Christian Kull

Ok this isn’t a geography topic but it concerns this geographer’s son. I have written an essay about the absolutely frustrating, paralysing, and paradoxical challenges of caring for someone suffering from very severe ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), someone who is stuck in bed all day, sensitive to lights and sounds, with symptoms potentially worsening after any mental or physical exertion (including a doctor’s visit). My essay also touches on the challenges of doing research for cures and treatments – well illustrated just the other day when a study of a new drug for Long-Covid was abandoned at the University of Basel because not enough patients had the energy to come to the hospital five times for the necessary tests and follow-up (1, 2). To summarize: severe ME/CFS and Long Covid patients are too sick to be helped, and help makes things worse. Help! But don’t! What a paradox. I use the metaphor of Schrödinger’s cat to frame the essay, which was just published here on the HealthRising website, as part of Cort Johnson’s article on severe ME/CFS. I reproduce my essay below.

The dilemma of caring for and doing research for severe sufferers of ME/CFS – by Christian Kull

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) 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 20-year-old son has been laid low by ME/CFS. The trigger, around his 18^th 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 fulltime.   In earliy 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, Angelsen & Schei 2024, König et al. 2024, 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 videocall 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.

There, that’s the essay. Cort Johnsons’s article on HealthRising within which my essay is published highlights in a middle section how little formal healthcare guidelines for ME/CFS specifically address the severe and very severe cases of ME/CFS, and if they do, how they ignore questions of feeding and malnutrition (which was behind the tragic death of Maeve cited in his blog title). He also gives an overview of some of the nascent research that does address severe cases. It’s well worth a read, as are some of the sources I link to above. Thanks for your care.

References (with annotations). Note: I added a few since the publication of the essay on HealthRising.

• Anglesen A and T Scheu (2024) EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences. European ME Alliance (EMEA). An excellent report based on a survey of 11,000 people. Arild Anglesen is a sustainable development researcher in Norway whose work on environmental income and rural livelihoods I assign as reading in my classes.
• Dafoe W (2021) Extremely Severe ME/CFS—A Personal Account. Healthcare 9, 504.  As it says, a very personal patient narrative of one man’s struggles with severe ME/CFS.
• Hoffmann K et al. (2024) Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome.  Wiener Klinische Wochenschrift  136 (Suppl 5), 103–123. https://doi.org/10.1007/s00508-024-02372-y. A very useful, up-to-date German language review.
• König, RS, DH Paris, M Sollberger & R Tschopp (2024) Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study. Heliyon 10 (5):e27031. (see comments at end of bibliography)
• Monbiot, G. (2024) ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal. The Guardian, 12 March 2024. George Monbiot is a prize-winning British journalist whose books like Feral and Regenesis are important and eye-opening investigations of rewilding and food production that my students and I have read and debated.
• Sedgwick M (2022) All In Your Head: What Happens When Your Doctor Doesn’t Believe You. Woodside UK: Hawksmoor. A fantastic, tragic, well-written, biographical work by a well-known British adolescent novel writer, describing his struggle with the disease and associated voyages of discovery. It even describes a conversation with one of my dear colleagues from just down the hallway at UNIL. It grapples well with the struggle of recognition of this illness, and the doubt and frustration and uphill battle in the terrible somatic vs psychosomatic debate.
• Tschopp, R. et al. (2023a) Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): a preliminary survey among patients in Switzerland. Heliyon 9(5): e15595.
• Tschopp, R. et al. (2023b) Health system support among patients with ME/CFS in Switzerland. Journal of Taibah University Medical Sciences 18(4): 876-885. Three articles (these two plus the König one above) based on a survey of patients in Switzerland, by a team led by Rea Tschopp. She is a veterinarian and public health researcher focused on issues in the global south, but here turns her focus to ME/CFS in her home country. Tschopp et al. 2023b documents the poor knowledge of the disease among health care providers, which adds to patient distress and disease burden. König et al 2024 documents the mental health burden of not just the disease but also its stigmatization. Tschopp and I are both at times involved in the doctoral school “IGS North-South – Sustainable Development”.

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