USA: News from #MEAction

[ahimsa]

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.

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.

 

[Dolphin]

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

 

[ahimsa]

ICE Makes Me Sick: Fund Healthcare, Not Violence

Article about an advocacy campaign which demands that the U.S. Congress "stop bankrolling ICE violence while slashing our healthcare and home care."

This action is created by #MEAction and co-sponsored by Long COVID Justice.

 

[ahimsa]

Craving some gentle time together in community? Us, too!

Join us on Feb. 1st at 12 pm PT / 2 pm central / 3 pm ET / 8 pm GMT for our Keep the Light virtual community event.

Keep the Light - Community Gathering

Sunday, February 1
3:00 - 4:00 PM Eastern Time

Registration link
(Link shows time in your time zone)

 

[ahimsa]

Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap

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.

#MEAction Letter to NIH (PDF file)

Edit: Here's the thread #MEAction posted on Bluesky (pretty much the same info)

 

[ahimsa]

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).

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!

The telehealth provisions also included removing Medicare’s geographic requirements for telehealth and expanding the types of practitioners able to furnish telehealth services.

More details can be found here:

Telehealth policy updates

Learn about recent Federal legislation and policies related to telehealth.

telehealth.hhs.gov

 

[Formerhuman]

Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap

#MEAction Letter to NIH (PDF file)

Edit: Here's the thread #MEAction posted on Bluesky (pretty much the same info)

Hi, ahimsa! I guess you are an #MEAction representative? I remember participating in this ME/CFS Research Roadmap a few years ago. Since then, some important studies have been finished. Great projects are in progress in Europe. I feel like the Research Roadmap needs to be reanalyzed. And studies should be synchronized with European projects. Given the disastrous intramural ME/CFS study and RECOVER/RECOVER-TLC, and the upsetting Long COVID roundtable, I don't have high expectations for the NIH. Do you think the Research Roadmap is an up-to-date source and the NIH will be able to create a proper plan?

 

[ahimsa]

Hi, ahimsa! I guess you are an #MEAction representative?

No, I'm not a representative of #MEAction.

I try to find and then post news from various ME/CFS groups - #MEAction, Solve ME, Bateman Horne Center, etc. - to help keep our forum members informed. I'm not speaking for any of these groups, just posting links to their articles/blogs/webinars/support groups.

I'm not able to understand / debate issues with the research roadmap, sorry.

You could try asking #MEAction about it, or one of the other advocacy groups working on this project (can't remember, I think it was #NotJustFatigue? )

Or maybe you could post your questions on another forum thread? This thread for USA news might be one place to start but maybe there's another thread that's just for the roadmap (sorry, can't do a longer search now).

 

[ahimsa]

Update from #MEAction on their "ICE Makes Me Sick" campaign:

Why We Launched an ICE campaign

Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.

www.meaction.net

Congress cut $1 trillion dollars from Medicaid over 10 years, gutting healthcare access and home and community based services that tens of thousands of people in our community rely on to survive. Meanwhile, in the same bill that stripped money from Medicaid, Congress allocated $85 billion to ICE.

The cuts to healthcare mean that tens of millions of vulnerable Americans are set to lose their health insurance and get sicker – the nonpartisan Congressional Budget Office estimates that 16 million people will lose their health insurance from these recent cuts to Medicaid and the Affordable Care Act (ACA) by 2034. A Yale University study estimates that tens of thousands of people will die annually due to these Medicaid cuts.

Congress has to pass a funding bill for the Department of Homeland Security by Feb. 13 to avoid another funding lapse.

It’s not too late to send a letter demanding that money allocated to ICE is better spent on healthcare, so that millions of Americans can access care and live with dignity.

Here's the link to the tool which helps folks send a letter to their US government representatives:

ICE Makes Me Sick—Fund Healthcare, Not Violence!

Tell Congress to stop bankrolling ICE violence while slashing our healthcare and home care.

actionnetwork.org

 

[Dolphin]

MEAction:

As we look forward to honoring National Caregivers Day on Feb. 20th, we are excited to share three new resources for our caregivers! See link in comments!

We offer two new recorded webinars! Two dedicated advocates and caregivers from our community, Kim Moy and Denise Lopez-Majano, share their practical advice from decades of caregiving for people with ME. Caregiving is immensely challenging, and Kim and Densie offer their compassionate understanding for caregivers. The third resource is a compilation of wisdom from caregivers who are sick themselves.

