A Gloucester care home is refusing a person in its care living with severe myalgic encephalomyelitis (ME) and long Covid the vital supplements he needs to the point he is suffering life-threatening dehydration.
His ongoing battle for his basic care needs exposes something shameful about the state of social care for people living with these highly stigmatised post-viral conditions, namely, that it’s effectively non-existent. That is, when severe ME and long Covid patients have no care-givers to turn to, it’s ill-equipped older people’s care homes where councils are inappropriately shunting them.
Unsurprisingly, Jason’s story depicts a litany of neglect, gaslighting, and abuse.
Jason Stiling: severe ME, long Covid, and the serious lack of specialist care
55 year-old Jason Stiling has lived with ME since 2012. It’s a chronic systemic neuroimmune disease which affects nearly every system in the body. ME causes a series of debilitating symptoms. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions.
In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.
After contracting Covid-19 in December 2021, Jason joined the growing numbers of people with a new, and devastating diagnosis: long Covid. His ME symptoms worsened. So, it was then Jason also found himself among those living at the sharp end of the ME scale too.
At least 25% of people live with severe ME. People living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information.
It meant Jason – almost overnight because of his Covid infection – became entirely dependent on others for his care.
And this is where the significant problems have come in for him. Early on, family and friends failed to support him when his health took a turn for the worse. However, there are no specialist services for people living with severe ME.
Jason’s experience is what happens when such patients have no willing or able care-givers.
Care homes: a hotbed of harm for chronically ill patients
The Canary previously reported on Rhiannon in New Zealand, who at the age of 34, had been forced to live in an ‘aged care facility’ because there were no alternatives. And it’s no different for severely chronically ill patients in the UK.
Local authorities – primarily Devon County Council – have bounced Jason from care home to care home. He first entered one in March 2022, three months after contracting Covid-19. But the ‘care’ at these was littered with issues from the start.
For one, the care home staff know nothing about his conditions. Like Rhiannon in New Zealand, it has meant a series of glaring care failures throughout his stays.
Due to his likely mast cell activation syndrome (MCAS), Jason has a restricted diet. This is what care homes have passed off as meals for him:
https://x.com/JasonS1269/status/1893390232399086048
Naturally, aside from it being entirely unappetising – to say the least – it’s also essentially nutritionally empty. Jason has described care home food as “awful”. More than that however, it has clearly been completely inadequate. With care homes serving him meals like this, he won’t be getting the calories and nutrition he needs.
When he fell and injured his head, the care home manager (at the place he’s currently staying) did nothing to ensure he was checked over:
I fell & banged my head in the bathroom this morning. A nurse found me on the floor & got other staff to help me back to bed, saying she’d be back to check on me. Three hours later, the care home manager came up & took a picture & left. That’s it. That’s the story. pic.twitter.com/cOGVuJzVNn
— Jason S (@JasonS1269) May 6, 2025
Current care home confiscates his vital supplements
Jason explained to the Canary that he had:
Landed in a care home in Gloucester after seeking treatment for a non long covid issue at a private clinic. Devon County Council wouldn’t take me back into care as I had ‘crossed a border into another county’ so had to stay in Gloucestershire.
And since then, the sudden hot weather in tandem with care home staff abusively withholding his supplements has been the perfect storm for his condition to deteriorate. Jason told the Canary that:
Went into a major crash in heatwave two weeks ago after temperature rose to 30 degrees in my room after supplements including electrolytes had been taken away by care home manager for no good reason. “They may be doing you harm”.
My baseline has gone. I am extremely unwell and being abused and neglected as a result of ignorance. I need an intervention ASAP.
Earlier in May, this resulted in Jason ending up in hospital on a hydration drip:
In hospital. On a hydration drip.
I fucking told them. I was drinking around 6-8 ltrs of water a day. No amount of water is enough if your body’s not absorbing it & you’re bedbound in hot temperatures, unable to sweat.— Jason S (@JasonS1269) May 7, 2025
As it currently sits, the picture for Jason right now is enormously concerning. The care home continues to refuse him his supplements – including vital electrolytes. Jason clearly lives with postural orthostatic syndrome (POTS) but has not been able to pursue an official diagnosis.
