New XMRV-like MS discovery. MS Can funds $10M(~$100M US)+. How to do this for ME/CFS?
There is a new, exciting theory in MS that it is a vascular disease rather than an auto-immune one.
I see so many parallels with xmrv in this story, and find it inspiring to see what a good advocacy, and a good national advocacy group can do.
What I have read and infer of the storyline is that:
>Dr Zamboni's wife has MS. He researched a non-traditional cause and thinks he's found a cure.
>The MS group last year funded $10 million in research. Their position on Dr Zamboni’s work has been extremely cautious
>Individuals or small groups got the media interested and primed (maybe some media also have a personal connection? Andre Picard was the journalist on both articles). This part was extremely effective.
>Media is coordinated to have the front page article and documentary coverage coincide
>Meanwhile, pressure has been being put on the national MS group to get involved - they remained cautious
>After the double-whammy of the weekend, the MS group comes out today saying they'll fund research into Zamboni’s work (a lot of pressure must have come before for this announcement to come on Monday morning!)
>While not changing their position of caution, the MS group, who funded 10 million in research last year (and that's in Canada - US equivalent would be about $100 million!) are calling for research proposals:
SO – while the circumstances of a ground-breaking unexpected new theory are almost eerily similar to the finding of xmrv, that’s where the similarities stop; The Canadian and American ME/CFS national advocacy groups have done basically nothing or done things negative.
And where maybe there’s a role for us to make them more similar. I see another advocacy opportunity.
How do we get the Canadian and American (and other) ME/CFS advocacy groups to advise caution regarding xmrv, but still to
I think I will try to get this info together to send to the Canadian and American ME/CFS groups to point out that they have the opportunity of being equally responsive to our needs and do something similar for xmrv.
Anyone know of any documentarists who would do a good job?
I'm not capable of much these days and it will probably take me a while. If anyone wants to help or to take it on, please PM me.
Notes:
1. This came out of a thread on MS and there is some discussion there for its medical implication for us
2. The Globe and Mail, one of Canada's national papers, ran a front page + all page 8 article on it on Saturday.
3. W5 aired a documentary on the new research and theory on both Saturday and Sunday. They also made the documentary available on the web.
4. Today's Globe and Mail has a follow-up article
5. Today’s article ends with a warning:
islandfinn![Smile :) :)](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
There is a new, exciting theory in MS that it is a vascular disease rather than an auto-immune one.
I see so many parallels with xmrv in this story, and find it inspiring to see what a good advocacy, and a good national advocacy group can do.
What I have read and infer of the storyline is that:
>Dr Zamboni's wife has MS. He researched a non-traditional cause and thinks he's found a cure.
>The MS group last year funded $10 million in research. Their position on Dr Zamboni’s work has been extremely cautious
>Individuals or small groups got the media interested and primed (maybe some media also have a personal connection? Andre Picard was the journalist on both articles). This part was extremely effective.
>Media is coordinated to have the front page article and documentary coverage coincide
>Meanwhile, pressure has been being put on the national MS group to get involved - they remained cautious
Until Saturday, the MS Society had been skeptical about CCSVI, saying there is “insufficient evidence to suggest this phenomenon is the cause of MS.”
The W5 broadcast and the Globe story have generated an overwhelming response on MS chat groups.
Many patients are clamouring for information on how to join a study that is under way at the Buffalo Neuroimaging Analysis Center, which is recruiting in the United States and Canada, and how they can travel to Italy for surgery.
>After the double-whammy of the weekend, the MS group comes out today saying they'll fund research into Zamboni’s work (a lot of pressure must have come before for this announcement to come on Monday morning!)
>While not changing their position of caution, the MS group, who funded 10 million in research last year (and that's in Canada - US equivalent would be about $100 million!) are calling for research proposals:
A new theory that multiple sclerosis is a vascular disease that could be treated with simple surgery is so “exciting” and “potentially paradigm shifting” that
the MS Society of Canada is calling on scientists to research it thoroughly and promising to back their work with significant research dollars.
“This merits serious and robust studies so we're going to issue a request for proposals,” Yves Savoie, president of the MS Society of Canada, said in an interview.
Last year, the charitable group invested $10-million on research, and Mr. Savoie said
it will spend whatever is required to test the new theory thoroughly. ........
Mr. Savoie insisted the group's position has not changed, but, because of the overwhelming public response to the media stories, he wanted to stress the group's support for research that would either prove or disprove the theory.
“We're conscious of the potential paradigm shift this represents and we believe every avenue merits being probed,” he said. “But our policy is to not put all our eggs in one basket.”
The head of the MS Society also pleaded with patients to not do anything drastic until the theory is tested and proven. “One of the things we really don't want people with MS to do is to abandon their course of treatment,” Mr. Savoie said.
SO – while the circumstances of a ground-breaking unexpected new theory are almost eerily similar to the finding of xmrv, that’s where the similarities stop; The Canadian and American ME/CFS national advocacy groups have done basically nothing or done things negative.
And where maybe there’s a role for us to make them more similar. I see another advocacy opportunity.
How do we get the Canadian and American (and other) ME/CFS advocacy groups to advise caution regarding xmrv, but still to
call for research proposals
fund them to whatever degree is necessary to test what it is and its relationship to ME/CFS
fund them to whatever degree is necessary to test what it is and its relationship to ME/CFS
I think I will try to get this info together to send to the Canadian and American ME/CFS groups to point out that they have the opportunity of being equally responsive to our needs and do something similar for xmrv.
Anyone know of any documentarists who would do a good job?
I'm not capable of much these days and it will probably take me a while. If anyone wants to help or to take it on, please PM me.
Notes:
1. This came out of a thread on MS and there is some discussion there for its medical implication for us
2. The Globe and Mail, one of Canada's national papers, ran a front page + all page 8 article on it on Saturday.
3. W5 aired a documentary on the new research and theory on both Saturday and Sunday. They also made the documentary available on the web.
4. Today's Globe and Mail has a follow-up article
5. Today’s article ends with a warning:
Ashton Embry, founder of the Direct-MS, a Calgary-based consumer group that emphasizes the importance of good nutrition for the control of MS symptoms, said in a Web posting that “CCSVI has the potential to completely change how we see MS and how to treat it.”
He predicted, however, that “it will be a long, hard fight to get the treatment of CCSVI from the laboratory to the clinic,” because drug companies stand to lose a lot if a surgical treatment becomes the norm.
islandfinn