Launch of Canadian research network makes a big statement about ME (Simon McG blog)

Launch of Canadian research network makes a big statement about ME

The Canadian government has announced a modest $1.4 million investment in a new research network and delivered a big message: ME is a serious illness, deserves respect ("Let's remove the insult from this injury") and needs more biomedical research. The network, led by Professor Alain Moreau, will set up a national patient cohort that will include objective data on patients’ posts-exertional malaise. It will initially run three studies, including a virus hunt. And it will boost Canadian research capacity, e.g. by supporting the next generation of research talent.

In Quebec, Canada, on 22 August the federal Health Minister, Ginette Petitpas Tayor, announced a modest $1.4 million Canadian investment to fund a new ME research network. In a statement, she said the investment "will advance research into ME, work towards developing testing and treatment options, better medical education and, ultimately, better help for patients."

Minister Petitipas Taylor​

But this was a research initiative launch like no other. A severely affected patient spoke for longer than the minister herself. The Minister told how she had been moved by the testimony of the patient advocates who came to see her and agreed with them that action was needed. The term "chronic fatigue syndrome" was dropped with the illness instead called just ME, or myalgic encephalomyelitis.

But perhaps the most striking message came from Dr Karim Khan, the scientific director of the government research institute that actually awarded the grant. A clinician himself, he urged his clinical colleagues to "remove the insult from this injury" by validating the experience of their patients and by admitting how little they knew about treating the illness.

No government or its research agency has previously spoken up as loudly in support of patients.

The Interdisciplinary Canadian Collaborative ME Research Network, known as ICanCME for short (I can see ME), will be led by Professor Alan Moreau. It aims to boost Canadian research through its own biomedical research projects, by building a national cohort of patients, and by increasing research capacity across Canada.

[Three core biomedical studies include one on identifying any viruses, present or past - whcih could be trigger infections]

Read the full blog​

 

@Simon M

Thank you very much for this detailed article about this exciting development for Canadians with ME, and I hope all world-wide.

Your writing will help educate about this wonderful turn-around, and what can be accomplished.

Although the funds are small, the message is much, much more.

What we, and millions in other countries have been waiting for.

I hope the research funds and medical education greatly increase, and good will towards pwME catches on in the UK, and everywhere.

ETA: added words for clarification

 

Thanks @Simon M for writing up that great blog, and pushing the message out further.

 

Thanks to you and your fellow advocates for all that you have done, and achieved.

Please do, and thank you!