Lynne Blakey

mum of two

[Carole Bruce @CaroleBruce17]

This from Beth Dobbin 👇 is why #ME patients avoid A&E, ringing the Dr, doing testimonial videos to raise awareness, talking to HCPs. We often can’t talk to our families or friends, our carers or helpers. Often a case of choosing between talking or eating. This is the reality 🤐

[davidtuller @davidtuller1]

Wow, this interview I did last week with Guardian columnist and social critic George Monbiot on the hpoor treatment of people with ME/CFS now has 23,000+ views! Here it is again: https://t.co/XR33N9jEOU

[David__Osland @David__Osland]

Want a definition of neoliberalism? How about putting students £60k in debt, making the vulnerable pay £6k a month for social care, charging for televised football, making rail fares more expensive than airline tickets and selling off dozens of reservoirs, for starters.

[Jack | amatica health @JackHadfield14]

A brief history of how ME/CFS ended up stigmatised and underfunded for decades. It wasn't an accident.

In 1970, two psychiatrists reviewed the case notes from the 1955 Royal Free Hospital outbreak in London and concluded it was mass hysteria. They didn't interview a single patient, but the idea that ME was psychological became the default view in medicine from then on.

In the UK, psychiatrists Simon Wessely, Michael Sharpe and Peter White developed this into the "illness beliefs" model, where a virus might trigger the illness but deconditioning and unhelpful beliefs keep people sick. They had huge influence over funding and policy, sitting on MRC panels and advising NICE and the DWP, and Sharpe and White also advised disability insurers. Much of the UK's ME research funding went into their trials, and their diagnostic criteria only required six months of fatigue, so the trials were full of people who didn't have ME.

The largest was PACE, which cost £5M and was published in 2011 as proof that CBT and graded exercise worked. It became the basis for NHS treatment. PACE had disingenuously loosened its recovery criteria partway through the trial, but still claimed success. A patient, Alem Matthees, took them to tribunal and got the data released in 2016. Under the original criteria, recovery fell from 22% to around 7%, and there was little change on objective measures like walking distance or return to work. CBT and graded exercise didn't work. NICE didn't remove graded exercise until 2021.

In the US, the CDC dismissed the 1984 Lake Tahoe outbreak, named the illness "chronic fatigue syndrome" in 1988, and the media called it "yuppie flu." In the late 90s, auditors found that of around $23M Congress gave the CDC for CFS research, about $13M had been quietly diverted to other programs and misreported. The NIH then spent roughly $ 5-6M a year on ME/CFS for decades, some of which also went to CBT, exercise and psychological research, and a chunk to university overheads, making it one of the lowest-funded diseases relative to how many people it affects. The CDC recommended CBT and graded exercise until 2017.

Most of Europe either followed the UK model or ignored the disease entirely. Germany did both, treating it as psychosomatic while barely funding research.

Long COVID has started to change this, because millions of previously healthy people developed the same illness at the same time and it became much harder to dismiss. Germany has now committed €500M over ten years, and biomedical research is consistently finding immune, neurological and autoantibody changes in ME/CFS patients.

All psychological intervention studies failed and when we finally started looking at physiological mechanisms, we have found hundreds of alterations. The psychiatrists responsible for the history of ME have millions of deaths on their hands and are largely to blame for the modern stigmatisation of patients. Thankfully that won’t continue much longer, I expect we will finally have breakthroughs in the next years now the shift is made.

[Ben Claimant 💚 Join a Union @BenClaimant]

The Government's Find-a-job website currently has 110,505 jobs available across GB. Of those 12,361 are Disability confident jobs. Stephen Timms has regularly told disabled people they can work from home. Currently there are 36 remote jobs available that are disability confident. Of those only 9 are part-time. 20-25% of the working age population are disabled.

[Marty @martyuk26]

#GovWelfareChallenge

Before ANY politician votes on welfare policy, they should live on it. Three months. The rate that fits their circumstances. No exceptions. No expenses. No subsidised meals. No second home allowance.

This isn't a party issue. Labour. Conservative. Reform. Lib Dem. ALL of you talk about welfare. NONE of you have lived on it.

The challenge:

Three months on Universal Credit. Whichever rate applies:

Single under 25: £316.98/month
Single 25+: £400.14/month
Couple under 25: £497.55/month
Couple 25+: £628.10/month
Note: those are the APRIL 2026 rates. They DROPPED from 2025. The safety net shrank while rent, energy, and food all rose.