For POTS patients – who have difficulty maintaining fluids and live with the often co-occuring hypovolemia (low blood volume) – electrolytes can be essential. These help patients to retain water, while simultaneously increasing blood volume.
And he has been experiencing alarming symptoms which show just how dangerously dehydrated he is:
My urine is boiling hot.
My head is throbbing even though it’s been covered in a wet towel all day.
My kidneys hurt.
I haven’t had feeling in my feet for two hours.
Typing on this is making me see stars.
Two doctors echoed each other last week. ANXIETY— Jason S (@JasonS1269) May 5, 2025
Patients ‘threatening’ behaviour? Just sick people advocating for their needs
So how has the care home responded? More dismissal of course.
Jason has tried to engage with staff about his supplements. ME, long Covid, and POTS specialist and neuroscientist Dr Claire Taylor provided Jason with a letter about POTS and long Covid. However, the care home has ignored all the recommendations from it.
The sheer arrogance of non-medically trained care staff thinking they know better than a specialist, and the patient would be galling enough. But to add to it, a care home staff member suggested Jason had threatened her when he explained that they were:
unintentionally harming not helping me [Jason] taking away beneficial supplementations.
In other words, Jason was simply advocating and explaining his needs to them. And this overreaction to him even mildly asserting agency over his care has significant parallels to the ways scientists and clinicians have long slandered ME patients.
From ‘militant’ activists and ‘extremists’, to comparisons with climate deniers: this is what a powerful lobby of biopsychosocial scientists – ones that subscribe to psychosomatic origins and treatments for the disease – have tarred ME patients with the disgraceful accusation of for years.
Jason’s care home staff are unlikely aware of this history. But it’s in this maligning context the suggestion that Jason was “threatening” lands. It’s as if these problematic characterisations of ME patients fighting against a tide of psychologisation – through Freedom of Information requests and community campaigns to expose the scandal – filters right down.
So when patients like Jason merely advocate for their needs, it’s seen as ‘being difficult’, or actively hostile. In short, this is – partly – the result of the pervasive stigma the elitist echelons promulgating biopsychosocial leanings have entrenched so effectively.
Not the first time, unlikely the last
Of course, it’s hardly the first time care home staff have neglected him and tried to make out he’s being a ‘difficult’ resident, rather than a patient forced to fight for his basic needs to be taken seriously.
Jason submitted Subject Access Requests for records previous homes held on him. In staff notes from one nursing home manager, it read that:
Jason is unpleasant to staff and is using the placement as a bed and breakfast – his personality/mental health is the main problem – he states he has ME and then Long Covid and remains in bed accessing chat rooms all day.
In another, a staff member wrote that a care home manager had told them:
that Jason is not engaging in any activities or support and that he cruel towards staff. feels that Jason has a significant underlying mental health disorder, but Jason denies this.
Clearly, his atrocious treatment has been underpinned by homes’ ignorance, obstinance, and arrogance over his care. Predictably, many staff have shown a tendency towards disbelief of the condition – or persisted with the notion it’s psychosomatic. The current care home he is in now is no exception.
It’s all indicative of a larger problem for people living with ME, long Covid, and co-occurring under-recognised conditions. That this dismissive and gaslighting attitude is rife for these patients wherever they end up.
Family and friends: disbelief and abandonment landing Jason in care homes
Jason’s posts also document an all-too common and appalling reality for many ME and long Covid patients: the virtual abandonment by family and friends. He no longer has contact with either – after now four years of their absence – offering neither care, nor support since he tipped into severe.
Initially, his brother helped him in the first couple of months after his Covid infection. However, it wasn’t long before the gaslighting began. In one X post, Jason detailed how his brother had soon decided it was all in his head. His parents entirely stopped all contact with him. Another describes how his family and friends told him repeatedly to “pull yourself together”.
Compounding the isolation of this stigma and disbelief from his pre-Covid social circles, ultimately, family and friends completely deserted him. His posts are a harrowing record of more than four years with no offers of care from family: no visitors to each home councils have bounced him around since he became so severely sick.
A tale of two extremes of severe ME
In other words, he has been left to advocate for himself throughout this entire ordeal. It exposes the gaping cracks in the UK’s social and medical care system. One that was functional wouldn’t push severely chronically ill patients into aged residential homes with zero training on their conditions.
