Social Media’s World of MS Misinformation

Like yourself, I belong to several MS FaceBook groups. Most are helpful for patients and caregivers who seek a community of other's opinions and experiences facing similar DMT treatments, symptom management advice or simply a forum to share what it's like for them coping with MS. If you've had MS for a while (22+ years), you can usually spot the BS writers, eliminate claims of super responders (throw away the wheelchair and dance) and extract from these blogs valuable information that can help "embrace the suck" of having MS. If something doesn't sound right on a post, it's always best to get the opinion of your neurologist or primary care physician. Just remember the cliche "If it sounds too good to be true......"

I couldn’t agree more. This site is one of the worse. I made the mistake of calling about the stem cell baloney. They keeping calling.

I intend to stop reviewing these sites.

Amen! I always look at these stories objectively and if it peaks my interest then I will start doing my own research which always includes speaking to both my GP and my Neurologist. I think when we really WANT something to be true, we want to share it with others but we also have a responsibility to weed through the massive amount of information that is floating around and share responsibly.

Your article reminded me of something I wrote about social media and MS (http://livewisems.org/blog/my-frustration-with-social-media-and-ms). I too have had my concerns/frustrations with some things that I've seen on social media. I think it is a great tool for creating support and a sense of community but I agree it can be scary out there. There is reliable information to be found via social media but people always need to consider and question the source!

Is it social media, or is it a social disease?

Sarcasm helps me through a day, as do a long list of scripts. So much of what people seem to share most energetically are things they want to be true without having any proof that they are.

Ah well, I very much like that line you laid out there for us: “Let’s be careful out there.”

I noticed A lot of TV shows like Young & the Restless and Scorpion said wrong things. Such as the character in the show was dying from MS

Couldn’t agree more with the story and comments followed. Another area of concern for me with most ms faces, a lot dwell constantly on the disease and the negativity of its symptoms. More time needs to be put in to living a life and creating a balance. I find most stories depressing hence “ creating a world of misery “. I’m constantly distracting myself and creating the most happiness I can. This doesn’t happen without effort. Money cant buy wellness or happiness. Only we can. Yes, there’s days I can’t escape the raw reality of aggressive ms and the truth here is the majority of days are a fight. BUT I get there by just knowing I have tried my best. Dwelling on pain and symptoms just tunes your brain into the above mentioned. My caregiver and others that know me well are fascinated by my ability to mentally take as much control as possible. Ive proven to myself, positivity and distraction is the best medicine. Self taught after being in that negative state for way too long. Act don’t react

It's not just the Facebook sites that PwMS need to be savvy about - they also need to develop some insight into and knowledge of "cause and effect". Some of the forums attached to websites based around diet/lifestyle approaches to MS are potentially psychologically damaging in their blaming attitudes, especially if posts from long-standing followers of XYZ approach lack objectivity and fail to demonstrate a proper understanding of cause and effect. A person who has "committed" to a particular approach does not like their committment questioned by anything being posted which points out legitimate research which does not support XYZ approach. This is not to say that there are no good parts to some of the diet/lifestyle approaches, because there are, but there are some very unhealthy elements also at work.

Any deterioration or relapse someone experiences is usually blamed on a person not following the XYZ approach 100% - this can be extremely damaging psychologically for many people, who may already blame themselves for having MS. Another extremely manipulative element in some of these forums is the "think how bad your relapse would have been if you were not following XYZ approach". This sort of manipulation, albeit it well intentioned and aimed at trying to keep people on the "right path", often seems to be as much about validating the choices made by existing long-standing "followers" as anything else. The fact that MS is a variable beast that does what it wants and is unpredictable in its impacts is basically never acknowledged.

I've also seen quite a few instances where original advice from the founder of an approach becomes subject to an electronic forum version of Chinese whispers - what gets posted as advice to newbies is often quite different to the original advice and can actually pose some real health risks (unsupervised mega-dosing with Vit D3 springs to mind here).

For me, the cultish elements apparent in some forums is a considerable concern and in many ways hardly different to any other "religion" which is trying to recruit and retain followers. These days the internet is an absolute boon as far as making information and research available is concerned but with such an abundant resource there needs to be a solid chunk of scepticism and caution used. People with a chronic progressive illness look for hope and a "cure", and a well-presented website which cites some genuine scientific research underpinning its approach is a powerful draw-card - even if closer examination reveals that the research has been cherry-picked. Doing your research far and wide across many sources is the only way, but too many people don't have the time to do this, or the ability to be selective enough.

I quit Facebook, but started the infusions 6 months ago, based on what I read through valid online sources. Facebook has no validity and as we saw through “valid” news recently, Russia (aka Putin) was placing fake information on Facebook.

I trust my MS clinic at UT Southwest in Dallas and not Facebook.

Well, in the interest of correct info, Hill Street Blues was not on in the 70's

My daughter was taking high dose biotin. I am glad this has come to light. Thyroid panel came back suggesting overactive thyroid. Neurologist was unaware of the lab and biotin interaction. Apparently, this is not the only lab biotin interferes with.

Searching, careful people battling MS themselves or caring for someone who is. Another year almost complete, and still nothing definitive, or even indicative, from collective worldwide neurologists regarding clear direction on VitD3; sunshine; biotin;diet; gut microbiome; genetics; 'best practice' for kids of PwMS; euthanasia/end-of-life and I'm out of functioning neurons. Yes, social-media platforms are consulted carefully and verified carefully, however thay do bring a form of collective comfort in ideas/information and thats why we're here.