Canada: pre-announcement of a grant for planning and dissemination for ME

[Kati]

She's not interested in ME, that is self-evident.

Dr Philpott is interested in issues that makes her look good. International aid. HIV/AIDs, Opioid crisis. aboriginal health. All of that makes it to the news and gives her press coverage.

However she gets lobbied by other groups like ovarian cancer for instance and she responds and happily meets with these folks.

Our problem remains to convey the severity, the cost to society and the fact that the British Psych lobby is all over the media, Cochrane reviews and scientific journals. There will be a day when our most brilliant scientists find the cause of our illness, and this will help us lots. In the meantime we are facing a wall. It doesn't mean we stop trying to reach out.

 

[Solstice]

Dr Philpott is interested in issues that makes her look good. International aid. HIV/AIDs, Opioid crisis. aboriginal health. All of that makes it to the news and gives her press coverage.

However she gets lobbied by other groups like ovarian cancer for instance and she responds and happily meets with these folks.

Our problem remains to convey the severity, the cost to society and the fact that the British Psych lobby is all over the media, Cochrane reviews and scientific journals. There will be a day when our most brilliant scientists find the cause of our illness, and this will help us lots. In the meantime we are facing a wall. It doesn't mean we stop trying to reach out.

Untill then I reckon we're resigned to having to scrounge up money ourselves through donations. I'm getting 60 euro back from an old public transport card, better put that to good use I reckon. I'll see if I can get some people close to me to donate too.

 

[Snowdrop]

I don't disagree that the amount offered in this grant is negligible but while we may continue the fight to get respect and by consequence proper funding let's not throw away the crumb. It's been the case occasionally that amazing things have been done on a shoestring when others have thrown huge vats of money to no avail.

Just replicating a small but important study could be useful while we keep on advocating.

Two other points, Kati makes a good point that politicians do good when it provides them with positive news coverage -- so that is an angle to consider -- we want to be that group that is absolutely news worthy. Also, I think that our arguments should highlight what might be of benefit to the granters of funding -- that is to say what might they get in return. ME research has the potential to open up possibilities for new technologies that can be applied in a wide variety of ways and what is learned might have some relevance to other illnesses for which there is little understanding. This potential should be mentioned as part of advocating for research.

 

[Alvin2]

I don't disagree that the amount offered in this grant is negligible but while we may continue the fight to get respect and by consequence proper funding let's not throw away the crumb. It's been the case occasionally that amazing things have been done on a shoestring when others have thrown huge vats of money to no avail.

I agree but this condition demands serious resources
Obfuscation has been the name of the game. Promises then half measures to keep us off their backs. If we fall for it then we lose, not the government.

Just replicating a small but important study could be useful while we keep on advocating.

I wouldn't, when your operating on a shoestring spinning your wheels hurts more then it helps

Also, I think that our arguments should highlight what might be of benefit to the granters of funding -- that is to say what might they get in return. ME research has the potential to open up possibilities for new technologies that can be applied in a wide variety of ways and what is learned might have some relevance to other illnesses for which there is little understanding. This potential should be mentioned as part of advocating for research.

Unless they don't know what they are doing they will see through this and label us quacks. That is counter productive.

As i said earlier of course you get more flies with honey then vinegar but being diplomatic and smart and determined is what we need to achieve progress, either that or a disease mechanism thats measurable. But how do you get the money to do the research that gives us the mechanism?

 

[MEPatient345]

Just saw this:

https://www.researchnet-recherchene...HR&progCd=10866&view=browseArchive&language=E

CIHR is participating as an international collaborator on this NIH initiative, and will provide funding to one Canadian multidisciplinary team to participate in the ME/CFS Collaborative Project with NIH’s CRCs and DMCC. The successful Canadian team is expected to coordinate with existing initiatives in the field, to forge links with the wider community (including practitioners, policy makers and service users) and include additional partners, such as commercial or industrial representatives where appropriate. Additionally, the successful team will encourage collaboration, communication and training that will extend beyond the lifetime of the five-year grant.

• The total amount available from CIHR for this funding opportunity is $1,775,000, enough to fund one (1) team. This amount may increase if additional funding partners participate.
  • The maximum amount for the grant is $280,000 per year for up to five (5) years, for a total of up to $1.4 million, for the participation of one team in the ME/CFS Initiative Collaborative Project.
  • A supplementary amount of $75,000 per year for up to five (5) years, for a total of $375,000, is available to the above team for a project that also addresses vascular instability and/or sleep disturbances experienced by people with ME/CFS.