MS may be BS

[Johngm]

Has anyone heard the film "living Proof, a film about MS.Check he site seelivingproof.com for the details.

[jimeka]

I will watch the movie as I can watch it on amazon prime, so until I have seen it, I delay judgement. Thanks for the link, Blessings Jimeka 🦋

[Jesmcd2 CommunityAmbassador]

I have it on now. But I'm positive I have MS as is my neuro. 😒 This isn't something I want, nor did I ask for. 😭

Thanks for sharing Johngm 🤗💕

J🌌

[Jesmcd2 CommunityAmbassador]

Ok so this movie is about 1guy, who is sharing His story. As always, his MS is different than anyone else's MS.

He also has money to do a process.

This is my take.🤣😂🤗💕

J🌌

[Johngm in reply to Jesmcd2]

Goggle living proof movie ms on Amazon. I don't know how rue this is.

[Elizt3]

Not sure what to think of this movie. I'm watching it today...am half way through. Found it on Amazon Prime Video. I'm feeling conflicted. I've considered a strict diet many many times but always end up quickly returning to my normal diet, which includes some dairy, legumes, some sugar (I eat a "healthy" diet with a good # of fruits and veggies and little meat, and 2000 IU Vit D3, but my diet definitely doesn't meet the expectations of a diet like MS Hope promotes).

[Frances_B]

Despite the sensationalised approach and doom and gloom music soundtrack this video clip is just promotional tool for another of the numerous MS Diet "fixes" you will find on the internet - it is the Best Bet approach developed by Ashton Embry - the Matt Embry who features is is his son. I had to laugh at one point - the lawsuit that he says the MS society has threatened him with is because the logo he has picked for his promotional website is considered very similar to that of the MS Society of Canada so they are not happy with the possible breach of their trademark - especially as they had apparently received enquires asking if they were affiliated with or were endorsing his campaign to push his and his father's dietary "treatment" for MS (Yep - just freeze-frame that spot on the video and read the letter for yourself - at 1:50).

Maybe he deliberately chose a logo so similar, but in the video clip it's what he doesn't say that counts - he just leaves it as open as he can for viewers to jump to conclusions - preferably one where viewers might think the MS Society is trying to silence him.

So, what we have is a promotion for a speaking tour where no doubt people will contribute money - but whose pockets is that money going to go into?. And entirely predictably, the video clip is populated with people who show the worst that MS can do to people, but where are the PwMS who are managing to live reasonably ordinary lives? There's nothing wrong with a bit of bias to emphasise your point is there??? Especially when scenes of Matt running are shown to "illustrate" how effective his approach is. Sorry folks, but my marketing degree just highlights all the film making tricks and manipulation that have been used. Even if his organisation is a registered charity such organisations can provide a pretty good living for those who run them, while still tipping just enough dollars into their "causes" to meet legal requirements.

What is even WORSE - Matt Embry's MS Hope website has a video clip documenting a visit he made to Zamboni - who has now had to finally admit that his beloved PTA procedure to fix CCSVI is completely worthless. To still be supporting CCSVI even though its main protagonist has now admitted it's pointless really does call into doubt the credibility of the whole MS Hope thing. I've posted this link before, but here it is again to save people having to try and find it jamanetwork.com/journals/ja...

So, you can take your pick from quite a few of these MS approaches - just don't expect the miracles they promise to actually eventuate - they always have an "escape clause" somewhere (usually that you didn't follow the diet 150% so it's all your own fault that it didn't work). And for those in the USA the Jelinek juggernaut of OMS is trying to get a foothold in your country as well, so look out for that - you can spend a few grand to be indoctrinated in the OMS way at a retreat. There is one thing which is common to all of these approaches - they pick the bits of science which support their "protocol" and try to ignore anything which doesn't support it. Despite the claims made on websites, you can rest assured that not one of them is driven purely by altruism - there is always a money aspect lurking there somewhere. And I worry about the way vulnerable people can get drawn in by high production values, slick looking websites, and hyped-up success stories - it is one of the really bad downsides of the internet.

Rant over - you can all go back to sleep now.

[goatgal in reply to Frances_B]

Frances_B Thank you for your detailed and knowledgeable critique.

What was it PT Barnum said? "There's a sucker born every minute." And the other, anonymous, but around since the 16th century, "A fool and his money are soon parted." And then there was my grandfather, who often said, you pays your money, and you takes your choice.

[Peruzzot in reply to Frances_B]

Thank you Frances_B for the in-depth analysis of the movie. I only watched the trailer and my red flag conspiracy theory was immediately thrown on the letter. Based on your analysis it sounds like it is an infomercial disguised as a movie or documentary. Think I'll pass on watching it.

