Treating or preventing Multiple Sclerosis with lifestyle changes

[Mithriel]

Initial post and some subsequent posts copied or moved from this thread.

I can't stand this "positive outlook" push for the chronically ill.

I go to an MS therapy centre and about a month ago they got in lots of stuff about a (commercial) programme called "Overcoming MS". The title alone makes me want tp scream. You can't overcome MS!!! It is just a short step from "you can overcome MS" to "you still have MS because you are not working hard enough"

The thing I find upsetting is the step 7 which is how you can prevent your kids getting MS by following the programme steps. So it is no longer a tragedy if your child gets MS as well it is your fault.

The whole programme is just buzz words, vegan diet, exercise, mindfulness and so on.

The NHS is also doing a programme but it is called "Living Well with MS" which is more acceptable but still the risk of blame sneaking in.

My grandson developed type 1 diabetes and was so flooded by how successful you can be with diabetes it began to feel like it was an illness that was just a blip in your life whereas it is important to know how bad things can get as well so you can have a balanced view of the risks and what you can do to minimize them.

Anything else treats us as children who can't handle the truth while putting the blame firmly on the patient.

 

[JemPD]

I could not agree more with all you have written @Mithriel.

The thing I find upsetting is the step 7 which is how you can prevent your kids getting MS by following the programme steps.

I wasn't aware MS was 'preventable'! ... what's their evidence for that?! - not asking you Mithriel, just saying i'd like to see it because I suspect there isn't any, at least none of good quality, but would be happy to be corrected.

 

[Mithriel]

It was designed by a guy who "overcame" his MS and is now passing his knowledge onto everyone else. I think there is a charity set up, but of course he sells cook books and things. It isn't quite LP but the same sort of "treatment" course

His advice is to eat vegan with no meat or dairy - so difficult to get calcium.

Exercise outdoors for 30 mins each day - so lots of vit D - there is some evidence that a lack of vit D could be a cause of MS.

Take large doses of vit D. Now people in the centre all started taking vit D. I do because I am rarely outdoors. But some of them started to develop osteoporosis because of it, especially the ones who like to lie out in the sun.

Then no smoking, keep taking medication (good advice there) and mindfulness. All the latest fads in other words.

No new research involved, just empty promises to desperate people. I have been going since 1994 and there have been lots of strange treatments promising cures from cannabis chocolate to diet coke (phenylalanine) to allergy specialists who wave a pendant over you.

People with chronic illness will try anything which promises them relief. The problem with ME is that the commonest treatment, exercise, makes us worse whereas diet coke just rots your teeth.

 

[JemPD]

Well I decided to google it... as I suspected it came back with a wide range of opinions, mainly that since it cant be certain what causes it it cant be 'prevented'... but I also came across this type of thing, which tbh I found rather reassuring that such twaddle was being talked about MS as well as ME https://healingchronicles.com/2013/03/20/yes-ms-is-completely-preventable-heres-how/

From the article

Here’s the deal with the immune system responding by attacking. It’s not a genetic thing. It’s not a random thing happening for unknown reasons. It’s a behavior thing, and guess who determines how your immune system will behave. You do.

Yup, you determine how your immune system behaves. How is this possible? Well one way to look at it is that your cells are really little bits of you that act like you. So to get your cells to behave or not behave in a certain way, one thing you can do is get yourself to behave or not behave in that way. I call this method the micro matches macro method.

What this means for ms prevention specifically is that getting your immune system to be less prone to attacking means getting yourself to be less prone to attack. In other words, to prevent ms, don’t be angry and negative, not on the outside and not underneath either.

I cant tell you how angry this sort of shite makes me If people would stop pushing such woo it's be a lot easier to avoid anger. These messages are so toxic. Anger is a healthy, normal & positive emotion, it drives change. And repressed anger can make one very unhappy.

Sorry this is all a little off topic, I think the article in the OP is excellent & Pippa Stacey can be well proud of it

 

[Arnie Pye]

The whole programme is just buzz words, vegan diet, exercise, mindfulness and so on.

I have read that some people on LCHF (low carb high fat) diets or those going carnivore have improved their MS or gone into remission. It strikes me that if some people who have become vegans also claim that their condition has gone into remission then perhaps food is not involved in remission at all, and all of these people who have gone LCHF, carnivore or vegan and gone into remission have some other factor in common and something else is responsible.

 

[rvallee]

I have read that some people on LCHF (low carb high fat) diets or those going carnivore have improved their MS or gone into remission. It strikes me that if some people who have become vegans also claim that their condition has gone into remission then perhaps food is not involved in remission at all, and all of these people who have gone LCHF, carnivore or vegan and gone into remission have some other factor in common and something else is responsible.

MS is notoriously unpredictable. Sounds a lot like falsely attributable a random event to an irrelevant external event.

It's science 101 to be very careful about specific effects on outcome, to be certain that there is a direct causative effect, not just correlation that would be identical with or without the presence of the thing that seemed to have influenced the outcome. This is pretty much the basis of most cold medication. Colds naturally resolve and it's neither the dancing nor the beet juice chugging or anything else that made it happen, it may just look that way.

 

[TigerLilea]

I have read that some people on LCHF (low carb high fat) diets or those going carnivore have improved their MS or gone into remission. It strikes me that if some people who have become vegans also claim that their condition has gone into remission then perhaps food is not involved in remission at all, and all of these people who have gone LCHF, carnivore or vegan and gone into remission have some other factor in common and something else is responsible.

Diet does help some people with MS go into remission. There is a doctor in the US (Dr Terry Wahls) with MS who was in a tilt-wheelchair and she was getting to the point where she was no longer going to be able to work. She hit the medical library and learned everything that she could about MS and tried using supplements to help with symptoms. She didn't get much symptom relief so instead she turned to diet to get the nutrients that she thought would help with symptom relief. That diet got her out of her wheelchair and she was able to start hiking again and ride her bike to work at the hospital where she worked. It doesn't work for everyone though.