Living Proof: documentary about MS and corruption in pharmaceutical industry and national MS society

I enjoyed watching this documentary recently, absolutely heartbreaking

Living Proof (2017)
https://www.imdb.com/title/tt6604174/

If ME ever gets to the stage where MS is in terms of awareness, research funding, pharmaceutical industry involvement and treatments, this story shows how patient communities really need to be careful with big pharma and future non-profits that might have too close ties.

If what was said in the documentary is true, none of the myriad of drugs available to date for MS from big pharma actually significantly slow down progression long-term compared to not taking any treatment at all. The national MS society only pushes for research and treatments that are $$$$ and don’t really help anyone other than making big pharma richer than ever at patients’ expense.

The documentary also focuses on how the son with MS and his father did a great deal of research and discovered how some major dietary changes, vitamin D supplementation, exercise, and surgery to correct possible CCSVI can actually work better at slowing or halting progression than big pharma’s drugs for a subgroup of people with MS.

The son follows all of the above and hasn’t progressed in many years. I believe they also said his father was the person who discovered the link between sun exposure, vitamin D and MS incidence. They also give all this information and help away for free and do not profit from it.

 

Is it on Netflix ?

 

Amazon Prime Video

 

Thanks, I don't subscribe to that.
But I'll keep an eye out for it on other sources.

 

I have not watched that documentary but this happens elsewhere as well the Michael J Fox Parkinsons charity tried to take away control of a potential Parkinsons treatment from its inventor. They went behind his back and tried to profit off it and screw the inventor over.

 

Thanks for the suggestion! Gonna watch it now. So many similarities in the MS-story, they`re just far ahead in terms of research (although obv. not where they want to be yet)

 

The review on IMDB makes me not feel desperate to watch this:

"Then he dives into the world of life style changes like diet, supplements and exercise and how they have helped multiple MS pateints and with impress results."

I hope those supplements have a good evidence base for efficacy.

A lot of documentaries seem to be put together in a deeply misleading way so I tend to only watch them for entertainment and fun images of cute animals.

 

Pretty standard supplements. But from documentary what’s much more important are the dietary changes and exercise. See supplements list here:

http://www.mshope.com/

Also the family has a site discussing the science behind nutritional factors and MS:

http://www.direct-ms.org/

What’s commendable to me is that they do not try to make any money off any of it.

If what’s shown in the documentary is true the pharmaceutical industry gives MS patients a ton false hope because no drug available works long term and people continue to deteriorate.

 

I don't know - there's a claim that "The scientific evidence supporting the benefit of these supplements is strong" but I didn't see references to good quality research there. I don't know about how MS should be treated, but I do know how easy it is to create a misleading narrative in a documentary. To make a real judgement we'd have to go through the evidence, but there are things about that site that make me feel wary - maybe this is just ignorant prejudice on my part.

Also, I thought that claims about CCSVI helping MS are now seen as unfounded?

eg: https://www.msif.org/news/2017/12/13/disappointing-results-ccsvi-treatment-trial/

 

You might still enjoy/find value regarding the corruption between pharma and national ms society making billions on drugs that really don’t work long term. Feel free to ignore the rest...

 

The vitamin D / latitude idea has been around for a while. I am not aware of any evidence from controlled trials that vitamin D cures or halts any of the purported illnesses it's been trialled for.

CCSVI made waves years ago and turned out to be a dud when an actual RCT was done.

 

I thought they were finding that exercise, long a mainstay of MS treatment, wasn’t helpful after all.

 

Even thought the documentary is recent the son was diagnosed with MS in 1995 and his father did the research and discovered the vitamin D link many years ago. They do not say that vitamin D alone can cure or halt MS.

 

@Esther12 and @Sid from what I understood in the documentary they do not say that CCSVI exists in all people with MS or can always improve MS when treated, though they believe patients should be evaluated for it and doctor and patient can discuss whether they want to attempt surgery. You will see in the documentary patients who halted progression after CCSVI surgery.

I think a good analogy would be to CCI/AAI surgery or rituximab in ME/CFS, there is something real there and a subgroup go into remission or greatly improve but RCTs fail or will likely fail.

 

I'm not necessarily backing anything they've said, but the thing here is that existing studies can not conclude if exercise is helpful or not because hypothetically it could be that without combining it with the major dietary changes one needs to adhere to then it might not appear to help.

 

There're lots of problems with the drug industry but I suspect not the ones being touted in this piece. I doubt supplements or diets or exercise have any relevance. If the film makers are not making money out of recommending these things someone certainly is.

Several drugs work in MS, including rituximab, but in order to keep the disease at bay you need a dedicated physician to monitor and treat each case on its own merits.

The main reason why expensive drugs are used in MS is because patient advocacy groups have demanded it, not because the companies have pushed them. The companies tend to be pretty wary of developing drugs for MS because of all the side effects that can discourage use of the drugs in more profitable diseases.

 

There's a few good comments on the movie here

 

When the first, really expensive, drugs for MS came out I read the explanatory leaflet and I wasn't very impressed by the results. MS is very dependant on stress levels and spending a fraction of the money on making life easier with carers and such like would probably have an even better result.

The people I know with MS like getting physio and going swimming because it helps with contractures and the pain from stiffness.