#ChonicIllness #InvisibleIllness #Disability #NEISvoid This sort of medical situation is something to be aware of for all of us. Horrific. Could happen in many specialties. Courtney's doctor operated seven times to treat severe endometriosis experts say she didn't have

If Moderna is no longer bringing vaccine trials for Epstein-Barr virus (good evidence that EB causes Multiple Sclerosis), herpes, and shingles because of Trump appointees, I want prison time for those appointees. This might be dooming millions to disease they don’t have to experience.

#ChronicIllness #Disability #InvisibleIllness #NEISvoid I received my approval today. 🎉🎉

"Peluso also emphasized the continued need to involve patients... @ahandvanish.bsky.social, co-founder of @patientled.bsky.social, said UCSF's researchers not only.. recognize(d) that SARS-CoV-2 was causing this disorder, but they listened to patients & sought their participation in finding answers"

“HIV taught us how chronic viral infections can affect the body long after initial illness, and how important it is to involve patients in that research,” said @michaelpelusomd.bsky.social. “Applying those lessons to #LongCovid has helped us accelerate discovery” www.ucsf.edu/news/2026/01...

Spent few hours updating references to studies published in 2024-2025 today. I'm happy there are reviews like these for example on #fibromyalgia confirming that what I wrote on the matter over two years ago is still correct and up to date www.clinexprheumatol.org/abstract.asp... #autoimmunedisease

Fibromyalgia is often present in any #autoimmunedisease. It is awful. However, to frame it as a psychiatric disorder does not make it more treatable. Drugs very controversial. Strong evidence of effectiveness for exercise and healthy metabolism @eular.org 2016: ard.bmj.com/content/76/2...

As someone who is battling stage 4 metastatic melanoma & worries every day that I won't get to see my kids grow up, this hits home. All my kids have ever known is a mom who is sick. They understand how life can knock you down. My job is to teach them about resilience, joy, love and hope. 🩷 #Cancer

#ChronicIllness #Arthritis #disability #InvisibleIllness #ChronicPain If you have never heard of myotherapy, here is an 11 minute intro. I highly recommend it, see mine every week at the moment. Any questions, feel free to ask!

#ChronicIllness life. So today had phone call with my GP as my BP refuses to return to normal & she was also concerned. Increased my BP med dose, went for a heap of blood tests, a urine test & an ECG. Checking thyroid levels, inflammatory markers, pretty standard. Plus kidney tests. That's new.

Loved the imagery used in this article. It helped me conceptually ground the concepts. This was a really clarifying read.

Sometimes it means choosing survival, dignity, and long-term wellbeing. 💛 Your worth is not measured by your output. You’re not alone — more real MS stories at livewithms.com #MSAndWork #ChronicIllnessReality #LiveWithMS #DisabilityAtWork #InvisibleIllness

Sometimes the hardest decision isn’t staying strong — it’s walking away to protect your health. Leaving work doesn’t mean giving up.

I didn’t leave my job because I wanted to. I left because my body stopped negotiating. MS doesn’t always fit into productivity schedules, deadlines, or “push through it” culture.

🧵 of highlighted #MECFS and #LongCovid research papers being discussed this week on the Science for ME forum. 2 - 8 Feb 2026

I decided today's the day! Will see how I go! Have drive my car around the block to make my foot works the pedals OK. #surger #postop

At #MauiDerm2026, Linda Stein Gold, MD, shared key insights on emerging psoriasis therapies—and why early recognition of psoriatic arthritis matters. From PsA red flags to navigating IL-23s, IL-17s & TYK2s, watch the full interview:

Most doctors’ knowledge of Long COVID vs The published Long COVID science.

#Medsky🧪 #IDsky #Neurosky #publichealth @nature.com This study has redefined #ParkinsonsDisease (PD) as a disorder of the Somato-Cognitive Action Network (SCAN), a brain system that integrates whole-body movement, cognition, and internal physiological states www.nature.com/articles/s41...

#ChronicIllness First up, let me say I do love my myotherapist - as in love his work. BUT he has this habit of asking "And what are your plans for the weekend?" Always a stark reminder I'm doing NOTHING exciting, I have no social circle and no family here. Life can be boring! (1/2)

Slowly but surely... steps graph on the left, weights graph on the right. 4 moon boot days to go! 💃💃 #surgery #postop #recovery

Not all my days a great, even if I give that impression. I woke up at 1:56 am, cld not get back to sleep. Got awful stomach pain at 3:30 am (yes, I know a heart attack can feel like indigestion) it only lasted 8 minutes, but OUCH! A 2nd episode around 5:30 am. OK since. #ChronicIllness

Told my GP today: "I don't have the patience to be a patient."

Batch cooking day today. I hope I haven't bitten off more than I can chew (no pun intended) given I'll be standing doing food prep in this stupid moon boot (5 days to go of THAT). It occurs to me perhaps I should buy a stool of some sort for working at the kitchen bench. #surgery #ChronicIllness

"We invite u to attend this symposium, featuring leading #Hemostasis experts—Dr. Steven Pipe & Prof Katrien Devreese, along with 2 patient #advocates." — I am excited to be a speaker for #Werfen! Sign up to watch 🙂 buff.ly/vtjPjQI #AntiphospholipidSyndrome #MedSky #ChronicIllness #rheumatology

Very good idea! Fits with pacing of activity etc too. I restarted my exercise regime in 2015 (after I became a #ChronicIllness patient in 2014) walking 5 minutes, 4 times a day. Built up from there. Not a fan of the gym? Why you should try 'exercise snacking' #exercise #health

“That voice telling you to do more, be less of a burden, prove yourself constantly? That’s not your intuition. That’s conditioning. And you’re not #broken for believing it.”: buff.ly/7HtOE7e by @thethrivingspoonie.com #ableism #ChronicPain #ChronicIllness #disability

I'm going to have ice cream. Stuff it.

