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Discouraging News for Canadian ME Patients

Justin30

Senior Member
Messages
1,065
Note that they originally stopped accepting blood from people with ME/CFS in the aftermath of the 2010 retrovirus scare (as did many other countries).

Of course, that doesn't explain why they are STILL refusing it. Unless it IS a real disease after all, that is...

To me that just as Plain as Day staes they know that a viral, bacterial or parisitological ethiology exists and triggers or sustains the illness.

I have a substantial hunch that they the government has something they dont want getting out as several know triggers exists and this could spread a lot of fear that for example:

EBV
CMV
VZV
HHV6
HSV 1 and 2
And several well defined bacterial illness cause a life long cripling disease that the CDC, HHS and other health authorities have no prevention for or adequate testing methods.

Just imagine if the majority of people caught wind of the fact that these things cause ME and no vaccines or treatment modalities exist.

It would strike fear into most as can be seen by the severely ill. And there are many of them especially in Canada.

To add to this they here about treatments that are working for some in the US and they cant even gain access to them let alone a Dr that will provide them.

Its real mess. Well Canada just proves patient suffering and treatment for the most crippling, but wont kill you disease that exists Canada is not making this a significant part of their healthcare concerns.
 

Old Bones

Senior Member
Messages
808
Well I got a reply from my (liberal) MP Hedy Fry today in response to the last millions missing protest. It looks disappointing but here it is:

Yes, Hedy Fry's response is disappointing. I thought she was on our side. But, it is easier to be supportive while a Member of Parliament in opposition rather than in the party that forms a majority government.

I'm wondering if anyone on PR communicated with her prior to the last election and obtained a written response. If so, it would be interesting to compare the reply @panckage posted above with an earlier response.
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
To me that just as Plain as Day staes they know that a viral, bacterial or parisitological ethiology exists and triggers or sustains the illness.

Not quite. I must reiterate that we are dealing with the slowpokes of Canadian bureaucracy, who most likely really ARE that far behind the rest of the civilized world when it comes to health science. (And who are notorious for excessive caution.)

I have a substantial hunch that they the government has something they dont want getting out as several know triggers exists and this could spread a lot of fear

Personally, if I were to indulge my conspiratorial impulses, I would guess that they are afraid of disability fraud and Canadian publuic health care system not being equipped to handle a significant growth in the number of ME/CFS patients. (Neither worry is entirely unfounded, by the way, especially not the latter.)
 
I can't elaborate too much but can assure whoever here needs it, that, even though he is a newcomer, Alain Moreau, 1 - already has a very good notion of the nature of this illness, 2 - is very committed to studying it ever more and to stay the course no matter what, it is not a temporary involvement, and 3 - if my sources are correct he even is personally acquainted with pretty much the top ME/CFS researcher in the USA right now.

So, no worries there…

(what's more, Alain Moreau had invited the said researcher - yes, Ron Davis… - to chair an international scientific and medical advisory committee he intended for the Canadian network to come, which shows he was also committed to have this national project rooted in international science. BUT, but, thanks to the dark-ages reviewer of the grant, this won't happen. At least for now… )
 
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Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
The Quebec association spoke highly of Dr Moreau and his study, and that's good enough for me. We desperately need researchers in Canada willing to network and willing to ask the research questions.

To be fair, the Quebec association's testimony wouldn't (and, speaking objectively shouldn't) carry decisive weight with CIHR. Especially when the lead is not an acknowledged expert in the field.

This isn't to say that Dr. Moreau is incompetent (I don't have any evidence that he is), but just to point out, once again, that (sadly) the proposal isn't an obvious winner that got derailed by all the "not a real disease" nonsense.
 

Justin30

Senior Member
Messages
1,065
This isn't to say that Dr. Moreau is incompetent (I don't have any evidence that he is), but just to point out, once again, that (sadly) the proposal isn't an obvious winner that got derailed by all the "not a real disease" nonsense.

The bottom Line is Grant was to be used for ME/CFS *Not* another disease. If they only got one applicant its likely they did not send out then info to ME/CFS researchers in Canada or they did so but put such a small time frame for submission it was unrealistic.

How is it so difficult to see that Canada the CIHR was extremely in the wrong in this situation?

Unless you have info we dont then everything stated on this Grant and from letters sent to Canadian ME Patients nothing has been followed through on or communicated to the ME Community in Canada.

See the Grant below...does it say for the use of pain, arthritis, etc?

Does it say its purpose is for ME/CFS? Then the refusal says "CFS is not a real disease" yet according to the info below and and CCC, Alberta Critetia, CCDP Program, WHO ICD Code it is.

The CIHR Should not have accepted the comments for denial if they think it is a disease.

Its absolutely disgusting when you think about the whole picture....there are enough Canadian groups studying this...so if they didnt get enough grants create and extension and reach out to the researchers if you really want to help ME patients....

