The NHS is continuing to unconscionably abuse two women living with severe Myalgic Encephalomyelitis (ME/CFS) – and putting their lives at risk.
As it metes out this horrendous crusade of medical gaslighting and neglect, a new comprehensive patient survey has shown just how systemic this really is.
ME/CFS survey: “shocking indictment” of treatment and research
ME is a chronic systemic neuroimmune disease which impacts around 65 million people worldwide. It affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.
Crucially, post-exertional-malaise (PEM) is the hallmark symptom of ME/CFS, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.
A 2015 study found that the quality of life for people with ME/CFS was worse than that for patients with cancer, diabetes, heart disease and other serious conditions.
However, as the Canary has consistently reported, a prominent and vocal element of the medical establishment has been psychologising this awful disease for years. In short, they have been pushing the idea that this is all in patients’ heads – and to devastating and sometimes deadly effect. Predictably, the result has been decades of medical abuse of people living with ME, that persists to this day.
Now, a new survey provides a “shocking indictment” of these healthcare policies and research. Notably, it underscores the widespread impact that these have been having on people living with ME across Europe.
Failing people with ME/CFS across Europe
More than 11,000 people living with ME/CFS responded to a survey that the European ME Alliance (EMEA) conducted on patients across the continent.
Predictably, the survey found that healthcare systems and policies across Europe are utterly failing people living with ME.
For one, it showed the shameful lack of recognition and support for people living with the disease. Specifically, three-quarters of ME patients felt that they had received little or no health care support. On top of this, just one in eight said they’d had ‘good’ or ‘very good’ support.
Significantly, the survey trashed the biopsychosocial model for treating ME – long used to gaslight, abuse, and neglect people living with it. You can read more about it here, but its basic premise revolves around the mistaken and highly damaging notion that the disease is psychosomatic. Invariably, healthcare professionals have weaponised this against patients.
Vitally, the biopsychosocial model has promoted treatments that have caused harm to patients living with the illness, such as graded exercise therapy (GET). Notably, the UK’s key health body the National Institute for Care Excellence (NICE) updated its guidelines in 2021 to remove it as a treatment for ME.
In what should be another nail in the coffin of this unethical treatment, the survey showed that almost half of respondents’ condition had deteriorated after healthcare services had put them through it.
Conversely, it identified pacing – keeping activity levels inside a patient’s energy envelope – was the most beneficial strategy for managing ME.
As well this, the survey highlighted the shocking state of diagnosis, with delays averaging 6.8 years across Europe.
NHS routine neglect and abuse
Right now, two women living with severe ME in the UK are experiencing these systemic healthcare failures firsthand.
Severe ME impacts approximately 25% of people living with the disease. In these cases, people living with severe ME/CFS are mostly, if not entirely permanently bed-bound. What’s more, they are sometimes unable to digest food, communicate, or process information.
Tragically, severe ME is sometimes fatal. As the Canary’s Steve Topple has documented, the disease has killed a number people living with it. Notably, this is often due to routine neglect and maltreatment by the healthcare system.
And once again, the NHS has been putting the lives of two women living with severe ME at significant risk.
Topple has reported on the “heartbreaking” situation for 18-year-old Millie McAinsh who lives with the chronic illness. As the petition for Millie explains:
She is currently in The Royal Lancaster Infirmary part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness.
Millie agreed to come into the Royal Lancaster Infirmary on 30th January 2024 after 4 paramedics carefully helped her down from her bedroom in a scoop to the ambulance. She and her family were hoping that the stay would be short and a feeding tube given as soon as possible and to get Millie back home where she is able to manage her sensory hypersensitivity well.
Since Millie has been in hospital, it has become very clear that that hospital environment is making Millie’s severe ME so much worse, due to the stimulating environment, all the tests and the complete lack of understanding of severe ME, and horrifically the hospital has made the unacceptable decision of sectioning Millie.
Psychologising illness – as usual
Since then, the hospital’s treatment of Millie has only got worse. Updates for the petition on 4 April detailed how the hospital has tried to fit a nasogastric (NG) feeding tube, but this failed. Notably, her family, alongside ME experts, have explained to the hospital that this is inappropriate for Millie due to her postural orthostatic tachycardia syndrome (POTS).
