The cost of Nevra's monthly medical treatment has increased due to needing more IV infusions. We need to raise additional funds. Every donation, no matter the size, helps tremendously. Thank you so much for your support. Gofundme.com/f/save-nevra Paypal.me/SaveLizNevra #pwME #severeme

Damaging new guidance from the EHRC will shut out Trans people from daily life simply for existing, and anyone who doesn't conform to narrow ideas of how people should look could face suspicion and confrontation. We are taking a stand against this attack on human rights.

The government’s transphobic code of practice is now up and running. But we’re not going to stand still and take it, we're supporting a legal challenge led by a trans person and a trans inclusive organisation. But we can only do this together. Will you join us?👇 goodlaw.social/ldco

Very severe #MECFS can cause profound suffering, extreme disability and life-threatening symptoms. Many are completely dependent on care, yet still face misunderstanding and inappropriate management. #SevereMEAwarenessWeek

From my ME/CFS photo project glass.photo/andrewgiffor... ALT: colour photo of a male Hermanns tortoise, recuperating under a UV lamp, on a blue towel, eyes closed in spite of a neat row of food offerings - flowers, tomato, strawberry and leaves #MECFS #LongCovid #pwME #ChronicIllness #Photography

Andrew Gifford on Glass Photography Community

Andrew Gifford on Glass

glass.photo

the typical UK disdain for #pwME.

@wamesmecfs.bsky.social · 11h ago

The Health Minister has answered Darren Millar MS’s question on how Wales will support biomedical ME research. In short: no dedicated funding, no strategy, and no targeted support — only general UK/Wales research schemes that ME researchers may apply to. tinyurl.com/3hpvh4u8

Happy segregation day everyone. I have no doubt this government (and Starmer) will eventually be remembered for their awful human rights abuses. Take care if you’re out and about today - there will be GCs around actively looking to ruin our day. Hopefully they’ll end up targeting each other! 🤞

A study shows male mice recovering from severe COVID-19 can pass anxiety-like traits to their offspring. The virus alters RNA molecules inside their sperm, suggesting a father's infection before conception could change how the next generation develops mentally. Source: archive.md/U7dad

I’ll be reading my essay on living with severe ME. Please join us. 🩵🩵🩵🩵🩵🩵

#MEAction Network@meactnet.bsky.social · yesterday

Join the #UnitedForME collaborative (Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 1 pm ET. Register: https://ow.ly/eV4u50ZwhXA #SevereME

Petition 🏴󠁧󠁢󠁳󠁣󠁴󠁿 PE2233: Moratorium on planning applications for all hyperscale data centres until their environmental impacts have been fully assessed www.parliament.scot/get-involved...

Join the #UnitedForME collaborative (Bateman Horne Center, #MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 1 pm ET. Register: https://ow.ly/eV4u50ZwhXA #SevereME

So apparently it is wrong to express relief when one of your high profile abusers can no longer abuse you. Simon showing his privilege.

“ME is a very dangerous & debilitating condition.” Karen Gordon’s mum, explains why travelling 100 miles for an assessment could cause a serious relapse. Karen needs tube feeding & would be better off at home but is effectively trapped in hospital. #MECFS #SevereMEAwarenessWeek

I’m very much on the “don’t speak ill of the dead” side of civility but that doesn’t mean distorting what someone did with their life, particularly if they used their position to hurt others. Liddle was not a brilliant provocateur. He used misinformation to whip up hate against bedbound people.

As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...

Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances Ryan

Whether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan

theguardian.com

Introducing the NextGen Covid Vax Tracker! vaxtracker.wordpress.com/2026/07/29/i... A monthly update on vaccine progress, featured vaccines, analyses, plus lots of background info. #Vaccines #Covid #Covid19

“If we were really becoming an immune compromised society there would be signs.”

Craig Pittman @craigtimes.bsky.social · 2w ago

Leprosy is still spreading in #Florida, to the point that the CDC says it's becoming endemic. These 2 women want that to change. www.theledger.com/story/news/h...

