The way “maybe this is the best it’s gonna get and you just have to accept this is your baseline” coming from a medical professional when your quality of life is practically nil really hits different than their tired old “just drink water and think positive” line

Look at that bottom shelf and let that sink in for a minute. “Get dressed. Eat. Shower.” Out of reach. Fortunately eating has become not a problem for me. But I cannot change clothes every day (tho more easily than I used to) and I absolutely cannot shower by myself or frequently.

An article on how being ill with ME, particularly severe ME, is psychologically challenging meglobalchronicle.wordpress.com/2022/09/25/l... #SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social

🧵 "The Trouble With Recovery Stories" by Naomi Whittingham @naomiwhitt.bsky.social (with severe ME for decades) alifehidden.com/2024/11/05/r... An excellent, articulate article discussing “Recovery Stories” and the complex impressions and impacts they bring about #MEcfs #CFS #PwME 1/

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

Solid info on PEM

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” 🙏

New research shows Long COVID isn’t “just fatigue.” Its impact on daily life can be as severe as stroke or Parkinson’s. Worth reading, worth sharing.

Health Rising: “Screaming Immune Activation”: Major Lipkin Study Finds ME/CFS Systems Folding Under the Stress” “The end product of all these pathological processes, the authors believe, is “systemic inflammation” www.healthrising.org/blog/2025/09...

I continue to decline and now I’m dealing with daily neurological issues on top of PEM. It’s an endless gauntlet of bad luck day after day. How do you keep going when you don’t get a break? How do you convince yourself hanging in there is worth it? #pwME #mecfs #pwLC #LC #PEM

Via @longcovidadvoc.com “And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility.” @edyong209.bsky.social #PEM #ME/CFS #LongCOVID

UK research: Exercise-induced Changes in Microclotting and Cytokine Levels Point to Vascular Injury and Inflammation in People with Long COVID www.researchsquare.com/article/rs-6... Screenshot from the Science for ME weekly update #PASC #LongCovid

NL Times: 'Muscles of long Covid patients respond differently to inactivity than healthy people' 'Researchers also saw issues when it came to energy production. This came as a result of malfunctioning mitochondria, which are the energy factories...' nltimes.nl/2025/05/23/m...

In an international survey (n=1534) www.mdpi.com/2075-4418/9/..., 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise). Patients & professionals should be informed of this risk. Exertion has ruined some people's health #MEcfs #CFS

Games can be sense-making tools, allowing players to vicariously experience the risks of contracting COVID-19, recognize #LongCOVID’s most challenging symptoms, and connect with others amid an ongoing public health crisis. Read more from @kaatefishman.bsky.social: bit.ly/4iQhmuE

From ME Research UK: Having “CFS/ME” deeply impacts “experience of adulthood & relationships, and the consolidation and formation of identity” finds a small Australian study. “People not understanding” was identified as "the biggest struggle" with having the disease More: tinyurl.com/mr3rr8nx #CFS

🧵 It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships www.emerge.org.au/how-to-suppo... #LongCovid #MEcfs 1/

SciTech Daily: 'Scientists Discover Drug That Could Finally End Long COVID Suffering' 'WEHI scientists discovered a drug that blocks long COVID in mice and may improve acute treatment options beyond current antivirals like Paxlovid.' scitechdaily.com/scientists-d...

There’s a deeply unfair cruelty in ME/CFS, in that the more severe you are, the less you can control the amount of PEM you get. Which means you have less power to stop further worsenings. The further down you fall in the hole, the more you struggle to find ledges to hold onto.

How I treat my patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CVS), fibromyalgia or “long COVID” by Prof. Frank Comhaire (in Belgium) jcimcr.org/pdfs/JCIMCR-... #MEcfs #CFS

SCV News: 'April 17: Public Health Town Hall on Long COVID' The Los Angeles County Department of Public Health will host a Town Hall on Long COVID where public health experts & community partners will answer questions on the long-term effects of COVID-19 scvnews.com/april-17-pub...

What psychobehaviouralists don’t get about ME/CFS is that we desperately wish it was in our head and we just had to push ourselves and we’d get our life back; wish all we had to do was exercise and we would be cured. But it doesn’t work that way. We tried and tried and now we’re worse off for it.

"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS] by @jewstein3000.bsky.social in @thesicktimes.bsky.social thesicktimes.org/2025/04/08/i... Contains quotes from patients and also some experts in the field #LongCovid #MEcfs #POTS

Pulse Today: 'Long Covid and ME patients report delays in diagnosis and low satisfaction' 'The parallels seen in the experiences of those with ME/CFS and long Covid suggest ‘significant improvement’ is needed in how patients are diagnosed and cared for' www.pulsetoday.co.uk/news/clinica...

