It is up to individuals to choose whether or not they want their obesity treated, in the same way, they have the right to have their MS treated or not. Do you agree?
I feel many doctors/neurologists are afraid to breach the topic of obesity with their patients out of fear of being labeled "insensitive". This is more of a cultural issue. Obese or overweight people have gone their whole lives being made fun of because of their weight by jerks. They will NOT be offended if a HCP talks honestly and openly about ways to bring down the weight/BMI of a patient out of love and genuine concern for their health.
Can only be a good thing that Neuros and all doctors involved with someone’s care talk to them about the changes that could come about from losing some weight, not to make them feel bad about themselves but as part of a duty of care towards them.
I think that with such a debilitating illness as MS is, the whole package of lifestyle choices & medication should be taken up by the neuro. Every little bit that could help the outcome should be done, or at least the patient should be informed about them. Naturally, it is up to the patient which bits they follow, but I think that _every_ doctor, not just neuros, should always emphasise the effect of lifestyle choices to the patient. Why rely solely on medication when medication & healthy lifestyle gets better results?
It must be really hard as a doctor to see peoples negative lifestyle choices impact their health whilst trying their best to improve things with medical intervention, like swimming in treacle! I totally agree that doctors shouldn’t shy away from making the entire equation crystal clear to patients - however there does need to be adequate support in place to facilitate change, as I’m guessing many people feel impotent, exhausted and overwhelmed with chronic disease and need the emotional support and guidance beyond the appointment. Things like a niche MS weight watchers group for example.
Forgive me for the psychoanalysis: It sounds like you think people are offended by the discussion of weight because of classic reasons like being teased or being called unattractive, but for people with chronic illness, there's a pretty different mindset at work. Many people have dealt with doctors who won't take their real, serious conditions seriously because they write them off as "just lose some weight". And people who struggle with mobility can feel like being told to lose weight is not real advice because it's hard for them to exercise (and possibly prepare healthy food!). Plus a lot of folks have doctors whose advice begins and ends with "eat less", which doesn't work without a plan! Or doctors/systems who won't give patients surgical/pharmaceutical support for weight loss because it's more noble to suffer. I'm sure you're right about the science, but for the first 30 seconds, a doctor telling you to lose weight for your health sounds exactly like one telling you the same thing because they're lazy and/or biased against fat people.
I also think that "lose weight" is not very motivational compared to "if you lose 10lb it will be easier for you to get out of bed". I realized the other day that while doctors have been telling me to lose weight for years, I have never been told HOW MUCH or how much they think I should weigh for my frame.
I think this is a very interesting topic. I think a lot of people who are overweight might feel very reluctant going to their doctors just because they know that the first thing they will hear when discussing any issues is "loose weight". "Oh hello I got some new potential MS symptoms", "oh you should loose some weight". I have heard this a few times in the MS community, and certainly as someone who was overweight for most of my life I heard it myself. I find now when I am less overweight, I don't get this as a first comment when I see HPs for anything.
Although clearly obesity is an issue, when people feel they are not taken seriously because of being overweight it becomes an issue of not even bothering to go to the doctors. My mum who was a heavy smoker was the same. She suffered with extreme back pain due to a slipped disk but avoided going to the doctors for any treatment because of the smoking elephant in the room.
So yes, I don't really know what the right approach is here, but I think shaming is extremely hard to deal with. And it is very sad to think that people avoid asking for help because they worry about feeling this way.
I think getting to or maintaining an optimal weight is fundamental in helping pwMS (or anyone) to feel the best they can. But changing food habits is a bit like changing smoking, people have complex webs of denial and reward, comfort and control and it’s really hard to break through that and find what works for an individual and so a lot of people remain in stasis even when they would love to get rid of the burdens and impact of doing nothing about it. I think to tackle holistically, like you do in these newsletters; to empower people to get in control of sleep, medication, optimise whatever they feel they can, will all count towards finding that motivation and confidence to tackle the thing they might be avoiding such as optimal weight. My personal motivation is a healthy dose of fear, thanks to Covid I found the motivation to get back to ideal BMI after a decade of drifting!
