ME & Scotland's Adult Disabilty Payment

Monitoring the Scottish Government's new Adult Disability Payment.
ME * Chronic Illness * Long-Covid
Experience led. Collective voice. Change makers.

[Carole Bruce @CaroleBruce17]

New piece from The Mirror

BBC Dragons' Den faces new backlash over 'upsetting' claims ME sufferers have 'negative mindset' - Mirror Online #ME https://t.co/dwROLLc7Yg

[Ellie Fry @iEllieFry]

The Dragons' Den scandal isn't just some casual cock-up - the dangerous claims play into a wider culture of misinformation about ME that patients and charities have been fighting for decades @DailyMirror @MEActNetUK @MEAssociation

https://t.co/o1b5tNqNDJ

[Bill Clayton @clanman3]

I've read this morning that the BBC say that the Dragons do due diligence after the programme. Can the Minister of Common Sense please explain to them that it's too late at that point as the damage will/has already been done! #ME #MEAwareness #DragonsDen

[Julie Houston @JulesAHouston]

We have some momentum building thanks to the articles by @HollieAnneB and @iEllieFry. Journalist @KerriLWatt who also has #MyalgicEncephalomyelitis is ready & willing to help our voices be heard. What a powerhouse they could be. Feeling hopeful change is in the air. #pwME #MECFS

[Dan 🦠➡️🧠🔥 @Dan_Wyke]

The Executive Board of @NHSEngland could instruct someone to remove inaccurate information from the NHS webpage on ME/CFS and replace it with accurate information based on, say, the CDC's updated guidance. It would be easy to do. I will do it for them today for free if they want.

[Carole Bruce @CaroleBruce17]

Our own @KSchnickelfritz gets a mention here in the Daily Express coverage of Dragon’s Den horror Sometimes #ME sometimes CFS https://t.co/CANE3gY6gF

[ME & Scotland's Adult Disabilty Payment @MeDisabilty]

Medicine really needs a #MeToo reckoning. #MedicalMisogny has trivialised the experience of #ME sufferers & long held back research, resulting in the continued suffering of 1000s & the ill-preparedness for #LC.
Change is desperately needed. #MyalgicEncephalomyelitis

[Dr Rachel Clarke @doctor_oxford]

Have agonised over whether @thetimes should have published yet more of retired anaesthetist Peter Hilton’s odious views. There could be no better illustration of the entrenched misogyny in certain crusty corners of the NHS. It had to be seen to be believed. Repulsive.

[Katy B @KatyBruce108]

❓❓❓
Are there any Psychologists or Psychological Academics here amongst my friends who understand that M.E #MEcfs is a complex, serious, biomedical condition & would be willing to lend their support to patients with M.E. by adding their signature to a group letter❓

[Science for ME online forum @s4me_info]

Over 2,200 signatures! Thank you so much to everybody who has signed and shared our petition calling on Cochrane to withdraw their harmful 2019 review of Exercise therapy for 'CFS'.

3,000 today? Please continue sharing and signing.

#MECFS #CochraneLondon
https://t.co/f38IHXDzP5

[Women's Rights Network - WRN @WomensRightsNet]

Potentially useful survey - but doesn’t want the views of women over 55
All that experience of reproductive health is apparently not important or needed at all- even in respect of menopause

Utterly bizarre @mariacaulfield @SteveBarclay - please address

https://t.co/NQ6ZV6Udc3

[davidtuller @davidtuller1]

interview about DecodeME with Professor Chris Ponting https://t.co/CmdA8c8R5g via @YouTube

[Dr Dan Goyal @danielgoyal]

Just to put this into perspective…

The govt spent £500m of our money on a field hospital that treated a few hundred people

They could have spent it on the NHS and we would still be treating thousands!

Govt will do anything to avoid supporting the NHS

https://t.co/Z5Q14rUSB4

[James Taylor @Jamestaylor2]

The Times again pushing a dangerous narrative on disability benefits.

This time Matthew Parris getting horribly confused about PIP (an extra costs payment NOT an out of work benefit)

https://t.co/iD4RIUyH1x

[Tom Pollard @PollardTom]

Totally irresponsible for that Matthew Parris benefits piece in the Times to be so uninformed & inaccurate:
-PIP has nothing to do with your ability to work
-It isn't more generous than its predecessor
-It isn't comparable to Jobseekers Allowance (which barely exists now anyway)

[ME & Scotland's Adult Disabilty Payment @MeDisabilty]

"PEM is the annihilation of possibility" 💙🔥👇

[Ed Yong is not here @edyong209]

Post-exertional malaise—the cardinal symptom of ME/CFS—is distinct & worse. Less a symptom than a physiological state. After gentle physical/mental activity, your batteries aren’t drained but missing entirely. PEM is the annihilation of possibility. 4/ https://t.co/oFWb6Flyh0

[Ed Yong is not here @edyong209]

When long-haulers talk about their fatigue, they often hear “Oh I’m tired too”. But theirs is utterly different to the everyday version healthy people get. More severe. Very hard to push through (& costly if you try). Not cured by sleep. Multifaceted. 3/ https://t.co/oFWb6Flyh0

[The Atlantic @TheAtlantic]

Fatigue is different from everyday tiredness, Ed Yong writes, and much of American society and the American medical establishment has trouble understanding it.⁠ https://t.co/18UH7FOmL4

🎨: María Medem

[Julie Rehmeyer @julierehmeyer]

An audio version of @edyong209’s very very powerful piece on fatigue and PEM can be downloaded for free here: https://t.co/7KXmwpYn0m

[ME & Scotland's Adult Disabilty Payment @MeDisabilty]

Have a word with @GeorgeMonbiot - https://t.co/sFHb9lrFny
he already covered this for you and concluded that it is "one of the greatest medical scandals of this century"

[George Monbiot @GeorgeMonbiot]

1. There’s an aspect of this story that I didn’t have space for in the column. This is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism.

[ME & Scotland's Adult Disabilty Payment @MeDisabilty]

@rachela_hall @guardian failing to mention Trudie Chalder was a principal investigator in the discredited DWP-part funded PACE trial.
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[ME & Scotland's Adult Disabilty Payment @MeDisabilty]

Claiming that "Services are no longer able to provide a full range of evidence-based therapeutic interventions" & that "research evidence base for (CBT & GET) therapies had “strengthened, not weakened” since the 2007 guideline" is untrue.
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