Ness

The curse of Myalgic Encephalomyelitis is that you can't rest.

There is no recuperation, only the passage of time.

Not just disability: A heaviness to the infirmity.

The needed pause isn't an invigorating rest:

It's a state of constant, leaden unrest.

#LongCOVID Day 1121

They're such loveable numpties! 😻

Blurry photo of a half-crouched, half-loafed grey & white cow kitty inside a towel-lined cat trap that is open at both ends. There's a blanket & tub on top of the trap. It's outdoors, the photo is taken through a gate, and there's a bright blue seedling tray in the foreground.

This photo represents one of the proudest moments of my entire life. He was so trap-shy!

Contrasting with our tuxedo TNR guy who I had to lock up on trapping nights because he was so trap-happy 😆 (Anything for an extra feed haha)

Katharine Cheston: exploring stigma, shame and illness - Chronic Living Therapy Interview with Katharine Cheston, social/cultural researcher into the stigma and shame experienced by people with ME MECFS and similar illnesses

Think you might enjoy this excellent interview and what Katharine Cheston has done (is doing) with her returned health...

chroniclivingtherapy.com/katharine-ch...

#NEISvoid

Really important illustration of why defining PEM as just any worsening after exertion will result in a seriously confounded sample of people with and without ME, making it look like some people with PEM benefit from exercise.

I'm so sorry for your loss. It's the saddest thing when it feels like someone goes too soon.

Thank you for sharing him with us! And for letting us know that he has passed 😢💔

Hearing you, arghhh.

Last summer I lived under a doona; today I was still trying to cool down in air con at 11pm. Wt?🤷

Either way, summer is brutal 😪

Bodleian Libraries, Oxford University
@bodleian.ox.ac.uk

Gorgeous! ❤️

to critically examine evidence, and to have the humility to say so when we just don't know all the answers?

9/9

It has done untold harm - leading to misdiagnosis, inappropriate management and damaging treatments for generations of sufferers around the world.

Speculation has its place but surely it's time to be A LOT more cautious in attributing suffering of groups of people to mass sociogenic illness,...

8/

any patients or treating doctors 😲

That 1970 paper is widely recognised as being a major catalyst for many doctors/medical professionals believing ME is a psychosomatic illness (or even believing that it doesn't exist!) - attitudes that persist even today.

7/

The second statement was by McEvedy & Beard in 1970 when they retrospectively rewrote the history of the Royal Free Hospital #MECFS outbreak, by attributing it to epidemic hysteria. In doing so they also went against the weight of evidence, and made that call without examining or interviewing...

6/

I'm not a psychiatrist and can only trust that this is true…but is anyone else astounded that this dialogue doesn't seem to have moved on in more than 50 years?

Even more so when both statements - from 2025 & 1970 - were made against the weight of evidence about the causes of the two outbreaks?

5/

hysterical disability often have disordered personalities, the hysterical reaction is part of everyone's potential and can be elicited in any individual by the right set of circumstances.”

4/

Many people will feel that the diagnosis of hysteria is distasteful. This ought not to prevent its discussion, but perhaps makes it worthwhile to point out that the diagnosis of hysteria in its epidemic form is not a slur on either the individuals or the institution involved. Whereas it is true that sporadic cases of hysterical disability often have disordered personalities, the hysterical reaction is part of everyone's potential and can be elicited in any individual by the right set of circumstances. Source: McEvedy CP, Beard AW (1970) Royal Free Epidemic of 1955: A Reconsideration, The British Medical Journal, Vol 1: No. 5687: 7-11

victims,' he said.”

Now, compare that statement from last week - which turned out to be wildly inaccurate - to this one from 1970:

“…the diagnosis of hysteria in its epidemic form is not a slur on either the individuals or the institution involved. Whereas it is true that sporadic cases of...
3/

psychiatrist Professor Sir Simon Wessely.

“Bartholomew stressed the illness was not a mental disorder and victims were not psychologically disturbed.

“’It is best described as a collective stress reaction that is based on a belief. We all have beliefs, therefore we are all potential...

2/

Dr Robert Bartholomew, a University of Auckland sociologist, spoke to The Guardian:

“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based”, a position which was (admittedly more cautiously) backed by...

#MECFS @davidtull.bsky.social
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On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

Group photo of Melbourne West Papuan community members

Members of the Melbourne West Papuan community at the PNG Independence Day market last weekend--so good to see the community included in the regional dance performance.

I'm hearing you... I'm sorry it's so shite 😪

We've also had this issue in Australia where sensitive journalists have referred to ME/CFS, but the headline says Chronic Fatigue because of 'editorial policy', which is out of the individual journalist's control 🙄

Congrats ❤️

🚨 Are you in Melbourne, Victoria or even another state & able to help someone in desperate need?

Please see Anna’s post & article below!

You wouldn’t just be an angel, you’d get lots back too… a new loyal friend & housemate, rent, income for some caring.

#Melbourne #SOS #MECFS #Homeshare #Carers

Spoonfull Crash Companion™ - Communication Tool for ME & Long Covid A simple, accessible communication tool for people with ME & Long Covid to signal their needs to caregivers during crash states.

Good question. I just did the survey and it linked here:
spoonfull.app

NATIONWIDE MARCH FOR PALESTINE NEWCASTLE 1PM, BIRDWOOD PARK CENTRAL COAST 11AM, THE ENTRANCE WATERFRONT KATOOMBA 2PM, ECHO PT LOOKOUT PORT MAC 12PM, TOWN BEACH AMPHITHEATRE TATHRA 11AM TATHRA BEACH COUNTRY CLUB OVAL BATHURST 11AM, ALAN MORSE PARK PERTH 12PM FORREST PLACE DARWIN 5:30PM, NIGHTCLIFF BEACH PINE GAP 10AM, PINE GAP SPY BASE ADELAIDE 2PM, VICTORIA SQUARE GEELONG 11AM, CORIO BAY ROWING CLUB HOBART 11AM, TBA GERALDTON 12PM, STOWE GARDENS STAGE SUN 24 AUG SYDNEY 1PM, HYDE PARK BRISBANE 1PM RAYMOND PARK TOWNSVILLE 9AM, THE STRAND CAIRNS 10AM, ESPLANADE MELBOURNE 12PM STATE LIBRARY WARRNAMBOOL 12PM, CIVIC GREEN CANBERRA 12PM, CIVIC SQUARE COFFS HARBOUR 1PM, THE JETTY

Hey Australians. Get out to the rally nearest you today. We must show that there are far more Aussies who care about families having dozens of members murdered by a rogue state, who care about hundreds of thousands of dead, catastrophically injured, orphaned, starved *children*. #auspol

What do these diseases have in common?

Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea

I'm so sorry, it shouldn't be this hard to just survive 😢🫂

This is now two reports in two weeks that ought to spell the end of the ridiculous welfare compliance system.

Hundreds of thousands of people are losing access to vital payments that they need to put food on the table - but Labor doesn’t seem to care.
www.news.com.au/national/pol...

Holy crap. Not only are they going to "curate" out the parts they don't like, they want to actually get rid of the material permanently.