Essay: The Dilemma of Caring and Doing Research for Severe ME/CFS Patients

Yann04 · Oct 1, 2024

Hi. I just wanted to share an essay my dad wrote that got included in a recent healthrising post.

The part written by my dad is quoted below:

Bedbound people affected by very severe ME/CFS live out of sight, like Schrödinger’s cat. That cat is in a closed box, simultaneously alive or dead, until the observer opens the box and sees it in one state or the other. Schrödinger’s thought experiment from quantum physics provides a powerful analogy for describing the paradoxical situation in medical contexts where observation and intervention can impact the condition being studied or treated. In the case of bedbound sufferers of ME/CFS, they are also out of sight and unknowable, as the act of observing might affect the state of their health.

Patients affected by very severe ME/CFS live in a box that is their bedroom, curtains drawn, lights out, earmuffs on, with little contact. The observers are the carers and doctors wishing to help ME/CFS patients, and medical researchers wishing to understand this illness. The interventions that they wish to do to evaluate the state of the patient contribute to making things worse: drawing blood, asking questions, transporting to medical facilities. There is a tension between the need for medical observation and the potential harm it can cause.

This paradox – that medical attention and care might make things worse – is caused by the pernicious nature of the illness, particularly its chief symptom PEM, or post-exertional malaise. Sufferers have a very small, limited quantity of energy available, and passing over that limit leads to feeling worse for days afterwards. Very severe cases merit urgent attention and care.

Yet, paradoxically, they are (1) the most invisible, the fully missing, and (2) the most at risk of interventions that degrade their condition. Among very severe cases of ME/CFS, a sufferer’s limits are so low that they can be exceeded by physical action like chewing a meal, stimulation from noise or light, or emotional stress (see this excellent autobiographical video called “The prison of M.E.”). In some cases they may not even be able to communicate, or only by a nod or a very short text message.

Due to PEM, well-intentioned medical interventions for patients have commonly made things worse, sometimes for a day or two, sometimes for long periods (Dafoe 2021; Hoffmann et al. 2024). My son has been laid low by ME/CFS. The trigger, around his 18th birthday, was an unremarkable Covid-19 infection followed a few weeks later by full anesthesia during a knee surgery for a ski injury. Initially, for over a year, he was functional but not well, for instance struggling to recover from knee physiotherapy sessions or too tired and nauseous to ski.

Then, back from college a year ago in summer, step-by-step his state declined to the point that he took to bed full-time. In early autumn, when he could still occasionally dig in his energy resources to talk and move around, a battery of medical visits (including the long-covid clinic and diverse specialists to exclude other possible causes) repeatedly degraded his state.

Part of it was physical exertion: sitting or standing up, getting to appointments, neurological walking tests. Part was the body’s reactions to excess physical stimulation: bright lights, sounds, bumpy medical transport, loud MRI machines, blood tests. And on top there was the mental exertion of filling forms, answering questions, and the heavy emotional stress of sometimes dealing with disbelief and dismissal (Sedgewick 2022, Monbiot 2024).

A particularly traumatic incident was being seen at a neuropsychology clinic, where the professor in charge berated my son for coming in a wheelchair, made him walk up and down the hallway for tests (which was more physical effort than in the previous months combined), and refused to speak to him if he lay down afterwards. Unsurprisingly, my son’s symptoms worsened afterwards; he has not been able to leave his room since November. Versions of such experiences are widespread across the ME/CFS community.

Patients are torn between wanting to learn more about their condition, seeing more experts, getting more medical attention… and a legitimate fear of the consequences. They don’t have the energy to bang on the doors of doctors to demand more help, and often cannot afford the after-effects of doctors’ attention and ministrations. As a result, they hide at home, in their box. They are missing from medical research and care, as emphasized in the very apt title of the ME/CFS public awareness campaign “Millions missing”.

In consequence, good, comprehensive data on severe and very severe cases of ME/CFS is hard to come by. Research on ME/CFS emphasizes the experiences of mild and moderate cases. And at an individual level, patients slip from the attention of the medical system, and are branded as uncooperative for skipping recommended tests.

As a result, there is an urgent need for more research on very severe ME/CFS but with new approaches. This research needs to be well-thought-out and sensitive to the needs of the patients: get as much information as possible with no disturbance. Researchers need to get data at a distance. When physical contact is necessary, they should go to the patients in their bedrooms, but quietly, calmly, in the dark, and as non-intrusively as possible. Attention could be given to developing explicit strategies to design research around the very careful extrapolation of data, results, and knowledge from mild and medium cases to the severe and very severe ones. Innovation is needed.

The same logic applies to the medical care of individuals with very severe ME/CFS. For those patients who can tolerate it, housecalls should be easily available, not exceptions necessitating difficult negotiations. I thank my son’s family doctor for this, as well as his orthodontist who so kindly came to our home to take imprints for new retainers when one broke. For those who cannot even tolerate such contact, medical systems need to train, encourage, and facilitate means for online, textual, asynchronous consultations with generalist doctors, specialists, and psychotherapists. A video call might be too much stress and mental stimulation for a patient with brain fog and other symptoms; a text to which one can respond slowly is sometimes the best they can do.

For family, friends, and nursing carers, Linda and Greg Crowhurst propose what they call a ‘moment’ approach, for maximizing the opportunity to meet each need tenderly. Their guide sets out a philosophy of care that is very respectful of the patients, their lived experience, and cognisant that “it is difficult to be cared for without causing additional problems.”

Unlike Schrödinger’s cat, which is both dead and alive, we know that while people affected severely by ME/CFS are missing, they are very much alive. They suffer from a terrible illness and the worst quality of life. They are in need of all the attention they can get, for research and for individual care – without the noise, the prodding, the poking, and the stress. We need to observe the cat without opening the box.

Regarding severe ME, there needs to be more funding and research into ME to provide the evidence and guidelines for clinicians to work from. There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision.”
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I was very grateful he wrote it and thought it was really well done.

Peter Trewhitt · Oct 1, 2024

Yann04 said: ↑

Hi. I just wanted to share an essay my dad wrote that got included in a recent healthrising post.

The part written by my dad is quoted below:

I was very grateful he wrote it and thought it was really well done.
Click to expand...

Such a clearly written piece. Thank you for sharing it.

Hutan · Oct 1, 2024

It is very good. I'm so glad you have a father who understands the situation @Yann04.

ME/CFS Skeptic · Oct 1, 2024

Agree, well written, thanks for sharing.

Binkie4 · Oct 1, 2024

Thank you for sharing this @Yann04. I am glad you have a father who understands the complexity of ME so well.

forestglip · Oct 2, 2024

Your dad sounds like a very compassionate and smart guy. Does he work in a science field?

Sean · Oct 2, 2024

Lovely and well informed piece.

This could be a good angle to help the broader public understand what is going on. Get close family and friends to describe their experience of dealing with their sick loved ones and seeing what happens to us.

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Essay: The Dilemma of Caring and Doing Research for Severe ME/CFS Patients

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