Turkish researcher, Hüseyin Çaksen, recently discussed in an editorial the possibility that MS is a 'punishment from Allah'. What is your take on this?
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.
I think it is useful for caregivers to understand, if not empathize, with patients facing a disease of unknown origins with treatments not readily accessible and without clear explanations of mechanics & function resulting in symptoms that worsen over time and with dehumanizing effects like gait dysfunction and bladder/bowel control. It is not difficult to acknowledge that religion/similar could be used to provide context.
If you’re Irish Catholic as I am, you may recognize that personal guilt and shame were often linked to illness. I have intellectually grown out of it, but the seeds are deeply sown and can get in my way.
I have no problem with someone expressing their beliefs but I feel there is no place for articles like this in medical journals. I believe these should be left to science and facts. I personally believe the world would be a much better place if we moved away from Religion.
But how do you deal with the problem in clinical practice if you don't have a discourse about the issue? We the medical and scientific community ignored CCSVI and ended up with egg on our face.
I am a Muslim and i am very disappointed about the article. In some Muslim communities some people may feel ill health as a punishment however this is not taught in Islam and its more of a cultural issue. I think culture often gets mixed up with religion which then complicates it all.
I have empathy for those who feel MS is a punishment from God and to have no one to guide,challenge or encourage them to think differently.
Slightly off point, is there any discussions on here about Ramadan/fasting.
Cancelling people is out of control the last few years. I can understand how some people would be "outraged" by the conclusion that MS is a punishment, but I can also understand if someone came to that conclusion, due to their religion or beliefs. People need to calm down. We need to take more time to understand one another. I went to physical therapy with a women who said we had MS as a punishment because Eve ate the apple from Adam. That was in Minneapolis, MN. I just said, interesting. I grew up in a secular home. I don't have any religious affiliation. I'd say my worldview is that of Naturalism. I believe patients should make their own decisions how they want to treat diseases. Hopefully they have access to all the information at hand to make a decision, and the resources to treat as desired. But that is a real privileged opinion from someone who lives in North America with excellent healthcare at the ready. A huge majority of the world doesn't have the luxury to have so much free choice about their medical decisions. That privilege is not lost on me. I am truly grateful.
All that blah blah blah being said, as people are moving all throughout the world and countries are becoming more diverse, I think it would be important to at the very least to try and understand different worldviews, even if disagreed to. As a provider with the "job to help guide our patients and support them as best we can" I can see where that could be challenging. You want the patient to have the best outcome, but in the end, it's their life and their choice.
Sorry, I'm just rambling. As always, I appreciate you!
I think this is ah amazing article, raising very important questions. Many of the problems that patients have with medical professionals is the experience of not being heard or trusted and leaving appointments feeling devalued or belittled. It is essential that patients’ beliefs and view of the world is respected or they will disconnect from the medical professionals who are there to support them.
Your note hits very close to home for me. At 63, I feel as if my doctor has essentially given up on me. I have suggested it’s because he is almost exclusively focused on the classic neuro aspects of the disease and remarkably disinterested in the accumulation of disability and the collateral damage to my mental health. He kindly rolls his eyes at me.
I think this happens when we’re no longer on DMT. I was told that by a medical person, working with the DMT area of neurology is seen as “ sexy”. I think they meant, interesting. Where by us SPMSers are not so interesting 🙄
We’re in the hard slog of it…no major anythings which is very good news, I know. But I do worry about brain volume and about the % of MSers who die of UTIs…
Try not to worry. It can take us over. My sister had PPMS, she developed Sepsis, it was complicated, related to a med which I’m not totally sure was for MS, but could be used for it. For 4 days they treated her at home for UTI ( she had a catheter not from bladder), it was never a UTI, by the time she was hospitalised she was very sick. Point is, for 2 years I was terrified I’d develop it as I’m now the age she was. I wasted 2 years fretting, not fully living. Keep your brain challenged, politely challenge medics if you feel you need too. None of us know what tomorrow will bring…
Slightly off topic i am afraid but i have noticed recently that sitting under artificial light all day exacerbates my symptoms significantly. I do not feel the same when working from home where i received much more daylight. I know you use a special light yourself in the new office and i recall reading an article at some point about 3 bank tellers who worked in a room with no daylight where 2 of them went on to develop MS. Do you have any insight in to this issue please? or is it all irrelevant as it is god's plan (attempt to link to post!!)
can i also please agree with your point that no person with MS should be left behind.
But i think people like me - diagnosed before DMTs existed and now muddling along ARE left behind.
By the socalled Ms warriors, by neurologists, even by you (with your focus on the relatively simple q of newly diagnosed)
i had to argue for over a year to get a dmt - after decades of nothing - they wanted to give me poor efficacy - eventually i got kesimpta - tho told i was too old (im 60). its almost impossible to get more than 1-2 sessions NHS physio / hydro etc. theres no focus/ input on other co-morbidities from neurologists. and other specialists always say all issues are ms related and also decline input.
