Is MS a punishment from Allah?
Turkish researcher, Hüseyin Çaksen, recently discussed in an editorial the possibility that MS is a 'punishment from Allah'. What is your take on this?
I am writing this newsletter on a flight to Cairo to attend a meeting as an invited guest of the Egyptian Neurology community. The fact that I am travelling to Egypt, a country that is predominantly made up of Muslims, may be relevant.
When I was a first-year medical student at Wits (University of the Witwatersrand) in Johannesburg, South Africa, we had a course on medical sociology, which primarily concerned the relationship between social factors and health. Why did we need training in medical sociology? South Africa was, and remains, a very complex country and our medical school rightly thought we needed to be equipped with a broad worldview to cope with what was to come in our training. On reflection, studying medical sociology opened my mind, making me a better doctor and person. Understanding people with a different worldview makes you more empathetic and has defined many of my thoughts on how I practise medicine.
First, some background. South Africa is arguably the most unequal country in the world. It is a high-income, middle-income and low-income country in one. The private sector provides state-of-the-art healthcare equivalent to that in most high-income countries, provided you are insured or wealthy. Then, a low-middle income majority who can’t afford private healthcare but have access to a state-funded healthcare system that provides a lower level of care. Finally, there is an undefined group who are low-income and mainly consist of illegal immigrants who are in South Africa from surrounding countries. These immigrants are mainly economic migrants, with some being political refugees. Then, there are a large population of homeless people, who are often excluded.
When I was in my 5th and 6th year of medical school, a group of fellow students and I used to run the ‘Twighlight Clinic’ in Hillbrow, a suburb of Johannesburg. This was a walk-in clinic for Johannesburg's homeless and street orphans. We provided basic primary care and support, for example, immunisations, food, books, clothing and fresh blankets to the poorest of the poor. The clinic relied on donations from the public and companies. Private pharmacies and pharmaceutical companies donated medication for our small on-site pharmacy. Most medications we dispensed were close to or past their expiration date. Although we were meant to be supervised by qualified doctors from the Department of Community Medicine, on many occasions, the supervising doctors would not turn up, and we had to get on with things as best we could. We diagnosed and managed strep throat, impetigo, scabies, scarlet fever, tuberculosis, malnutrition, sexually transmitted diseases and other diseases of poverty. Most, if not all, of the street orphans were addicted to glue or solvents. Some of the street children we saw were frankly psychotic, which would allow us to get a psychiatrist to section them and admit them to a psychiatric hospital.
Similarly, we used to attend a University-supported rural clinic on a Saturday morning in a squatter camp on the outskirts of Johannesburg. The problems here were slightly different, with many women needing antenatal care and a large population of sick children. Malnutrition was also rife. We often had to sign-post patients to local clinics and hospitals with referral letters, and most Saturdays, we would transport patients in our own cars to local accident and emergency departments.
Another experience was the medical school-run clinic inside Alexander Township. I would volunteer for the Saturday shift. Under apartheid South Africa, the townships were for non-whites—many single migrant workers who worked in heavy industry supporting gold mining lived in the Townships surrounding Johannesburg. There were a large number of single men with a heavy drinking culture, which resulted in a lot of fighting and, on occasion, faction fighting between different tribes. The case mix at the Alexander Township clinic was dominated by trauma. This is where I first learnt how to resuscitate patients and how to suture stab wounds. Many patients had to be red-lighted to hospitals for ‘non-whites’ by ambulance.
As a medical student and trainee in apartheid South Africa, I spent time in both ‘white’ and ‘non-white’ teaching hospitals. These two types of hospitals were differently resourced and managed and mirrored what has replaced them post-apartheid. Before the dismantling of apartheid, hospitals for white South Africans were like high-income private healthcare, and the hospitals for non-whites were overcrowded and poorly resourced. As medical students and trainees in South Africa, we had to learn to live with cognitive dissonance, i.e., how to reconcile, live, and work in an environment with such large disparities. These disparities were also cultural, and our medical sociology course in the first year was designed to prepare us for this. Many South Africans used and still use traditional or non-Western medicine, and asking about this was a routine part of the medical history.
