Elke Hausmann

‚But Dr Margaret O'Hara, trustee of Long Covid Support, said: "Referrals have declined because Covid has been de-prioritised and very few people still test.
"It's difficult for a GP to diagnose long Covid if the patient doesn't know if they had Covid.
" #LongCovid has not gone away."‘

Ganz toll! Eine gute Reise 😃

It's International Day of Persons with Disabilities.

To mark this we are looking at ways to help those house-bound or bed-bound with Long Covid or chronic illness with vital screening & testing. 🇬🇧 /1
🧵👇

A teal graphic with white text that reads: “Living with Long Covid forced us to raise our voices to be heard. With your support, we can continue campaigning for the recognition and the rights that people with Long Covid deserve.” Behind the text is a faint circular Long Covid SOS lifering logo in red and green. The Long Covid SOS logo appears at the bottom with the tagline “campaigning for us all.”

"We can no longer do this alone. The crisis is hiding in plain sight and we need help to act." - Dr. Lucy Moore, Chair of Long Covid SOS

We need urgent support to continue the fight for research, better treatments & recognition for people with #LongCovid

tinyurl.com/DonateLCSOS

1/Neulich mitten im Prenzlauer Berg: eine Person mit ganz offenkundigen Beeinträchtigungen benimmt sich nicht eben rücksichtsvoll, die Person ist erheblich gestresst. Er rempelt mich unabsichtlich etwas heftig an, ich reagiere gar nicht. Ein junger Mann neben mir wird sofort

Danke.

#ME

Thank you for continuing to post all those articles. Together they demonstrate just how ridiculous it is that decades later, we are still having the same ‚debates‘ - of course they are no such thing, it is people who know (live!) what they are talking about, versus those who don’t.

#LongCovid
#ME

The Evening Telegraph, Derby, England. 3rd December 1994. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

Before the accident, I was a very fit and healthy 36-year-old man, in gainful employment as a university lecturer. I owned my own home, drove my own car and was happily cruising along in a world that made life easy for me. I did not yet know what it meant to be driven mad by the Department for Work and Pensions' hold music for an hour, before the government computer hangs up because the phone lines are too busy. (I was calling in response to a threatening letter that said if I didn't talk to them, I could expect my application for disability benefit, the personal independence payment, to be dismissed.) I did not yet know what it meant to try to organise wheelchair ambulances through G4S (yes, the security firm - don't ask, because I don't know). I did not yet know that local wheelchair services are a lottery, in which some of the most vulnerable people in society roll the dice. A lottery in which the taxpayer acts as permanent lender of last resort - while private companies profit.

Clear-headed analysis by a new wheelchair user of the sad (infuriating!) state of privatised ‚NHS‘ wheelchair services

www.theguardian.com/world/2025/d...

Instead, we will continue to be treated to the whining of a tiny group of affluent homeowners scandalised at the idea of paying a £2,500 tax, and the battalions of property experts and lobbyists happy to sing backing vocals for them. Never mind that this is a tax they are likely to be able to defer paying until selling their house, a tax that, though a step in the right direction, hardly touches the sides of wealth disparities in the UK, that is to genuine wealth inequality what your dinky Etsy face mask was to the global spread of Covid-19. This is not so much a failure of circumstance as a triumph of structure. The system working as it was intended to work. Who gets to complain about housing policy in this country? Depends where you live, and how much your house is worth.

2/2

#inequality

1/2

#LongCovid

At the end of the clip, the presenter references Germany where #LongCovid is seen as a big societal problem and where money is being provided for research.

This should be a clarion call for other countries to do the same!

Das ist mehr als ein Ego-Problem. An dem Artikel finde ich eigentlich am bezeichnendsten, wie am Ende bewundernd zitiert wird, was für eine tolle Arbeitsmoral der Mann hat. Das wird von unserer Gesellschaft gefeiert … Er selber erfährt gerade am eigenen Leib, was für Konsequenzen das haben kann…

It’s really hard to know what’s what, especially when you keep being told that your illness is (at least partly) psychological. I’m sure lack of motivation can be a problem for people with LC and ME, like for anyone, and likely the risk is higher because of all the stuff we have to content with.

I was expending way too much energy agonising about any little decision. And when l'd come down on the side of doing it, because of the delayed nature of PEM I (still) tend to think: ,yeah, this time I got away with it!' - and then bang, PEM. After months and years of this now, I'm starting to find it a bit easier to just say ‚I can't. I wouldn't describe that as ,apathy, even if people looking from the outside might describe it that way when they see me doing so little. It's not ‚lack of motivation' either. It certainly isn't ,depression'. Give me a healthy body and l'd be out there doing stuff before you know it. Rather, is that what they mean by ‚acceptance'?