The South African situation is similar to that in India in many ways, and I could ramble on forever on many similar issues.
Society is hierarchical and unequal and divided in many different ways: wealth, class, castes education, religion, region, language, urban/rural, ... There are huge disparities in access to healthcare and quality of healthcare, both within the private sector and within the public sector.
Some people are unbelievably wealthy, some are unbelievably poor, and there are people at every level in between. So almost everyone could feel cognitive dissonance at their relative privilege, and simultaneously think about their relative lack of privilege.
People in all classes of society and with all levels of education believe all sorts of things.
For example, that Ayurveda (the ancient Hindu medicine system) and other such systems are better than 'Western' allopathic medicine; that breathing exercises and yoga can get rid of any disease; that diseases (even something like MS) are a result of poor lifestyle choices or caused by something you did or for something your parents did, either in this life or an earlier life; that depression and other 'so-called mental illnesses' are excuses for something or the other; and many more.
Such beliefs cause many problems. They definitely affect whether and where/from whom people seek treatment.
I thought this was a thoughtful and cogent column. I find your viewpoint valid. I understand knee jerk reactions, however one thing is it appears that some of this practitioner’s own patients believe this. No matter what culture, beliefs are beliefs. Perhaps I’m an outlier, but I come from a background of atheists that nonetheless were the products for generations of strict Roman Catholics, and that sticks. (In his death, I found my father believed in fate after he lapsed into his first language. I was shocked.) Long ago in their villages, the ancestors went to “the old woman in black” and then they’d duly go to pray in churches. It takes all kinds. Sociology is huge in treating and understanding the whole person, as I learned when I was counseling and litigating. I appreciate that you don’t fire the patient, even if you don’t agree with their seemingly unorthodox views. And, I am grateful for your empathy for us all. Safe travels!
As a professional background in ethnography within health and social care I firmly think the article needs to be published. As is so common journalists have misled the public and effectively ruined the career of a social scientist in one swoop. Different cultures and beliefs are often built around a complex system of historical aspects which become engrained in the everyday logic of decision-making. People are not logical and who are we to judge the merits or otherwise of the decision-making process? Whilst we may shun the values which others hold (and that includes those who prefer to spend large amounts of money following the guru advice of other "experts") we have to start from the point of their belief and acknowledge this. I think it is good medicine to agree to disagree but come up with a "plan B; ie. if scans show new activity then consider DMDs) than dismiss a patient. Wether it is right during these times of rationioning of key resources, such as MRI scans, is another matter since my concern is how many others will waiting whilst this group of patients have regular 6 month MRI scans?
That said, I do think the real villians in this are the individuals who tout cures with certain diets, complex combinations of unproven supplements and foster a sense of failure among those who experience progression. They are making a hell of alot of money from people with MS. They need regulation and sanctions not the author of articles which highlight alternative cultures of understanding health and illness.
Your last comment about the 'real villains' is spot on. I have felt such disappointment and self-loathing in the past when I can't achieve results I want like others I see or read about. But I learned some time ago that if there is money involved in a 'cure' or some type of 'success,' then be very careful. Very good points, Fiona. Hear, hear!
Evangelical Christians and New Age gurus believe similar things, espousing unfounded causes for complicated diseases. I have been told that my MS was God's punishment at one point (from evangelicals), as well as told that it stemmed from me hating my body (not true), not having a good relationship with my father (even though I had a great relationship with him!), and for not healing negative though energy from when I was 0-6 years old (from the New Age types). People ascribe to dogma what they don't understand.
and it is said that if you bear burdens, that will raise your standing with Allah - which is always a good thing.
the other verses i would like to aim you at is within fatiha - the very start in the quran. its repeated in each of the five daily prayers. in it Allah is described as Ar-Rahman Ar-Rahim - often translated as the Most Gracious and Most Merciful - but maybe they can be considered as two sorts of merciful - you can see that rahman and rahim are related words - they link with rahma womb
What an interesting and very important article , your explanation fantastic , loved it !
I need to re-read and properly digest plus read the referred article before commenting properly, but just great 👍 insightful and something many can reflect & learn from
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.
I think it is useful for caregivers to understand, if not empathize, with patients facing a disease of unknown origins with treatments not readily accessible and without clear explanations of mechanics & function resulting in symptoms that worsen over time and with dehumanizing effects like gait dysfunction and bladder/bowel control. It is not difficult to acknowledge that religion/similar could be used to provide context.
If you’re Irish Catholic as I am, you may recognize that personal guilt and shame were often linked to illness. I have intellectually grown out of it, but the seeds are deeply sown and can get in my way.
MS is not only an intellectual endeavor.
