[MrBunny]

So I have MS. I go to any link that has to do with the Immune system. Recently I see tons of "discoveries" and attempts to link it to MS. Which gets me excited but than I start to think how much of this is truth and how much is bullshit? Or that MS and others like it are so complex that all of the findings are true... Either way starting to have a hard time finding hope in any of these articles.

[swsieber]

I think we are just beginning to scratch the surface of the link between our immune systems and things like MS. I think the fact that we have so much coming to light bodes well. I do think much of it is overstated; but that there is so much activity makes me think we'll start seeing real progress.

In case you didn't see it earlier (a week or two ago, perhaps in a comment somewhere?) http://www.nih.gov/researchmatters/january2015/01122015reset... Apparently reseting the immune system can halt MS to a certain degree. And that's what I think our real progress will be: by degrees, because those things are complex.

[88e282102ae2e5b]

One reason why researchers inappropriately link their findings to a disease is because grant agencies don't really fund basic research anymore. So if you want to do basic research, you just think of the most relevant disease and spin the impact of your results when reporting back to the grant agency and to the press. The actual paper won't actual make any grand claims, except something at the end of the discussion that's like "oh and this will let us figure out MS."

The problem is that basic research really is crucial to understanding many diseases, but you can't get it funded because it's not sexy enough (or really, because funding has been cut so much in most countries). So on one hand, the claims that you see are definitely blown out of proportion, but it doesn't mean that something useful wasn't learned. You'd have to read the paper to really know.

[BadCookie]

I risk getting downvoted for this, but have you tried any dietary changes? There are cases of people with MS who have seen tremendous improvement on a low histamine or paleo style diet. There are no guarantees, of course, but what do you have to lose? I would think it would be worth the inconvenience of trying it out for a few months even if the odds of success are very small.

Here's an example: https://www.youtube.com/watch?v=KLjgBLwH3Wc

[SwellJoe]

"I risk getting downvoted for this, but have you tried any dietary changes?"

Because you should be downvoted for this.

People who have long-standing health conditions, that they have perhaps battled their whole lives, don't need people on the Internet arm-chair quarterbacking their treatment. They have medical professionals that they've worked with for years and trust, they have almost certainly done more research than you or I about their condition, and they have heard the latest fad cure-all from everyone, everyday, for years. They get it on their facebook wall, they get it from well-meaning (but poorly informed) friends and family, and they get it from strangers on the Internet.

Don't be that stranger on the Internet. Your intentions are positive and laudable, your actions are not.

In short: Unless someone has asked for advice about treatment options for their chronic condition, it is probably impolite to offer it.

Source: Conversations with friends with MS, CP, disabilities, autism spectrum disorders, and various trainings in how to provide safer spaces for people with a variety of conditions.

[BadCookie]

I have a health condition that is just as serious as MS (and is similar to MS in some ways). None of my doctors (over a 20 year period) ever suggested that I change my diet, but for me, changing my diet is the closest thing to a treatment that I will ever see. I WISH that somebody had suggested that I change my diet, because if I had done it years ago, I might not have progressed as far as I have. So I'm sorry if the guy I responded to has had tons of people suggest to him that he should change his diet, but for me, it was the opposite. No one suggested it. I tried it on my own, out of desperation and despite my doctors poo-pooing the idea. And it worked. I guess I got lucky, but there are lots of stories just like mine.

The fact is that doctors are often NOT that helpful for people with complicated neurological conditions (no one knows this better than I do!), so some of us are left to fend for ourselves. Given that that's the case, I don't see what's so terrible about asking someone whether they have tried a treatment that some people have found to be effective. My perspective is that an elimination diet is worth a try for anyone with an autoimmune or difficult-to-diagnose neurological condition. That opinion is based on a lot more knowledge and personal experience than you have assumed it is, but it's true that I didn't make that clear in my comment.

The only reason I even responded to MyBunny was that he said that he was having "a hard time finding hope." I thought that if there was even a sliver of a chance that my suggestion could help him find hope, then it was worth getting downvoted to oblivion. But if my voice is merely one of a chorus that have suggested the same worthless idea to him, then for that I am sorry.

Ultimately, I do see your point, and thank you for your perspective, but I don't think that I can entirely agree with you.

[SwellJoe]

Apologies for making assumptions about where you were coming from. I may have gotten a bit preachy and reactionary. We're both obviously coming from a place of wanting to be helpful.

Though I still think the advice to only offer treatment suggestions when asked is always sound. The Internet seems to exacerbate the problem of overwhelming amounts of unsolicited advice, which can breed its own sort of despair.

[msie]

From my experiences in a hospital I've seen doctors that can hardly spend any time with a patient and it's really up to the patient and their advocate to look out for themselves.

[gregpilling]

Thank you so much for this. I have a chronic condition and I assure you that discussing it is the least exciting thing possible for me, and for the last 7 years the doctors and I have tried every damn thing at least twice. Everybody tries to help with concerned advice, but they don't get the pain of discussing the paleo diet for the 300th time (which didn't help the 3 times I tried it).

[pmh]

This reminds me of an NPR story[1] I heard a little while ago about Empathy Cards. Specifically http://emilymcdowell.com/products/treatment-on-the-internet-...

[1] http://www.npr.org/sections/health-shots/2015/05/07/40497653...

[collyw]

I don't think there is a problem suggesting changing diet in addition to "proper" medical treatment. Its when people are encouraged to use it in place of other treatments it becomes a problem.

Research into ketogenic diets is pretty new, (and as far as I am aware, has been shown to have positive effects on neurodegenerative diseases in rat studies). There is a possibility that it may help.

