New campaigning video on (lack of) UK govt funding of biomedical ME research
- Thread starter Sasha
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Graham
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Thanks Sasha. With the usual team, of course, all but 2 from PR!
I think we are close to tipping the balance here, and with a concerted push we could get some decent biomedical support funding from the establishment. But I think we would be most effective if people with ME got in touch with their local MPs directly. I know how tiring that is, but I think, especially now, that they are more likely to be responsive to such approaches than to an easy online petition. That is why I added a link under the video to a factsheet, that can be downloaded and used as appropriate. I tried out an earlier one on my local MP, and he seemed to be quite stunned by the facts (although I have yet to see what the effect will be).
I think approaching the media too could shock quite a few healthy folk who tend to assume that our illness has been studied. I'm on steroids for PMR, and my sister asked recently what my ME specialist had to say about it!!!!!
So how can we whip up support amongst the ME community for a real push? I'm spreading the word as best as I can.
I think we are close to tipping the balance here, and with a concerted push we could get some decent biomedical support funding from the establishment. But I think we would be most effective if people with ME got in touch with their local MPs directly. I know how tiring that is, but I think, especially now, that they are more likely to be responsive to such approaches than to an easy online petition. That is why I added a link under the video to a factsheet, that can be downloaded and used as appropriate. I tried out an earlier one on my local MP, and he seemed to be quite stunned by the facts (although I have yet to see what the effect will be).
I think approaching the media too could shock quite a few healthy folk who tend to assume that our illness has been studied. I'm on steroids for PMR, and my sister asked recently what my ME specialist had to say about it!!!!!
So how can we whip up support amongst the ME community for a real push? I'm spreading the word as best as I can.
snowathlete
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Well worth sharing on twitter, facebook etc. Email it to your friends.
A lot of good work has obviously gone in to this, so let's use it as much as we can to get heard.
And I'll be sending my MP a copy of that factsheet.
You can identify your MP and send them an electronic letter quickly and easily through this site. https://www.writetothem.com/
A hardcopy might be better, if you are up to it, and you can easily get your MPs address here:
http://findyourmp.parliament.uk/
A lot of good work has obviously gone in to this, so let's use it as much as we can to get heard.
And I'll be sending my MP a copy of that factsheet.
You can identify your MP and send them an electronic letter quickly and easily through this site. https://www.writetothem.com/
A hardcopy might be better, if you are up to it, and you can easily get your MPs address here:
http://findyourmp.parliament.uk/
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Link to a page with link to the factsheet:
http://evaluatingpace.phoenixrising.me/givemethemoney.html
http://evaluatingpace.phoenixrising.me/givemethemoney.html
Graham
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You can find the factsheet at http://evaluatingpace.phoenixrising.me/givemethemoney.html
It uses the website we prepared analysing the PACE trial.
It uses the website we prepared analysing the PACE trial.
Graham
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Sorry Sacha: simultaneous thinking!
Graham
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If any of you do contact you MP either by email or face-to-face about biomedical funding, would you please let me know. I'll keep a track of it and send updates (if appropriate). Thanks.