone else with a biologically based grant application will try Canada in the next one.

• Read MEAction's more complete post here - http://www.meaction.net/2016/08/26/canada-officials-turn-down-grant-app-because-cfs-isnt-real/
• Check out the actual grant review here

 

[Cort]

Another epic disappointment. What the hell is wrong with these people? Not real.

Hopefully this is an aberration. This is worse than the U.K. They at least will fund biological research - that's clearly not possible right now at the federal level in Canada.

 

[Terresa]

The reviewer needs to seriously consider a career change. In his or her current occupation, he/she is poses a physical threat to all Canadians with ME. One only hopes that this individual is nearing retirement and merely "killing time", thus explaining the fact this his or her knowledge is 20 years out of date.

 

[acouchy]

Not what this Canadian wants to hear. Thankfully I was mentally prepared for this day. I was very lucky to see Dr. Carruthers for a short time and during one of my appointments I mentioned how awful things were in the UK. I was told that things were just as bad here. After reading this, it appears he was right. It is still heartbreaking to read. I wonder what will happen if the actual cause is found. Will Canada still deny that ME/CFS is a real disease and let half a million people continue to suffer? I better win the lottery so I can afford to move to Norway.

Next time anyone is jealous of Canadian healthcare... don't be. Any illness there is not a test for they deny. Long waiting periods for surgery. Long waiting periods for appointments to see specialists. Long waiting periods for MRI's and CT scans. Not enough GP's. Long waiting periods in the emerg. I have been waiting 7 months and still no word on appointment dates to see an Internist and get an ECG. I have been abandoned.

Sorry for the rant. So pissed off right now. 18 years of suffering and now this... insult to injury.

 

[GG]

Next time anyone is jealous of Canadian healthcare... don't be. Any illness there is not a test for they deny. Long waiting periods for surgery. Long waiting periods for appointments to see specialists. Long waiting periods for MRI's and CT scans. Not enough GP's. Long waiting periods in the emerg. I have been waiting 7 months and still no word on appointment dates to see an Internist and get an ECG. I have been abandoned.

Sorry for the rant. So pissed off right now. 18 years of suffering and now this... insult to injury.

Yeah, and many brain dead Americans want Single payer/more Gov't control of Healthcare, not with an illness like ours, so we are rather brain dead some times

we need to get rid of 3rd payer system in the US, so people are more aware of costs, and can shop around etc...

GG

 

[Cort]

Not what this Canadian wants to hear. Thankfully I was mentally prepared for this day. I was very lucky to see Dr. Carruthers for a short time and during one of my appointments I mentioned how awful things were in the UK. I was told that things were just as bad here. After reading this, it appears he was right. It is still heartbreaking to read. I wonder what will happen if the actual cause is found. Will Canada still deny that ME/CFS is a real disease and let half a million people continue to suffer? I better win the lottery so I can afford to move to Norway.

Next time anyone is jealous of Canadian healthcare... don't be. Any illness there is not a test for they deny. Long waiting periods for surgery. Long waiting periods for appointments to see specialists. Long waiting periods for MRI's and CT scans. Not enough GP's. Long waiting periods in the emerg. I have been waiting 7 months and still no word on appointment dates to see an Internist and get an ECG. I have been abandoned.

Sorry for the rant. So pissed off right now. 18 years of suffering and now this... insult to injury.

I guess it kind of makes sense = the Canadian ties to the UK are pretty strong I guess.

There are some really good Canadian researchers working on ME/CFS though. David Patrick works at Canada's "CDC" and he's firmly on board - in fact he's presenting at the IACFS/ME conference. Michael Houghton - Lasker award winner - is also doing research on ME/CFS and Gordon Broderick at the NSU is from Canada. Plus the Canadian Consensus Criteria - which changed so much for this disease - came out of Canada!

The powers that be, however, are in a bad place.

 

[Cort]

In addition, this network will set the stage for potential future international collaborations.

The only international collaborations it looks like this group is going to work with are the UK and Netherlands CBT/GET researchers - who got pretty creamed with their use of the Oxford definition - by the IOM.

 

[acouchy]

I guess it kind of makes sense = the Canadian ties to the UK are pretty strong I guess.

There are some really good Canadian researchers working on ME/CFS though. David Patrick works at Canada's "CDC" and he's firmly on board - in fact he's presenting at the IACFS/ME conference. Michael Houghton - Lasker award winner - is also doing research on ME/CFS and Gordon Broderick at the NSU is from Canada.

The powers that be, however, are in a bad place.

I will look forward to hearing David Patricks presentation. If I remember correctly there was at least one questionable sentence in last years exercise study. Should be interesting.

Feel ashamed of my country.

 

[weyland]

We don't have to feel lonely for once. This appears to be an endemic problem with the idiots they have reviewing applications at CIHR:

http://ottawacitizen.com/news/local...-from-cihr-reviewers-who-rejected-study-grant

There appears to be an anti-biomedical research element on their review panel and these individuals need to be ferreted out and fired.

 

[Justin]

Not what this Canadian wants to hear. Thankfully I was mentally prepared for this day. I was very lucky to see Dr. Carruthers for a short time and during one of my appointments I mentioned how awful things were in the UK. I was told that things were just as bad here. After reading this, it appears he was right. It is still heartbreaking to read. I wonder what will happen if the actual cause is found. Will Canada still deny that ME/CFS is a real disease and let half a million people continue to suffer? I better win the lottery so I can afford to move to Norway.