Losing weight has been one of the best decisions I’ve ever made, and it started happening before I was diagnosed.
About a year and half ago I decided I had to change my lifestyle and my diet; I’ve never eaten ‘bad’, but I think some of my quantities and food selections were way off.
I made a lot of minimal but crucial changes that have allowed me now to lose 25 lbs and reach the 175 lbs in a year or so. That is not my optimal weight, but I’m very very close and now I’m not considered obese, I’m just slightly overweight.
I exercise every morning with a brisk walk and sometime jogging, and I can confirm that exercise makes you feel lighter, better, and sharper.
Losing weight is not easy but I think it’s all about mentality and lifestyle changes. Just by having a healthy lifestyle you’re going to lose weight sooner rather than later, and you’re going to feel great about it.
So yes, Dr. Giovannoni, I agree that we should adopt better and healthier routines so we avoid future consequences + we minimize the damage MS could cause.
I think that the patient should be given all of the relevant information about their condition because not everyone is capable of finding things out for themselves, or of understanding the impact those things have on their condition. Once they have been given the information? Well, you can lead a horse to water.........
There are so many people who actually don't know this stuff. Being given the information from someone they trust (eg their doctor) is all some people need to make the right lifestyle changes.
I know i have a few more pounds to lose. My mobility issues are getting worse by the minute it seems some days. this past year i have graduated from crutches to a walker when I leave the house for appointments. I can no longer walk the 20 feet to my mailbox with one crutch... I need both now. Here's the thing tho, I have been losing weight. I am done a little over 20 pounds in the last 3 months and i have another probably 25 to go. I have been struggling badly with iron deficient anemia to the point my primary care doctor is convinced I have some internal bleeding somewhere.. (i do not) I have been chronically anemic since I was pregnant with my daughter. She turned 35 yesterday. I am now taking a liquid iron supplement and Vit C, B Complex with Folate and a D3 supplement. Hopefully this will right my levels. i dont eat meat except occasionally will have chicken or fish... My neurologist knows whats happening and the only person concerned with my weight at the moment is my pain doctor.. He has always been concerned with my weight. If i gain 4 pounds he freaks out.. LOL.. when my son died I lost 60 pounds.. I gained back 40 of it.. now i lost 20 of that so IDK.. I cant get out and run around the block. I am EXTRENELY heat sensitive as well so when i get over heated I get dizzy, nauseous and i am done.. I also live in Florida so today it was close to 80 degrees outside.. LOL.. anyway.. i am ashamed of my weight.. I hate it.. I dont like being as heavy as I am.. I just dont know how to get it off for good
I catch hell for this all the time, but it’s usually because no one really listens to what I’m saying: the things like the commercials with the overweight models are not helping… they’re trying to sell something. And the terms like ‘plus size’ make it worse. It’s good that people aren’t embarrassed about their bodies, but being unrealistic is not good,
Not trying to be difficult, but are you really asking for advice for your question? Because what you wrote lays everything out really well, and here in this newsletter you are basically ‘preaching to the choir.' Have you said all these things, just as you have here, to the people who are/were objecting to your writing? Or have you explained your stance, just the way you explained here, to the general public? I, for one, don’t see anything really wrong with what you wrote here, nor any language that really could be mistaken for 'code' for something else.
Nowadays there’s an unfortunate confluence of factors that make being a doctor who cares to push for more… more difficult. The FOMO rush to acquire technology and [internet] access in the last twenty-five years, without much instruction on critical thinking while exploring the universe of opinions flooding the virtual universe, along with the world being fearful and constantly on edge leaves so many people primed for this unwarranted mistrust of doctors and scientists, and of science itself. Unfettered access to almost all information available to pretty much anyone, without much instruction on responsible use and critical thinking skills to help weed out junk and nonsense, left many thousands if not millions of people probably thinking they could figure out anything by reading abstracts and watching YouTube videos. It might seem like I am getting off the subject but I am really not. This is all part of the bigger problem of people that are fearful because they are inundated nonstop with information, and much of it is to take advantage instead of to help. So you, doctor, are trying to help people whose attention is being pulled away every moment by other people who want to dazzle them with bs to eventually sell them nothing of substance, instead of helping them have better lives like you try to do.
