USA: News from #MEAction

MEAction article talking about the current conditions in the USA:

When Care is Threatened, Community is Our Strength
I don’t need to tell you that these are extraordinarily difficult times. Across the country, we’re witnessing devastating cuts, acts of injustice, and widespread attacks on human rights. It’s overwhelming, it’s frightening. In moments like this, our purpose becomes even more clear. We are here to protect and uplift our community, especially those most vulnerable.

Right now, unprecedented reductions in healthcare funding threaten millions of Americans, including people with ME and Long Covid. Our mission is to improve the lives of people with ME and Long COVID through activism and advocacy. But we cannot ignore that within our own community, some are being targeted more directly—LGBTQ individuals, undocumented people, and others whose very existence is being politicized.

Our campaigns will continue to focus on access to healthcare, equitable research funding and improved medical education because that’s where our expertise lies. At the same time, we stand shoulder to shoulder with organizations and individuals fighting for broader human rights, knowing that our communities are deeply intertwined. Together, we are stronger.
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They are asking folks to join the "Freakin’ Frail" campaign to protect Medicaid access for people with ME/CFS and Long Covid. The first step is to sign their letter to the HHS Secretary.
 
MEAction Network:

Join our Partner Caregiver Support Group meeting this Sunday- February 1st at 3 pm ET.

Take a look at the post below to learn more!

https://www.meaction.net/event-details/meaction-partner-caregiver-support-call-2026-02-01-12-00-1

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When caregiving becomes the center of everything, it’s easy to lose sight of the relationship beneath it.

Many caregivers find themselves managing symptoms, schedules, and decisions—while the parts of the relationship that once felt natural and alive slowly fade into the background.

Caregiving is about doing.
Relationships are about being.
And when survival takes over, the being can get lost.

Join us for our monthly support group meeting this Sunday, where we will discuss “Reconnecting with the Relationship Beneath Caregiving.”

Sunday, Feb. 1
⏰ 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m. GMT
Caregiver Wisdom Monthly Support Group / #MEAction's partner caregiver support group (all caregivers welcome!)
❤️ Reconnecting With the Relationship Beneath Caregiving

Ahead of Valentine’s Day, we’ll explore easy, realistic ways to stay connected as partners and family members—without adding more to your plate.

Together, we’ll reflect on:
• What feels lost or quietly grieved
• How we can show up as a partner/family member—not a caregiver
• What kind of connection is still possible now
• Small moments of love or affection that don’t require extra energy

We’ll also break into small groups for deeper, more personal sharing—a part of the meeting many caregivers value deeply.

While we center on caregivers of loved ones with ME/CFS, Long COVID, and related illnesses, all caregivers are welcome.

If you’re longing for connection, understanding, or simply a place to breathe—this space is for you.

Email me at kim@caregiverwisdom.net or DM me if you’d like to join us.

#caregiving #caregivers #CaregiverSupport #familycaregivers #ChronicIllnessCaregivers #chronicillness #MECFS #longcovid #pots #dysautonomia #chroniclyme #mcas #fibromyalgia #CaregiverWisdom

The #MEAction Network Bateman Horne Center Solve MECFS Initiative Open Medicine Foundation Massachusetts ME / CFS & FM Association The Sick Times Long Covid Families Long Covid Kids COVID-19 Longhauler Advocacy Project Patient-Led Research Collaborative World ME Alliance EDS Canada Foundation Emerge Australia Inc RTHM
 
Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap
#MEAction said:
Congress has instructed the NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days of signing the recent L-HHS bill. So in six months, we should have a plan to implement the NIH’s roadmap for biomarkers, treatments and clinical trials for ME/CFS.

#MEAction partnered with #NotJustFatigue to secure this support from Congress. #MEAction state chapter members and advocates attended meetings with congressional offices to explain the importance of ME/CFS research funding, helping to make this language in the L-HHS bill come to fruition.

This pressure from Congress is just one piece in the puzzle to getting the roadmap funded, however. We still need NIH to allocate actual funding to undertake the research. #MEAction is continuing to fight on this front.

We sent a letter to the NIH Director calling on him to allocate $50 million of discretionary funding to the roadmap - funding from the Office of the Director - and he has agreed to meet with us to discuss the plan and funding. We are currently scheduling a meeting with him, and will keep you posted.
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#MEAction Letter to NIH (PDF file)

Edit: Here's the thread #MEAction posted on Bluesky (pretty much the same info)
 
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Some good news from #MEAction for folks in the USA:

More great news! Telemedicine has been extended!
We have great news that the latest funding bill finalizes several key healthcare extenders including the Medicare telehealth program (until December 31, 2027) and the Acute Hospital Care at Home waiver (until September 30, 2030).
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We have heard so many stories of why telemedicine matters to you personally, and we are thrilled that this has extended for two years.
Of course, we are going to continue to advocate to make telehealth expansions permanent!
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The telehealth provisions also included removing Medicare’s geographic requirements for telehealth and expanding the types of practitioners able to furnish telehealth services.
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