Discouraging News for Canadian ME Patients

[Glycon]

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.

Once again, you are being way too reasonable. I think if this degree of reasonableness could have been expected from the Canadian establishment, we wouldn't be discussing this ridiculous letter in the first place.

 

[JaimeS]

There is word that I might go, but it's very expensive, so that also doesn't look good.

 

[JaimeS]

Once again, you are being way too reasonable.

Happy to be accused of this!

And now this has been very stimulating discussion, but bed folks. TTYT.

 

[Kati]

There is word that I might go, but it's very expensive, so that also doesn't look good.

I wonder if PR forums would consider sponsoring someone like you to go in exchange for writing reports about it like they did for Invest in ME.

Also, if you are willing to write reports, perhaps a little bit of crowd funding could actually help.

I would love to attend however i am wayyyy too sick.

@Mark @Jonathan Edwards

 

[Justin30]

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.

The reality is that they claimed it not to be a disease funneled the money from ME/CFS to something completely different.

Further the its not like they gave any length of time to put a proposal together.

It also appears that they didnt even inform Canadian Researchers or Drs of the Grant.

This really smells bad the way it was handled...on many fronts.

 

[Justin30]

The money should have been used for MECFS research as it was stated in the Grant not something else period.

The reason for denial was inbelievable considering the researcher met all the criteria as it appears at face value.

 

[panckage]

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:

Thank you for writing to my office with regard to support for those suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). I appreciate hearing from constituents, as it keeps me grounded and helps me focus on your priorities, as your Member of Parliament.

Our new Liberal government, through the Canadian Institutes of Health Research (CIHR), contributes to the research agenda for conditions such as ME / CFS and fibromyalgia (FM).


The CIHR’s Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA) supports the creation of a national network for translational research in ME/CFS in the current fiscal year. This network will assist in capacity building and offer a forum to discuss ideas and to share best practices. In addition, this will provide the infrastructure required to undertake therapeutic and diagnostic clinical studies in Canada. Further, this network will set the stage for future international collaborations.


From the very beginning, the CIHR-IMHA has engaged, and continues to engage, with patients and patient advocates through a Knowledge Exchange Task Force (now known as the CIHR IMHA Research Ambassadors), which envisioned the development of a new and innovative approach to link researchers and key stakeholders, many of whom suffer from chronic diseases.


Currently, CIHR-IMHA is also participating in a James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. This partnership’s goal is to solve the unanswered questions on the management of adult fibromyalgia from patient, caregiver, and clinical perspectives, and then prioritize those questions that the participants find to be most pressing. Given the known overlap in FM and ME/CFS symptomatology, this partnership shall hopefully help us to better understand and manage ME/CFS too.


Further information about this work can be found on the CIHR’s website:http://www.cihr-irsc.gc.ca/e/49106.html.


Once again, thank you for writing to me about ME/CFS. I appreciate the opportunity to present some of the concrete actions being taken by our government. Please do not hesitate to write again should you have any further questions, on this topic or any other.

Sincerely,

Hon. Hedy Fry, PC, MP

Chair, Pacific Liberal Caucus

Vancouver Centre

 

[ScottTriGuy]

Thanks for sharing.

All the Liberals are trotting out the same 3 laughable points in response to ME patients:

National Network: Denied by CIHR because ME is psychosomatic so why would you look for a biomarker.

Knowledge Exchange Task Force: no ME representative

James Lind: 1) ME is not FM, 2) the James Lind protocol was changed by Fitzcharles to exclude patient involvement...the exact opposite of the protocol.

But I am surprised Fry put her name to this. Expected more.

 

[Kati]

I participated in Carolyn Bennett's weekly facebook chat yesterday and there is not much to report. Unfortunately she is very busy with aboriginal affairs (and doing a great job).

Just a thought, we might have to go through the opposition party, notably, Don Davies, NDP health critic.

 

[Glycon]

National Network: Denied by CIHR because ME is psychosomatic so why would you look for a biomarker.