I have no problem with someone expressing their beliefs but I feel there is no place for articles like this in medical journals. I believe these should be left to science and facts. I personally believe the world would be a much better place if we moved away from Religion.
But how do you deal with the problem in clinical practice if you don't have a discourse about the issue? We the medical and scientific community ignored CCSVI and ended up with egg on our face.
I am a Muslim and i am very disappointed about the article. In some Muslim communities some people may feel ill health as a punishment however this is not taught in Islam and its more of a cultural issue. I think culture often gets mixed up with religion which then complicates it all.
I have empathy for those who feel MS is a punishment from God and to have no one to guide,challenge or encourage them to think differently.
Slightly off point, is there any discussions on here about Ramadan/fasting.
Many thanks
Cancelling people is out of control the last few years. I can understand how some people would be "outraged" by the conclusion that MS is a punishment, but I can also understand if someone came to that conclusion, due to their religion or beliefs. People need to calm down. We need to take more time to understand one another. I went to physical therapy with a women who said we had MS as a punishment because Eve ate the apple from Adam. That was in Minneapolis, MN. I just said, interesting. I grew up in a secular home. I don't have any religious affiliation. I'd say my worldview is that of Naturalism. I believe patients should make their own decisions how they want to treat diseases. Hopefully they have access to all the information at hand to make a decision, and the resources to treat as desired. But that is a real privileged opinion from someone who lives in North America with excellent healthcare at the ready. A huge majority of the world doesn't have the luxury to have so much free choice about their medical decisions. That privilege is not lost on me. I am truly grateful.
All that blah blah blah being said, as people are moving all throughout the world and countries are becoming more diverse, I think it would be important to at the very least to try and understand different worldviews, even if disagreed to. As a provider with the "job to help guide our patients and support them as best we can" I can see where that could be challenging. You want the patient to have the best outcome, but in the end, it's their life and their choice.
Sorry, I'm just rambling. As always, I appreciate you!
I think this is ah amazing article, raising very important questions. Many of the problems that patients have with medical professionals is the experience of not being heard or trusted and leaving appointments feeling devalued or belittled. It is essential that patients’ beliefs and view of the world is respected or they will disconnect from the medical professionals who are there to support them.
Your note hits very close to home for me. At 63, I feel as if my doctor has essentially given up on me. I have suggested it’s because he is almost exclusively focused on the classic neuro aspects of the disease and remarkably disinterested in the accumulation of disability and the collateral damage to my mental health. He kindly rolls his eyes at me.
I think this happens when we’re no longer on DMT. I was told that by a medical person, working with the DMT area of neurology is seen as “ sexy”. I think they meant, interesting. Where by us SPMSers are not so interesting 🙄
I agree with you though I’m still on Ocrevus.
We’re in the hard slog of it…no major anythings which is very good news, I know. But I do worry about brain volume and about the % of MSers who die of UTIs…
Try not to worry. It can take us over. My sister had PPMS, she developed Sepsis, it was complicated, related to a med which I’m not totally sure was for MS, but could be used for it. For 4 days they treated her at home for UTI ( she had a catheter not from bladder), it was never a UTI, by the time she was hospitalised she was very sick. Point is, for 2 years I was terrified I’d develop it as I’m now the age she was. I wasted 2 years fretting, not fully living. Keep your brain challenged, politely challenge medics if you feel you need too. None of us know what tomorrow will bring…
Thank you. What you say is very true.
Slightly off topic i am afraid but i have noticed recently that sitting under artificial light all day exacerbates my symptoms significantly. I do not feel the same when working from home where i received much more daylight. I know you use a special light yourself in the new office and i recall reading an article at some point about 3 bank tellers who worked in a room with no daylight where 2 of them went on to develop MS. Do you have any insight in to this issue please? or is it all irrelevant as it is god's plan (attempt to link to post!!)
I will do a separate newsletter on light and artificial light.
can i also please agree with your point that no person with MS should be left behind.
But i think people like me - diagnosed before DMTs existed and now muddling along ARE left behind.
By the socalled Ms warriors, by neurologists, even by you (with your focus on the relatively simple q of newly diagnosed)
i had to argue for over a year to get a dmt - after decades of nothing - they wanted to give me poor efficacy - eventually i got kesimpta - tho told i was too old (im 60). its almost impossible to get more than 1-2 sessions NHS physio / hydro etc. theres no focus/ input on other co-morbidities from neurologists. and other specialists always say all issues are ms related and also decline input.
so definitely left behind.
look at the epidemiology - and im not alone!
The South African situation is similar to that in India in many ways, and I could ramble on forever on many similar issues.
Society is hierarchical and unequal and divided in many different ways: wealth, class, castes education, religion, region, language, urban/rural, ... There are huge disparities in access to healthcare and quality of healthcare, both within the private sector and within the public sector.
