If you're quiet about your disabilities, you get accused of being a fake. If you're outspoken, you get accused of being attention seeking. Disabled people deserve to be believed and supported without hate. We deserve to be able to thrive.

Ultimately, we hope this work not only contributes both to a reliable diagnostic tool and a deeper understanding of ME/CFS but also continues to bring understanding of the biological problems that result in the lived experiences of these patients” ME/CFS help = Long COVID help

A rose bud without its bloom and yet still so beautiful. #FindingBeautyWhileBedbound #mecfs #pwME #BedBoundSoulFood

If patients with #longCOVID and #MECFS can wrap our heads around the complexities of our #chronicillness -- and we've had to, often with little help -- then doctors are more than able to do the same. None of this is new. We need informed and supportive #healthcare. We've needed it for decades.

Good news, it does have a save and return button! It took me approx 15 mins to complete. #MECFS

#mecfs #spoonies #longcovid #pwME

The problem is not “mothers doing their own research”. If I hadn’t done so, I’d have further disabled my #MEcfs teen whose doctors and allied health pros ALL told me to make him exercise. The problem is disinformation. TBC, I listened directly to the disabled community. Damn good idea, that.

Non chronics, we ask that you don’t confuse what helps a person cope with what cures a person of an illness. #mecfs #pwME #MEAwareness

ME communication/caregiver survey to help with the development of a communication app Caregiver survey docs.google.com/forms/d/e/1F... ME patient survey docs.google.com/forms/d/e/1F... #LongCovid #MEcfs

How do you explain to people that boredom would be a luxury. Once you have #severeME or in a crash there is just enduring. There is just trying to get thru one moment to the next. #mecfs #pwME

Alone, in the shadows but tethered together. Feel the silent, gentle solidarity of those that know, believe and understand your suffering. #SevereME #mecfs

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

A little hope on Severe ME Awareness Day. #MyalgicEncephalomyelitis #SevereME #MEcfs #MyalgicE

I don’t do this often (ever) but I thought for #severeMEawarenessDay I’d share something I wrote about being a #pwme

Today is Severe ME Day. A poem imagining a world free of the ableism that compounds the trauma of this dreaded illness. #SevereMEday #pwME #MECFS #SevereME #ableism #bedbound

It is not your fault pacing is so hard. It is not your fault that the smallest of things have a huge cost. It is not your fault the survival is often incompatible with pacing. It is not your fault that we don’t live in a world with access to adequate support to manage our illness. #mecfs #pwME

As we come to the end of Severe ME Day, I wish I had some powerful words that could bring you peace, hope, and encouragement. What I can do is remind you that your words have power. Your stories matter. #SevereMEday #UnitedForME #pwME

Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS! Pre-print plus li'l video before we get into a deeper dive. Vid: www.youtube.com/watch?v=0S5u... Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵

If you missed @emergeaustralia.bsky.social’s #SevereME Day symposium today, check out the thread below! #mecfs #longCOVID #ChronicIllness #Disability

Still, after all this time my productivity prioritising brain tells me the opposite but my body knows rest is a right not a reward #mecfs #PwME #LongCovid #spoonie

Tried it. Still cureless. Wellness tips are no match for a debilitating, chronic, complex, multi system illness. #mecfs #pwME #MEAwareness

It’s not just you, stop, rest, pace is so much harder than it sounds. Without access to a ton of support, crash, rest, go is often the only option for basic survival. But #StopRestPace is still incredibly worthwhile when possible. #LongCovid #MECFS #pwME

Need Help! We're linking ME/CFS, long COVID patients to supportive GPs. Are you a patient or a GP? Fill this form - vist.ly/3yaps to join our directory.