Resources- all links in article

- Top 10 Lessons From 20 Years of Caregiving with Kim Moy.

Kim Moy is the founder of Caregiver Wisdom, a #MEAction volunteer, and caregiver for her husband who has ME. She has over 20 years of caregiving experience and leads the monthly Partner Caregiver Support Group for #MEAction.

- Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Majano.

Denise is a caregiver for her two adult sons with Severe ME and has been facilitating #MEAction’s Caregiver calls for several years.

You can also find support through the two caregiver calls offered each month and our dedicated Facebook support group. All linked in the article!

We are very thankful we are for the amazing caregivers that we have in our community. We especially want to thank Denise Lopez-Majano and Jane Shiyah, who initiated our very first Caregiver Support Call over seven years ago, and Kim Moy, who started our Partner Caregiver Support Call.

We truly appreciate the many years they have been showing up and facilitating monthly caregivers meetings. We are so grateful for their time and effort in creating these webinars and new resource.

#Caregiver #PwME #Carer #PwLC #chronicIllness

All links can be found here: https://www.meaction.net/post/caregivers-share-their-decades-of-experience-and-advice

 

[ahimsa]

#MEAction Testifies in Support of Maryland HB 27 to Advance Long COVID Research

Last week, #MEAction joined a Maryland bill hearing to support House Bill 27 (HB 27), a proposal that would create the Maryland Long COVID Research Fund and establish a Long COVID Innovation Grant and Loan Program through the Maryland Technology Development Corporation (TEDCO).

#MEAction’s Scientific Director, Jaime Seltzer, delivered testimony in support of the bill. #MEAction’s Maryland State Chapter lead, Bridget Collins, also testified, highlighting why this issue matters to Marylanders and why timely action is so important.

 

[ahimsa]

Shalida Dobbins shares this post for Black History Month:

Spotlight: Black Women and Medical Racism

To celebrate Black History Month, I believe it's important to put a spotlight on medical racism and the dangers of the racist stereotype of the “strong Black woman.”

As a disabled Black woman myself, I have dealt with my share of racism in medical settings. At one point after having a ileal conduit surgery that ended with me immediately waking from anesthesia and being temporarily paralyzed and in excruciating pain. After months of being denied appointments and pain medication, I found a doctor who listened to me and diagnosed me with an autoimmune disorder. I also found a pain management specialist who believed my pain without me having to prove that I was worthy of relief.

It's so important that we recognize the struggle of being believed when seeking medical help. Black women are consistently less likely to have their pain taken seriously at appointments. ME/CFS is already difficult to get taken seriously or to receive a proper diagnosis. Being a Black woman even lessens the chances of being diagnosed.

Share stories and research! Amplify Black voices without speaking for them! Speak up when you witness discriminatory behaviors in healthcare settings. Invite Black women to support groups or calls. You can also educate yourself on the history of racial stereotypes of the “strong Black woman,” medical racism, and disparities in chronic illness care.

 

[Dolphin]

Caregiver Wisdom Facebook:

Chronic illness caregivers see what others don’t.
We see the gaps in medical care.
We see the lack of research funding.
We see how broken systems affect the people we love.

This Sunday, March 1, we’re focusing on “Caregivers as Catalysts for Change” at our monthly Caregiver Wisdom support group for chronic illness caregivers.

Sunday, March 1
12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m. GMT
Caregiver Wisdom Monthly Support Group / #MEAction partner caregiver support group (all caregivers welcome!)

Solve ME Advocacy Director Monique Wike and #MEAction Advocacy Manager Terese Russo will share practical ways caregivers can turn lived experience into meaningful advocacy — influencing medical education, research funding, and public policy for the ME/CFS and Long COVID community.

You are not “just” a caregiver. Your voice carries power.

We’ll also have breakout groups for honest sharing and connection — a space so many caregivers deeply value.

Join us. If you’ve ever wondered how to channel your frustration into meaningful change, this conversation is for you.

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

#CaregiverSupport #caregiving #caregivers #ChronicIllnessCaregivers #MECFS #LongCovid #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 Long Covid Kids - USA COVID-19 Longhauler Advocacy Project Patient-Led Research Collaborative World ME Alliance EDS Canada Foundation Emerge Australia Inc RTHM @followers