Simon M
Senior Member (Voting Rights)
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 TaylorBut 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]
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 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]
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