And predictably, doctors have been psychologising her illness:
A functional element to Millie’s condition is being seriously discussed and a psychiatrist came to see her today. Although they told us that they aren’t an ME expert, they still said that they believe Millie is scared of the pain and symptoms that eating, walking and talking could produce and needs to be encouraged to push past these beliefs. They also basically suggested GET.
Millie is under a psych review at the moment and everything she is saying is being written down as well as anything untoward family say.
One of Millie’s consultants said that she is ‘choosing not to eat’ and now even though she is being fed by NG tube she is being offered food orally, she has stated that she finds this very upsetting as she desperately wants to eat but is too exhausted.
Another of Millie’s consultants claims that the ‘fear’ of ME is making her this severe and that it is because she is scared of the disease and not because of the actual physical symptoms that she is this unwell.
So once again, they are using this to keep Millie in hospital against her and her families wishes:
The hospital has applied for a DOLs (Deprivation Of Liberty Safeguarding) the second assessor came to the hospital… and is going to recommend that the local council grant the DOLs. Meaning that Millie could be detained in hospital for three months unless she appeals it.
“Serious consequences” of medical abuse
Meanwhile, the NHS is subjecting another person living with severe ME to a similar toxic cocktail of psychologising abuse and neglect – which is of course threatening her life.
Topple has also previously detailed the “life-threatening dehydration and malnutrition” that the NHS is putting Sussex patient Karen Gordon through. Similar to Millie, the hospital was providing entirely inappropriate care for Karen and eventually discharged her home. However, the East Sussex Healthcare NHS Trust has since refused to tube-feed her at home. As a result, her family have voiced Karen’s fear that she is dying from dehydration and malnutrition.
As Topple explained, the trust has:
failed to follow NICE guidelines around severe ME patient’s needs, and also refused her intravenous (IV) total parenteral nutrition (TPN) – telling her she would have to go 100 miles to St Mark’s hospital in London for this.
However, this was completely unsuitable for Karen – and littered with problems:
The journey would be detrimental to her health. St Mark’s would not give her a side room.
The hospital wouldn’t let Karen’s mother, who is her full-time carer, stay with her 24/7.
So, Karen refused the referral – and as a result, the Conquest Hospital discharged her. It said there was “no alternative” it could “offer”.
Since then, St Mark’s has so far failed to set up total parenteral nutrition (TPN) for her. Instead, they have doubled-down in attempting to force her to the hospital. On 6 April, Karen’s petition provided an update. It stated that:
We have been told that Karen might be given a deadline for when she has to give a decision about whether she agrees to go to St Marks Intestinal Rehabilitation Unit. Karen was told again that if she does not agree to go to St Marks then East Sussex Healthcare NHS Trust (ESHT) might take legal action, might say that she has to have another capacity assessment and say that her case may go to the Court of Protection. Or ESHT might send Karen home without IV feeding which she could not survive without. Karen has already been formally assessed as having capacity twice in about the last 18 months.
Moreover, the petition said that:
We do not think that it is fair or right if Karen is not given the option of remote setting up of home PN when there are so many valid problems and risks for her of going to and being at St Marks and knowing that there will be serious consequences for Karen if she does not get home PN as she needs it to survive.
Time to “step up” over ME/CFS
So, given its survey results, the EMEA concluded in its press release that:
The dire situation for most ME/CFS patients across Europe is, in part, the result of both ignorance and lack of knowledge among health professionals, social workers, and policy makers. Yet ME/CFS has been recognised as a disease of the nervous system by the World Health Organisation since 1969.
Lack of funding biomedical research contributes to ME/CFS being categorised as a high burden under prioritised disease that urgently requires a dedicated EU strategy.
As such, it argued that:
European governments must step up to fund existing, and develop new, Centres of Excellence for ME/CFS to perform a joined-up pan-European strategy of coordinated, collaborative translational biomedical research across Europe that will focus on establishing a full understanding of the disease and the development of treatments to mitigate or cure it.
However, after decades of medical abuse killing ME patients, appealing to the medical establishment to amend its ways has done little to improve the indefensible state of healthcare for ME. Millie and Karen’s current situations demonstrate that action is needed now, and urgently. But as ever, change isn’t going to come from within.
Feature image via WingedRedLion/Wikimedia, resized to 1200 by 900, licensed under CC BY-SA 4.0
