USA: Call to Action from Solve ME, ensure Senate language on ME/CFS makes it through House reconciliation

[ahimsa]

Folks in the USA can use this automated toolkit to contact your house representative to protect funding for ME/CFS:

Urge Congress to Keep ME/CFS Language in Final FY26 Appropriations

The Senate included critical ME/CFS and Long COVID provisions in its FY26 spending bills—now we need the House to keep them. Call your Representative and urge their support for these life-changing measures.

solvecfs.quorum.us

And if you havefriend/relatives who live in a different district please ask them to contact their house representative, too!

The tool has a section that can be edited to personalize the message, so folks can say that they are a patient, or family member, or friend, etc.

An excerpt from the link above:

Help protect key ME/CFS language in the House Appropriations process.

The Senate included several major wins for the ME/CFS community in its FY26 funding bills - including support for the CDC Chronic Fatigue Syndrome program, implementation of the NIH Research Roadmap, a focus on Post-Exertional Malaise as a key way Long COVID can present, and continued eligibility for ME/CFS in the Peer Reviewed Medical research program.

Now we need the House to ensure this language makes it all way through committee votes, full floor votes and the reconciliations process.

Use this toolkit to email, call, or tweet to your Representative and ask them to support keeping these provisions in the final House bill. Your message will emphasize the importance of data, research infrastructure, and inclusive federal policy for the ME/CFS community.

 

[Cinders66]

Has there been independent assessment of the money required to adequately implement the ME roadmap? I understand the imo unduly low $50m ask is based on a perception of tough times and what’s considered winnable, but still is in contrast to the near $2b long Covid has had , including $500m for clinical trials & the moonshot aspirations. As well as being Half of what Multiple Sclerosis, affecting half the numbers, has routinely had for research every year.

 

[Yann04]

As someone with a US passport, who has voting rights in the US. But no address (I’ve never lived in the US, just have a passport because one of my parents has the passport). I never quite know how to fill in these things with a required address. Can I just put a random address within my constituency? Is that fraud?

 

[Utsikt]

As someone with a US passport, who has voting rights in the US. But no address (I’ve never lived in the US, just have a passport because one of my parents has the passport). I never quite know how to fill in these things with a required address. Can I just put a random address within my constituency? Is that fraud?

Found this:

If you are an eligible voter and have never lived in the U.S., you should use your U.S. citizen parent's current or last U.S. residence address.

We recommend that you check that you are registering in one of the states that allows U.S. citizens born overseas (and who have never lived in the U.S.) to vote, and that you verify the specific rules of your state. Please consult, "I'm a U.S. citizen born overseas. Am I eligible to vote in U.S. elections?" for more information.

If both of your parents are U.S. citizens and have different last U.S. residence addresses or current addresses, (or, if military, legal residences), you may choose either address.

Voting for U.S. Citizens Who’ve Never Lived in the U.S.

If you are an eligible voter and have never lived in the U.S., you should use your U.S. citizen parent's current or last U.S. residence address. We recommend that you check that you are registering in one of the states that allows U.S. citiz...

voterhelpdesk.usvotefoundation.org

 

[Yann04]

Found this:

If you are an eligible voter and have never lived in the U.S., you should use your U.S. citizen parent's current or last U.S. residence address.

We recommend that you check that you are registering in one of the states that allows U.S. citizens born overseas (and who have never lived in the U.S.) to vote, and that you verify the specific rules of your state. Please consult, "I'm a U.S. citizen born overseas. Am I eligible to vote in U.S. elections?" for more information.

If both of your parents are U.S. citizens and have different last U.S. residence addresses or current addresses, (or, if military, legal residences), you may choose either address.

Voting for U.S. Citizens Who’ve Never Lived in the U.S.

If you are an eligible voter and have never lived in the U.S., you should use your U.S. citizen parent's current or last U.S. residence address. We recommend that you check that you are registering in one of the states that allows U.S. citiz...

voterhelpdesk.usvotefoundation.org

Ooo good idea. Since that’s the address I’m officially registered to vote with I don’t think It’d be a problem to input in in the field even if I don’t live there and never have.

 

[Yann04]

Don’t really appreciate this at all by solve ME. They should atleast have the option to say no. Especially for energy limited pwME who don’t want extra emails or the hassle of the unsubscribe thing this sucks.

Email & Text Opt-in: Thanks for joining our campaign! By submitting this form, you agree to receive periodic updates from Solve M.E. You can unsubscribe at any time.

 

[Utsikt]

Don’t really appreciate this at all by solve ME. They should atleast have the option to say no. Especially for energy limited pwME who don’t want extra emails or the hassle of the unsubscribe thing this sucks.

Land of the free with no privacy or consumer protection.. Completely agree.

 

[ahimsa]

Don’t really appreciate this at all by solve ME. They should atleast have the option to say no. Especially for energy limited pwME who don’t want extra emails or the hassle of the unsubscribe thing this sucks.

Yeah, I understand.

I mostly don't use automated tools. Not just the ones by Solve ME, I avoid automated tools used by all organizations. At least with Solve ME they do seem to remove you from their email list if you unsubscribe.

I also try really hard to never share my cell number because I've heard it is hard to get off these text lists once you get on. I don't know how safe it is to click on links if you're on a mobile phone. Is your phone number automatically filled in? I don't know because I use a laptop when browsing, not my phone. ( I do know how to use my phone to browse, I just avoid using it that way )

I do look at these alerts to get a template for what I will say or write. But then I contact my senators or my house representative without using this tool, either by email (using the contact form on their website) or by phone.

 

[Yann04]

Yeah, I understand.

I mostly don't use automated tools. Not just the ones by Solve ME, I avoid automated tools used by all organizations. At least with Solve ME they do seem to remove you from their email list if you unsubscribe.

I also try really hard to never share my cell number because I've heard it is hard to get off these text lists once you get on. I don't know how safe it is to click on links if you're on a mobile phone. Is your phone number automatically filled in? I don't know because I use a laptop when browsing, not my phone. ( I do know how to use my phone to browse, I just avoid using it that way )

I do look at these alerts to get a template for what I will say or write. But then I contact my senators or my house representative without using this tool, either by email (using the contact form on their website) or by phone.

I just used one of my “rubbish bin” email addresses. And I didn’t give phone number. (I don’t even have a phone number, no use in it once you’re too severe to do calls and texts can make u crash).