Discouraging News for Canadian ME Patients

[Justin30]

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

Thank you Dr Hymans. I am glad he is standing up for ME patients.

 

[Glycon]

This started off as a news piece, but then I got more and more sarcastic until I had to say it was an opinion piece. Please promote and comment if you like it; opinion pieces end up way at the bottom of #MEAction's site:

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

While there is no question that the decision is a huge embarrassment and testifies to the utter incompetence of the referees, I believe that some of the concerns expressed (ineptly) by the authors of the letter cannot be dismissed out of hand.

From what I understand, it really is the case that Alain Moreau doesn't have any noteworthy peer-reviewed publications in this area. Even if we expand our search beyond "Alain Moreau AND chronic fatigue syndrome". I am not sure that, as a Canadian with ME/CFS, I want him to head a research effort to "establish biomarkers". (In fact, I am not sure we are even at the point where we are in position scientifically to "establish biomarkers", but that is a separate, long and complicated conversation...)

Moreau's team would have to convince the reviewers that they are in position to make significant progress in an area where so little progress has been made for so long. Quite independently of the incompetence of the reviewers, I strongly suspect that the applicants didn't do a good job. At the very least, it would be most important for all of us to assure ourselves that their failure is due to the incompetence of the referees, rather than to their own shortcomings. (There are some potential warning sign in the letter. For example, unless the referee's discussion of the Alberta guidelines and the issue of conflict of interest is COMPLETELY wrong-headed, I have strong suspicions that the application simply wasn't very well thought-out.)

We need more research and more funding for research. But the last thing we need is more funding for unpromising research.

Finally, there is just the sad reality that Canada simply may not possess a body of scientific experts and medical specialists sufficient to support a national research program into biomarkers for ME/CFS. This doesn't mean that we surrender the field to the biopsychosocial approach. What it does mean is that Canadian funds are possibly best used elsewhere and that the best approach for Canadian researchers is to collaborate with (and to a great extent piggy-back on) the efforts of the US and international medical community. There is nothing wrong with admitting that. Canada doesn't have and doesn't need its own fighter jet program for similar reasons.

To be sure, nothing I say is meant to excuse the inanity of the CIHR referees.

 

[Kati]

Hi @Glycon, the problem with not having a research program and a national strategy is many folds:

1) doctors have no clue about diagnosis, feature of illness,, treatment management, best practices.
2) no medical specialties, which means clinical trials are not likely to happen.if there are no clinical trials, doctors are usually not allowed to give off-label drugs, especially when it comes to the expensive ones like Rituximab or Ampligen.
3) patients get poor services, including access to disability insurance
4) not many can afford out of country health care. As Canadians we are contributing through our taxes for our health care system. (Of course things get extra complicated when you think about federal/provincial jurisdiction, transfer to provinces,etc) if Canada decided to not get ffer services for Me/CFS, then it would be in their obligation to fund out-of-country services for their patients, you know the 411,000 of us. Of course they don't do that. i have personally triedthat route myself with my provincial government and of course it was refused because 'it's just chronic fatigue, we have never funded out-of-country care for 'chronic fatigue'.

Personally the disease not belonging to any medical specialty is a huge problem. It means that physicians are not obligated to study this disease. With a medical specialty on board, there is a larger pool of physicians considering the pathology, the treatments, and clinical trials in conferences and in universities. This is what is happening for all kinds of diseases, from rheumatoid arthritis to multiple sclerosis, to Hepatitis C to ... You name it.

Canada values equality and fairness for all of their Canadians, so access to services especially for a patient population of 411,000 needs to prevail. Patients have a right to competent physician for their disease, and access to treatments.

 

[JaimeS]

I believe that some of the concerns expressed (ineptly) by the authors of the letter cannot be dismissed out of hand.

The point isn't the quality of the submission in this case. It could've been awful crap and there is still absolutely no call to state that the reason the application was rejected was that the proposal did not reflect the psychogenic model of ME.

-J

 

[Glycon]

@Kati If you read my post again, you'll see that it is compatible with everything I say.

I agree that more funding is needed. But it is just as important to make sure funding goes to the right people. I am not sold on Moreau independently of CIHR's awful reasoning.

I agree with your points (1)-(4). But it isn't clear that a RESEARCH program is what is needed to address them. Certainly not by throwing money at people promising to look for biomarkers.

Given that the Greater Toronto Area (3rd most populous metropolitan area in North America!) has the grand total of ONE(!!!) ME/CFS clinical program, I'd say priorities should be more modest.

No comment on Canada valuing equality and fairness.