Next time anyone is jealous of Canadian healthcare... don't be. Any illness there is not a test for they deny. Long waiting periods for surgery. Long waiting periods for appointments to see specialists. Long waiting periods for MRI's and CT scans. Not enough GP's. Long waiting periods in the emerg. I have been waiting 7 months and still no word on appointment dates to see an Internist and get an ECG. I have been abandoned.

Sorry for the rant. So pissed off right now. 18 years of suffering and now this... insult to injury.

This is all fact it really is like this in Canada...now this messed up really.

 

[Edie]

This is all fact it really is like this in Canada...now this messed up really.

Being Canadian, I'm thoroughly disgusted! I thought we had gone way beyond this point. Time for us to have a conversation with our Member of Parliament!

 

[Justin]

Being Canadian, I'm thoroughly disgusted! I thought we had gone way beyond this point. Time for us to have a conversation with our Member of Parliament!

This response needs to make it to the Ministre of Health. Canada needs to be called out.

 

[jeanie pochatko]

Yep...we thought our health care was soooo broken we needed to throw what was working away. Now look at the mess Obama care is!! I wish we would all stop putting our heads in the sand and believing that big government is the solution to our problems ! We are going to go the same way Canadian health care is if we keep believing that nonsense. Let's get real. Our Heath care system had some problems before, but we could have fixed them.

 

[GG]

Yep...we thought our health care was soooo broken we needed to throw what was working away. Now look at the mess Obama care is!! I wish we would all stop putting our heads in the sand and believing that big government is the solution to our problems ! We are going to go the same way Canadian health care is if we keep believing that nonsense. Let's get real. Our Heath care system had some problems before, but we could have fixed them.

Who is this we you speak of? Not me, I knew from my experience with CFIDS/ME/CFS that the gov't was just going to create more chaos!

the things that Gov't get more involved with/subsidizes continues to go up beyond inflation, year, after year, after year! (Education, health care and Housing so far.)

GG

 

[Katie]

We must (again) turn to other countries for leadership in ME/CFS research.

I will however, be consoled by the recent news of the discovery of abnormalities in the metabolic pathways that will lead to concrete diagnosis and hopefully treatment
This was my response to the post on facebook from Canada's ME site:

I'm not much of a militant person, usually take things in stride, but this is beyond ridiculous. I'm not the only one writing to our gov't to get them to give their heads a shake and enter the 21st century! These kind of statements enrage those of us with the disease and set our "progress" back to the dark ages. I'm truly sick and tired of hearing this kind of bs and from my own government.

As I said in a letter to MEFM Society of BC we need a few lawyers to take this to court-we are being slandered and treated as idiots!! There are plenty of diagnostics now-a-days to prove ME is a real physical disease. Shame on them

 

[Joshua Grant]

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.

 

[sharonklb]

We must (again) turn to other countries for leadership in ME/CFS research.
I will however, be consoled by the recent news of the discovery of abnormalities in the metabolic pathways that will lead to concrete diagnosis and hopefully treatment
This was my response to the post on facebook from Canada's ME site:
I'm not much of a militant person, usually take things in stride, but this is beyond ridiculous. I'm not the only one writing to our gov't to get them to give their heads a shake and enter the 21st century! These kind of statements enrage those of us with the disease and set our "progress" back to the dark ages. I'm truly sick and tired of hearing this kind of bs and from my own government. As I said in a letter to MEFM Society of BC we need a few lawyers to take this to court-we are being slandered and treated as idiots!! There are plenty of diagnostics now-a-days to prove ME is a real physical disease. Shame on them

I have spent years listening to so called intelligent people dismiss me as some sort of hypochondriac with a penchant for laziness....the same people have usually been handed literature which indicates they need to research before opening their mouths.....sadly, i assume as soon as i left them, they popped them in the bin!
God forbid the UK not only increases it's "getting into bed" with Canada, but decides to pull the duvet over their heads too.
We have an MP called Yvette Cooper who admits she was bedridden for months with the condition, yet refuses to acknowledge it now, apart from the odd occassion's when she needs a few votes!
The problem is the lunatics are taking over the asylum!!!!!

 

[Justin]

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).

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.

 

[Justin]

ME is a disease as per the WHO I just dont understand how when the overlapp in names exists as some call ot ME some call ot CFS some call it ME/CFS and the list goes on....

 

[Justin]

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 love Canada would choose to live nowhere else...period.

The blatant comment made in the rejection of the grant is inexcusable when the money was to be used for ME/CFS as per the statements made and info released by Canada.

Unfair is that they are choosing to neglect a massive # of people severely afflicted with not one approved treatment and neglect of the current research and the NIH.

That info I am refering to is the IOM report, P2P, Dr Francis Collins of the NIH, NIH Study, Standford, Harvard, Johns Hopkins Hospital, Simmaron Research, Columbia, Ian Lipkin, Mady Hornig.....the list goes on....

Inexcusable...

Patient neglect and lack of funding is what is unfair its not just in Canada...but by not being part of the solution you are part of the problem.