You have to turn their attention, and try to get them to trust you in this ludicrous environment. That’s the hard part.
Why wouldn’t we be interested/entitled to know about anything that is helpful, supported by evidence? As always it’s up to the individual what they do with that information.
I think the best advice can be given to me by my peers who have gone through the same process successfully. I don't need an HCP to tell me yet again the reasons to lose weight, give up smoking or take more exercise. I will listen to the advice of someone who has gone the pain and can tell me the advantages.
I gave up smoking eventually and with success 20 years ago, a group of us did it at the same time. None of us wanted to be seen as the loser. For the first time, aged 66 I must shed a few pounds or buy a new wardrobe.
Thank you for having backbone enough to take on this mission critical topic! No other change -- meds or otherwise -- than my diet (namely, eliminating dairy/casein) and weight management has made a difference in my clinical symptoms and day to day.
So, you need to be not too fat not too thin exercise daily follow the appropriate diet and then the illness won't progress? So no athletic slim person will be struck down in their prime and suffer a debilitating progression of their illness ? Well lets throw those drugs in the bin and get on that ketogenic diet
Taking control of the things you can by getting to an optimal weight, alongside other well known measures which improve your health and well-being, will put your physical body and mental health in the best possible shape to cope with whatever health conditions that happen to you - the things which you don’t have control over. But it’s also important to appreciate that obesity is a metabolic disease which influences your potential for many other things to go wrong - see the diagram Prof G posted. If you have a chronic disease like MS you would naturally be more likely to have better outcomes and cope better with that disease if you can tackle those things which make your body function poorly - such as weight, fitness, nutrition, sleep, stress.
I feel many doctors/neurologists are afraid to breach the topic of obesity with their patients out of fear of being labeled "insensitive". This is more of a cultural issue. Obese or overweight people have gone their whole lives being made fun of because of their weight by jerks. They will NOT be offended if a HCP talks honestly and openly about ways to bring down the weight/BMI of a patient out of love and genuine concern for their health.
Can only be a good thing that Neuros and all doctors involved with someone’s care talk to them about the changes that could come about from losing some weight, not to make them feel bad about themselves but as part of a duty of care towards them.
I think that with such a debilitating illness as MS is, the whole package of lifestyle choices & medication should be taken up by the neuro. Every little bit that could help the outcome should be done, or at least the patient should be informed about them. Naturally, it is up to the patient which bits they follow, but I think that _every_ doctor, not just neuros, should always emphasise the effect of lifestyle choices to the patient. Why rely solely on medication when medication & healthy lifestyle gets better results?
It must be really hard as a doctor to see peoples negative lifestyle choices impact their health whilst trying their best to improve things with medical intervention, like swimming in treacle! I totally agree that doctors shouldn’t shy away from making the entire equation crystal clear to patients - however there does need to be adequate support in place to facilitate change, as I’m guessing many people feel impotent, exhausted and overwhelmed with chronic disease and need the emotional support and guidance beyond the appointment. Things like a niche MS weight watchers group for example.
Forgive me for the psychoanalysis: It sounds like you think people are offended by the discussion of weight because of classic reasons like being teased or being called unattractive, but for people with chronic illness, there's a pretty different mindset at work. Many people have dealt with doctors who won't take their real, serious conditions seriously because they write them off as "just lose some weight". And people who struggle with mobility can feel like being told to lose weight is not real advice because it's hard for them to exercise (and possibly prepare healthy food!). Plus a lot of folks have doctors whose advice begins and ends with "eat less", which doesn't work without a plan! Or doctors/systems who won't give patients surgical/pharmaceutical support for weight loss because it's more noble to suffer. I'm sure you're right about the science, but for the first 30 seconds, a doctor telling you to lose weight for your health sounds exactly like one telling you the same thing because they're lazy and/or biased against fat people.
