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The most dangerous feat ever known - parenting two teenagers with #SEND. Navigating the broken support system is like hurtling through the air over sharks and spiky objects. This account describes my experiences.
Over Sharks and Spiky Objects retweeted
Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder.
Clip from @hope4mefibroni Collaboration for Change 2026
Over Sharks and Spiky Objects retweeted
Is anyone going to discuss what happened to our T and B cells thanks to Covid? Will this be what makes the medical profession wake up?
This is not weird niche conspiracy theory stuff BTW.
Kent's meningitis outbreak is deeply unusual and defies easy explanation, according to our health and science correspondent.
More here: bbc.in/4smkWCr
Over Sharks and Spiky Objects retweeted
On #LongCovidAwarenessDay the Guardian thought it would post this article, decrying the massive rise in young people off work due to ill health or disability in the last decade....without mentioning covid ONCE
theguardian.com/society/2026…
Over Sharks and Spiky Objects retweeted
British Mums when they enter their teenage child’s bedroom on a weekend morning starter pack:
-*doesn’t knock, enters the room at 90mph*
-*rips open the curtains with remarkable force*
-“Are you still in that bed?”
-“And are you planning on getting up today?”
-“Come on… UP!”
-“You’ve had long enough”
-*refers to the room/bed as a pit*
-“It stinks in here” / “It’s a tip in here”
-“You’re missing the day!”
-“Breakfast is on the table and it’s getting cold” (even though it’s just cereal)
-*aggressively hoovering the landing, occasionally hitting the door*
Over Sharks and Spiky Objects retweeted
WHITE PAPER ALERT:
Specialist SEND support in every school and community gov.uk/government/news/speci…
You can find all the documents here: gov.uk/government/publicatio…
Over Sharks and Spiky Objects retweeted
On SNJ Today: Our first initial overview of the Government's proposals to change SEND— rights are given but more are taken away specialneedsjungle.com/send-… #SaveOurChildrensRights
ALT image shows screenshots from the papers
Over Sharks and Spiky Objects retweeted
Ok, so sales have been ridiculously low for the past few weeks, with social media throttling our reach and fatigue kicking my butt.
So I'm going to practice what I preach and ask for help. Can you give us a boost to help us stay afloat by: placing an order, sharing our posts, or
Over Sharks and Spiky Objects retweeted
‘The education system likes to put children in little boxes and if you don't fit in that box, you get pushed out’
In our special Woman’s Hour episode live from the BBC Radio theatre, 17-year-old Katie shared her experience of navigating the SEND system ⬇️
Well done Katie, you speak for so many of us. Thank you for putting into words exactly what is wrong with the current eduction system. I hope you find a way to learn that suits you, because you are amazing and deserve to thrive.
‘Fighting every step is so hard'
Katie, 17, is autistic and has barely been to school since she was 13.
She joined @BBCNuala to discuss her experience as a child navigating England’s Special Educational Needs and Disabilities (SEND) system, and how it has impacted her.
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‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions theguardian.com/society/arti…
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Over Sharks and Spiky Objects retweeted
We need to get #MyalgicEncephalomyelitis patients out of "chronic fatigue" services and into the hands of ME specialists who have multidisciplinary expertise that's capable of properly responding to a multi-system disease.
Over Sharks and Spiky Objects retweeted
All-Party Parliamentary Group on ME @CMonaghanSNP
Carol Monaghan, who was MP for Glasgow West and Chair of the APPG on ME, has lost her seat in the general election.
This means that we will now have to find another MP who is willing to take on this role and re-establish the APPG on ME.
With @actionforme and the @MEAssociation forming the APPG Secretariat, I will be discussing the way forward with AfME next week.
I would like to express my thanks to Carol for the extremely effective way in which she has chaired the APPG on ME over the past five years and I am very sorry to be no longer be working with her on parliamentary matters.
bbc.co.uk/news/election/2024…
Dr Charles Shepherd (MEA Hon. Medical Adviser)
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #APPGonME
ALT IMAGE DESCRIPTION: An image of Carol Monaghan with the wording All-Party Parliamentary Group on ME - Carol Monaghan. The ME Association Logo (bottom right)
No Steve Baker, you cannot be proud of your party's education sector achievements. You put results first and children second, and their mental health has suffered for it.
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Goodness me. And in 2019, I was fighting Derbyshire County Council for proper provision for my SEND child, a fight that would go on until I beat them at tribunal in 2021.
So they were spending on tribunal fees, but not actual SEND provision.
Head-scratching bit of SEND info in a recent HoC debate on Derbyshire County Council, courtesy of @tobyperkinsmp
DCC has a SEND provision shortage visible from space. It has a hefty SEND capital grant from the DfE. But DCC has spent barely any of it hansard.parliament.uk/common…
ALT Extract from Toby Perkins MP speech on special educational needs in Derbyshire County Council: "It can now be revealed that, throughout this period of hardship, Derbyshire County Council has received around £17.5 million of capital funding from the Department for Education since 2019 for additional special school places, but has spent a paltry £1.5 million. That means £16 million, or 91% of the budget it has received, is sat in Derbyshire County Council’s coffers, while parents of special needs children lose sleep every night at the lack of provision in our county. It is nothing short of a betrayal of those parents and their children. What can the Minister do to work with colleagues in the Department for Education to get this dysfunctional authority to deliver special needs placements for Derbyshire children?"
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So, about those stupid Acu Seed ear sticker things.
Apparently they now help you cope with toddler tantrums as well as miraculously curing serious biomedical illnesses like ME.
They really do help with everything in life! They're magic! All from little stickers on your ear!
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Very good article showing just how hard it is for families with chronically ill children with the current truancy laws.
‘She wants to go to school’: parents of unwell child fear truancy prosecution theguardian.com/education/20…
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Interesting that this article implies a rise in special educational needs amongst children. I suspect what's happening is that mainstream schools are becoming less inclusive and that's what is driving the increase.
theguardian.com/education/20…
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"There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and recognition of the harms they have suffered."
Well said!! 👏👏👏👏👏
It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
theguardian.com/commentisfre…