2/2

Thanks for that. Made me reflect.

1/2

#LongCovid
#ME

#LongCovid
#ME

🧵Wessely and the Camelford water poisoning. by @ABrokenBattery(Adam) | Twitter Thread Reader 🧵Wessely and the Camelford water poisoning. In 1988, thousands in Camelford were poisoned when 20 tonnes of aluminum sulphate was dumped direct into the water supply. Many suffered serious and lasting...

Following the BBC documentary Poisoned Water, I’ve put together a quick thread about the Camelford water poisoning and Simon Wessely. The thread is on a summary website for anyone who isn’t on Twitter and includes clips and references.

twitter-thread.com/t/1994370580...

In summary, the available evidence, and the considered judgement contained in the final Clayton report give no support to material damage to health as a direct consequence of the sudden, temporary increase in aluminium consumption caused by the water purification error. So why then did some people suffer and complain for years after the event? We suggest that the most likely explanation of the Camelford findings is that the perception of normal and benign somatic symptoms (physical or mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause, such as poisoning [29].

Compare and contrast:

www.simonwessely.com/Downloads/Pu...

No hazard to health Symptons mild and short lived Anxiety causing problems Fears of Alzheimer's disease unjustified

Harrowing viewing #PoisonWater

Aluminium, not ‚anxiety‘.

‚(…) don’t allow your emotions to show to other people who may use them against you. I had to be the man giving straight scientific evidence, no speculation, nothing, just report on what I knew to be correct‘.

www.bbc.co.uk/iplayer/epis...

Thank you for that.

This is a stark example of how ‚it‘s psychological‘ only ever helps the powerful to sweep inconvenient truths under the carpet.

Welcome to my body After twenty years of pain and repeated medical dead ends, a stranger sent me a message on Instagram. It led to a diagnosis all the doctors…

Last month, I found out I have hypermobile Ehlers Danlos Syndrome, after decades of chronic pain and medical disinterest.

I've decided to write publicly about this, not just about hypermobility and its health impacts, but about how it feels when doctors don't care:

medium.com/p/4fea6398b8ba

🧵1️⃣ It’s UK Budget Day - so here’s a budget #RachelReeves hasn’t announced: a proper Long Covid Budget. We've estimated the real economic burden of Long Covid at £12-15 BILLION A YEAR.

At a £ a minute that puts us back in 26,500 BC - the Late Upper Paleolithic 😳
#Budget2026

Please think about WHY some might compare LC to AIDS. This has echos of the ME , controversies' where ME ‚activists' are told off by ‚scientists' for being, too emotional' (about their own lives going down the drain - isn't that understandable?). If your experience is that nobody listens to you, you might end up lashing out (or make comparisons that can be criticised for being factually wrong, but to some clearly feel emotionally right - and have some justification behind them) just to get heard. Yes, facts are important. Yes, emotions shouldn't supplant facts. But please consider the context. Please pick your fights. Be an ally to people who don't have the power to affect change in the real world.

3/3

I doubt that any LC ‚activist' thinks that LC and AIDS are the same. They have some similarities in that the viruses that cause them affect the immune system, albeit in very different ways. You might say that AIDS is (was before HIV meds) a death sentence and Long Covid is not (people with LC have by definition survived the initial infection, but remember that many many people have died and still die from acute Covid infections), however bear in mind that for some patients affected by LC this can feel like a living death.

2/3

Covid is not HIV, and Long Covid is not AIDS. These are facts. But... LC patients can experience debilitating, life-changing symptoms that healthy people just cannot imagine. Many people are oblivious to that. They think that Covid won't affect them as they have survived previous Covid infections ‚unscathed' (we don't actually know that yet - virus consequences can take time to reveal themselves). In the early phase of the AIDS epidemic most people believed that only ‚other' people (men who have sex with men) would get it - nothing to do with them. It was only later that HIV infection was recognised to be serious for everyone who got it, and everyone could get it. The function of the comparison to AIDS relates to how societies react to those viral threats, to get people to understand that this is serious. Not just for us, but likely for you, too.

No, #LongCovid is not AIDS.

But…

Musings from a patient’s perspective.

1/3

🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1

#LongCovid

#LongCovid
#ME