Phantom healthcare for ‘real’ diseases: when will ME/CFS and long Covid get parity?

Historically, medicine has had a problem with women, especially those who were not married. Sounds unrealistic? The nineteenth century wasn’t that long ago, and many diagnoses and treatments of physical illnesses were linked to women’s mental and emotional lives. Speculumism, clitoridectomy, and institutionalisation were all instigated because women’s testimonies were regarded as inherently unreliable. Today, medicine still has a problem with young women with severe ME/CFS and long Covid.

We are at a crisis point in medicine

We see Maeve Boothby O’Neill, Merryn Crofts, Alice Barrett, Carla Naoum, Karen Gordon, Millie McAnish, and Sophia Mizra all refused life-saving medical treatment because doctors convinced themselves that mental and emotional factors were involved in their ME/CFS, and their physical symptoms and personal accounts were disregarded.

Yet, the nub of this is if a doctor can’t tell the difference between anorexia & very severe myalgic encephalomyelitis they shouldn’t be in charge of these patients. 

We are at a crisis point within our society regarding illnesses labelled as ‘medically unexplainable’, nociplastic, functional, or having a mind-body interplay. There is a fault line, a black hole that too many people are falling into, due to the dynamics between personal, systemic, and ideological flaws.

This is a morass where medicine is lost. Lost because it can’t treat or cure these illnesses. Lost because it can’t explain them. And many young women are paying the cost of this ignorance with their lives.

The clash we are witnessing on a very human front is the divide between individual responsibility and systemic failure. 

ME/CFS: the coalface of our medical morass

Many in the ME/CFS community bore another scar when, last week, the coroner found no one to be to blame for Maeve Boothby O’Neill’s death from malnutrition caused by very severe ME. 

One reason given was that no medic had a faulty view of ME or denied it was “a true illness”. Another because there was no institutional protocol in place for severe ME, so individual responsibility was excused.  

Yet, this is the morass. It is practically impossible to find a doctor who will deny to a patient’s face that ME isn’t ‘real’. The get out of jail card is that they claim mental illness is real (which it is) or mental factors that contribute to a physical disease are also real. The problem is that ME isn’t a mental illness or a disease that is driven or sustained by psychological influences. These are the facts the coroner should have recognised.

For ME, we have an industrial phantom healthcare system in place. It’s rooted in the faith that ME and MUS have mental and emotional driving factors in their etiology.

There is training in MUS, in behavioural techniques for ME, long Covid, chronic pain.

There is clinical guidance set by BACME, an organisation that is often closed, inaccessible, and supports outdated, even risky ideas about exercise and rehabilitation.

There is a whole clinical network for ME and long Covid that seems to take pride in ignoring the NHS ME guidelines, medical investigations, and insisting on behavioural lifestyle interventions. It is changing slowly, with the introduction of the 2021 NICE guidelines, but not nearly fast enough.

It is a mirage of medicine based on discredited research, ineffective clinics, and clinical guidance, and on beliefs in causal factors that are nothing more than vapours and miasms.

History repeating itself with long Covid

Unsurprisingly, it doesn’t work. Patients are not getting better, instead a modern day crisis grows by the hour. There are 400 million globally with Long Covid, two million in the UK. Half meet ME/CFS criteria.

Medicine, like many humans, seeks a coherent, explainable system. We saw this at its peak with humoral medicine, which lasted for thousands of years and is complete guff. But it made sense of the world in the face of a lot of vast uncertainty. It took doctors until only recently in the grand scheme of things to stop bloodletting. The point of this is that the model in place for many chronic illnesses is coherent in the face of a lot of uncertainty, yet ineffective. 

This phantom menace is also cheap.

Giving ME and long Covid patients the care and treatment they need and deserve would be really, really expensive. The BPS got a foothold in the 80s and 90s in the halls of power because it offered a low-cost, explainable, coherent system. Patients were blamed, benefits didn’t have to be given, and no one had to take responsibility for finding an effective treatment.