According to a new study, people with Long Covid feel they must “prove” their illness is physical to be taken seriously. This pressure is not just exhausting—it’s harmful. We deserve care that acknowledges the whole truth: Long Covid is real. And support should never depend on how convincing we are.

A tiny little local newspaper vastly outperforms the big guys by describing ME/CFS including a lot of the optional symptoms and just informs people without any spin. Its probably one of the best straight forward "disease you don't know about" articles. www.getsurrey.co.uk/news/health/...

Having this be nation-wide would be amazing. Way to go, Illinois!

Watching @booker.senate.gov stand up and fight for the disabled, the researchers, the seniors, the parents, the protesters, etc. until he physically can’t anymore is truly amazing.

Life shrinks with ME/CFS. Found on the CFS community on Reddit #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

6/ ScienceNorway: Almost no ME/CFS patients return to work www.sciencenorway.no/chronic-fati... Image is from the latest Science for ME weekly update #MEcfs #CFS

“We’ve been conditioned by society that pain is weakness. That being sick is something you can overcome by simply trying harder.” You can’t “try harder” your way out of disability. It’s not a weakness or a moral failing. My latest includes tips to support the disabled person in your life:

🚨 BREAKING: #LongCOVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, according to patient representatives in the initiative. bit.ly/3FO8LuQ

Nice work out of RECOVER but I’d argue that the part about resting recharging your proverbial battery isn’t exactly correct. I don’t know about others but no matter how much I rest, I don’t find myself recharged at all.

"Research finds potential “molecular mimics” behind COVID-induced #autoimmune disease" www.eurekalert.org/news-release... “some of the human proteins the researchers identified as likely targets of COVID-induced autoimmunity are only found in people with specific genetics” #LongCovid #PASC

In 30 seconds you can support millions with Long Covid. Click to write to President Trump, HHS Secretary Kennedy and your members of congress demanding they stop closing #longcovid programs. This is not a restructuring. This is targeted erasure. #pwME #chronicillness bit.ly/4hKQ7B5

New study out of Russia: Efficacy and Safety of Fonturacetam in Asthenia (weakness and fatigue)

New Yale study says our muscles can’t use oxygen properly during activity. It’s not deconditioning—it’s dysfunction. Long Covid isn’t laziness. It’s a system crash.

🧵 "Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher." www.sciencenorway.no/chronic-fati... #MEcfs #CFS #PwME 1/

CBS News: 'Columbia University faces federal deadline to make changes or lose $400 million in funds' 'Dr. Ian Lipkin is the director of Columbia University's Center for Solutions for ME/CFS..' "We really felt as though we were on the cusp..." www.cbsnews.com/newyork/news...

Getting back to work feels like a pipe dream; I’d just take being able to independently take care of myself again. I wish more of these articles could be written without bias. None of us are useless because we can’t work anymore. Working is not all there is to life.

I wish my ME/CFS would “mysteriously disappear.”

The only thing is that they fail to mention the current administration has already disbanded the Congressional LC Committee and enacted deep cuts to NIH, making future research impossible for the foreseeable future.

🧵 Thread where I'm going to post some slides from this sympathetic February presentation "Shame, Psychology and ME" uwe-repository.worktribe.com/output/13780... #MyalgicEncephalomyelitis #MEcfs @kacheston.bsky.social 1/

LC has taken just about everything from me. Work, income, friends, my mobility. It’s heartbreaking we’ve all been left behind because we’re the unwanted reminders the public doesn’t want to see. And there’s no end in sight for us.

March 15 is International #LongCOVIDAwarenessDay, a time to raise awareness and amplify the voices of millions worldwide who continue to suffer from the prolonged effects of COVID-19.

I often struggle with not feeling good enough as a disabled person. I struggle with comparison to non-disabled people and other disabled people. We leave disabled people with only two choices - to be superheroes or pitiable cripples. We leave almost no room for them to have human emotions.

Today is the 35th anniversary of the Capitol Crawl, in which disabled activists discarded their mobility aids at the foot of the Capitol steps to climb them in support of passage of the Americans with Disabilities Ac. Jennifer Keelan-Chaffins, 8, told reporters "I'll take all night if I have to!"

People who stick their heads in the sand and whine about how “traumatized” they are because they had to stay home a couple of weeks infuriate me like no other. People died. People are now disabled, probably for life. But please, tell me how traumatic it was to stay home and learn how to bake bread.

From @meresearchuk.bsky.social Researchers have have provided recommendations for alternative, preferred phrasing which they hope can improve chronic illness care through “compassionate, encouraging, and non-judgmental language”. Read more: tinyurl.com/3hftbrfz #chronicillness #invisibleillness

This is not talked about enough