Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

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’:


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.

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.

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Comments

@Sasha,

P.S. Morgan Fairchild is not an elected representative. Solve ME/CFS Initiative organized a briefing in Congress with Morgan Fairchild as a spokesperson (she apparently has or had the illness).
I had not heard about an SMCI/Fairchild briefing in Congress - I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.
 
I had not heard about an SMCI/Fairchild briefing in Congress - I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.
I think it was the meeting she was referring to. No testimony to Congress when it was in session. But there were members of Congress there.

ETA LINK about meeting. It was called a briefing. Hence the mix up.
On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:


  • Morgan Fairchild, Actress, Activist and Former Patient
  • Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  • Carol Head, Solve ME/CFS Initiative President/CEO
 
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Morgan Fairchild could be the "celebrity" advocate we've been hoping for. In addition to having had MECFS, she reportedly has a deep interest in virology and is known as a major AIDS activist--I think she did testify in front of Congress on AIDS.

She seems to have taken an interest in helping MECFS patients--supposedly, she "knows" Fauci at NIH and was supposed to have met with him after then IOM report.

She may be able to get us some congressional traction and/or attention with NIH.

NOTE: I'm writing all of this from memory so fair warning that I may be recalling incorrectly.

But regardless, it would be great if PWME reach out to her to thank her and encourage further involvement.

As for my congress people and my rep in NY--I give up on them and won't be voting for them in the future, for any office.
 
I had not heard about an SMCI/Fairchild briefing in Congress - I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.
Attendance at the briefing was by invitation only and the location was kept secret.:cautious:
 
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Attendance at the briefing was by invitation only and the location was kept secret.:cautious:
I goofed and I apologize.
I have been reminded that the "congressional briefing" was the invitation-only DC briefing held in March that I actually watched the livestream of.
I think what happened is that I read "congressional briefing" and in my mind pictured a big meeting with many congressional officials and staffers rather than the SMCI meeting that had just a few staffers in attendance.

(Has anyone heard what transpired in the meeting with Fauci?)
 
MEadvocacy.org has created an easy one click letter that US citizens can use to sen llewellyn King's blog directly to their congressional representatives. Just input your name and address. Three letters will be automatically generated and e-mailed to your two senators and house representative.

Let's try to reach every member of congress!

http://www.meadvocacy.org/tell_congress_we_need_an_me_champion
 
has anyone tried flagging down any of the politicians whoring for votes this cycle? seem to remember someone getting a good question in at a townhall some years back. spoke to a congressional aide years ago and apparently no one reads emails either although x number on a specific subject will raise awareness.