[SwellJoe]

My opinion about offering unsolicited treatment advice has nothing to do with whether the suggested treatment is effective or not. My suggestion to not offer treatment advice to people with chronic conditions comes from a recognition that most people with chronic conditions receive exhausting amounts of advice from folks every day, and it is often not what they want to talk about, but politeness dictates they not simply say, "stop talking, you're not helping".

Certainly there may be gems of valuable input that may come from strangers on the internet, but with no other signals indicating quality, it is just more noise in an already complicated topic.

Again: In conversations with someone who has a chronic condition, unless the person has asked for advice (in some way) about their treatment, it is generally rude to offer your thoughts on the matter. Just as I wouldn't suggest you go on a diet if I think you're a little overweight or that I think you should be on antipsychotic drugs because I saw you get angry one time, your knowledge of a strangers situation is too low to be helpful. And, they hear it all the time, and most of the time the advice they get is bullshit.

[sago]

MS responds very well to a whole range of therapies that have no proven disease modifying abilities. It is an almost perfect disease for a methodology to claim success on. The Relapsing Remitting course is variable, so people with the condition are likely to seek new treatment during worse periods, and thereafter regress to the mean. The knock on effects of the lesions in brain and spine can often be self-limiting (tiredness, pain, lack of coordination, mood changes, diminished vision), so are very conducive to placebo effects. MS can in some patients plateau and relapse rates drop off or cease (not often, but sometimes), so it is perfect for testimonials of dramatic benefits, if you don't systematically count the failures.

If you check out just about any 'alternate' modality, you'll have a very good chance of finding it claims high success on MS. In comparison, most modalities don't tend to claim success rates on amputations. Though both involve the destruction of tissues.

It's a great case study in science based medicine.

"what do you have to lose?" - in general time, often money, and a demonstrated reduced likelihood of pursuing scientifically valid treatments. The more claims of beneficial treatments adding to therapeutic noise, the harder it is for individuals to assess treatments properly. On aggregate, we're worse off for the claims of well meaning (and hucksterish) folks.

"it would be worth the inconvenience of trying it out for a few months even if the odds of success are very small." - isn't that the sales pitch of every snake oil salesman or true believer?

FWIW: I have PPMS, and I've heard literally hundreds of claims, ranging from many different (and contradictory) diets, through 'eastern medicine' to revival prayer meetings. The details of the method change, but the structure of the claims, and the way they use evidence, are remarkably similar.

[EarthLaunch]

> In comparison, most modalities don't tend to claim success rates on amputations. Though both involve the destruction of tissues.

That comparison deliberately wipes out the actual differences between immune disease and amputation which give rise to the idea that the immune system can be affected by diet in ways amputation cannot. If you want to be scientific, use reason.

> "it would be worth the inconvenience of trying it out for a few months even if the odds of success are very small." - isn't that the sales pitch of every snake oil salesman or true believer?

That is an invalid answer to that pitch. There are many times that pitch is completely valid, too; when a small inconvenience is worth trying even if the odds of success are very small (such as this article's study itself!).

I still can't understand why there's so much anti-reason surrounding "defense" of "science-based" medicine. If it's an overreaction to quackery, then it's an ineffective one.

[sago]

> a small inconvenience is worth trying even if the odds of success are very small

Pascal's wager works the same way. And it would be a reasonable argument if you forget to multiply by the number of such claims.

[ulysses]

Thank you very much for this, it is concise yet thorough. I'm going to use this link as a boilerplate reply.

[MrBunny]

I actually have changed my diet and take drugs that help prevent more events. Additionally its really hard to track the progression since you can have an event (damage) without actually knowing (mild issues). However the damage is there and IMO is what produce the most day to day trouble. Tricking your brain into thinking your feet are on fire or your arm is weak weird shit like that. When I finally got MRI they found 7+ lesions in the brain and spine. For me to be honest most days I'm ok but it really sucks take these crazy expensive drugs every day. It's a very expensive disease that produces lasting damage even if a cure is to found.

Sorry don't mean to rant.

[BadCookie]

I'm sorry. I have a different condition that has responded to dietary changes, which is why I mentioned it, but I realize that I may just be very lucky in that regard. I wish you well.

[MrBunny]

No worries I took no offense.

[BadCookie]

For what it's worth (and perhaps it's worth nothing), I also experience the burning feet feeling that you describe, although it's usually just a tingle. My arm also goes numb sometimes. My neurologist says that I am having silent migraines, which is a type of migraine consisting of just the aura with little or no head pain.

For me, these silent migraines seem to occur after I eat a meal high in histamine. (A salad with balsamic vinegar produces a reliable, strong effect within a few hours.) There is some recent research coming out of Europe that suggests that histamine intolerance is very real, but doctors and researchers in the US haven't caught up to this yet.

Overview of the research on histamine intolerance can be found here: http://www.aerzteblatt.de/pdf/103/51/a3477e.pdf

Histamine has been implicated in the pathogenesis of MS: http://www.sciencedirect.com/science/article/pii/S0028390810...

Anyway, if you ever want to chat about this stuff (even if it's just to commiserate!), feel free to contact me using the email in my profile.

[mojobot]

I do the same thing, because my brother has it. For what it's worth, he went to a series of lectures from the guy that wrote this book: http://www.amazon.com/The-Happiness-Advantage-Principles-Per...

It has helped him deal with things.

[rollthehard6]

On the bullshit side column, what's your view on Naltrexone? I take it for Crohn's and it has helped me a lot and know of many MS patients who have benefited from it too.