Sasha submitted a new blog post:
Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause
Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing ...
Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us.
Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’:
Political party affiliation: Unimportant.
Geographic representation: Unimportant.
Fund-raising potential: Minimal.
Reward: Undying gratitude, lavish praise, thanks beyond counting.
Job description: In any way you can, draw attention to a debilitating, life-abducting disease. Work to persuade federal government medical agencies to adequately fund research for a cure.
His ‘ad’ goes on to a succinct and eloquent description of our history and current situation, and ends with:
Read the full article here.
What you can do
We need to get this powerfully written call for help in front of Congress members.
To help, use this page to find your own representatives and senators, follow the links to their website for their contact details, and send them a link to the article via email, Twitter or Facebook.
The entire list of all 539 Congress members is here — and surely among so many, there will be some whose lives have been touched by this disease. There’s no reason why you can’t contact as many of them as you like, and there’s an opportunity here for forum members to work together to cover as much of the list as possible.
Llewellyn King has been our staunch ally for years now, and with his knowledge of how things work on Capitol Hill, we should take this campaign seriously and get behind it.
We just need one Congress member to take up our cause and get the ball rolling.
Let’s get going!
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.
And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.
Continue reading the Original Blog Post
Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause
Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing ...
Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us.
Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’:
Wanted: Member of Congress prepared to take up a cause.
Political party affiliation: Unimportant.
Geographic representation: Unimportant.
Fund-raising potential: Minimal.
Reward: Undying gratitude, lavish praise, thanks beyond counting.
Job description: In any way you can, draw attention to a debilitating, life-abducting disease. Work to persuade federal government medical agencies to adequately fund research for a cure.
His ‘ad’ goes on to a succinct and eloquent description of our history and current situation, and ends with:
But ME/CFS holds on for victims, forcing them to exist in a shadowy place of pain, hurt and rejection. Families are wrecked, lovers give up, and marriages are brought down by the relentlessness of the need. The caregivers suffer the burden for decades [...]
Yet, for all the hurt, the principal medical research arm of the federal government, the National Institutes of Health, spends a paltry $5 million a year on ME/CFS – an indictment of institutional indifference. Without a strong congressional advocate, or a lobby in Washington, the research dollars won't flow and hope will perish for patients.
ME/CFS is a good issue for an aspiring politician who wants to be heard and who could do real good by pushing federal government institutions toward helping the voiceless – those who can only murmur in their pain and loneliness, when louder shouters get tens of millions of dollars more research funding.
Yet, for all the hurt, the principal medical research arm of the federal government, the National Institutes of Health, spends a paltry $5 million a year on ME/CFS – an indictment of institutional indifference. Without a strong congressional advocate, or a lobby in Washington, the research dollars won't flow and hope will perish for patients.
ME/CFS is a good issue for an aspiring politician who wants to be heard and who could do real good by pushing federal government institutions toward helping the voiceless – those who can only murmur in their pain and loneliness, when louder shouters get tens of millions of dollars more research funding.
Read the full article here.
What you can do
We need to get this powerfully written call for help in front of Congress members.
To help, use this page to find your own representatives and senators, follow the links to their website for their contact details, and send them a link to the article via email, Twitter or Facebook.
The entire list of all 539 Congress members is here — and surely among so many, there will be some whose lives have been touched by this disease. There’s no reason why you can’t contact as many of them as you like, and there’s an opportunity here for forum members to work together to cover as much of the list as possible.
Llewellyn King has been our staunch ally for years now, and with his knowledge of how things work on Capitol Hill, we should take this campaign seriously and get behind it.
We just need one Congress member to take up our cause and get the ball rolling.
Let’s get going!
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.
And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.
