Amy Hart

Graphic 1 of 4. DecodeME: The Results graphic. The slide says: ‘The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes to this poorly understood disease’.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says: ‘At least two of the signals relate to the body’s response to infection’. Beneath this is an image of green germs.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says: ‘Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS’. Beneath this is an image of a person curled up in bed feeling ill.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘All of these signals align with how people with ME/CFS describe their illness’.

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Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk

I think this is an important consideration for advocacy: most of us who take and advocate for precautions don’t really care about looking weird, and most of the people we need to reach really do.

Doesn’t matter if you think they shouldn’t: they do, so we need to figure out how to work with that.

Do we do cover reveals here? I'm doing a cover reveal.

WANT IT ALL, a light/dark academia #omegaverse, coming soooooon

I’m enjoying this one too! Only one episode left to watch!

Happy birthday!! 🎂 🥳

What a farce! Keeping teachers, nurses, midwives, care & support workers + other essential workers underpaid so they can give tax breaks to leveraged landlords, tobacco companies & mining companies.

It’s a political choice that benefits a few. #nzpol

YouTube video by Re: News ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies

Today is #InternationalMEawarenessDay recognising the #MillionsMissing with #MECFS.

One story from NZ documenting how families have to create their own health system.
www.youtube.com/watch?v=DsOA...

Currently, there is no cure for ME. Some medical professionals still don’t even believe it exists. Efforts to raise awareness usually don’t go far beyond those of us who already have the disease. So please, educate yourself, share the posts, and donate to any of the wonderful ME charities worldwide.

My own symptoms have been getting progressively worse over the last nine years, and at the moment I’m about 90% housebound. I use a mobility aid when I do manage to go out, I need frequent rest breaks, I’m unable to work, and I had to stop driving years ago. 🧵

One of the key symptoms of ME is post-exertional malaise or PEM, which is a delayed worsening of symptoms after any kind of exertion, no matter how small. This can include physical or cognitive exertion. 🧵

Symptom severity can range from “mild” (sufferers at this stage have already lost about 50% of their normal function) to “very severe” (where patients are bed bound and may be unable to eat, speak, or tolerate light and sound). 🧵

What is ME? It’s a complex, physical, disabling, multi-system chronic illness. It can affect the brain, muscles, immune system, digestive system, and the autonomic nervous system. 🧵

But ME is wildly underfunded and it’s a condition that is misunderstood by both doctors and the general public, so even though this is primarily a writing account, I’ve decided to share a little bit about ME and about my experiences with it. 🧵

Today is #MEAwarenessDay. I was diagnosed with ME in 2023, even though I’ve had it for about nine years now, and it’s exhausting and debilitating, and I almost didn’t make this post because sometimes I just don’t want to think about it. 🧵

📸Image description. A black tile with white text “Pay equity means fair pay for all. It means valuing community support workers, teachers, library assistants, and more. The Government is widening the gender pay gap.” A red PSA logo is bottom centre.

MEDIA RELEASE: Dark day for women as Government slams brakes on pay equity to save money.
www.psa.org.nz/news-media/dark-day-for-women-as-government-slams-brakes-on-pay-equity-to-save-money

Gru with a large white pad that says "First we get a book". In the next panel it says "Then, we get another book". In the next panel it says "And then we say no more books". In the next panel it says "But then, we see another book". In the last panel Gru looks excited and it says "So we get two more books!"

Me on Independent Bookstore Day

Absolutely. It’s the most horrible feeling. Lost the ability to speak for a few hours the other night because there just wasn’t the energy available to get the words from my brain to my mouth. #pwme

I went from mild ME/CFS to moderate-to-severe because I pushed myself to exercise per doctor's orders. This is a permanent degradation in my quality of life and ability to do things.

If you have ME/CFS or Long Covid, and are prescribed exercise (or "graded exercise therapy"), GET ANOTHER DOCTOR.

Until now. For instance, the cancer scientist Kseniia Petrova, a Russian immigrant who worked at Harvard’s renowned Kirschner Lab, has been in a Louisiana ICE prison for two months now, and is facing deportation to Russia because she allegedly lied to a border control officer about carrying frog embryos for research purposes. Not only is this likely false—she told NBC News that she did tell the officers the truth—but the usual penalty for such a piddling violation is a $500 fine, knocked down to $50 for a first offense. Instead, ICE revoked her J-1 visa and threw her in prison pending a hearing to deport her back to Russia, where she might easily end up in prison or dead for criticizing the Putin regime. Petrova is not just any cancer scientist—she is perhaps the world’s top expert on analyzing the images produced by a new cutting-edge, ultra-specialized microscope that is being developed to diagnose cancer cases. Leon Peshkin, Petrova’s manager, told NBC that the task “requires a unique set of skills because you have to both be able to work as an embryologist and do applied math, modeling, data analysis and bioinformatics—all in one package.” Nobody else in the lab could do what she does, he added.

one of the world's top cancer scientists, who works for Harvard, is at risk of deportation to Russia where she might be killed for criticizing Putin, because she allegedly failed to disclose carrying frog embryos at the border. it's upending American medical research: prospect.org/health/2025-...

Pusheen reads a book while comfy in a bean bag chair.

☕ Happy World Book Day! 📚✨

This is a familiar pattern, and not familiar in a good way.

Congratulations!! 🎉

If you’re changing the definition of human rights, it means you plan on violating people’s human rights.

Call your Congressional reps and tell them that you do NOT approve of these cuts. Pick your grounds based on personal experience (relying on Head Start programs, importance of AIDS/HIV research, ME/CFS funding, wastewater monitoring)-- and tell Congress you're pro-science, not pro-disease. 🧵💪

"The proposal would cut the CDC’s budget by about 44 percent, from $9.2 billion to about $5.2 billion, and would eliminate all of the agency’s chronic disease programs"-- that's us, folks! 🧵

National Center for Emerging and Zoonotic Infectious Diseases The Budget discontinues funding for the Lyme Disease,. Prion Disease, Chronic Fatigue Syndrome and the Harmful Algal Bloom programs to prioritize funding for core infectious disease and surveiIlance activities. The Budget also includes $25 minion for the wastewater surveillance program within the Emerging Infectious Diseases PPA."

Some bad news for people living with #MECFS.

Under the 2026 "passback", the "reorganization" of HHS and CDC would cut all ME/CFS funding from CDC.

I think this is a 'scoop', since I'm unaware of anyone having reported on it, yet.

Let's talk about what a passback is, and what it means for us. 🧵🧪

Hey, did you know there's an alternative to ChatGPT that makes sense economically and doesn't destroy the environment?
It's called English majors and they will happily fix all of your documents for the low price of health insurance and a living wage.

For the benefit of the usual suspects, this is what "Orwellian" actually means

Talking about "women's health" as though women are defined by having a functioning uterus, ignoring all the women (including cis!) who don't and erasing the trans men and NB folk who need this specific healthcare

What the actual fuck??? There are just…so many things wrong about this.