Swiftsandswallows

My daughter Isla suffered so much, ill with ME from age 6, told to push through the pain to get better, years of deterioration and disbelief. Involvement of Social Services because of concerns of Fabricated Illness and later her MCAS symptoms put down to anxiety. She died in May

I've been a parent carer to kid/s with ME for over 13 yrs. In this time we've had new NICE guidelines and now the Delivery Plan but really nothing has/seems like it will change for the better. We'll still be left pleading for care & hoping that any professional we see believes us

As a psychologist and carer of a young adult with very severe ME, I'm increasingly horrified by the pseudopsychological nonsense that permeates collective narratives, obstructs treatment & care, impacting patient safety, & erodes the confidence of patients & carers. Enough!

How different all #PWME would be feeling today if the plan looked like this

Thank you so much to @ThereForME_UK. When it feels like we're screaming into a void, you offer the hope we all need. You've achieved so much in one year. Thank you 💙

Alarming neglect of another hospitalised young woman with severe #MyalgicEncephalomyelitis. Please read, sign and share. 🙏 #MECFS #C4News @Channel4News #r4today @BBCr4today @BBCBreaking

“We didn’t even see his eyes for over a year.” “It was like dealing with someone almost in a coma.” Clip from Channel 4 News: Nick Benton (@BentonNick18437) and his family on life with severe #MECFS — as the government finally releases its delivery plan.

A society that forces unpaid carers to hold up signs just to ask for rest is a society that’s failing. Sleep isn’t a luxury. It’s a basic human need. Why is no one in government calling out this abuse? #ProtestFromHome #GiveCarersABreak

Ok, possibly less bad /actually good news perhaps as a result of our lobbying. For the Severe Conditions Criteria, a diagnosis will count IF recorded in the NHS system i.e. recognised by the NHS. So a private autism or ADHD diagnosis will qualify IF your NHS GP has it on record.

The Universal Credit Bill has passed. The Motion of Regret did not. I am heartbroken. We got powerful truths spoken in the Lords which may help later in legal and public fights. But.... What is this thing called Labour. Not something I morally recognise Love to all x

To think that we waited so long for this plan. How the hell am I meant to reassure my daughter with #ME that she won't end up dying as her sister did if this is the best they can come up with after all this time.

3 years for a #MECFS plan seemingly lacking any plan. Optional e-learning modules to train untrained clinicians. A promise to boost research with a closed cheque book. #pwME have been let down again. @wesstreeting @AshleyDalton_MP is this really the best you can do? #FundThePlan

Starved to dead. UK 2025

My conclusion so far - they correctly identified the feedback themes on lack of research, training and service provisions and then decided not to do anything they were told was required. This is a plan to plan at best, it lacks little of substantive change.

Our research shows that carers who feel trapped in the caring role are at risk of killing themselves or the person for whom they care. Access to regular breaks will prevent deaths! Sign @CarersTrust petition to give carers the legal right to respite. carers.org/news-and-media…

Today, we take unpaid carers’ voices to Parliament. #ProtestFromHome

Thank you @swastrosarah & @BinitaKane for speaking so eloquently

From MEA on Facebook. #NonDeliveryPlan “The DHSC decided not to include anything from our press release because it wasn’t sufficiently supportive”

The UK government says it is doing everything it can to alleviate suffering in Gaza. The UK government won’t suspend the sale of F-35 parts to Israel. The UK government won’t stop the use of RAF Akrotiri or end military cooperation. The UK government won’t accept the ICJ…

What’s being weighed up at the moment is which is more deplorable: that it’s possible that a genocide is going on or that people are saying it’s a genocide. Obvs, the pain of hearing people say it’s a genocide is worse than any suffering and death going on. Obvs.

I am not liking the description of severe in here as housebound or not able to work. Reality is 80% of ME/CFS patients can't work, 25% of them are profoundly bedbound or worse and suffering extensively in dark rooms. This press release already minimises the disease.