Progress happens when people work together. Honored to be part of the new International Society of Long COVID & Post-Acute Infection Syndromes (islc-pais.com). Together, we're advancing understanding, treatment, and prevention of post-infectious diseases through rigorous science. #LongCOVID #PAIS

Andrew Ewing@andrewewing11.bsky.social · 6d ago

The official website of The International Society of Long COVID & Post-Acute Infection Syndromes — a global coalition of clinicians, researchers and advocates advancing evidence-based care. islc-pais.com

Love to have a rando on here basically demanding to see my medical bloodwork results because they can’t believe that long covid is real. This is a proported leftist. There really is a problem and right wing people arent the only ones who are in denial. Have those conversations with people.

Apparently it’s #SevereMEWeek Rather than producing loads of content showing how ill we are, yet again, maybe this year the ME orgs could call out those responsible for our continued dismissal, gaslighting, and abuse. By name preferably. Maybe we could all do the same?

It’s Severe ME Awareness Week. Here are some highlights from the explainer video on severe and very severe #MECFS I made in 2021. Experts discuss the lack of medical care, swallowing difficulties and tube feeding often being delayed until it becomes life threatening.

Wood edge and hedge offer me constant treasure. My garnering bag sings for me to walk them, my kerping knife begs to be unclasped in their presence. While witchcraft is often witch graft, when I am beside them, witchcraft is also an act of joy. – #EmilyCBanting, 1982 #WitchSky

5 myths about mast cell activation syndrome (MCAS) 1. Symptoms ❌ You must have "classic" allergy symptoms like anaphylaxis, hives, swelling ✅ As mast cells live everywhere & as they contain 100s of mediators with a range of bioactivities, symptoms can be almost anything, e.g.:

Listen: there are already people who have been organizing in this space for years—people who are connecting the dots between those in office and climate change and the ongoing pandemic and genocide in Gaza and your denial who have been holding a mask out to you, waiting. Are you ready to put it on?

babs ✨@itsbabs.bsky.social · last yr.

get familiar with your local mask bloc now—you’ll be glad you did. “Since…the larger network of mask blocs—developed our own DIY logistics…we can expand&contract…quickly…This is all possible because we aren’t selling…&don’t have to make sure that every mask makes a profit. We just buy&give away…”

Anyone casting doubt on the effectiveness of filtration on the reduction of respiratory diseases ought to have a word with pig farmers because pigs get appropriately sized air filters in crowded spaces porkgateway.org/resource/pri...

Principles of Air Filtration for Swine Facilities - Pork Information Gateway

Air filtration is a commonly used biosecurity practice to minimize the spread of airborne diseases. Common airborne diseases include Porcine Reproductive and Respiratory Syndrome Virus (PRRSV), Mycopl...

porkgateway.org

My books will be on my shelves where they belong. A few friends used to laugh at me for keeping what they called obsolete things like vinyl records and old books. They all agree it was a good idea now.

So funny how lock downs was the worst thing ever, infringed on people's human rights, made people "go mad" etc, but then when someone is disabled and can't leave their home they're lazy scroungers who should go to work, like we chose this.

I bet you any money right someone from the Science Media Centre, Weasely, Sharpe or Garner are on the phone to News Agents right now offering their eminent perspective. They're the reason we are ignored. We have no money, no powe, no influence that compares to their ability to twist the story

I hope it can shine some light on how serious this illness is, what we have to go through because of the lack of care, and the risks we need to take in order to survive. You can read the full text and view all the images by visiting the blog on my website. 5/5 nikosuvisto.com/this-is-how-...

Niko Suvisto - This Is How I Ended Up Where I Am Today

In June 2022, my illness, myalgic encephalomyelitis, progressed from moderate to very severe overnight. That meant I became bedbound and unable to care for myself. At the beginning of July 2022, I was...

nikosuvisto.com

Clean indoor air is helpful against disease all the time, not just episodicly "in a pandemic". We treat drinking water *all the time*, not just during cholera outbreaks. Until we get over this medical/reactive mindset, airborne pandemics will continue. Put engineers in charge of public health!

Prof Christina Pagel@chrischirp.bsky.social · 5d ago

2. Clean indoor air: helpful in a pandemic and good for health and learning at all times (and not just in schools but other buildings too) 3. Effective public health measures: testing, contact tracing, support for isolation, communication, etc 10/12