 

[Glycon]

The point isn't the quality of the submission in this case. It could've been awful crap and there is still absolutely no call to state that the reason the application was rejected was that the proposal did not reflect the psychogenic model of ME.

-J

We are not disagreeing. However, there are always multiple points to be made. It does no good simply to echo each other, even when we're right.

By the way, the fact that CIHR couldn't find competent reviewers isn't unconnected to there being serious questions about the proposal. They are both drawn from the same shallow pool.

 

[alex3619]

Finally, there is just the sad reality that Canada simply may not possess a body of scientific experts and medical specialists sufficient to support a national research program into biomarkers for ME/CFS.

I don't see that as a barrier. Spain manages to do it, and look at Norway. What we have now is groups who are collaborating internationally. That would seem to be the way to go, create global alliances and share the base research around.

 

[L'engle]

I don't see that as a barrier. Spain manages to do it, and look at Norway. What we have now is groups who are collaborating internationally. That would seem to be the way to go, create global alliances and share the base research around.

Sadly I could imagine that happening in Canada 30 years ago much more readily than in the last decade

 

[Glycon]

I don't see that as a barrier. Spain manages to do it, and look at Norway. What we have now is groups who are collaborating internationally. That would seem to be the way to go, create global alliances and share the base research around.

Reread the rest of the paragraph the opening of which you quoted.

 

[Kati]

@Kati If you read my post again, you'll see that it is compatible with everything I say.

I agree that more funding is needed. But it is just as important to make sure funding goes to the right people. I am not sold on Moreau independently of CIHR's awful reasoning.

I agree with your points (1)-(4). But it isn't clear that a RESEARCH program is what is needed to address them. Certainly not by throwing money at people promising to look for biomarkers.

Given that the Greater Toronto Area (3rd most populous metropolitan area in North America!) has the grand total of ONE(!!!) ME/CFS clinical program, I'd say priorities should be more modest.

No comment on Canada valuing equality and fairness.

Dr Moreau is doing a gene expression study. While he is unknown to us, he has reached out the AQEM and the local doctors in Montreal to look for patients. I am thankful he got involved in the first place. I am not familiar with his credentials but i believe he is associated with univerity of Montreal and i also suspect he has research buddies. We so desperately need that.

The grant was fairly modest. It was not millions and millions of dollars. There is risk involved when awarding a grant that nothing will pan out. However dr Moreau is a biomedical researcher, and made an application. CIHR should have taken the risk, considering 411,000 Canadians are left behind with no health care.

Lastly, Toronto suffers from having Dr Shorter affiliated with UofT. ONtario also suffers from branding ME as an environmental illness. Therefore, no funding and no one wanting to get involved.

Pleased to meet you, @Glycon i am not opposing. i am simply discussing. I really think Canada needs to get on track here.

 

[JaimeS]

It does no good simply to echo each other, even when we're right.

People generally seem perfectly satisfied with this!

In general, just complaining about anything -- including the possible lack of quality of the grant submission -- also does no good. Let's all leave public forums forever unless it is to make direct suggestions for change.

...no?

(Sounds attractive, actually... except that through pointing things out / discussing, we sometimes really do get ideas for action...)

Since your main idea was that the grant application probably wasn't any good, I reiterated that even if the grant had been shining with the light of a thousand stars and was the Second Coming of grant proposals, it would have still been rejected out of hand due to the researchers' bias.

That's the most important thing right now. If someone had said "this research proposal isn't very good and I'm rejecting it for sensible reasons X Y and Z" we would still have zero Canadian studies, but we would be having a very different conversation about how to help people improve research proposals in Canada. We would be having the conversation you're having.

It's not that what you're saying isn't quite possibly the case, or isn't important. But it is a different conversation. I know your point is that research quality is linked to reviewer quality, and I'm sure that's true. However, if someone told me that bias exists in the grant approval process, I wouldn't first say that then grants ought to be better, or that only by improving the entire Canadian medical research arena could we hope to move anyone in any direction. That's a big and hazy goal.

-J

 

[Glycon]

Dr Moreau is doing a gene expression study. While he is unknown to us, he has reached out the AQEM and the local doctors in Montreal to look for patients. I am thankful he got involved in the first place. I am not familiar with his credentials but i believe he is associated with univerity of Montreal and i also suspect he has research buddies. We so desperately need that.

Desperation is no excuse for ignoring warning signs, of which Moreau's proposal seems to have plenty.

The grant was fairly modest. It was not millions and millions of dollars. There is risk involved when awarding a grant that nothing will pan out.

