After public outcry and media coverage around a campaign called #BringMillieHome, it has come to light another young woman living – Carla – with ‘severe ME’ (myalgic encephalomyelitis, ME, also known as ME/CFS) is at risk in an NHS hospital.
ME/CFS what is this debilitating illness?
ME is a chronic illness that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.
However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.
Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.
Severe ME
In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, cannot speak, and are completely reliant on others for their care. However, crucially ME can kill people – and has.
In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.
Much of the appalling treatment of people with ME is due to a cartel of medical professionals who have for decades claimed the illness is psychological. The Canary has extensively documented this.
Now, another young woman is at severe risk in an NHS hospital, where doctors are saying everything from her severe ME to seizure events are “non-biological” – that is, psychomatic.
Carla’s case
Carla (full name Carlita), is a 23-year-old woman from West London who lives with severe ME.
Originally, University College Hospital London (UCHL) diagnosed Carla’s ME, and placed her under its ME/CFS clinic for adolescents. This includes in-patient services. She began deteriorating further, with the amount of time she spent as an in-patient increasing.
However, UCHL discharged her when she was 19 as the service stops at this age. It advised her to leave university as well. She was studying history and English. Her parents then took her to Ealing hospital, where doctors neglected and abused her – at one point the police were even involved. Ealing then discharged her into the community.
So, her family cared for her at home where she was on nasogastric (NG) feeding. However, towards the end of January this became more and more painful for Carla – to the point where she could barely tolerate any feeding. She was becoming increasingly unwell.
The family took the decision to take her to West Middlesex hospital, where she currently is. Originally, she was under gastroenterology where she also had referrals in place for other specialisms such as pain management.
However, this changed when the psychiatrists got involved.
Ignoring NICE guidelines on severe ME
It is unclear at this time just why the hospital transferred her care from gastroenterology to liaison psychiatry. However, Carla’s father Pierre wrote in a complaint to PALS seen by the Canary:
The liaison psychiatrist-consultant… despite him not being a specialist in ME, is insisting on treating Carlita in his own way, which is contradicting the specialist in ME’s instructions as well the NICE guidelines on severe ME/CFS.
This is causing my daughter serious harm. He is speaking in a normal voice with his team (which is too loud for Carlita). The team have been opening the curtains, exposing the sunlight, which causes Carlita huge pain leading her, after about 15 minutes, to lose consciousness for several hours.
Although he promised us he would only open the curtains for five minutes, he unfortunately didn’t stick to his word. They have also removed the cover from the window of the door on 12 April because they wanted to make Carlita see the light from the ward. This again caused her great pain and to lose consciousness.
The liaison psychiatrist has asked us to take her back home, claiming that there is nothing they can do for her abdominal pain and other symptoms. We refused while she was still in this critical situation as we believe she might die. Therefore, he said, “we will keep her but under our rules”. We feel he was threatening us. He has also cancelled all her referrals to other clinics – like pain management.
Moreover, he is not a gastrological doctor to make these decisions, because the gastro consultant made these referrals, so only the gastro consultants have the right to cancel it if they find logical medical reasons.
On 9 April, I asked the gastro consultant about these referrals, and she said everything should have remained as she promised.
I cannot understand why the liaison psychiatrist is ignoring everyone and all the medical opinions that has been previously given, trying to force his views on my daughter and us.
Seizures, neurological events, and forced medication
In recent days, Carla has been seriously declining. The Canary has seen video footage of Carla repeatedly losing consciousness. This has then progressed into her having neurological events that are presenting as tonic clonic seizures. Carla’s mouth also dropped on one side for almost two hours – mimicking what looks like a stroke event, although it doesn’t appear to have been this.
The Canary has been told that nurses have given Carla medication without her or her family’s consent. Doctors are saying she does “not have capacity” to make her own decisions. However, the family have been given no paperwork to say Deprivation of Liberty Safeguarding (DoLS) measures are in place.
As of 2pm on 16 April, Carla had been unconscious for almost 24 hours. Yet throughout this time, and the weeks preceding it, doctors have done nothing. They do not believe she is having seizures. Doctors have so far got any other specialisms such as neurology or cardiology involved – the latter despite Carla being tachycardic most of the time.
West Middlesex hospital says…
The Canary asked West Middlesex hospital for comment. It took them four days to formulate a reply for us. A spokesperson for Chelsea and Westminster Hospital NHS Foundation Trust said:
While we cannot disclosure any patient information or individual care plan, we are committed to providing the best care and support for all patients. Our staff are committed to following NHS and NICE guidelines throughout the care we provide.
It’s clear that in Carla’s case, staff are not following NICE guidelines. In fact, they appear to be actively working to flout them.
Severe ME: systemically psychologised
Carla case, while clinically somewhat different, is almost identical to Millie McAinsh from Lancaster. As the Canary previously reported, she is in a similar situation. Karen Gordon, while not currently an in patient, has also been subject to the same treatment by the NHS.
Doctors are mistreating, neglecting, and arguably abusing both these young women because they believe their illnesses are psychomatic. This is a systemic issue across not only the NHS, but globally, too. Awareness of the issues surrounding ME and severe ME will be raised on ME Awareness Day on 12 May.
If you wish to find out more about Carla’s situation, follow campaign group the Chronic Collaboration on X here.
Featured image supplied
