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ME scientists write open letter to US senators: "We want to research ME but can't get the funding"

Sasha

Fine, thank you
Messages
17,863
Location
UK
Our scientists said:
Dear Senator Mikulski,

We the undersigned scientists are writing to express our interest and enthusiasm for researching myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a common and disabling illness long ignored by our nation’s health agencies.

Many of us have had a very difficult time securing adequate funding. Others have been unable to determine even how to apply for funding, as no institute within the NIH has responsibility for researching ME/CFS. The NIH has responded to requests for increased funding by stating that few researchers are interested in studying the illness.

On the contrary there are Nobel Laureates, several members of the National Academy of Sciences, biochemists, biophysicists, geneticists, immunologists, neuroscientists, experts in public health and infectious disease, epidemiologists, and physicians eager and ready to study this disease, were adequate funding made available. The undersigned are just some of those researchers...
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This is really something. And the timing is great. I can't help feeling that things are beginning to shift. But we must try to bring our community's attention to these advocacy projects. In my opinion, this funding issue is the single most important issue for us right now. We must get behind it.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Jaw-dropping:
Wow!

This is really something. And the timing is great. I can't help feeling that things are beginning to shift. But we must try to bring our community's attention to these advocacy projects. In my opinion, this funding issue is the single most important issue for us right now. We must get behind it.
Does anyone know if #MEAction are planning anything?
 

JamBob

Senior Member
Messages
191
This is great news.

Would someone be able to explain who Senator Mikulski is and why the scientists have chosen to address the letter to her? Is there a reason to target one single senator over the government as a whole? Does this senator have special powers/influence?

Cheers
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
This is great news.

Would someone be able to explain who Senator Mikulski is and why the scientists have chosen to address the letter to her? Is there a reason to target one single senator over the government as a whole? Does this senator have special powers/influence?

Cheers

@searcher?
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
This is great news.

Would someone be able to explain who Senator Mikulski is and why the scientists have chosen to address the letter to her? Is there a reason to target one single senator over the government as a whole? Does this senator have special powers/influence?

Cheers

Senator Barbara Mikulski is a very senior senator (from Maryland) on the Senate HELP Committee. She used to be the ranking member but I believe since she is retiring in 2018 her Democrat colleague Patty Murray has taken on the role.

http://www.help.senate.gov/about/members
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
This is great news.

Would someone be able to explain who Senator Mikulski is and why the scientists have chosen to address the letter to her? Is there a reason to target one single senator over the government as a whole? Does this senator have special powers/influence?

Cheers

Barbara Mikulski is a Democrat senator from Maryland. She is on the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies.

She has been in Congress since 1977 in both houses, so she knows where the bodies are buried by now.
 
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searcher

Senior Member
Messages
567
Location
SF Bay Area
We are giving a copy of the letter to every senator we meet with, but thought it would be useful to have a specific senator mentioned in the letter linked to in the Science article. Mikulski is a key senator for the reasons jimells mentioned, but we want every senator on the HELP committee to get a copy.

Dr Bateman signed on right after the article was published and we think we will get more signatures this week. Most of the scientists we reached out to were enthusiastic signatories, but I think some wanted to be careful (understandably so) because they get a lot of NIH grants in other areas.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Amazing!!!

I didn't see the link to the letter the first time through the article, and had to very carefully re-read (embarassingly, twice :() to find it.
I realize this is probably a personal brain-fog issue, but IMO it might be worth promoting the letter on its own in addition to the Science article.
Ie - link separately on Twitter, Facebook etc

This is some pretty great fodder for advocacy.
 
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