Although, I agree with all of this and have followed this through my life, it can make folks feel a failure when they do get cancer, MS and other conditions. Or when they deteriorate despite everything they do. All my close relatives have died of cancer, all my mothers family have had cardiovascular disease, many have asthma. For us and many others I suspect it is a faulty immune system at the basis of our health conditions and the rate of deterioration plus quality of life.
But it is not being promoted as a cure or the ultimate solution it is simply an adjunct to help improve MS outcomes. It is a complimentary therapy and not an alternative therapy.
I realise and it definitely is a positive comment. Unfortunately for my family, the pure genetics around an obviously faulty the immune system, which is both over reacting to certain stimuli (Asthma and allergies) and not reacting enough to faulty cell production (cancer) is a major factor for my family health and outcome, despite having a very healthy life style that's all. Something that is often ignored, we need to learn how to bring faulty immune systems into balance, a concept long held in traditional medicines, but neglected in modern reductionist medicine. And it is discouraging when I am treated as if I don't do my best, or not believed when I am.
Sorry what do you mean "really like!" ? Not getting into an argument with you but please don't make assumptions about people you don't know. As I say very good life style. As is mine.
There’s always going to be some level of life stress particularly when living with a chronic disease like ms. Bottom line, we have to want to do something about it. I worked out throughout covid even as my brother and mom passed and gyms were closed. If folks gave themselves a chance and experienced the benefits perhaps they would continue. It takes time. I’m fortunate to have a neurologist who encourages me to exercise and eat right etc. Very fortunate.
I agree that all of these life style behaviours help prevent other co morbidities. I’ve followed these throughout my life (previously working as a health professional until MS stopped me from working). Until I had HSCT I kept having relapses that put me back in a wheelchair and struggling to use my right arm. I knew that it was only a question of time before I had the relapse that I couldn’t rehabilitate myself from. I think that the big life style factor that is often missed out in Western medicine is controlling stress levels. I know that I used to have an excessive amount of stress in my life and wasn’t aware of the damage that it was doing until MS struck.
‘I suspect I am preaching to the converted and the question is how do we get this information out to those people who need it most?’
I don’t know where people get their information from, and it probably varies quite a lot depending on age, disease duration etc. Possibly the most reliable way to disseminate information is at a yearly MS appointment with neuro/MS nurse.
From a personal perspective I found online exercise classes run by MS Ireland invaluable; these were run by neuro physios for 8 weeks and aimed to cover exercise goals, for example couch to 5k. Each week had targeted exercises plus some theory on benefits or barriers to exercise. I think having free access to a neuro physio, who could advise on injuries or various challenges was invaluable in getting back to activities you didn’t think were possible after a diagnosis or relapse. I haven’t seen anything similar in the UK but there possibly is.
> Healthcare professionals should be able to look you in the eye and say “I am with you all the
> way”. Do they?
Certainly not. Pre-covid face-face annual mtgs with my neurologist typically consisted of me asking questions, watery responses given and been shown the 'way' to the door once the 15min mtg boundary had been reached!
Interesting read as always; hope the talk goes well on Friday.
I have PPMS and try to look after myself to the best of my ability i.e. don't smoke, slim, carry out a daily exercise routine which includes swimming once a week, limit my alcohol intake to a moderate amount at the weekends and eat a quality diet.
However, I'm aware that prior to covid, my walking, strength and balance were in a much better place and allowed me to achieve a higher level of independence. I believe the pandemic duration has taken it's toil and this has been partially eroded due to de-conditioning etc.
Speaking to other pwms, they confirmed they have experienced the same.
May I suggest that dealing with the effects of the pandemic would make for an interesting MS-Selfie newsletter.
Amen! Why can't someone do a multi-variable study of the impact of healthy lifestyle on PWMS? Is it because the System only accepts mono-variable studies? Thanks Dr. G!!!
If you are fairly slim, could you also have central adiposity or is that unlikely? In other words could you be thin on the outside but fat on the inside and if so how would you know?
Yes, the syndrome is called TOFI (thin outside and fat inside). It is a problem in metabolic medicine and is one of the reasons why BMI is so limiting.
I agree all the above is not the miracle solution for cancer and various illnesses. But can hopefully moderate your MS.
I really believe MS is genetics, and environmental exposure. Many in the military have MS, and I’m a dependent of a military family. My entire family has some sort of autoimmune disease that occurred after 20 years of moving around and living on various military installations. I believe water contamination, military housing contamination may have been a tipping point for us to become ill. My sister-in-law also developed MS
Also, a military brat, and then went on to serve herself in the military.