I also think that "lose weight" is not very motivational compared to "if you lose 10lb it will be easier for you to get out of bed". I realized the other day that while doctors have been telling me to lose weight for years, I have never been told HOW MUCH or how much they think I should weigh for my frame.
I think this is a very interesting topic. I think a lot of people who are overweight might feel very reluctant going to their doctors just because they know that the first thing they will hear when discussing any issues is "loose weight". "Oh hello I got some new potential MS symptoms", "oh you should loose some weight". I have heard this a few times in the MS community, and certainly as someone who was overweight for most of my life I heard it myself. I find now when I am less overweight, I don't get this as a first comment when I see HPs for anything.
Although clearly obesity is an issue, when people feel they are not taken seriously because of being overweight it becomes an issue of not even bothering to go to the doctors. My mum who was a heavy smoker was the same. She suffered with extreme back pain due to a slipped disk but avoided going to the doctors for any treatment because of the smoking elephant in the room.
So yes, I don't really know what the right approach is here, but I think shaming is extremely hard to deal with. And it is very sad to think that people avoid asking for help because they worry about feeling this way.
I think getting to or maintaining an optimal weight is fundamental in helping pwMS (or anyone) to feel the best they can. But changing food habits is a bit like changing smoking, people have complex webs of denial and reward, comfort and control and it’s really hard to break through that and find what works for an individual and so a lot of people remain in stasis even when they would love to get rid of the burdens and impact of doing nothing about it. I think to tackle holistically, like you do in these newsletters; to empower people to get in control of sleep, medication, optimise whatever they feel they can, will all count towards finding that motivation and confidence to tackle the thing they might be avoiding such as optimal weight. My personal motivation is a healthy dose of fear, thanks to Covid I found the motivation to get back to ideal BMI after a decade of drifting!
Losing weight has been one of the best decisions I’ve ever made, and it started happening before I was diagnosed.
About a year and half ago I decided I had to change my lifestyle and my diet; I’ve never eaten ‘bad’, but I think some of my quantities and food selections were way off.
I made a lot of minimal but crucial changes that have allowed me now to lose 25 lbs and reach the 175 lbs in a year or so. That is not my optimal weight, but I’m very very close and now I’m not considered obese, I’m just slightly overweight.
I exercise every morning with a brisk walk and sometime jogging, and I can confirm that exercise makes you feel lighter, better, and sharper.
Losing weight is not easy but I think it’s all about mentality and lifestyle changes. Just by having a healthy lifestyle you’re going to lose weight sooner rather than later, and you’re going to feel great about it.
So yes, Dr. Giovannoni, I agree that we should adopt better and healthier routines so we avoid future consequences + we minimize the damage MS could cause.
your advice on diet, they are great advice ... plain and simple
I think that the patient should be given all of the relevant information about their condition because not everyone is capable of finding things out for themselves, or of understanding the impact those things have on their condition. Once they have been given the information? Well, you can lead a horse to water.........
There are so many people who actually don't know this stuff. Being given the information from someone they trust (eg their doctor) is all some people need to make the right lifestyle changes.
I know i have a few more pounds to lose. My mobility issues are getting worse by the minute it seems some days. this past year i have graduated from crutches to a walker when I leave the house for appointments. I can no longer walk the 20 feet to my mailbox with one crutch... I need both now. Here's the thing tho, I have been losing weight. I am done a little over 20 pounds in the last 3 months and i have another probably 25 to go. I have been struggling badly with iron deficient anemia to the point my primary care doctor is convinced I have some internal bleeding somewhere.. (i do not) I have been chronically anemic since I was pregnant with my daughter. She turned 35 yesterday. I am now taking a liquid iron supplement and Vit C, B Complex with Folate and a D3 supplement. Hopefully this will right my levels. i dont eat meat except occasionally will have chicken or fish... My neurologist knows whats happening and the only person concerned with my weight at the moment is my pain doctor.. He has always been concerned with my weight. If i gain 4 pounds he freaks out.. LOL.. when my son died I lost 60 pounds.. I gained back 40 of it.. now i lost 20 of that so IDK.. I cant get out and run around the block. I am EXTRENELY heat sensitive as well so when i get over heated I get dizzy, nauseous and i am done.. I also live in Florida so today it was close to 80 degrees outside.. LOL.. anyway.. i am ashamed of my weight.. I hate it.. I dont like being as heavy as I am.. I just dont know how to get it off for good
I catch hell for this all the time, but it’s usually because no one really listens to what I’m saying: the things like the commercials with the overweight models are not helping… they’re trying to sell something. And the terms like ‘plus size’ make it worse. It’s good that people aren’t embarrassed about their bodies, but being unrealistic is not good,
Not trying to be difficult, but are you really asking for advice for your question? Because what you wrote lays everything out really well, and here in this newsletter you are basically ‘preaching to the choir.' Have you said all these things, just as you have here, to the people who are/were objecting to your writing? Or have you explained your stance, just the way you explained here, to the general public? I, for one, don’t see anything really wrong with what you wrote here, nor any language that really could be mistaken for 'code' for something else.
Nowadays there’s an unfortunate confluence of factors that make being a doctor who cares to push for more… more difficult. The FOMO rush to acquire technology and [internet] access in the last twenty-five years, without much instruction on critical thinking while exploring the universe of opinions flooding the virtual universe, along with the world being fearful and constantly on edge leaves so many people primed for this unwarranted mistrust of doctors and scientists, and of science itself. Unfettered access to almost all information available to pretty much anyone, without much instruction on responsible use and critical thinking skills to help weed out junk and nonsense, left many thousands if not millions of people probably thinking they could figure out anything by reading abstracts and watching YouTube videos. It might seem like I am getting off the subject but I am really not. This is all part of the bigger problem of people that are fearful because they are inundated nonstop with information, and much of it is to take advantage instead of to help. So you, doctor, are trying to help people whose attention is being pulled away every moment by other people who want to dazzle them with bs to eventually sell them nothing of substance, instead of helping them have better lives like you try to do.
You have to turn their attention, and try to get them to trust you in this ludicrous environment. That’s the hard part.
Why wouldn’t we be interested/entitled to know about anything that is helpful, supported by evidence? As always it’s up to the individual what they do with that information.
I think the best advice can be given to me by my peers who have gone through the same process successfully. I don't need an HCP to tell me yet again the reasons to lose weight, give up smoking or take more exercise. I will listen to the advice of someone who has gone the pain and can tell me the advantages.
I gave up smoking eventually and with success 20 years ago, a group of us did it at the same time. None of us wanted to be seen as the loser. For the first time, aged 66 I must shed a few pounds or buy a new wardrobe.
Thank you for having backbone enough to take on this mission critical topic! No other change -- meds or otherwise -- than my diet (namely, eliminating dairy/casein) and weight management has made a difference in my clinical symptoms and day to day.
So, you need to be not too fat not too thin exercise daily follow the appropriate diet and then the illness won't progress? So no athletic slim person will be struck down in their prime and suffer a debilitating progression of their illness ? Well lets throw those drugs in the bin and get on that ketogenic diet
Taking control of the things you can by getting to an optimal weight, alongside other well known measures which improve your health and well-being, will put your physical body and mental health in the best possible shape to cope with whatever health conditions that happen to you - the things which you don’t have control over. But it’s also important to appreciate that obesity is a metabolic disease which influences your potential for many other things to go wrong - see the diagram Prof G posted. If you have a chronic disease like MS you would naturally be more likely to have better outcomes and cope better with that disease if you can tackle those things which make your body function poorly - such as weight, fitness, nutrition, sleep, stress.
Thank you Karen I didn't think of that !