Some people are unbelievably wealthy, some are unbelievably poor, and there are people at every level in between. So almost everyone could feel cognitive dissonance at their relative privilege, and simultaneously think about their relative lack of privilege.
People in all classes of society and with all levels of education believe all sorts of things.
For example, that Ayurveda (the ancient Hindu medicine system) and other such systems are better than 'Western' allopathic medicine; that breathing exercises and yoga can get rid of any disease; that diseases (even something like MS) are a result of poor lifestyle choices or caused by something you did or for something your parents did, either in this life or an earlier life; that depression and other 'so-called mental illnesses' are excuses for something or the other; and many more.
Such beliefs cause many problems. They definitely affect whether and where/from whom people seek treatment.
I thought this was a thoughtful and cogent column. I find your viewpoint valid. I understand knee jerk reactions, however one thing is it appears that some of this practitioner’s own patients believe this. No matter what culture, beliefs are beliefs. Perhaps I’m an outlier, but I come from a background of atheists that nonetheless were the products for generations of strict Roman Catholics, and that sticks. (In his death, I found my father believed in fate after he lapsed into his first language. I was shocked.) Long ago in their villages, the ancestors went to “the old woman in black” and then they’d duly go to pray in churches. It takes all kinds. Sociology is huge in treating and understanding the whole person, as I learned when I was counseling and litigating. I appreciate that you don’t fire the patient, even if you don’t agree with their seemingly unorthodox views. And, I am grateful for your empathy for us all. Safe travels!
As a professional background in ethnography within health and social care I firmly think the article needs to be published. As is so common journalists have misled the public and effectively ruined the career of a social scientist in one swoop. Different cultures and beliefs are often built around a complex system of historical aspects which become engrained in the everyday logic of decision-making. People are not logical and who are we to judge the merits or otherwise of the decision-making process? Whilst we may shun the values which others hold (and that includes those who prefer to spend large amounts of money following the guru advice of other "experts") we have to start from the point of their belief and acknowledge this. I think it is good medicine to agree to disagree but come up with a "plan B; ie. if scans show new activity then consider DMDs) than dismiss a patient. Wether it is right during these times of rationioning of key resources, such as MRI scans, is another matter since my concern is how many others will waiting whilst this group of patients have regular 6 month MRI scans?
That said, I do think the real villians in this are the individuals who tout cures with certain diets, complex combinations of unproven supplements and foster a sense of failure among those who experience progression. They are making a hell of alot of money from people with MS. They need regulation and sanctions not the author of articles which highlight alternative cultures of understanding health and illness.
Your last comment about the 'real villains' is spot on. I have felt such disappointment and self-loathing in the past when I can't achieve results I want like others I see or read about. But I learned some time ago that if there is money involved in a 'cure' or some type of 'success,' then be very careful. Very good points, Fiona. Hear, hear!
Evangelical Christians and New Age gurus believe similar things, espousing unfounded causes for complicated diseases. I have been told that my MS was God's punishment at one point (from evangelicals), as well as told that it stemmed from me hating my body (not true), not having a good relationship with my father (even though I had a great relationship with him!), and for not healing negative though energy from when I was 0-6 years old (from the New Age types). People ascribe to dogma what they don't understand.
Im a Muslim - new to the faith - and definitely not a scholar. and cant get access to the editorial.
But always if you want to know about anything about Islam you must look at the Holy Quran.
this is the word of God - read it (in case you didnt know, the first revelation to the Holy Prophet Muhammad peace and blessings be upon him was to 'read' - repeated. although the prophet was illiterate : https://www.islamicity.org/11380/when-an-illiterate-man-was-asked-to-read/)
i was shocked and upset when i read of the editorial.
but then i thought of a very famous ayat Q2/186
about how Allah never gives anyone more to bear than they are able to
here is more of an scholarly explanation - thats what tafsir is: https://www.linkedin.com/pulse/burden-2286-2minutetafsir-talha-ghannam#:~:text=%22God%20does%20not%20burden%20any,(chapter)%20in%20the%20Quran.
and it is said that if you bear burdens, that will raise your standing with Allah - which is always a good thing.
the other verses i would like to aim you at is within fatiha - the very start in the quran. its repeated in each of the five daily prayers. in it Allah is described as Ar-Rahman Ar-Rahim - often translated as the Most Gracious and Most Merciful - but maybe they can be considered as two sorts of merciful - you can see that rahman and rahim are related words - they link with rahma womb
https://www.islamicity.org/14709/gods-mercy/
so, five times a days Muslims are reminded that Allah is merciful
any faults i have included here are mine, all the beauty and power - and mercifulness - is Allahs
What an interesting and very important article , your explanation fantastic , loved it !
I need to re-read and properly digest plus read the referred article before commenting properly, but just great 👍 insightful and something many can reflect & learn from
Wtf