Daily kindness reminder: no matter what unhelpful societal message your brain is repeating, your body knows self compassion is a productive pursuit. #pwME #mecfs #stoprestpace #LongCovid #ChronicIllness

Going to keep linking to this; having been living with ME/CFS for 25+ years, i have Opinions. "ME/CFS patients often face healthcare abandonment, disability and insurance support rejection, and are at risk of harm from government-sponsored medical malpractice."🧵 #mecfs #cfs #chronicillness #auspol

Right now a good day would be having half a teaspoon. #pwME #spoonie #severeME #LongCovid

✨An ask!✨ Hey, #NEISvoid... do we know of any #MECFS specialists in South Africa? ✨Please share!✨

July is #DisabilityPride Month. The social model of #Disability holds that disability doesn’t reside in the body, but is shaped by the world’s refusal to include us. Practical provisions, compassion and justice are not extras, they are entry points to belonging. #InvisibleDisabilities #MECFS #FND

It’s incredibly hard to have a chronic debilitating illness and not know how to be ok taking up space in other people’s lives. Too many emotions, so little energy to process any of them. #mecfs #pwME #severeME

As we are living through an ongoing, mass-disabling pandemic, this picture speaks a thousand words.

Chronic illness mantra “Other people’s lack of belief is not a reflection of your truth" #mecfs #LongCovid #spoonie

“It takes so much self-control and strength to do less,to be less,to shrink your life down to one or two small things from which you try to extract joy in order to survive.” .. rest has become both a medical necessity and a radical act of defiance,one that, in itself, is exhausting. #mecfs #pwme

humans: "I have energy → I can do things." ME/CFS: "incorrect. you *had* energy. now you have consequences." it's like finding $20 in the street, spending it immediately, then learning it was cursed... and now you're $200 in debt. #NEISvoid

Severe ME means living as if you are already dead. #PwME #MECFS #SevereME

theredtreeandme.substack.com/p/one-red-le... #oneredleafatatime #TheRedLeafCreativeCollaborative #TheRedTreeandME #MyalgicEncephalomyelitis #LongCovid #pwME

Stop rest pace is so much harder than it sounds and so rarely possible without access to adequate support. But worth it to try when you can. I say that as someone who paid a very high price for only stopping and resting when I crashed and had no choice #SevereME #mecfs #LongCovid

Another #MEAwarenessMonth done and another long recovery for the #MillionsMissing who gave the tiny bit they had to fight for a better future. #StongerTogether #mecfs #PwME

Dear doctors & therapists: When patients say: “I crash after brushing my teeth,” “Sleep doesn’t help,” “Even short talks knock me out,” or “I feel flu-sick every day” - think #PEM. Not depression. This is #MECFS. Protect. Don’t activate. #MEAwarenessMonth #NoGET #SevereME

New research links #MECFS to T cell exhaustion—immune cells worn out from chronic activation. This isn’t “just fatigue,” it’s a biological crisis. We need urgent investment in ME/CFS research and real answers for millions suffering. #pwME #TcellExhaustion #ScienceMatters

There is a level of severity for #pwME where it doesn’t even feel like your existing…your just enduring. #mecfs #SevereME

Today is National Sorry Day. Every May 26, Australia reflects on a deep national wound & commemorate the grief, trauma & loss experienced by the Stolen Generations—thousands of Aboriginal & Torres Strait Islander children forcibly removed from their families by the government. #auspol #SorryDay

There are millions of us with broken batteries and broken lives. See us, believe us, help us. #MEAwarenessmonth #PwME #MillionsMissing #MECFS

The hallmark symptom of ME is post-exertional malaise, or PEM, a kind of bodily overdraft fee that hits when people with ME expend energy beyond the slim “energy envelope” available to them. #pwME #mecfs #LongCovid yaleglobalhealthreview.com/2025/05/18/a...

Boycotting large chains is a privilege. Protesting is a privilege. Moving States or countries is a privilege. Prepping is a privilege. Growing your own food is a privilege. Stockpiling meds is a privilege. Far too many of the “solutions” to fascism are inaccessible to many disabled people.

Dear health professionals, it’s really very simple. #mecfs is a biological illness not a psychological illness. #meawarenessmonth #millionsmissing #pwme

Save our support systems, save our science, save our society! My chronic illness, ME/CFS, is the most underfunded disease by disease burden in the NIH, leading to under diagnoses even of severe cases and no existing FDA approved treatment. @meactnet.bsky.social #MillionsMissing #DisabilitySOS #art