The rules:

No MP salary. No expenses. No Commons subsidised meals. No travel budget. No second home. Just UC and whatever the housing element covers which won't be your full rent because LHA hasn't matched market rents since 2020.

You attend the Jobcentre every two weeks. A work coach tells you to apply for 35 jobs a week. You evidence every application in a journal. You miss an appointment because the bus didn't come you get sanctioned.

You pay your bills from the UC rate:

Electric: -£150
Council tax shortfall: -£30
Water: -£15
Insurance: -£20
Internet: -£20
Phone: -£15

Remaining: £88.58/month on the single over-25 rate. £20.46/week. £2.92/day.

For food. Clothes. Transport. Toiletries. Everything.

The weekly shop:
£50 at Iceland for a family. I costed it this week. Every product linked. Every price verified.
Family of four result: one chicken dinner per week. 100g per person. Four out of seven dinners are lentils. 16 bananas between four people. No other fruit.

Single person result: marginally better. But £2.92/day is a Tesco meal deal. For the ENTIRE day. Breakfast. Lunch. Dinner.

The commute:

DWP considers 90 minutes each way "reasonable." Three hours a day. Plus 8 hours working or job searching. Eleven hours out of the house. The travel costs come from the £2.92/day. A single bus fare can be £2.50. One journey. One way. And the day's food budget is gone.

Week by week:

Week 1: the electricity bill arrives. It takes more than a third of your income. You learn what "prepayment meter" means when it cuts off at 11pm because the credit ran out.

Week 2: the fridge contains lentils, value bread, and long-life milk. You haven't eaten fresh meat in nine days. The microwave costs 3.7p per meal. The oven costs 46p. You use the microwave. Every meal.

Week 3: you stopped going out. A coffee costs £2.50. That's nearly a day's food budget. Your friends stopped asking because you always say no. The walls are very familiar now.

Week 4: the Jobcentre threatens a sanction. You missed the appointment. The bus was cancelled. The next one was in four hours. You walked. It took 90 minutes. You arrived late. "Late is a fail" says the work coach. The sanction docks your UC by 40% for a month.

Month 2: you've applied for 280 jobs. Three interviews. No offers. The Jobcentre asks why you haven't found work. You show them Indeed. 1,964 no-experience jobs for 9 million people in London. The work coach notes "insufficient effort" on your file.

Month 3: someone on X calls you "workshy."

The challenge is for:

@KemiBadenoch you said "if you can work, you should." Live on what you'd leave them with. Then say it again.

@HelenWhately eighteen posts about welfare. Zero days on it. Three months would give you the policy document you haven't published.

@griffitha you announced £47 billion in savings without a financial analyst. Three months on £2.92/day IS your financial analysis.

@JoePJRobertson you said "workshy." Three months on UC. Then use that word to my face.

@patmcfaddenmp you RUN the DWP. You administer the system. Live inside it. See what your work coaches see. Feel what your claimants feel. Then tell Parliament how it's going.

@JohnHealey_MP you set the rates. You approved the cut from 2025 to 2026. Live on the number you signed off. For three months. With the energy bill you didn't shield them from.

@EdDavey you talk about fairness. Prove it. Three months. Same rules. No Lib Dem exceptions.

This isn't about humiliation. It's about UNDERSTANDING. Every policy decision about welfare is made by people who've never experienced it.

Every cut is calculated by people who've never counted the pennies for the electric meter.

Every sanction is designed by people who've never missed a bus they couldn't afford.

Three months. Any rate. Any circumstances. Just LIVE ON IT. Then vote.

#GovWelfareChallenge

https://t.co/eL53voUhtO 35+ charters. Written by someone who knows what £2.92/day actually buys. Because he's lived closer to it than anyone in Parliament ever will.

@UKLabour @TheGreenParty @reformparty_uk @RestoreBritain @Conservatives @LibDems

[Farrukh @implausibleblog]

Andrew Neil, "The big problem we face is 6.7 million adults of working, who aren't working, and living on out of work benefits" #BBCQT

My view: Andrew Neil’s 6.7 million figure is real, but it does not mean 6.7 million people are able to work and choosing benefits.

Of those 6.7 million, 4.6 million, 68%, are not required to look for work, mainly because they are ill, disabled or caring for young children.

Of the remaining 2.2 million, many have health conditions that limit what work they can do.

Only 71,000 are on Jobseeker’s Allowance.

So using the 6.7 million total to imply Britain is full of workshy people is simply wrong.

