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@fragmented.me.uk

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#canyouseemenow #myalgicencephalomyelitis #fibromyalgia #migraine #chronicmigraine #chronicpain #millionsmissing #mitochondriaNOThypochondria

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by @fragmented.me.uk

5

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a year ago

@philosophybreak “We seldom think of what we have but always of what we lack. Therefore, rather than grateful, we are bitter.” — Arthur Schopenhauer (Posthumous Papers, ed. 1896)

If you value insights from humanity’s greatest minds, you might like my short Sunday breakdown. I distill one famous philosophical idea; you get the summary straight to your inbox. Consider joining 18,000+ thinkers enjoying a nugget of profundity every Sunday by signing up for free via the link in my bio (one-click sign up, no spam, unsubscribe any time) 👉 @philosophybreak 💭

#philosophy #confucius #schopenhauer by @fragmented.me.uk

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2 years ago

@bateman_horne_center “Rarely UNDERSTOOD: What is ME/CFS?”

February is Rare Disease Month, and though not rare, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is one of the most rarely understood conditions.

New data suggests that ME/CFS affects 1 in 22 people, yet it remains under-researched and often misdiagnosed. Patients face stigma, delayed diagnoses, and medical gas lighting.

ME/CFS is far more than just “feeling tired”—it is a debilitating, multisystem illness that severely impairs daily life and an individual’s ability to function.

Let’s raise awareness this Rare Disease Month to support those living with Rarely Understood conditions, like ME/CFS and other Infection-Associated Chronic Conditions!

#MEAwareness #RareDiseaseMonth #UnseenAndUnheard by @fragmented.me.uk

11

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2 years ago

• @millionsmissingvoice #MyalgicE #MEcfs #pwME #SevereME #MillionsMissing #CanYouSeeMEnow #EndMEcfs
#MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis
#AvoidableDeaths
#EnoughIsEnough
#AccountabilityMatters
#TogetherWeRise
#LongCovid #postviralillness.
#invisibleillnessawareness
#fibromyalgiaawareness #chronicPain
#invisibleillnessawareness
#SpoonieHumor by @fragmented.me.uk

17

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2 years ago

• @sharonsalzberg We can partner with our bodies in a kinder way. by @fragmented.me.uk

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2 years ago

RePosted • @sharonsalzberg That’s life: starting over, one breath at a time. by @fragmented.me.uk

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2 years ago

@thisthingtheycallrecovery Another chronic illness poem for ya! It’s up on the blog too incase you’d rather share a written version ☺️ VD: Jenny is a slim white woman with short dark hair talking to camera

Transcript:

Who am I?

Someone asks about me,
We’re new to each other.
How do I tell them?
What do I utter?

An introduction is needed,
It’s tricky, this part.
How to explain?
I guess we’ll just start.

They ask what I do,
What can I say?
My time is spent resting,
I don’t work all day.

‘That must be nice!’
They sit and exclaim.
They don’t understand,
Not entirely to blame.

Their days off are nice,
They wish they had more.
Don’t know what it’s like,
To lie and stare at the door.

‘What about for fun?’
Another complex question.
How do I answer,
Without adding tension?

My hobbies are lost,
Can’t meet with friends.
I sit in isolation,
And hope that that ends.

I’m still a whole person,
Just hard to outline.
Did I make it awkward,
Cause I’m not all sunshine?

Are my answers too big?
Seen as oversharing.
I don’t have those little things,
To which you’re comparing.

Too honest and raw,
Vague and non-committal.
Those are my choices,
When my life it is little.

I’m still deciding,
What do I share?
And then you’re away,
See you, take care.

#ChronicIllness #ChronicPain #ChronicFatigue #MECFS #MentalHealth #Poem by @fragmented.me.uk

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2 years ago

THIS HAS TO STOP!
@carolebruce44 NHS West Middlesex University Hospital has just placed very severe myalgic encephalomyelitis (#ME/CFS) patient Carla Naoum under a Section 2 of the Mental Health Act order. (Sectioned)

Inpatient care for people with severe #ME just isn’t working, no specialist units or specific guidelines so psychiatrists become involved and the condition becomes life threatening.
.
#myalgicencephalomyelitis #me #mecfs #mcas #potssyndrome #hospital #psychiatrist #lifetgreatening #sectioned #mentalhealth #travesty by @fragmented.me.uk

15

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2 years ago

@meactnetuk
Sean O'Neill writes movingly in The Times about the failure of medicine to treat ME/CFS and also reveals the inbuilt cruelty of the UK's inquest system

'When Sean O’Neill’s daughter Maeve died at 27, he faced years of waiting for an inquest and then the ordeal of reliving her decline due to poor treatment of her severe ME, to find out why the system failed her.

In the early hours of October 3, 2021, my eldest daughter, Maeve Boothby O’Neill, died, aged 27, at the home she shared with her mother in Exeter.

Maeve had suffered since her teens with the poorly understood disease myalgic encephalomyelitis (ME). The illness, which developed after a viral infection, stopped her going to university and piece by piece stole away her hopes, ambitions and independence. In her twenties she became housebound and was for long periods bedbound. In the last seven months of her life she became so unwell she could not chew or digest food.

She was admitted three times to the Royal Devon and Exeter Hospital; she hoped for artificial feeding to keep her alive. She knew such support was offered to some ME patients in the UK and around the world. But there were no NHS pathways and little knowledge about how to treat someone with an illness that many in medicine seem to believe is a physical manifestation of a psychological disorder.
In August, feeling the hospital could not help her, Maeve elected to come home and spend her remaining time with those who loved her.

After her death, her GP referred the case to the Devon coroner. He wrote, “There is no guidance about the management of severe ME. Several doctors involved in her care stated they do not believe ME is a medical problem. I do not feel I can put myalgic encephalomyelitis on her death certificate without raising this case for your personal attention.”'

https://ow.ly/u9bz50TPg8g

#MyalgicEncephalomyelitis #VerySevereME

Image: Left hand photograph of Sean O'Neill, a white man wearing glasses and a white shirt with a young Maeve Boothby O'Neill a white girl with long hair and wearing a red top. Right hand photograph is of Sean O'Neill sitting down wearing a grey t-shirt with The Clash and a dragon on. by @fragmented.me.uk

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2 years ago

@abrokenbattery Excellent new article by George Monbiot

“Scientists and those who champion them should never close ranks against empirical challenge and criticism. They should not deny requests for data, should not shore up disproven claims, should not circle the wagons against legitimate public challenge. Above all, those who suffer the most should be listened to the most.” by @fragmented.me.uk

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2 years ago

@actionform.e Our CEO, Sonya Chowdhury, was interviewed on BBC Radio 4 The World Tonight yesterday.

Sonya spoke about the Prevention of Future Deaths report, the need for funding for research into ME and the lack of specialist care for people with ME.

You can listen to Sonya’s interview, which starts at 26:00, through the link in our bio.

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #LivingWithME by @fragmented.me.uk

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2 years ago

@meassociation **TW: Upsetting Content**

The Times: Coroner demands urgent action to prevent further deaths from ME

Deborah Archer, who conducted Boothby O’Neill’s inquest, issued a prevention of future deaths report on Monday, the first of its kind involving the poorly understood condition of myalgic encephalomyelitis.

Please see the link in stories for 24hr or via Instagram Threads. Alternatively, click the link in the bio >Latest News

#MECFS #pwME by @fragmented.me.uk

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2 years ago