To be fair, that is not quite what they said. They said that there is controversy over whether CFS is a "real disease". That part is obviously beyond ridiculous. They also said that there are psychological elements to the disease, which the proposal doesn't address. This is actually a valid point, though a bit of a red herring in that context. After all, until we make A LOT of scientific progress, ME/CFS is going to be partially defined in terms of cognitive symptoms. Acknowledging that is not to say that it's a psychiatric condition, or socially constructed, or whatever. It's just not losing sight of the big picture.

I am surprised Fry put her name to this. Expected more.

I'm not. What was he [EDIT: Actually, "she"; Hedy Fry is a female MP, apparently] supposed to say? That Canadian public science and medicine areflailing incompetently as they usually are?

 

[L'engle]

After all, until we make A LOT of scientific progress, ME/CFS is going to be partially defined in terms of cognitive symptoms.

Actually the cognitive symptoms are one of the most overlooked categories of dysfunction. As well, 'cognitive' does not mean 'psychological'. The processes that lead to problems in cognitive stamina are physiological, not based in emotional processes.

 

[Snowdrop]

They also said that there are psychological elements to the disease, which the proposal doesn't address. This is actually a valid point,

No. It's not. We've had plenty of psych research. Biomed research doesn't need to incorporate anything psychological.

PS I expect you're not Canadian as Hedy Fry is a woman. I don't follow politics but even I know this as she certainly has made news over the years.

 

[Glycon]

Actually the cognitive symptoms are one of the most overlooked categories of dysfunction. As well, 'cognitive' does not mean 'psychological'. The processes that lead to problems in cognitive stamina are physiological, not based in emotional processes.

It doesn't MEAN "psychological", but it does suggest that psychological factors can (and, as far as present-day diagnosticians are concerned, should) enter into the picture. To say nothing of psychiatric elements in the differential, comorbidities, etc.

 

[Glycon]

No. It's not. We've had plenty of psych research. Biomed research doesn't need to incorporate anything psychological.

You're being way too categorical, I think. With both your claims.

PS I expect you're not Canadian as Hedy Fry is a woman. I don't follow politics but even I know this as she certainly has made news over the years.

I am Canadian, actually. So perhaps I should be doubly embarrassed. But I haven't been following Canadian politicians, since I have better things to do with my time and energy.

(PS: Had I been healthy, I'd have said the same thing. )

 

[alex3619]

Sadly, logic and rationality rarely apply to Canadian public medicine.

[My strikethrough]

Applies everywhere. Bureaucracy follows rules but is not always rational.

 

[Glycon]

[My strikethrough]

Applies everywhere. Bureaucracy follows rules but is not always rational.

Dude! (Or Gurl!)

While you're quite right, it is very difficult to find a match for Canada's peculiar brand of stupidity anywhere within the developed world.

 

[Kati]

https://twitter.com/i/web/status/778059109937483776

Feel free to retweet if you agree

 

[Glycon]

https://twitter.com/i/web/status/778059109937483776

Feel free to retweet if you agree

It may also be worth pointing out that Canadian Blood Services accepts blood donations from people with FM, but not from people with ME/CFS.

 

[Justin30]

It may also be worth pointing out that Canadian Blood Services accepts blood donations from people with FM, but not from people with ME/CFS.

Doesnt that say something like hmmm maybe there is a real illness behind this.....thats why its BS the CIHR said its not a disease.

Plus nothing has been discussed or made public about the ME/CFS working group at all whos in it? What drs are they working with? Has it been created? When are the meetings? Etc.

This whole issue just sounds like lip service.

If the stats are correct 400k have it in Canada leaving 100k bed or housebound with no treatment and our tax payer $s 782 million get sent away to HIV and Malaria research for other Countries and then Canada claims we have no money.

HIV and Malaria have effective treatments im not downplaying these diseases but its not OK when hundreds of thousands are suffering with ME in Canada.

There is no excuse for how every aspect of this grant was handled and then the money funneled to other illnesses....fak I sound like a broken record cause I keep repeating myself.

 

[Glycon]

Doesnt that say something like hmmm maybe there is a real illness behind this.....thats why its BS the CIHR said its not a disease.

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...