[Frances_B in reply to Peruzzot]

I haven't actually watched the movie - only the promotional trailer for it on the link provided (and I had seen this trailer before). The tab on my browser displayed Matt Embry's name when I opened the link to the video clip. I don't feel any need to watch the movie - I very thoroughly researched all of the "MS Diet" and lifestyle approaches when I was first diagnosed several years ago so when his name displayed I was able to take a b.......... good guess at what the movie would be about i.e. the "wondrous and positive effects of following the Best Bet diet, and how most of the rest of the world is conspiring with Big Pharma to prevent you from knowing the truth and from healing yourself blah blah blah blah blah". MS Hope is sort of a child of MS Direct, and I'm sure that the next thing that we are likely to see cropping up on the MS Hope website will be promotions to persuade people with MS to buy specially formulated supplements which will no doubt have been manufactured to Matt Embry''s own "stringent specifications" - and I shouldn't need to mention that they will probably be three times what you would pay at the local drugstore or health food shop for the same product without his name on the label. So much of this stuff is entirely predictable - look at Mercola - he started out with an alternative advice website and now virtually every article he posts is effectively a promotion for a product he's flogging (with hs name on the label).

Some people probably think I'm a total cynic and sceptic and in some ways I am, but a lot of this stuff is just text book Marketing 101 wearing an cloak of altruism, sometimes with a hat decorated with "conspiracy theory fluff".

There are people who do quite well on these "protocols" and "programs" but there is no conclusive evidence that their MS wouldn't have settled down regardless - MS is unpredictable and can and does do that. In many cases I've no doubt that dietary changes do help people, but often it's because changing from a diet high in processed foods and junk foods and high sugar content drinks to one which is full of healthy fresh vegies and fruit and low in junk foods will improve anyone's health regardless of whether they have MS or not.

The one thing that these dietary approaches to MS do offer is a feeling of "taking control" and/or of "doing something" but there can also be psychologically harmful impacts when people don't get the results they expect and then feel a sense of failure. It really does come down to what I wrote above i.e "...they always have an "escape clause" somewhere (usually that you didn't follow the diet 150% so it's all your own fault that it didn't work)." And goatgal used all the famous quotes I wasn't quite game to in my previous post, but they are oh so appropriate.

[Peruzzot in reply to Frances_B]

I'm a complete cynic and proud of it😁. We should get along just fine.

[Johngm in reply to Frances_B]

I'm usually very positive, however over the last 14 years all I have to show with 4 different drugs is a smaller wallet but the drug companies keep getting wealthier.

[goatgal]

Johngm There are many variables in the way MS presents itself, affecting/inflicting/impairing each of us quite differently. My MS is not your MS, or his MS, or her MS, or even their MS. I know and care deeply about people whose MS restricts them in ways that mine does not. I also know that telling or even suggesting they do what I do, eat/move/live as I do, would be callous, judgemental, ignorant, and perhaps even harmful. My MS is not your MS, or his MS, or her MS, or even their MS.

[carolek572 CommunityAmbassador in reply to goatgal]

Well said, goatgal

[cassielynn71]

So I've known people WITH MS and WITHOUT MS try these super healthy, vegan, keto, & cure all whatever diets....And they ALL feel better while on them because they are usually very healthy diets. That's wonderful. One of my friends with MS who stayed on her diet and exercise regiment for TWO & a HALF YEARS relapse free, woke one morning to no feeling in her right ankle and foot. It spread over the next few days up the right side of her body to the right side of her chest. She's fine now. And still on the same diet and exercise regiment, because it helps her feel good, but she now knows it wasn't a cure. MS can go years with no progression. No obvious symptoms. It doesn't mean it's gone. So do eat a healthy diet. Exercise if you can. Do anything extra that you are able to that will give you that little extra boost. Even a little makes a big difference in our world. But in my opinion, there is NO cure. Frances_B says it best in her reply. Thank you for that, btw! Hugs and best wishes to all

[goatgal in reply to cassielynn71]

casielynn71 Thank you! You are so right in your response.

[kdali]

I have heard of it, but I wasn’t into this Embry dude (or Wahls for that matter) when I started exploring what lifestyle tweaks I could make to better manage my symptoms.

I think that if any of the “rules” is an improvement when compared to how you normally live, then go for it, and let us know in 6 months if you’re feeling any better!

And, MS is definitely BS! 🤣

[Lilith08]

I watched this yesterday. While I believe there are some bits of truth in it, I was really turned off by most of it. What I would like in something that calls itself a documentary, particularly one about a serious medical condition, is good journalism—a balanced, disciplined approach to facts. This film plays on emotion (melodrama, to be honest) and the filmmaker clearly is not able to distance himself from his own deeply held beliefs.

Frances_B did a great run-down about the marketing techniques. I don't claim to know any of that marketing stuff, but it felt right on target. What bothered me about the story line with the MS Society of Canada is just exactly what Frances pointed out—it seemed pretty clear to me that his logo infringes on their logo copyright and they have every legal right to challenge that.

