The Tiger Who Came to Tea… and stayed

The severity paradox in ME and Long Covid

Today’s post is from our friends at Long Covid Advocacy – a social enterprise dedicated to shifting the paradigm for people with Long Covid and ME. Their core mission revolves around the principles of L.I.V.E. – Legislate, Investigate, Ventilate and Educate – to create an integrated, inclusive and informed community. You can find them on social media and here on Substack too!

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The experience of Severe or Very Severe ME, either personally or through family connection, changes one irrevocably.

Any degree of severity is profoundly life-altering. There’s nothing mild about ‘mild ME’, where you lose the ability to live an active life. If we take an analogy from ‘The Tiger Who Came to Tea’ by Judith Kerr, it feels as if the tiger came for tea and ate all the sandwiches and buns… until there was nothing left.

Yet, an inverse relationship occurs in ME. The greater the need, the fewer interventions one receives. The more the illness restricts your daily life, the less one is believed. We see a severity paradox, where injustice escalates fast.

Mind the language gap

Few, if any other, health conditions leave individuals so severely ill without a proportionate level of care. ME lacks disease prestige, impacting the personal and medical spheres. This post investigates key areas where the credibility gap exists.

The first is language, which Ella Barnard so eloquently discussed in #ThereForME article, ‘The hermeneutical injustice of ME’. In essence, we do not have the vocabulary to describe our experience and, therefore, our credibility dissolves.

Alan Moore, author and arch-wordsmith, postulates that language creates reality. In ‘Voice of the Fire’, he reconstructs the experience of a prehistoric man, with a vocabulary of only 50 words. Trying to relate the experience of Severe ME is like having a 50-word vocabulary in a language that has 500,000 words.

Research

One of the key reasons we don’t have this language and epistemic authority is that the research is lacking and, where it exists, hasn’t translated to clinical care. Doctors have neither grounding in the reality of the disease, nor emerging insights into its pathology, leading to a deadly knowledge gap.

Even where there is research, the people who are most severely ill are missing from studies. Medical research rarely includes those who are bed-bound, have profound sensory sensitivities and cannot socially interact.

Safe, inclusive, home-based research is needed to lessen this injustice. Steps are being made in Professor Ron Davis’s Severely ill Patient Study and in DecodeME. Everyone benefits from this inclusion. It is in the Severe/Very Severe category that the signals are likely to be at their strongest and therefore easier to detect.

Clinical disparities

It is common for those with Severe and Very Severe symptoms to be excluded from healthcare. The worse the illness, the harder the access. Why?

The first reason is structural. Home visits rarely exist in primary and secondary care, despite the extreme physical disability of Severe and Very Severe ME patients. Even if home visits are available, medical professionals simply do not know, or believe, that ME patients are incapacitated enough to require home care.

This doesn’t just apply to ME care, it includes other vital healthcare, such as eye tests, dentistry, smears, and mammograms. The severity paradox means we experience poorer health and mortality risks across the board.

Then there are the systemic issues. There is no NHS-commissioned service for Severe ME patients, and even doctors amenable to engaging have few frameworks or guidance. The lack of clear guidance can have fatal consequences, especially in regards to parenteral nutrition, as in the case of Maeve Boothby O’Neill.

There is also a lack of appropriate specialism at consultant level to take responsibility for people with infection-associated chronic conditions. NHS fatigue clinics are set up for those who are less sick, who fit more closely to the picture of the ‘ideal patient’. Many stay away due to the lack of effective help and historic (and current) harmful practices in clinical care. In essence, the more severe our symptoms, the more we are forced to exclude ourselves.

The British Association of Clinicians in ME/CFS (BACME)’s severely affected practice guide reflects patients’ lack of credibility and medical stigma in the eyes of many clinicians. According to the guide, severe symptoms such as photophobia do not warrant drug treatment but psychosocial desensitisation. The louder the tiger’s roar, the more we are told to be quiet.

Testimonial smothering

Kristie Dotson put forward the notion of ‘testimonial smothering’, a development of testimonial or hermeneutical injustice. In the context of Severe ME, we may restrict expressing the full nature of our experience due to the risk it invites.

For example, in order to be a reliable narrator, we lessen visual clues, as they can cause immediate suspicion. These can be sunglasses indoors, ear defenders, neck collars, or lying down. Instead of being seen as indicators of severity, they provoke the tropes that we are ‘overreacting’ or have ‘health anxiety’, risking disbelief or even psychiatric or social services referrals.

This extends to mental healthcare. The irony is that ME care is rife with psychological ‘care’. The illness has been perceived to be partially or fully caused by psychological factors. Due to this, we often repress our emotional state because we don’t want it to be interpreted as influencing our symptoms, thereby excluding access to appropriate mental health support.

It can get to the point where, if we are trying to access healthcare for conditions other than ME, we smother ME totally to increase our chances to be taken seriously.

We become caught in a Chinese finger trap. The more we struggle, the more we are captured by the severity paradox. In order to survive, we truncate our testimony. Trauma, and lack of capacity, may manifest as silencing ourselves totally and disengaging from all healthcare.

Advocacy

This smothering even extends to advocacy by some organisations representing patients, some of which do not actively represent those who are severely affected. In one case we’re aware of, one charity, when asked about this, stated that they didn’t want to scare people.

Safe participation is an issue too. This can be inherently difficult given the bone-crushing reality of Severe ME; yet, the safeguards, accommodations and protocols for including this cohort in advocacy or advisory roles rarely exist. It is vital that safe representation for the severely affected is strengthened across organisations. Having experience of Severe or Very Severe ME – whether directly or indirectly – changes one as an advocate, usually for the better.

Due to this lack of representation and lived experience, it is usually the patient community that steps up for crisis cases. Sam Pearce in The Sick Times discusses this and the need for a coordinated international emergency taskforce. We must do better here – the sickest should not need to put their health at risk in order to help others.

The tiger

For most, when a virus comes to visit, it is a temporary, if inconvenient, visitor. Yet, for as many as one in ten, this virus causes long-term disease. The tiger stays. It ravages our lives, eating everything in sight: our work, social and personal lives. Not just all the buns and sandwiches.

For the 25% of people with ME who are severely affected, this tiger symbolises an apocalypse. It sits in the corner of our bedrooms, ready to pounce if we dare to move, interact, turn the light on or attempt to live any part of life.

But, there is one complication. The tiger is often camouflaged. It is visible close up to ourselves and to those who live with us. But for those at a distance, alienated from the experience of ME, it becomes invisible.

Advocacy, therefore, is a communal act of creation. We attempt to create a language so the tiger is perceived by all. We cannot do this alone. We need those in authority, the researchers and clinicians, to dare to enter the room, to look the tiger in the eye and create the research and services we need.

This is why the #ThereForME campaign is important. It is rooted in the experience of Very Severe ME and is working to establish an NHS that is truly there for us all.

Final thoughts

In 2013, Alberto Brandolini coined his Law: “The amount of energy needed to refute bullshit is an order of magnitude bigger than that needed to produce it.” The ME health system has been inundated with pseudoscience that leaves Severe ME patients (compared with those more mildly affected) carrying the greatest burden, attempting to clear away misconceptions that negatively impact their care. A tough gig when your mitochondria aren’t working – and deeply unjust.

It is very human to turn away from extreme suffering. Given the choice, many will take refuge in denial. But there is too much at stake. We need the NHS and the government to step up with urgent funding to create the healthcare structure we deserve – we are already too many decades into this crisis.

In the words of Clare Norton, whose daughter Merryn Croft died in 2017 from ME:

“What other illness gives the least attention to the most affected?”