There is the risk that a questionable study program (scientifically, ethically, etc.) would discourage further government investment, which would in turn discourage other researchers from getting involved. Given that we shouldn't be sold on there being any significant benefits stemming from Moreau's program, this is a very serious risk.

 

[Kati]

@Glycon here for you

 

[Glycon]

In general, just complaining about anything -- including the possible lack of quality of the grant submission -- also does no good. Let's all leave public forums forever unless it is to make direct suggestions for change.

I wasn't complaining about anything, actually...

Since your main idea was that the grant application probably wasn't any good, I reiterated that even if the grant had been shining with the light of a thousand stars and was the Second Coming of grant proposals, it would have still been rejected out of hand due to the researchers' bias.

While you could well be right, I am not so sure. It wouldn't surprise me to discover that some of the referee's howlers ("not a disease", etc.) are at least in part the result of attempting to provide politically acceptable reasning for rejecting the application that they found unsatisfactory for other (possibly legitimate) reasons.

Perhaps I'm being excessively charitable, but I know a thing or two about how these things work in Canada and it sadly that would be par for the course.

 

[JaimeS]

It wouldn't surprise me to discover that some of the referee's howlers ("not a disease", etc.) are at least in part the result of attempting to provide politically acceptable reasning for rejecting the application that they found unsatisfactory for other (possibly legitimate) reasons.

....wouldn't it be more legitimate to say it was just a poor proposal?

They did actually state that they couldn't find any other ME studies by the applicant as one of the reasons for rejection; but this is discouraging to new researchers who want to enter the field. Does he have to apprentice to a more experienced researcher in ME before he tries on his own?

I mean, ideally, yes... he'd work with someone else before striking out on his own. But who to apprentice himself to in Canada? He's got to start somewhere.

 

[Glycon]

....wouldn't it be more legitimate to say it was just a poor proposal?

Sadly, logic and rationality rarely apply to Canadian public medicine. (Imagine a horrible offspring of a drunken hookup of UK and California, if you will...)

They did actually state that they couldn't find any other ME studies by the applicant as one of the reasons for rejection; but this is discouraging to new researchers who want to enter the field. Does he have to apprentice to a more experienced researcher in ME before he tries on his own?

I mean, ideally, yes... he'd work with someone else before striking out on his own. But who to apprentice himself to in Canada? He's got to start somewhere.

Would you give ALL the ME/CFS money to a guy who has NO background in ME/CFS?

And what he should do is collaborate with the international scientific community. (Step #1: Get an English translation of your website, for crying out loud!)

 

[Kati]

Sadly, logic and rationality rarely apply to Canadian public medicine. (Imagine a horrible offspring of a drunken hookup of UK and California, if you will...)



Would you give ALL the ME/CFS money to a guy who has NO background in ME/CFS?

And what he should do is collaborate with the international scientific community. (Step #1: Get an English translation of your website, for crying out loud!)

That's the thing, there is no MEcfs pot. I subscribe to the CIHR Institute of Musculoskeletal Health and Arthritis newsletter where apparently ME is 'housed'. The newsletter announced the incoming conferences, and omitted the most important biennal international conference for ME! IACFSME due for October 28th. The newsletter is viewable here: http://cihr-irsc.gc.ca/e/49881.html

 

[JaimeS]

(Imagine a horrible offspring of a drunken hookup of UK and California, if you will...)

....incest.

Would you give ALL the ME/CFS money to a guy who has NO background in ME/CFS?

Ha! If 'all' is a single, very small grant? Sure, especially if he's the only one who bothered to apply. Then send him a cadre of more experienced researchers to help. The ME/CFS research community is a small group but there are actually lots of helpful folk who would step in to help a new researcher to the field with good advice. If he were to travel to the IACFSME conference in October he would meet lots of those selfsame people all in one place and be able to talk through his strategy.

International collaborations in a more official capacity are actually very, very expensive, however. This flyspeck of a grant certainly wouldn't have supported a single additional big-name researcher at work -- probably what we saw was enough to pay this guy and his assistant, not Mady Hornig and Jose Montoya, and certainly would not be enough to support an international collaborative.

Basically, they offered a grant so small that it would only attract someone who was a new researcher trying to get his feet wet, and then bemoaned the fact that no big-name, already-famous researcher had applied for it. The whole thing's a farce.

-J

 

[JaimeS]

The newsletter announced the incoming conferences, and omitted the most important biennal international conference for ME! IACFSME due for October 28th.

Wow, crossed.

 

[Kati]

Wow, crossed.

The CEO of that institute himself attended the 2014 conference in San Francisco. There are no words if he will attend. It doesn't look good.