Everyone with #MECFS & #LongCovid deserves £compensation for harm, neglect, abandonment, and blocked research and treatments. Instead of healthcare we have gaslighting. It's a scandal. I would write more but waking up in pain and discomfort and a broken brain, every fecking day, dulls my eloquence.

TeasetMonster@teasetmonster.bsky.social · 4d ago

Today is Severe ME Awareness Day, so if you have 27 minutes to spare (even to just put it on in the background) and don't know much about ME/CFS, you can be really cool and watch/listen to this video! www.youtube.com/watch?v=RiwX... { #MECFS }

Wondering what doses of LDN people find helpful for M.E? I'm on 5.5mg. Wondering if I should try increasing & maybe taking some in the morning too. It's the school holidays, 1 day out has broken me, feel utter despair at how abandoned we are with this illness. I'm needed & I'm pinned to my bed.

It’s the evening of #SevereMEDay and I am absolutely exhausted. Hopefully I’ve spread some awareness today. Have had some happy tears as some first donations have come in. There is still kindness in the world 💙🥲 #SevereME #MECFS #pwme #NEISvoid #ChronicIllness #ChronicPain gofund.me/097f8b8bc

Donate to Bedridden and in agony, help Emma access treatment, organized by Emma Jane

Hi, I’m Emma. I’m housebound and mostly bedridden with ME/CFS, Fibromyalg… Emma Jane needs your support for Bedridden and in agony, help Emma access treatment

gofund.me

Today is #SevereMEDay. worldmealliance.org/what-is-me/s... „ #MECFS broke my body, the indifference of the world broke my heart.“ (Christina Baltais)

We have been maligned, abandoned, harmed and demonised for far too long. We deserve the care and research other serious conditions get. We deserve the hope of days not blighted by this illness. #SevereMEDay

Every day with the severe form this illness is like living a nightmare. Sometimes it's bearable, sometimes it's horrendous. But it's never ok. The UK government must fully fund SequenceME, commit to a wider biomedical MECFS research program and cease funding psychobehavioural MECFS research.

Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way.

I’m not able to think or write much this Severe ME Awareness Day so here’s an old poem of mine that can do the talking for me. Sending so much love to all those tethered by severe ME. 💙 #ME/CFS #mecfs #Chronicillness #chronicpain #poetry #creativewriting #expressivewriting @meactnet.bsky.social

The Severe ME Inquiry finds that among #ME patients, the more ill you become, the less care you receive. #SevereMEDay #ME 25megroup.org/wp-content/u...

Today @thesicktimes.org: In recognition of Severe ME Awareness Day, we republished excerpts from the new book What Is ME Like? focusing on Severe ME. Many thanks to the WIMEL team for allowing us to share their powerful work 🙏🏻 thesicktimes.org/2026/08/08/t...

“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ - The Sick Times

Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.

thesicktimes.org

Danke an die Organisation der @liegenddemo.bsky.social in Hamburg. War gut zu sehen, dass man nicht alleine ist und die Psychosomatik-Kritik bei #LongCOVID und #MECFS mittlerweile auch in Politik, Verbänden und Teilen der Medizin angekommen ist. Immer weiter voran!

In the park so had to do another #BigButterflyCount 🦋 @bcwarwickshire.bsky.social @savebutterflies.bsky.social

Today is Severe ME Awareness Day. Every day since the 8th of June 2022 has been a severe ME day for me, a total of 1522 days so far without any end in sight. 1/7 #SevereMEAwarenessDay #MECFS #pwME #Photography

Less cheerfully than International Cat Day, it’s also #SevereMEDay. I have severe ME. I’m typing this between sleeps, having used my daily energy seeing my parents for an hour this morning, lying on the bed in our sitting room five metres from my bedroom. I will be alone the rest of today. 1/

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2y ago

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

8/8 #SevereME Day. Here are some of my triggers 💙 Being around too many people 💙 Leaving my house for more than two hours 💙 Hospital appts 💙 Bright lights 💙 Emotional distress ME is a genetic disease. It deserves better research and funding. @openmedf.bsky.social @meactnet.bsky.social

Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME. Read today: www.actionforme.org.uk/the-more-ill... #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME

One Day I would like anyone who judges or dismisses those who live with #ME to live with it for just one day, not realising that, for them, it’s just 24hrs and not the lifetime that most of us look forward to.Would their hearts break?Would they care? Would they act to change things? 💔

The Compassion Gap In this video I explore the gap in compassion between ME/CFS deaths and suffering and the death and suffering of other people whom the world rallies around, fights for, and supports. And what the root cause might be. ————————————— #MECFS #SevereMECFSawarenessDay #pwME #spoonie

Today, on #SevereMEAwarenessDay, we're sharing the introduction and two excerpts from the new book, “What Is Myalgic Encephalomyelitis Like?” These excepted essays were written by Madelleine Muller. thesicktimes.org/2026/08/08/t...

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

The Severe ME Inquiry: "Evidence described people with severe and very severe #ME becoming unable to chew, swallow, digest or tolerate food, yet struggling to get timely specialist dietary support or enteral (tube) feeding." #SevereMEDay #EndMalnutritionInME 25megroup.org/wp-content/u...

An image on severe ME to mark severe ME day #SevereME #SevereMEDay #SevereMECFS #SevereCFS #VerySevereME

The outside of the old school at Fourwinds, Merrivale, this week. #Dartmoor, #Devon. #photography Just before I took this I heard a weird unearthly sound like a frog croaking in the nearby bog, turned out to be a lamb that ran around the corner, I thought I’d discovered a new type of moorland toad.

My 20th year with #SevereME, no wisdom just surviving, a few days ago I sold one mug for OMF, first one this year,a weirdly fitting metaphor of how little I can do but still stubbornly holding on

Content warning Today is #SevereMEDay the birthday of Sophia Mirza. Sophia was wrongfully sectioned for refusing to attend a clinic that treated patients with Graded Exercise Therapy. The mistreatment during her stay resulted in a dramatic deterioration and she later died.

One of my most used 'accessibility aids' isn't designed for disability at all - it's a simple across body bag for a smart phone. For me it is incredibly helpful because I can carry my phone with me all the time without needing to use my hands. www.stickmancommunications.co.uk/post/accessi...

Accessibility aids: Mobile phone bag

7 ways a mobile phone bag can be a useful aid for a wheelchair user.

stickmancommunications.co.uk

#SevereMEDay Many are far too ill to post or look at posts, some friends have died, some of us use scarce energy to try to bring recognition to the millions of us missing from life. #ME can happen to anyone. We need URGENT action now to educate, care and fund research.

Curse of private equity. Raleigh bike brand faces chop, Dutch owner enters insolvency. Accell bought Raleigh in 2012. Bought by private equity KKR in 2022 for $1.8bn, loaded it with debt Cut staffing/investment. Product recalls increased. Creditors suffered write-offs in 2025.

Raleigh bike brand faces chop after owner begins insolvency proceedings

Fate of historic bicycle name in hands of administrators after Netherlands-based Accell Group fails to find buyer

theguardian.com

🚨At least six senior NHS leaders have financial or professional links to Palantir. One sat on Palantir's advisory board while a director of two NHS trusts. Another advised it while chairing 4 trusts. The government must scrap Palantir's contract - trigger the break clause!

Our enews has just gone out - if you aren't signed up for the enews and want to read it, you can find ithere: www.stickmancommunications.co.uk/so/bcP-SuM4b... It contains important updates on overseas shipping - leading to a project to make all our cards available as downloads. So do take a look!

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