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**

Indirect Costs

0%

Project Duration

Up to 3 years

Special Notes

Networks already receiving federal funding support at the time of the funding start date are ineligible (e.g., Networks of Centre of Excellence Knowledge Mobilization, etc.).

Internal DeadlineTuesday April 5, 2016 04:30pm

Please submit your application/proposal along with an OR5 form to research.services@uoguelph.ca

External DeadlineTuesday April 12, 2016 08:00pmHow To Apply

PI to submit a full application on-line usingResearchNet. Scan and upload the signed signature pages including the routing slip in the Print/Upload Signature Pages task in ResearchNet prior to submitting your application.

Information for Co-applicants

If you need to meet a deadline set by the lead institution for this opportunity, please ensure that you provide the Office of Research with at lead 5 days in advance of the lead institution’s deadline to review the application, or your proposed component of the project. Please be in touch with the ORS (contact information below ahead of the deadline if it looks like it will be difficult for you to submit all the required documentation on time (ie, budget, proposal, OR5 form).
 

Justin30

Senior Member
Messages
1,065
Nothing you say is inconsistent with my point, nor is it anything I have ever challenged.

Fair enough the bottom line is that this is wrong and the money was funneled to something it was not intended to be used for.
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
BTW, I have a theory about the origins of the ridiculous statement that "there is no evidence that CFS is a disease". To quote Simon Wessely,
Critics of CFS point to the absence of any clear cut pathological process underlying the experience of CFS, and hence that it cannot be considered a valid disease. Again, perfectly true, and far from unique in clinical medicine. Instead, and using the important framework proposed by commentators such as Eisenberg, Mechanic and Kleinman, CFS is not a disease (since there is as yet no clear pathological abnormality), but an illness, in which the person is clearly distressed, symptomatic and unable to continue to perform in a normal fashion. In many settings, notably primary care, I would contend that doctors treat illnesses, and not diseases.

Replace Wessely's "illness" with the referee's even more neutral "condition", and it all makes sense. Oh, and Wessely's quote is from his contribution to a 1998 symposium with Elaine Showalter. :rolleyes:
 

shannah

Senior Member
Messages
1,429
Yes, Hedy Fry's response is disappointing. I thought she was on our side. But, it is easier to be supportive while a Member of Parliament in opposition rather than in the party that forms a majority government.

I'm wondering if anyone on PR communicated with her prior to the last election and obtained a written response. If so, it would be interesting to compare the reply @panckage posted above with an earlier response.

I also thought she was a supporter of the ME community @Old Bones .

Wasn't she a co-host of the Parliamentarian Breakfast that was put on in May by the National ME/FM Action Network?
 

shannah

Senior Member
Messages
1,429
This review panel is a result of the Researchers Emergency Meeting with the Health Minister a couple of months ago and their discontent with the current review process. These seven people essentially have been charged with reviewing the review process.

It probably will have nothing at all to do with the Catalyst Grant nor any review, if forthcoming, of the denial.

I only find it noteworthy that one of the reviewers appointed, Dr. Trish Groves a psychiatrist with BMJ, is a supporter and defender of PACE as per this link supplied by Jay Spero on Twitter:

http://www.investinme.org/Article-504 BMJ.htm



President’s Message: Launch of international panel to review CIHR's grants adjudication processes

September 28, 2016

I am pleased to announce today the launch of CIHR’s International Peer Review Expert Panel. Under the Chairmanship of Sir Peter Gluckman, Chief Scientific Advisor to the Prime Minister of New Zealand, the independent panel members will assess the design and implementation of CIHR’s new grants adjudication processes. The panel, which I had committed to commissioning earlier this year, comes at an opportune time as we are course-correcting the rollout of the changes to investigator-initiated programs and peer review processes based on the feedback received from the research community.

I am pleased with the exceptional caliber of the members who have agreed to join the panel. Their wealth of expertise in the science of peer review, critical international funding agency perspectives, and practice of research will bring fresh viewpoints on optimal grant adjudication processes. The panel members are:

Panel members will convene in Ottawa in January 2017 for a two-day series of meetings with key stakeholders and scientific community representatives.

More at
http://www.cihr-irsc.gc.ca/e/49986.html

Biographies
http://www.cihr-irsc.gc.ca/e/49979.html#2
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
This review panel is a result of the Researchers Emergency Meeting with the Health Minister a couple of months ago and their discontent with the current review process. These seven people essentially have been charged with reviewing the review process.

It probably will have nothing at all to do with the Catalyst Grant nor any review, if forthcoming, of the denial.

I only find it noteworthy that one of the reviewers appointed, Dr. Trish Groves a psychiatrist with BMJ, is a supporter and defender of PACE as per this link supplied by Jay Spero on Twitter:

http://www.investinme.org/Article-504 BMJ.htm
"I have good news and bad news. And they're both the same."

:bang-head: