Urgent: Take part in the US Congressional Call to Action

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#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives.

Continued work from the Congressional team at #MEAction has yielded fruit.

[pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) have agreed to co-sponsor a House of Representatives letter to the NIH[/pullquote]

We are proud to announce that U.S. Representatives Zoe Lofgren (CA-19) and Anna Eshoo (CA-18) have agreed to co-sponsor a U.S. House of Representatives letter to National Institutes of Health (NIH) Director Francis Collins. The letter solicits information about the NIH’s current and future ME/CFS program and encourages the NIH to strengthen ME/CFS biomedical research efforts (ME/CFS is the Representatives’ preferred terminology). The language in the letter was drafted by the two Congresswomen’s offices and is therefore not subject to change.

The letter is currently being circulated for additional signatures in the U.S. House of Representatives.

We need your help to add your representative’s signature to the letter. We are running on a deadline of representatives’ sign-on has been extended to Wednesday, September 7!

Can you help us strengthen this letter by requesting that YOUR representative sign?  Imagine the letter signed by representatives from every state and the impact that might have.

Ready to advocate?  Click below.

[button_color url=”https://docs.google.com/document/d/1HoToQ746WaqeSc04mcs1snFS6kaEn0MFNGIdIEw90cg/edit?usp=sharing” content=”Yes!  I am ready to take action.” target=”https://docs.google.com/document/d/1HoToQ746WaqeSc04mcs1snFS6kaEn0MFNGIdIEw90cg/edit?usp=sharing”]
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15 thoughts on “Urgent: Take part in the US Congressional Call to Action”

  1. As long as they research the phenomena of becoming ill the rest of your life after a flu-like, viral, EBV or bacterial infection AND it meets Fukuda w/PEM or CCC or ICC even if it takes a clinical Dx of SEID first, I’m in.
    No matter the criteria, as long as PEM and an illness that led to a lifetime of symptoms should be the crux of the research. If they want to use the acronym construct of ME/CFS I DON’T CARE.
    Through decades of this disease, I still see my early symptoms being SEID dx and Fukuda w/ PEM and then 20 years later could fit CCC and ICC criteria.

  2. I called Rep. Joyce Beatty’s office (Ohio, 3rd District) and learned the name of the legislative assistant. She was out, but I also got her email address and sent her a message with the letter and fact sheet as attachments. I will follow up with her on Monday.
    Thank you for this and all your hard work.

  3. Hi. I just talked to an aid At Congressman Carney’s office this morning. She asked me to send the email to her and she will give it to him. I am from Delaware. I used the info that you provided. Keep you posted and hope he will sign.

  4. I just spoke to an aide to Congressman Jim McGovern (D-MA); the aide said that Congressman had just signed on to the letter this morning!

  5. I wrote up some script to help talking about the seriousness of ME with staffers or others. This is a chinese restaurant menu — take one or more bits that you want.
    DEAR JEN ET ALIA — A HELPFUL SUGGESTION. When I am talking to people about this disease I like to say:
    “The CFS stupid name CDC dreamt up in 1988 is a total lie. It is not about fatigue. It is about total weakness, collapsing all the time — our mitochondria, the llttle engines in the cells — they don’t work right to make energy.
    “Having this disease is like a cross between Polio and Multiple Sclerosis. It has a lot in common with both, including that it can kill an severely disable, and that it works through devastating the neurology and the immune system.”
    The real name listed in the WHO is Myalgic Encephalomyelitis and it makes more sense because everyone has chronic low-level encephalitis (a word people will recognize) and some kind of pain. I have had a headache for 20 years from the encephalitis and 80-90% of PWME do.”
    I also like my jalopy explanation, for people who were teen-agers in the 50s and 60s and maybe 70s, before cars became computers:
    “It’s like being a car with no spark plugs to get going. Bad carburetor can’t burn fuel right to move, And you run out of gas maybe every 10 minutes, or after 45 minutes, whatever. We’re not talking fatigue, we’re talking collapse.”
    And for 30 years now CDC and NIH and FDA have refused to train mechanics to fix us.
    By the way, cluster epidemics of ME first became visible following the polio epidemics that started in Norther Europe at the end of the 19th century — these ME epidemics were caused by enterovirus related to the polio enterovirus. But now we have histories of it being kicked off by a range of neurotropic viruses including enterovirus and even some other pathogens like giardia.
    I’m not saying to use all of these at once. Pick and choose. But I think the two key points are to get across its seriousness, which “it’s like a cross between POLIO and MS” does.
    And that the real disease invariably involves brain inflammation — encephalomyelitis — and immune dysfunction (proved by Caliguiri et al at Harvard’s Dana Farber cancer institute and published in 1987. WHICH CDC AND NIH SYSTEMATICALLY BURIED FOR THE NEXT 29 YEARS SO AS TO PRETEND THIS WAS JUST A SOMATIC LITTLE DISEASE OF FATIGUE AMONG THE FEEBLE AND FEMALE. (Anthony Komaroff was the last author on the Caliguri paper.) Every PWME should know about this famous fraud.
    “Deborah Waroff

  6. Courtney Alexander Miller

    Please share the names of any Republican Congresspeople who have signed onto the congressional letter to NIH’s Dr. Collins. Our Republican congressman is not committing to sign it because it is being circulated by Dems. We have more to do to get his signature, and it would really help to tell him who has signed from his party.
    Thanks, Courtney

    1. Tell him his constituents have been hurt the most of all by this disease and the war against the ill. Isn’t he the congressperson for Reno? ME all over the place. Does the district go as far as Tahoe? Perhaps someone can call the staff of the two democrats who wrote it and ask what they would suggest. They know who they deal with across the aisle. Or get some local Republicans to take the letter during his local office hours for constituents. Good luck.

  7. The fact this was extended doesn’t seem good…
    I live in Australia and am severely effected, is there any way I can help in passing this funding? I couldn’t care less where the research is being done, Australia has been becoming much more involved in research but we don’t have the recourses America does. Any funding anywhere for ME will only benefit the world. Besides, if people still seriously think this isn’t a real illness, and real research would prove that. So theres NO reason to not fund this except for public opinion, which has been shaped in the LACK of research.

    1. Good point, Corey. And it’s actually really great for us it got extended! As of now we have at least 25 signatures, and we continue to gather more! If you have any friends or relatives in the US, you might ask them to call on your behalf, and on behalf of the millions of others with ME.

  8. At present, it’s a key problem that Republican Reps. are making this a partisan issue and I’m not aware of one who has signed. So get after your Republican Reps. Our Disease has No Political agenda.

    1. Yes, we are specifically working on this. It is solely because Democrats were the sponsors for the letter; in other branches of government, there is strong Republican support.
      I wish we could convey to our representatives just how sick the average American is of this sort of partisan attitude — no pun intended.

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