Eat Whole Foods, exercise, no smoking and little to no alcohol I believe is best , but obviously no guarantee in your outcome.
Of course, poverty might encompass most or all SDoH. War being anomalous. The well educated and the wealthy can be caught up in that scenario. Another factor which covers all the other factors, is lack of control. If someone feels they have little control over their life, they can be prey to poor health. Everything these 2 studies points out and the obvious conclusion that a healthy lifestyle is worth adopting, is generic. Good diet, housing, opportunities, personal freedom will contribute to less disease and better QoL and life expectancy. So why do we, as a society, seem drawn away from these better lifestyle choices? If we know why people don't always make them we'd go some way to knowing how to "convert" people. Unfortunately the heavy smoker, drinker or vegetable hater finds proselytising tedious. I think I understand or sympathise with that. It makes people feel guilty or cornered if they are called out. After all, they and we who might like them to adopt better choices ,are both making value judgements and that means the smoker, drinker or couch potato feels guilty. No-one enjoys this as it make people feel humiliated. It often drives someone who feels got at, to greater adoption of the practices that are harming them. Is it an intractable situation? I'm not sure, but I do know it's a heck of a job to jog someone off one set of tracks onto a healthier one.
"Another thing you can do is to ask your HCP to score themselves on these five factors"
My GP thinks it's unhealthy for me to not eat meat or dairy. He's seen my blood test results of course so knows my iron and B12 are absolutely fine. I do have macrocytic anaemia and I've had at least three blood tests to investigate this, hopefully the last one was for a blood film (as my consultant requested) but it was over a year ago now and he's not responding to my consultant's letters about it.
I'm not vegan though. My GP jumped to that conclusion too and started going on about how a vegan diet is unhealthy. I don't think he listened when I said I eat plenty of fish.
Although, I agree with all of this and have followed this through my life, it can make folks feel a failure when they do get cancer, MS and other conditions. Or when they deteriorate despite everything they do. All my close relatives have died of cancer, all my mothers family have had cardiovascular disease, many have asthma. For us and many others I suspect it is a faulty immune system at the basis of our health conditions and the rate of deterioration plus quality of life.
But it is not being promoted as a cure or the ultimate solution it is simply an adjunct to help improve MS outcomes. It is a complimentary therapy and not an alternative therapy.
I realise and it definitely is a positive comment. Unfortunately for my family, the pure genetics around an obviously faulty the immune system, which is both over reacting to certain stimuli (Asthma and allergies) and not reacting enough to faulty cell production (cancer) is a major factor for my family health and outcome, despite having a very healthy life style that's all. Something that is often ignored, we need to learn how to bring faulty immune systems into balance, a concept long held in traditional medicines, but neglected in modern reductionist medicine. And it is discouraging when I am treated as if I don't do my best, or not believed when I am.
Epigenetics. Look into it. What is your family's lifestyle really like?
Sorry what do you mean "really like!" ? Not getting into an argument with you but please don't make assumptions about people you don't know. As I say very good life style. As is mine.
There’s always going to be some level of life stress particularly when living with a chronic disease like ms. Bottom line, we have to want to do something about it. I worked out throughout covid even as my brother and mom passed and gyms were closed. If folks gave themselves a chance and experienced the benefits perhaps they would continue. It takes time. I’m fortunate to have a neurologist who encourages me to exercise and eat right etc. Very fortunate.
I agree that all of these life style behaviours help prevent other co morbidities. I’ve followed these throughout my life (previously working as a health professional until MS stopped me from working). Until I had HSCT I kept having relapses that put me back in a wheelchair and struggling to use my right arm. I knew that it was only a question of time before I had the relapse that I couldn’t rehabilitate myself from. I think that the big life style factor that is often missed out in Western medicine is controlling stress levels. I know that I used to have an excessive amount of stress in my life and wasn’t aware of the damage that it was doing until MS struck.
‘I suspect I am preaching to the converted and the question is how do we get this information out to those people who need it most?’
I don’t know where people get their information from, and it probably varies quite a lot depending on age, disease duration etc. Possibly the most reliable way to disseminate information is at a yearly MS appointment with neuro/MS nurse.
From a personal perspective I found online exercise classes run by MS Ireland invaluable; these were run by neuro physios for 8 weeks and aimed to cover exercise goals, for example couch to 5k. Each week had targeted exercises plus some theory on benefits or barriers to exercise. I think having free access to a neuro physio, who could advise on injuries or various challenges was invaluable in getting back to activities you didn’t think were possible after a diagnosis or relapse. I haven’t seen anything similar in the UK but there possibly is.