We see history repeating itself with the attitude and approach to long Covid: lifestyle interventions, behavioural research, and a useless farce of a clinical structure. Once again, neo–liberalism commodifies people and prioritises the power of money and the preservation of fortunes over people’s needs.

The human result is that Maeve, Karen, Millie, Carla, and all those faced with ME, long Covid, fibro, Lyme and other ‘MUS’ (this isn’t a polite word in medicine) is a culture of medical silencing, incompetence, failure, and ultimately prejudice. 

And almost nobody admits to prejudice.

Doctors aren’t all bad. But they do need to take responsibility

“Separate but equal” is an apt quote from ‘The Help’. Yet, we know it raises its head when sectioning, safeguarding, and the denial of medical care are even considered. Equal in that mental and physical illness are real but separate, just as ME/CFS, IBS, fibro, chronic pain are seen as separate from diseases with more prestige and medical recognition such as cancer or Parkinson’s.

Inappropriate safeguarding, sectioning, and denial are tools of violence, subjugation, and silencing. Sounds harsh? There are many families who, when trying to fight for safe medical care for their loved ones, have these institutional forces enacted upon them.

If these come into play without a doctor possessing a sound medical view of ME or long Covid, then the battle is already lost for the family and great harm can occur. This extra injustice can cause medical trauma and distrust for a lifetime.

This phantasm’s greatest gift to doctors and those in authority is that it allows them to move the blame away from personal responsibility and onto the system. We saw this in the coroner’s verdict in Maeve’s case. This isn’t the only time that we see this power mechanism in play. We saw it in the banking crisis, where no one part of the machine was responsible.

The doctors in charge of Maeve’s care aren’t ‘bad’ people. Yet, systemic change also requires individual responsibility, individual conscience. 

What makes one doctor look at a severe ME patient and understand the immense suffering and want to help, engage and protect that person, and another to deny them life-saving medical care and section them?

Believe patients

One answer is quite simple. We need doctors to listen to patients, to believe them. Maeve’s doctors might have thought Maeve’s ME/CFS was ‘real’, but they didn’t believe or listen to her testimony, her mum’s, or other experts to understand how to stop her deteriorating or starving to death.

At the heart of this dichotomy is medicine’s faith in the harmlessness of rehabilitation, both psychological and physical.

From the patient’s perspective, lifestyle intervention can be ineffective; trite at best and harmful and woefully disproportionate at worse. Yet medics are reluctant to treat symptoms pharmacologically or even investigate symptoms medically. This is because of the deeply ingrained belief that these types of diseases do not have a fully physical disease process. The patient perceives symptoms because of functional or faulty perceptions in the brain or mental illness. What’s the use of investigating or treating that?

It’s clear that we need change on personal and systemic levels. If only one wing is flapping, then we have medicine flying in circles, unable to function effectively and safely for patients.

Doctors can’t change a system overnight but they can change their attitudes and take greater personal responsibility. They can research the science, they can listen to those experts who know.

Will ME/CFS and long Covid finally see a sea change?

Patients have sacrificed too much in trying to advocate for safe, life-changing treatment. It is time for medicine and the government to take the baton. Will Labour actually boost ME/CFS and long Covid funding? Will the UK get the moonshot we need?

Andrew Gwynne MP states:

My deepest sympathies go out to Maeve’s family. I’m committed to improving the care and support for all those with #ME. We’ll publish a plan which will focus on boosting research, improving attitudes and education & bettering the lives of people with this debilitating disease.

In the nineteenth century, medicine’s understanding and treatment of many illnesses was delayed by false models of mental, emotional, and physical interaction. We must ensure doctors no longer hold the belief that many illnesses are ‘functional’ and not rooted in organic pathology.

We need urgent biomedical research funding, quality medical education and a sea change that is based on listening and protecting patients with safe healthcare and clinical practice.

Featured image via the Canary