In the last several weeks, we've seen some amazing progress in the fight for equality, thanks in part to you and the thousands of volunteer hours contributed by activists all around the world.
Bad science is being challenged
A tribunal in the UK ordered the
release of the PACE trial data:
- #MEAction's petition, which gathered 12,000 signatures and was reported on in the Wall Street Journal, was submitted as evidence of peaceful – and broad – patient participation
- #MEAction volunteers issued a press release, which directly contributed to coverage of the ruling in the British Medical Journal and iNews, with more news forthcoming.
In the US, the Agency for Healthcare Research and Quality (AHRQ) concluded there was
no evidence for exercise and cognitive behavioral therapy in ME/CFS when studies using the Oxford definition were excluded. This review came after the hard work of activist Mary Dimmock, who also delivered to AHRQ #MEAction-sponsored petition that received over 2,000 signatures.
Word about our fight for equality is spreading
The May 25th, the #MEAction-organized #MillionsMissing protest resulted in
presscoverage around the world. It continues to generate coverage, with images from the protests appearing in new articles from Australia to the Netherlands.
But progress is fragile
And at the same time, we are reminded that progress is fragile. In Canada,
a major grant application was rejected by a reviewer who said, "there is no evidence that CFS is a disease."
We need your help to grow the movement
We are a patients' movement. Every day we are organizing, bringing in new volunteers, growing our capacity to fight the challenges ahead and get the equal treatment in research and medicine we need and deserve NOW.
Too much time has already been lost.
We have done so much with the work of volunteers. Every week, volunteers give hundreds of hours to make all of this possible. I have personally donated 5,000+ hours to the movement over the last many years. But we can't do it with sweat and blood alone.
We need to hire a public relations firm to coordinate press outreach for the September 27th #MillionsMissing protest to make sure the hard work of local groups in more than 24 cities around the world is recognized. We need to support the technological tools and staff that make coordinating a virtual movement possible. And we need to support local organizers with the travel funds, the banners, the supplies for their performance art, the poster board and scotch tape they need to make their events a success.
I believe that we can accomplish anything if we band together. We can't afford to make incremental progress anymore. Let's unleash a force powerful enough to bring this disease, our community into the light in stunningly big strides. It will take years. It will be hard. But it starts now.
Will you join us?
Jen