> Healthcare professionals should be able to look you in the eye and say “I am with you all the
> way”. Do they?
Certainly not. Pre-covid face-face annual mtgs with my neurologist typically consisted of me asking questions, watery responses given and been shown the 'way' to the door once the 15min mtg boundary had been reached!
Interesting read as always; hope the talk goes well on Friday.
I have PPMS and try to look after myself to the best of my ability i.e. don't smoke, slim, carry out a daily exercise routine which includes swimming once a week, limit my alcohol intake to a moderate amount at the weekends and eat a quality diet.
However, I'm aware that prior to covid, my walking, strength and balance were in a much better place and allowed me to achieve a higher level of independence. I believe the pandemic duration has taken it's toil and this has been partially eroded due to de-conditioning etc.
Speaking to other pwms, they confirmed they have experienced the same.
May I suggest that dealing with the effects of the pandemic would make for an interesting MS-Selfie newsletter.
Amen! Why can't someone do a multi-variable study of the impact of healthy lifestyle on PWMS? Is it because the System only accepts mono-variable studies? Thanks Dr. G!!!
If you are fairly slim, could you also have central adiposity or is that unlikely? In other words could you be thin on the outside but fat on the inside and if so how would you know?
Yes, the syndrome is called TOFI (thin outside and fat inside). It is a problem in metabolic medicine and is one of the reasons why BMI is so limiting.
I agree all the above is not the miracle solution for cancer and various illnesses. But can hopefully moderate your MS.
I really believe MS is genetics, and environmental exposure. Many in the military have MS, and I’m a dependent of a military family. My entire family has some sort of autoimmune disease that occurred after 20 years of moving around and living on various military installations. I believe water contamination, military housing contamination may have been a tipping point for us to become ill. My sister-in-law also developed MS
Also, a military brat, and then went on to serve herself in the military.
Eat Whole Foods, exercise, no smoking and little to no alcohol I believe is best , but obviously no guarantee in your outcome.
Of course, poverty might encompass most or all SDoH. War being anomalous. The well educated and the wealthy can be caught up in that scenario. Another factor which covers all the other factors, is lack of control. If someone feels they have little control over their life, they can be prey to poor health. Everything these 2 studies points out and the obvious conclusion that a healthy lifestyle is worth adopting, is generic. Good diet, housing, opportunities, personal freedom will contribute to less disease and better QoL and life expectancy. So why do we, as a society, seem drawn away from these better lifestyle choices? If we know why people don't always make them we'd go some way to knowing how to "convert" people. Unfortunately the heavy smoker, drinker or vegetable hater finds proselytising tedious. I think I understand or sympathise with that. It makes people feel guilty or cornered if they are called out. After all, they and we who might like them to adopt better choices ,are both making value judgements and that means the smoker, drinker or couch potato feels guilty. No-one enjoys this as it make people feel humiliated. It often drives someone who feels got at, to greater adoption of the practices that are harming them. Is it an intractable situation? I'm not sure, but I do know it's a heck of a job to jog someone off one set of tracks onto a healthier one.
"Another thing you can do is to ask your HCP to score themselves on these five factors"
My GP thinks it's unhealthy for me to not eat meat or dairy. He's seen my blood test results of course so knows my iron and B12 are absolutely fine. I do have macrocytic anaemia and I've had at least three blood tests to investigate this, hopefully the last one was for a blood film (as my consultant requested) but it was over a year ago now and he's not responding to my consultant's letters about it.
Re: "My GP thinks it's unhealthy for me to not eat meat or dairy. "
Yes, it can be which is why I did this blog post on the issue a few years ago.
https://ms-selfie.blog/2019/03/06/calling-all-vegans/
I'm not vegan though. My GP jumped to that conclusion too and started going on about how a vegan diet is unhealthy. I don't think he listened when I said I eat plenty of fish.
Thk very well said. Health and life balance is a key.. Love yourself and we will get through it.. In today world.. Gavin did you see the BBC https://www.bbc.co.uk/news/health-61042598?at_medium=custom7&at_campaign=64&at_custom3=BBC+News&at_custom4=7AE824F4-BBB6-11EC-83DA-C5B8BDCD475E&at_custom1=%5Bpost+type%5D&at_custom2=facebook_page
On how people all have this gene.. It would be nice to hear from you on this.. Cheer 👍
Did you listen to the show on Radio 4; he interviews me and I am quoted in the article.
Send me the link pls
https://www.bbc.co.uk/programmes/m00154bt