On Friday 27 September, the last day of the Maeve Boothby O’Neill inquest, we heard that a much needed specialist service for myalgic encephalomyelitis (ME/CFS) is not on the NHS agenda. So, again, people with ME and long Covid are left without humane, essential care that other illnesses with more prestige are automatically assigned.
Many with long Covid and ME feel they have entered a fog, a wasteland – their bodies no longer functioning; let down by government who refused to protect them from a preventable disease; and lost in a dysfunctional medical system.
So what causes this fog? Why are people with chronic illness medically abandoned and silenced? Being an individual fighting deeply systemic problems is inherently unjust. Doing this with an energy limiting condition can often feel unbearable.
At the heart of this issue is a system that does not have the guidelines, commissioned services, or established culture to treat a person with severe ME or Long Covid.
The assumptions around ME/CFS and long Covid healthcare
We saw this from the medical director of the Royal Devon and Exeter, Dr Anthony Helmsley’s evidence in the Maeve Boothby O’Neill Inquest. There is still limited guidance on the care for severe ME/CFS, informal training only, no capacity or resources for specialist services, and no intent by the ICB to procure any.
Yes, the coroner intends to write an S28 Prevention of Future Deaths report to the NHS, Department of Health and Social Care (DHSC), and National Institute for Clinical Excellence (NICE).
But with the continued austerity of the Labour government, the refusal of Wes Streeting and Andrew Gwynne to meet with the #ThereForME campaigners, and the silence of the front bench to mention Covid, it is unlikely to institute the changes people with ME and long Covid need now.
There is an inherent fallibility that, if an authority does not have the structure, then people presume it can’t be a problem as someone (else) would have addressed it. Yet this is an assumption, a faith-based decision which ultimately creates the first barrier of fog.
Not having this institutional framework means an illness is thrown down the ladder of disease prestige. I raised this in a previous article, Phantom Healthcare for ‘Real’ Diseases.
Yet, we often forget that science and medicine exist in an interconnected culture that is regularly based on emotion.
Not having a framework of education or automatic care pathway means a void occurs. How a doctor fills that gap can be a psychological and reactive process that can take many forms: from the aggressive and/or the dismissive to the withdrawal of empathy. It is this gap that allows medical gaslighting to creep into the patient experience.
Toxic empathy: why so serious?
However, there is another reaction that can occur that is subtle and extremely difficult to deal with. That is toxic empathy. In ethics, the moral value of an action can be seen as being established in the intention or in another school, the consequence.
One reason why toxic empathy creates such a fog for the ME/CFS or long Covid patient and ultimately for the doctor is that the doctor’s intention can be good. So, how can this be a bad thing? Well, we all know the fable of where good intentions lead.
The difficulty here is that in the absence of a working, effective healthcare system, the space is filled with a lifestyle-rehabilitation paradigm that emphasises a de-medicalisation of the illness. Here, the biopsychosocial model usually takes precedence with no focus on the pathology of the disease.
The responsibility of the treatment is placed on the patient’s efforts – either physically or psychologically. Here, the toxic empathy becomes toxic positively where we are encouraged to be positive and make mindset changes and maybe do some yoga in the absence of medical intervention.
What often comes alongside this model is healthcare workers ramped up in an empathy that distorts their ability to realise that the way they are treating the patient is ineffective at best, patronising in the middle and, at its worst, life-threatening. A level of denial and cognitive dissonance occurs which creates worse outcomes for patients.
We know through research that patient’s wellbeing and safety is in a precarious place when the biopsychosocial model is used. We see this in chronic pain, fatigue clinics, women’s and gynaecological disease, and the general dustbin arena of medicine.
This hole in medicine is systemic, but it plays out in individual lives – and this is where it gets dangerous.
The sharp end of the biopsychosocial model
Unfortunately, toxic empathy is amped up because the biopsychosocial model operates in a holistic way which has associations with a more spiritual, evolved, and forward-thinking mystique. This often creates even more a self-value and self-identification, which is very difficult to break through.
At the worst end, the HCP can have a chronic condition but has embraced a psychological interpretation and then we have the full gamut of lateral ableism to deal with, which creates an almost impenetrable density of fog.
In Buddhism, one quality is generally balanced with another. So compassion is often paired with wisdom. Why? Because without wisdom, without insight, the compassion becomes stupid compassion and ends up harming and causing a lot of suffering. Medicine is not immune to this problem.
The pinnacle of toxic empathy in the medical profession is where children are involved. We know that disabled, neurodiverse, and chronically ill families are at a higher risk of damaging social service intervention.
We have seen this in ME/CFS, where one in five families have had inappropriate child protection involvement. Professor Luke Clements has gone into detail with this with the Cerebra report, the charity that supports children with brain conditions.
Child protection and social services
Without the mechanisms of a working healthcare system, a health or social care worker can fall into the trap of assuming psychological factors are either causing or interrelated with a child’s illness.
This is often not done maliciously. It is initiated through concern, but because of the inability to see clearly, the fog of toxic empathy descends on everyone. Because of this ‘empathy’, a family can be driven through a nightmare with the risk of their child being taken away.
It is ultimately this empathy that means that the healthcare practitioner cannot see their own errors or misjudgements and, when called into question, continues to ramp up action in an attempt to not be wrong.
And here the extreme end of medical silencing occurs, as it becomes dangerous for families to engage and interact with the medical system. Child protection flags stay on records; suspicion becomes inbuilt in your future medical interactions, and complaints can be more fuel for more social services referral.
It is unsurprising that many with ME/CFS and long Covid actively disengage from the medical system as it becomes just too risky.
The only answer: widespread, systemic change
Medicine is notoriously unreflective. It doesn’t look at itself as a system. Medical students are not trained within a humanities system that requires critical, analytical, and nuanced thinking. It is a black and white training that originated in the 19th century with the professionalisation of medicine, which wasn’t an easy or always benevolent process.
Yet, ultimately, this is about power.
The power of class, of gender, and of professionalism. It’s about power dynamics on a systemic level that takes place in the individual encounter.
This happens when a doctor is faced with a position of powerlessness because they do not understand or have been educated on a disease. For them, this is a very uncomfortable place to be.
An ME/CFS or long Covid patient when confronted with a medical system that can’t or won’t help them is then forced to learn and become the expert, which then disrupts the power imbalance even more and can create a maelstrom of difficulties for everyone.
So what’s the answer? We need widespread systemic change, specialised services, and investment. When will Wes Streeting, Andrew Gwynne and NHS Executives listen and initiate what is needed?
It is deeply unfair for a sick individual to try to deal with this on a personal level. The situation can often turn into a Chinese finger trap where the more you struggle, the more difficulty you get in.
We need medicine to change, to listen to patients, and engrave within medical schools more intersectionality with disability and feminist theory, so they can become more critical and adaptable when faced with the unknown.
This means developing wisdom; a path which also takes courage, compassion and humility but which can clear the fog.
Featured image via the Canary
