55 members of the US Congress support ME/CFS research

John Mac

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#MEAction has just sent the following email:


I am so thrilled to share with you the outcome of an unprecedented congressional outreach last week on the part of American activists.
A total of 55 members of the US Congress have signed on to a letter to NIH Director Francis Collins about the status of ME/CFS research. These signatures came as part of a massive outreach effort spearheaded by #MEAction’s congressional team and scores of #MEAction volunteers across the US, in collaboration with the Solve ME/CFS Initiative and dozens of independent advocates. It is the first bipartisan letter to the NIH for our disease and the largest American ME/CFS effort ever of its kind.
We continue to be amazed and inspired by what we can achieve when we work together and want to work with you to help support legislative outreach in your country.
This is only the beginning.

Jennifer

Here is the news on their website
http://www.meaction.net/2016/09/09/us-congress-letter-to-nih/
 

JaimeS

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Hey folks, if you value this effort, please consider contributing to (and/or promoting) the #MEAction Crowdrise fundraiser here:

https://www.crowdrise.com/millionsmissing-round-2/

You can donate to my arm of the fundraiser at this link. It all goes into the same 'pot', however, this is just me setting a specific fundraising goal and trying to meet it:

https://www.crowdrise.com/millionsmissing-round-2/fundraiser/jaime-smeaction

I'm writing a piece on clinical implications of the Naviaux article, and people who donate get first dibs, because I've reached 10% of my goal. I will have a different goodie available when I reach 25% of my goal.

Also, easiest advocacy ever: Thunderclap. Just click below and sign up if you have a Facebook, Twitter, or Tumblr account and on the day of our protests, September 27th, we will tweet and Facebook-post the same message on hundreds of accounts, reaching (right now) hundreds of thousands of individuals. It unbelievably easy and it lets people know you signed up, so it's self-promoting:

https://www.thunderclap.it/projects/46042-millionsmissing-demand-change

We are creating special tweets and/or a Thunderclap just for government representatives, too. :D

So much happening and it's all so exciting!

Jaime
 
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Tuha

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Well, we can certainly see a slow progress but if you want to solve a problem it looks differently - you quickly hire the best researchers, you put them money, you educate doctors, medical students,... I dont see anything of this.
 

mfairma

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I'm just surprised that anyone is surprised by this.

55 is an impressive number, but these letters have been sent before and the response always sounds just impressive enough to mollify people whose commitment is superficial. Maybe this time or maybe next time systemic factors will have moved enough in our favor that the response to Collins will be strong and harsh. I tend to think that our political capital is still too low to engage in this sort of advocacy and expect real returns (not that the awareness raising this involves doesn't have its own value independent of direct results). Hopefully I'm wildly wrong.

Anyway, reading this reminded me of that time Bob Miller got Obama to respond to a question about CFS. Everyone got excited that he had said the name of our disease and the Millers told everyone they shouldn't make public criticism because our ship had finally come in. I seem to recall some of that behavior going on last year as well. I can only imagine how it would be to have watched this community for thirty years since the god awful name was created, but six+ years has been enough to see the same patterns replay over years and across generations of advocates. There is much that is novel and great in recent advocacy, but, to my eyes, there is also much that is old and staid.