Underlying these disparities in healthcare were all the usual social determinants at play, i.e. gender, ethnicity, poverty, education, health literacy, agency, the lived environment, etc. One that is rarely discussed is a religious or cultural worldview or belief system of health and disease. Many South Africans don’t subscribe to a ‘Western model’ of disease, are very superstitious and believe in supernatural phenomena. In other words, being diagnosed with a disease such as multiple sclerosis could be a punishment.
My medical training prepared me for these sorts of issues, which is why I was so surprised by the outrage in the lay and scientific press and on social media when a Turkish researcher, Hüseyin Çaksen, recently discussed in an editorial the possibility that MS is a 'punishment from Allah'. Please see “Turkish researcher sparks outrage by claiming MS is a 'punishment from Allah' (MailOnline 12-Jan-2024)”.
After reading the editorial myself, I think people have missed the point. He did not claim that MS is always a punishment from Allah, although this is possibly his personal position, but he makes the point that many of his patients think this to be the case. I have little reason to doubt him based on my personal experiences from training and working in South Africa. Instead of outrage and the cancellation of Hüseyin Çaksen by retracting his papers, we should open a dialogue and try to reconcile these different worldviews of MS. Ignoring a religious worldview of disease causation doesn’t help the person with MS who may have this belief.
I learned from the traditional healers (aka Sangomas, Shaman or ‘witch doctors’) in South Africa that traditional and Western medicine can coexist and live side-by-side with each other. There is a need for them to coexist. I worry that some of us in the medical profession have a polarised view on this issue. Surely, one of the principles underpinning the management of MS is that ‘no person with MS should be left behind’. And that includes pwMS with a different worldview to you. Do you agree?
You can access the controversial MS editorial here: Hüseyin Çaksen. Patients' Supernatural Beliefs on Cause of Multiple Sclerosis. Journal of Pediatric Neurology 17-04-2023.
Another example of this is the lifestyle warriors who think (or believe) they can manage their MS with diet and other lifestyle modifications and eschew disease-modifying therapies. Instead of discharging these patients from my practice, I enter into a prolonged dialogue and treat them as high-risk patients with more frequent monitoring. The deal I will make with them is to do six monthly MRI monitoring scans, and if they show no new lesions, then their lifestyle programme is working. However, if there are new lesions, it tells us that their lifestyle programme is not sufficient to control their disease. Before doing this, I try to get them to agree that if there are new lesions, they should start treatment, and most agree. What I don’t do is tell these patients, with an alternative worldview to mine, that they are wrong. Other scenarios that create cognitive dissonance are the anti-vaxxers, people who have procedures done for CCSVI, those who use quack therapies and even some patients with advanced MS who travel abroad for AHSCT. Our role as MS HCPs is to help guide and support our patients as best we can.
I would be interested to hear your perspective on the issues raised by this case and how we, as an MS community, must deal with them. I have laid out my stall.
Thank you.
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
My only comment is that I can understand why some patients (if not medical professionals) might feel as if MS were some kind of divine punishment. Speaking from experience, advanced, refractory MS is a truly, almost incomprehensibly, appalling disease.
Wooh. Heavy topic indeed, initially I felt anger at the suggestion until I fully read your article. I understand why some people may think that it is a punishment, based on a believe system or a doctrine put upon them as a child. I was sent to a Sunday school as a child, and although parents did not attend church there was a strong attitude of God is watching and will punish you if you misbehave. ( lazy parenting) I had this fear until well into my late 20s. I had 2 baby losses, and thought it was punishment. I don’t know what woke me up, but I educated myself. I suppose for my self preservation. I have also had it suggested by a Practising Buddhist, that MS could well be punishment for something I did wrong in a previous life. I came to the conclusion religious believe is bad for my mental health.
I have to say I get irritated by folk with MS who Insist on being Evangelical over diet and exercise. I saw an article in the paper on an MSer who had taken on an epic cycle challenge. I felt both delighted for her but annoyed, as it came over, that if we all did more exercise we could improve our MS outcomes. These articles need balancing. Maybe she was in remission, maybe in 5 years things will change for her, maybe not. but papers love a good story.
I think “ Punishment from Allah ought to be published. It challenges our perceptions and makes us consider other people’s experiences. If we don’t read other people’s experiences & believes how can we understand each other. Doesn’t mean we subscribe to their view.