"We joke, darkly. We vent, shamelessly..we say the things we can’t say outside this circle..Because the #truth is, it’s not about being #negative. It’s about being real. & most people can’t handle real. But we can. We do. Every damn day.": buff.ly/uAxe986 by @unremarkableme.bsky.social #ChronicPain

"the #blessing & scourge of the 21st century is #convenience – fast food & deliveries, speedy transportation, immediate online purchases, etc. It has never been easier to obtain our material end #goals simply by sitting on our bums.": buff.ly/HnNNiMd #society #grateful #ChronicIllness #disability

There is a storyline in Season 2 of #ThePitt about a patient with #diabetes rationing their #insulin because they don’t have health insurance, and it really hit home for me. A friend of mine died for this very same reason. My child has #T1D and even with good insurance it isn’t cheap. 1/2

#ChronicIllness adventures. My BP's gone weird again so back on BP med. 🤬 This has only happened post surgery, no idea, what's going on. Looks like I'll be doing a 24 hour BP monitor gig. 🙄 Then I have a weird bruise that's appeared out of nowhere, but have been off anti-clot med for 2 weeks now.🤷🏻‍♀️

In the last few years in #raredisease, we've gone from "Cure" being almost a forbidden word to hearing it every day. Rare disease patient families don't use the word "cure" lightly, & we are realistic in our optimism. @ingohelbig.bsky.social explores this in Cure vs. treat bit.ly/3Z7HpGo

MS symptoms aren’t always visible. Fatigue, brain fog, pain, and emotional changes often go unseen — but they are real. Understanding starts with listening. Learn more at livewithms.com. #MultipleSclerosis #MSInMen #InvisibleIllness #ChronicIllnessAwareness #MSCommunity #LiveWithMS

Long COVID isn’t just a health issue it’s a workforce & economic crisis. Millions affected, billions lost in productivity across the UK & Europe. Full analysis → longcovidjourney.com/2025/11/24/t... #LongCOVID #PublicHealth #HealthEconomics #WorkforceImpact #Epidemiology #HealthPolicy

It's Factsheet Friday! Dizziness & balance issues - these can be signs of Vestibular Migraine. Our updated factsheet explains this subtype, what it looks like, and what treatment options are available. https://www.migraine.org.au/factsheets more in comments 👇 #migraine #invisibleillness

💯 it's what I'd tell someone to include on their care team right from the beginning.

"Dr. Manek emphasized the importance of #StressManagement for controlling #inflammation. “The #medications for inflammatory #arthritis & #ConnectiveTissue diseases do not address the stress pathways that are so fundamental..”": buff.ly/HgqQo3C via ACRheum #ChronicIllness #AutoimmuneDisease #MedSky

“Millions of Canadian homes have high levels of cancer-causing radon. Is yours one of them?” www.cbc.ca/news/health/... - CBC News #Canada #Cancer #Health #Radon

Non-specific symptoms such as #fatigue, #pain or #weightloss can be caused by #cancer, another serious condition or something completely harmless. Researchers from 🇸🇪 @ki.se have developed a simple 🩸 blood test that can help provide relevant clinical information.

Now I can report my new mattress is FANTASTIC! Got my back "restored" from stressing it on Tuesday, so last night was my best sleep in years. To anyone with a damaged back who is having trouble getting a good night's sleep, maybe consider whether you need a new ( in my case firmer) mattress.

“The Flare folder contains things like..reading my book, watching..TV..all things I can do unless I am bad & if that is the case I flip the setting to holiday mode &and forget about everything until I’m managing better.”: buff.ly/9wck3Qe By creativefibro.bsky.social #ChronicIllness

I agree. I think there are very skewed perceptions of what it means to be disabled or chronically ill. There's a lot of "If you did this thing, you should be able do this other thing" and a lack of understanding of dynamic disability. I wrote about this: www.saturdayeveningpost.com/2019/12/on-h...

And I feel like far more ire should be directed toward venues and public transit systems that have so few disabled accessible places. People should not have to be fighting for a handful of ADA seats. I get your point completely too, and thank you for bringing it up!

@writerdenise.bsky.social Loved your thread! Didn't want to detract from your VERY valid points. Just wanted to say I've been on the receiving end of needing a seat, asking a schoolboy to stand up, but he claimed he had a broken foot. He did not. By sheer coincidence his school was opposite my

A program like IBCCES Individual Accessibility Card (IAC) might stop questions about #Disability at the point of sale/admission, but would not stop judgments. I have no doubt that even with an IBCCES credential people would still be casting aspersions on others who "don't look sick." 6/

I need to talk about this article. It posits that a lot of people taking disabled seating at sporting events and concerts should not be there. The author briefly concedes invisible #disability exists but then goes on to say she observed people in the seating area 1/ www.cbc.ca/news/gopubli...

Recent research adds to a growing body of work showing that #SARSCoV2 infection leads to long-term disruption of immune system function, potentially leaving people more vulnerable to future infections for years into the future. #COVID19 #LongCOVID www.sciencedirect.com/science/arti...

My lesson for the day: don't do stupid things! Yesterday I helped, or at least tried to help, the delivery guy carry my old queen sized mattress out to the fondly named "rec room" until I find a charity that wants it. I obviously distressed my back doing it. 😭 I SHOULD have known better!