Why would the MSS of Canada not want people to think they're related to MS Hope? Well, yes, there may well be "big pharma" concerns but I'm not going to go down that rabbit hole. I do believe, however, that one reason the various diets/protocols have had a difficult time getting official endorsements is that they do not pass the scientific rigor of a one-size-fits-all "magic pill." The scientific method by its very nature (as much as I understand) requires that a treatment be very specific and that it work the same way in a certain percentage of patients. By their very nature, the various elimination diets are very personalized. I can really only speak to the Paleo Autoimmune Protocol—after eliminating a wide range of foods that are known to be frequent sources of inflammation, and a period of gut-healing measures, foods are very carefully and methodically reintroduced. Some people may be able to reintroduce many foods while others may be more limited. One may never be able to eat bell peppers and another may have to forever ban rice. This is the kind of uncertainty that doesn't sit well with the scientific community because they can't say, "Follow this exact path for this promised result."

Dr. Terry Wahls was actually awarded a research grant, I believe in 2018, by the MS Society (US). I think that's a great step towards looking at non-pharmaceutical possibilities.

[CalfeeChick CommunityAmbassador in reply to Lilith08]

I did the Wahl's diet almost religiously and didn't feel any better.. Felt worse because my energy went down and my weight up over 30 lbs! I've since created my own way of eating fruits and veggies. I eat some chicken and turkey. Don't even have any desire for beef or pork. Cut out most carbs, I give in to dark chocolate as a bonus and have lost over 40 lbs, energy level is still down. I have to force myself to the gym that is 1 block away! MS has stayed the same level now over a year on just symptomatic meds. I hate MS, but just deal with how it is with me the best I can.

[Jesmcd2 CommunityAmbassador]

My 2cents? I couldn't finish watching it. The guy kept crying. 😔 And I'm sorry, but I get it, we all get it! But stop crying!😊

[Lilith08 in reply to Jesmcd2]

Yep—designed to provoke emotions. I dislike that.

[Lilith08]

On the other hand, I think he brings up valid points about the pharmaceutical approach, and it applies to other chronic conditions as well. It seems the basic approach all around is this: John Doe has developed this condition; what drugs can we design to deal with it?

I think it would be a lot more useful if, in addition to drugs that deal with the condition, preferably for the short term, more time and effort were put into understanding *why* the condition arose and figuring out better ways to stop it from happening.

The fact that this is not happening at the rate we should expect does play into suspicion of the “medical industry”—so much money is thrown at creating drugs because when they work, they make money. ($7000+ a month for Rebif! No wonder insurance is such a racket.) Where’s the money in finding out how to prevent the biological process from even starting? Or, God forbid, from finding a dietary management that’s just as effective as the drugs that simply delay the inevitable? There is food for thought here.

I still can’t recommend this particular film, though.

[ahrogers]

So glad to have you all to give insight so I don't waste my time watching the movie. What comes to my mind is the topographical model for MS and how diet, exercise, not smoking and managing other health problems build up the fluid level in the "pool" so the MS lesions have less impact. I like the model because my symptoms have been kind of a mix of RRMS and PPMS so it helps visualize why. Luckily I have mostly eaten a pretty healthy diet most of my adult life and used to exercise regularly. This explains why I function as well as I do given the number and locations of my lesions. I need to get back on track with exercise and just accept it won't be what I used to be able to do and that is ok. Some is better than none and it is free because I do it at home 😁

[Fattius]

Listen I do understand the way people view messages in different lights pertaining to their own experiences and the way their minds formulate a base line prognosis of someone with m.s. I have had about 11-12 lesions form in my brain, all in parts of my brain that make all of my complaints and worries about my condition finally understood. Its not about correcting the ideas of 1 person to make them feel like they are doing or saying something wrong. It is accepted that this disease is night and day, so when anything said or did is unsecesfully corrected then they grab the pitch forks. The experience is most definitely different for all. The level of disabilities are different for all. "Choosing your words wisely " isn't going to make a doc care nor is it going to give you clarity. Only an adult mind will pick and choose which information to absorbed. Diet, exercise, and happy words and thoughts are great escape goats when the need to end a conversation is ideal. People are dealing with this BULLSHIT the only way they can, however if their is information that helps their situation is available and it pertinent to them, it will be absorbed. Other than that its all speculation. All that I'm saying is your judgement is the only thing that matters. Correction isn't needed if you have a firm grip on your reality. D.m.t's haven't stopped my progression yet but I keep reaching to find anything that will help. We do what we can and without specific info on the vast complexities of this disease it is almost all subjective in some form. I just want people to know that we have ability to think for ourselves, most of the time, but to dismiss something understood won't make you all things m.s. knowledge curator.

[Jesmcd2 CommunityAmbassador in reply to Fattius]

But I am! 🤣🤣😭🤣