Right now, severe ME and long Covid patients are reliant on family and friends to be primary care-givers. When they can’t do that or choose not to, there’s nowhere to get adequate care. And this dysfunctional system is putting them at undue and significant risk, because it can be arguably a tale of two extremes for many.
On the one end, there’s patients like Jason. Actively abandoned by family and friends. Forced into care home after care home, hospital trip, after hospital trip. Substandard care at both, marked by disbelief, neglect, and abuse. For other severe ME and long Covid patients, the atrocious lack of care support traps them with abusive ‘care-givers’.
Anna, Katiana, and Nevra are three such severe ME patients the Canary has reported on in this very situation. Theirs isn’t an isolated experience. Given the paucity in ME and long Covid care, Jason’s likely isn’t either.
Royal Devon and Exeter Hospital not following its own protocol
However, the care home mistreatment is part of a broader story of systemic failure, persisting medical ignorance, and stigma. What’s equally, if not more alarming, is that Jason has been (mostly) under the care of the Royal Devon University Healthcare NHS Foundation Trust. Specifically, at different stages the Royal Devon and Exeter Hospital has admitted him.
This is of course the same hospital and trust (now post-2022 merger) that catastrophically failed 27 year-old Maeve Boothby O’Neill. It’s also the hospital that now has an inpatient protocol for Severe ME patients. Yet, this has been the disgustingly ignorant attitude of hospital staff:
No family or friends to call so documenting here.
In hospital. Used frame to get to toilet yesterday as was able.
Today not able. Bullied into trying twice by nurse & HCA. Couldn’t make it. The old “if you can do it once”.
Shat in wash bowl on floor as wouldn’t give me commode.— Jason S (@JasonS1269) December 30, 2024
If that weren’t bad enough, Jason explained how this was also after Maeve’s mum Sarah Boothby visited him in hospital:
Hi Naomi. I had Sarah Boothby visit last week.
It’s the same hospital.
She’s saying the same things to the staff.
I don’t know what else to say!— Jason S (@JasonS1269) December 30, 2024
During his stay in January, Jason was understandably left to wonder if staff had even bothered to look at its own supposed protocol:
Are you following any of this during my current stay at your hospital? @RoyalDevonNHS https://t.co/wJGe1T0yYC
— Jason S (@JasonS1269) January 2, 2025
It might come as little surprise to many in the ME community that Dr David Strain – who’d ignored advice from ME expert Dr William Weir in Maeve’s case – has been involved in Jason’s ‘care’.
Dangerous dehydration putting Jason’s life at risk
The situation for Jason is increasingly urgent.
Since the care home took his electrolytes away, he has been in a state of dehydration. Jason has now been this way for over three weeks. Yet, his GP has also refused to sign off on him taking them. Jason’s post on X explained how she wants to confer with his social worker first. This was on Tuesday 13 May. However, this now just means more days of Jason left dangerously dehydrated.
Moreover, his GP’s decision to consult his social worker – who has never met Jason once – is another source of serious concern for Jason now too. Jason explained how he:
never keeps me informed, doesn’t answer emails and speaks to me like I’m some kind of criminal on the phone.
It never should have come to this, and if care home staff had listened to him, it wouldn’t have. In short, it’s another appalling case of medical and care staff abuse and neglect putting severe ME and long Covid patients lives at risk.
And now, it has been strongly implied to Jason that the care home want to push him out. He told the Canary that:
We’re having a meeting tomorrow [Thursday 15 May] to ‘assess my needs’ with the social worker from Exeter and his manager together with the care home manager here. She wants me out! I got on well with her until she took away my supplements. It’s a terribly run care home.
He expressed how he doesn’t “know what’s going to happen”.
Severe ME: when will this abuse stop?
Jason now worries his social worker and the care home will force him to leave. In particular, he fears they will want to move him back to Devon. However, it’s painfully evident that Jason is far too ill to travel. What’s more, living with severe ME and long Covid means the journey could have irreversible long-term consequences for him.
Ultimately then, if the care home and GP don’t change tack – and fast – Jason’s could be the next life lost to these terrible post-viral conditions. And one thing is already glaringly apparent: his death will be on their hands.
Featured image supplied
