Want to pull out this slide: people deserve to know there’s a growing mountain of evidence finding more Covid infections = more likelihood of being left chronically ill. There’s a temptation to think that if you recovered ok last time, then you will next time too, but that’s not what the data say.

Two days ago I took a bath. I typically take a lukewarm bath, but I increased the temp by 5 degrees given the colder weather. Rest of the day I had facial flushing, massive temperature dysregulation and worsened orthostatic intolerance. All because of 5 degrees 🤦🏻‍♀️ #MECFS

Despite not working at first, I was able to find the Novavax vaccine (aka Nuvaxovid) at Shaws thanks to the finder. If you live in NH, call your local Shaws and see if they have it in stock. The one in Windham says they have enough for about a month. nuvaxovid.com/vaccine-loca...

From Helen Connick who posted this as a comment on my FB page: "Made a guide for the people I live with, for when I'm getting the worst PEM, to help them help me rest, and understand" #PostExertionalMalaise #MEcfs #LongCovid

We are sharingthis fundraiser for a member of our community. Unfortunately, they have moved from a skilled nursing facility to a board & care home which offers less services. They are at risk of losing that by the end of the year and face being unhoused. Link: gofund.me/214539f33 #pwME #MECFS

On Friday 18 blue state attorneys general BLASTED the Federal Trade Commission, telling it to back off trans youth healthcare and warning of an insidious attempt to reshape the regulation of medicine in the US. And nobody covered it. www.assignedmedia.org/breaking-new...

🚸 As the COVID-19 Inquiry continues it's focus on children, it's worth remembering that the pandemic reinforced the 'greatest medical scandal of the 21st century' (Monbiot) Not only has it been a crisis of #LongCovid but also #ME CLoCK study 👇 open.substack.com/pub/longcovi...

New Lancet Study: 2x Risk of Long COVID After Reinfection Risks of other serious outcomes also rise sharply. This is not a “mild” illness when it rewrites a child’s future. We need research, medical care, and school protections that match the scale of the problem. #LongCOVID

Fun side note to this BS moral panic, they call Asperger an “Austrian pediatrician.” Skip right over the fact he was a eugenicist Nazi.

When we mask our autism we often put the comfort of neurotypicals over our own. To such an extent it impacts our health. Yet so little effort is spent in the other direction. It boils my blood when I see it happen to my teen.

I do wish more people who beat this drum felt community was important enough that disabled people deserve access to it too

#MEAction is asking you to take action to save telehealth NOW! You can call or email your member of Congress. To make this action easier, we have drafted up a sample script you can use: www.meactions.org/telehealth #Telehealth #PwME #LongCovid #MECFS #Congress #Disability

I will never forget the story of “Cara”, a 16 year old who was bullied into removing her mask at school. Staff and kids bullied her. Her mom was immunocompromised and undergoing chemo, and Cara was trying to protect her. She caught Covid & her Mom died. We must be better than this.

One more day! This fantastic Mayo Clinic #MyalgicEncephalomyelitis #CME has just the rest of today & tomorrow, Sept 30th left. Send it to your providers ASAP! #MECFS #MedSky

Or to rephrase using the hated name for Myalgic Encephalomyelitis (ME): Chronic Fatigue Syndrome kills. The quality of life can be so poor and the suffering so great 😔 And still govts underfund research into #MECFS 🧵

How in the year 2025 are researchers still using the Fukuda criteria? 🤦🏻‍♀️ Whenever you see a new #MECFS study always check how they select ME patients. Fukuda’s giant flaw 👇

A couple of years ago I was in touch with a journalist and I tried to pitch to her the story of Alem Matthees, the work he had contributed to uncovering the PACE trial fraud and how he had become more devastatingly ill in the process. I also said we needed someone asking the hard questions to...

It's 2025, 6 years into a pandemic that has caused an epidemic of new cases of #MECFS. There have never been so many advocacy orgs and quality resources available to inform on MECFS. And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect. #pwME

I just completed this after feeling overwhelmed the first time I tried. It’s less complicated than I thought, & Lenny confirmed you can leave questions unanswered if you don’t have an opinion. I hope especially longtime #pwME who have seen many severity scales come & go will offer your insights!

There’s been some fun disabilty merch lately. As I come across new ones I’ll add to the thread. If you know any, share them below. First up is ME Action’s new line up. bsky.app/profile/meac...

I feel like the 2 specialties that make the most sense to “own” #MECFS are rheumatology and neurology. But they’re also 2 of the specialties I consistently hear people have terrible experiences with. There’s a long road ahead.

Poor Finn. He’s been acting a little off so we took him to the vet. Turns out he has Lyme 🤦🏻‍♀️ He must feel achy because he stole my heating pad.

💯 ME/LC mildwashing is equivalent to only highlighting stories of people who have stage 1 cancer to represent ALL stories of cancer or acting as if because some people recover from cancer all people can. It doesn’t work that way. The focus should be on cures and treating ALL people at all stages.

People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏

It scares me how much chronic illness advice insists this logic is sound.

Hi Internet! I'm Drew and THIS IS MY FACE. If this GIF has ever brought you joy in the past, I humbly ask you to consider making a donation to the National MS Society. It would mean a lot to me and to those I know affected by the disease! Donate at blinkingguy.com

Really important topic. It’s a great day to donate to @thesicktimes.org. Nowhere else is gathering this critical information for people who have Long Covid—or anyone who might get it, which a new NIH incidence study says is at least 1 in 20 people who get Covid.