[Sarah O'Connell @SarahOC_MECFS]

After 4 nights of little sleep, I experienced swallow problems for the 1st time in 13 years of ME.
My swallow reflex was just gone & it was terrifying.
This disease is dangerous & is killing ppl & needs funding!
A Huge thanks to George Monbiot for a great article
#pwME #LongCovid

[Sarah 🦓 @Salliepops]

If you envy someone getting a meagre sum to live on with a disability because they can't work, do you also envy their disability?

Do you envy all the difficulties that come with it? Most of which you probably can't even imagine.

Do you envy the endless Dr/Consultant/therapy appointments? Disabled people can have worse outcomes for medical care and often receive limited therapies or care.

Do you envy knowing that you would live with that debilitating condition & all it's difficulties for the rest of your life?

Do you envy the pain? For chronic pain, pain relief is considered a success if it takes away 10% of the pain, so pain is often constant & severe, there is no relief from it.

Do you envy the awful side effects from medication or treatments? Being on long term medication requires tests which can be blood tests or more invasive ones, some tests as often as every 3 months. Some medications have side effects that require further medications to manage the side effects. It's not a case of saying just don't take them, these could be life saving medications.

Or is it that you envy the small amount of money they get to survive because they're getting something you can't? Because the #media and #MPs have told you that they're worthless, a burden & don't deserve support?

#ChallengeTheNarrative #disabilityrights #PunchDownMedia #disabilitybenefits #humanrights

[Carole Bruce @CaroleBruce17]

George Monbiot’s contribution in exposing the dire malpractice towards #ME patients is unmatched. Do spread this message that he just posted and reply to him if you have relevant information. 🙏

[Rae :-) @Chuffin_ell]

Imagine being an MP and still pushing the fiction that “people who work hard” and “people on benefits” are two different groups. 3.1 million people on UC are working. PIP is payable in work. Unpaid carers can get just £86.45 a week. The stereotype is easy. Facts less convenient

[Piers Morgan Uncensored @PiersUncensored]

EXCLUSIVE: AI actress Tilly Norwood glitches and starts speaking CHINESE during her interview with Piers Morgan and real-life actor Tom Conti...

Watch the full interview at 7pm (BST)👇

📺 https://t.co/1nTb79BH8D

@piersmorgan | @TillyNorwoodX

[BBC Breakfast @BBCBreakfast]

'To the person who says it's a snowflake generation, just live just 24 hours as a 16 year old'

Professor Peter Fonagy, the head of an independent review into mental health, ADHD and autism, has told Catherine Burns on #BBCBreakfast that there has been a real rise in mental distress among children and young people, with anxiety, depression, self-harm and eating disorders

https://t.co/eAEvrYadgn

[James Davies 💭 @JDaviesPhD]

Anyone with a modicum of common sense knows that the vast majority of 'mental health' problems arise from people's situations, predicaments & social conditions. The more adverse the contexts, the greater the likelihood of distress. Mass-drugging people was never the solution....

[Tim Boxall ♿🇪🇺 Et Daemonium In Rotae @timboxall]

Not having a PA, I was unaware on this, but my god, it's a travesty. And @DrFrancesRyan
hits the nail on the head with this:

"There’s an unwritten rule that says disabled people should be just grateful for what they’re given by the state, lest we appear to be scroungers or burdens. I say “unwritten”. It’s written in some newspapers most weeks."

https://t.co/jbEAha5iT1

[Saul Staniforth @SaulStaniforth]

Well done to Angela Rayner for explaining to Rachel Johnson that PIP isn't an out of work benefit, plenty of people who receive PIP are in work, and PIP enables them to do that

[Gordon Brown @GordonBrown]

I hope we can all now come together to radically improve end of life care

[Rachel Charlton-Dailey @RachelCDailey_]

The Assisted Dying Bill's impact assessment confirmed that it lacks protections against coercion for disabled people. In a perfect world, everyone dying should be supported in death, but when disabled people aren't assisted to live, it can't be safe. #AssistUsToLive

[Dr Peter Dilworth 💙 #Woke #GTTO 😷 Blue Tick👀 @PeterDilworth1]

Doctors are the only people qualified to see undifferentiated (undiagnosed) patients. The condition is only simple once it’s been assessed by someone fully qualified. Spending the money on employing GPs is the way to go. General Practice is dying on its feet.

[NHS Million @NHSMillion]

It’s crazy to think that the amount a patient pays for ONE appointment with a private GP is about the same as an NHS GP practice gets paid to look after a patient for a WHOLE YEAR.