Invisible Illness Report 2025 via Not Just Fatigue Please also watch this great video with Prof. Maureen Hanson* on the state of #ME/CFS research and the need for major funding to better understand its pathophysiology and find treatments * @cornellmecfs.bsky.social x.com/njfatigue/st...

The Olmstead Decision: www.tiktok.com/t/ZTMFRwh4N/

Oh

Telehealth ends with September! Use @peoplescdc.org's action tool to contact Congress & urge them: Keep Telehealth! Our community relies on it as do millions of other Americans. There is a bill being considered now! More details in the full PeoplesCDC🧵 actionnetwork.org/letters/cmsm...

the most important thing to remember when you see eugenicists who don’t believe that autistic people should exist rambling about “the autism epidemic” is not that they’re wrong about the “cause” (although they are absolutely wrong about it); it’s that they are eugenicists

Take action TODAY! Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1. Sample language & link: docs.google.com/document/d/1... #MedEd #CME #MECFS

#NEISvoid Really important illustration of why defining PEM as just any worsening after exertion will result in a seriously confounded sample of people with and without ME, making it look like some people with PEM benefit from exercise.

“As politicians turn on this final tool, can we not at last agree that our government has no plan to control COVID-19? The plan is to offload the costs of this virus - of mitigation, of infection, of long-term damage to health, of lost wages- onto you.” www.thegauntlet.news/p/with-rfks-...

i have to say, as a trans journalist who has covered the "trans debate" for about a decade now, there is no daylight between how the trump administration and conservatives lie about tylenol and autism and how they've lied about youth trans care.

This is the most anti-science thing I have watched today. What is most shocking about this is all of these statements are being made without any scientific evidence to back it up. There are very few safe options to treat pain and fever in pregnancy so this is also an attack on women's health.

Repeat after ME: P E M Is Not Fatigue PEM Is Not fatigue #PEM≠fatigue #MECFS #PwME #PEM www.nih.gov/news-events/... pubmed.ncbi.nlm.nih.gov/33071931/ pubmed.ncbi.nlm.nih.gov/37205352/

RFK Jr said we'd know what causes autism in a year. Battarchaya said during the Long COVID meeting that we'd have answers by this time next year Is this like Elon's "five years" for developing tech? Do they figure everyone will have forgotten it by then, just in time for the next false promise?

I need help from the #MECFS and #EDS communities. I keep subluxating and dislocating my ankle in bed. Being mostly bedbound, this is a problem. Does anyone have ankle brace recommendations? What I'm looking for 👇

🚨 This is where I understand things stand as of today & what I'm asking folks to do: 🔺️ Neither House nor Senate has passed their stand-alone telehealth bills. Telehealth extensions expire in 11 days ☎️ Call your representative & ask them to pass the CONNECT for Health Act (H.R.4206), which... 1/5

Two symptoms can accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome @sunsopeningband.bsky.social Todd E. Davenport et al. journals.sagepub.com/doi/10.3233/... #PEM #ME/CFS #b2bCPET

Historic Medical Samples Could Unlock Mystery of Akureyri Disease 1 september 2025 Long-sought specimens from an ME outbreak that sickened 1000 in Akureyri (Iceland) 77 years ago discovered at The National University Hospital #ME/CFS #pwME

Autism is a common comorbidity of EDS and hEDS. For many of us with both, chronic pain is an issue. Hernias, prolapses, migraines, ruptures, dislocations, sprains, and weak ligaments are common. I feel internally shaky all the time. No one believed me, so I stopped believing my body and abused it.

Finds “systemic immune dysregulation, particularly involving the complement system and profibrotic cytokines, as a common feature in hEDS pathophysiology…challenge traditional view of hEDS as solely a connective tissue disorder and support a revised paradigm that includes innate immune dysfunction.”

My back was out most of the month so I wasn't able to spend hours down at the county bldg. I just kept callin Today I called to confirm my EBT had been deposited. I was told by an automated message that my EBT card has been CANCELED! $maelee21 V: @ Maelee-Johnson PayPal.me/maeleeJ ko-fi.com/maedaej

From @emergeaustralia.bsky.social : "The AusME Registry is making a real impact! The AusME Registry is now supporting 25 research projects across Australia - helping scientists unlock the biology behind ME/CFS & long COVID" Get involved here: emerge.org.au/get-involved... #MEcfs #LongCovid

From @thesicktimes.org HHS coverage: “The makeup of the panels was not representative of the affected population to such a degree that the homogeneity appeared pointed and purposeful,” said #MEAction scientific director Jaime Seltzer. @exceedhergrasp1.bsky.social thesicktimes.org/2025/09/18/k...

You can support Stefan with #SevereME in Tijuana, Mexico, through this page. #pwME #MyalgicEncephalomyelitis t.co/G5jeThNm0n

Post-Exertional Malaise #PEM Brayden Yellman, MD University of Utah Health Project ECHO Bateman Horne Center of Excellence Post-Exertional Malaise • Unique and PATHOGNOMONIC finding in #ME/CFS • Not known to exist in ANY other illnesses, including those suffering from post- chemotherapy