Social Media’s World of MS Misinformation
I’m worried about social media.
Specifically, I’m worried about the many MS-related groups in the Facebook world. There are general MS groups and there are groups dedicated to specific MS treatments. I belong to several, and though there’s a great deal of useful information in these groups, there’s also a danger of incorrect information being spread.
Here’s a post that I saw not long ago:
“Now that flu shots are available if you have the JCV virus you can’t get the shot. It may cause PML. Have it listed on your medical allergies.”
That’s it. There was no evidence presented to support this claim. Just the simple assertion that if you’re JCV+ you “can’t get the shot” (wrong) and the statement that a flu shot “may cause PML” (there’s no evidence of this).
Fortunately, several members of that Facebook group jumped in to debunk this “advice.” As best as I can determine, the person who wrote the post read a report about one MS patient whose JCV titer score changed after receiving a flu shot. But nothing in that report said anything about the possibility of a flu shot causing PML.
A few days later, in a different Facebook group, someone posted a story from “NBC Nightly News” headlined: “Breakthrough Drug to Treat Multiple Sclerosis Wins FDA Approval.” This report was seven months old. It was broadcast right after Ocrevus was approved for use in the U.S.
At the time, there was quite a bit of media hype about Ocrevus. This NBC report featured an MS patient who, after being treated with Ocrevus, said she tossed aside her wheelchair and went dancing. By now I think we know that though some symptom reversals have been reported by Ocrevus users, these reversals are by far the exception rather than the rule. Why would someone recycle this old report that, IMHO, hypes “breakthrough” over reality?
I applaud patients sharing information they think might be of interest or to help fellow patients, but not when the sharer may not really understand what he or she has read or is writing.
What do you think? How do we best use social media sites such as Facebook so that they can be useful tools for providing medical information while guarding against misinformation and hype?
I try to follow the advice of a police desk sergeant from the 1980s TV show “Hill Street Blues.” His words of advice to his officers as they began each patrol shift: “Let’s be careful out there.”
You’re invited to follow my personal blog at www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
JR Hardenburgh
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......"
Teresa
@JRHardenburgh I liked your response to this post. I have had ms 30+years. We have both seen many of the changes with ms through the years but as we both know, they have not yet found a cure! Or we would be first in line.
For the most part, I stay away from Facebook and find my ms information on other accurate ms sites.
Stay well!
David Jackson
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.
Raegan Spence
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.
Kim
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!
Gale Vester
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.”
Nancy T
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
Linda evans aka black knight
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
Ed Tobias
Thanks for the comments, Linda. I often repeat this saying, the source of which I don't know: Life isn't about hiding from the storm, it's about learning to dance in the rain.
Keep doing your best to dance.
Ed
FB
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.
Ed Tobias
Thanks for the well written comments which, indeed, reflect another segment of this problem.
Interesting that you mention high-dose Vitamin D3. I'm getting ready to write something about a warning the Food and Drug Administration recently issued regarding Biotin, AKA Vitamin B7. It seems that high doses of it, as sometimes prescribed for MS, are resulting in false readings on various lab tests.
Ed
FB
The impact that Biotin can have on blood tests is more well known amongst Biotin takers than I would have expected. This is one aspect where the main Facebook page does quite well - info on this is amongst the resources readily accessible, and quite a few people who post on the page remind newbies and others about the blood test impacts of high dose biotin. There are very significant numbers of people doing the "biotin thing" (my neuro wants me on it) and it seems that many "ordinary PwMS" have turned to the most well known Facebook biotin page for info - which in this instance is a positive thing.
Where I refer to Vit D3 above I'm not specifically thinking of the Coimbra protocol but of one of the other MS diets which is spreading its influence further around the world (the one I have foremost in mind does acknowledge that Coimbra MUST be done under strict medical supervision). The main one I'm thinking of does have some really good elements in its principles but some of the advice offered by longstanding "followers" to newbies is not particularly sound - it is being re-interpreted and re-invented as time goes by and has moved some way from the original. There are also aspects which conflict with mainstream scientific research and studies - e.g. bolus dosing of Vit D3 actually sees large amounts of D3 being excreted from the body because it just can't be utilised. Studies have shown that in most instances moderately high doses over a relatively short time will increase levels just as effectively as a couple of very high doses (i.e. 100 or 200,000 IU) but without some of the risks that those high doses can pose. It has been shown that huge doses are really only necessary if levels are critically low. However, too many followers work on the basis of if more is good then lots more is even better - some people make it quite clear that the D3 levels they are aiming for are actually well in excess of those recommended by the "founder" of this particular approach.
Unfortunately not enough people will look beyond the one or two well-presented websites that they come across which are full of "hope", and "inspiration" and good news stories - and once they are converts they don't want to see anything which is not in line with their new-found mission in life - because it may call their judgement into question. If someone does post stuff which questions the tenets of XYZ they run the risk of being barred from the site (and that happens quite often - excommunication is not the sole province of the Catholic church). Another aspect which is self-selecting for these approaches is that those who do not achieve the results everyone tells them they should (even if they are "doing it 150%") will generally fade away and not bother with the site any more, so things continue to look all rosy and sweet to whatever latest batch of newbies lands on the home page. It's only when you research quite deeply into forum archives that you will find all the "failures" for whom XYZ did not achieve the hoped for results.
Heracles Reborn
Let us trust our neurologists who receive sizable "speakers fees" from Big Pharma and get to attend corporate sponsored "conferences" in exotic locations. We should also trust the FDA approved Disease Modifying Drugs (DMDs) which are ridiculously expensive and cause organ failure, cancer, PML, skin necrosis and other maladies. Let us trust the RCTs which are funded by Big Pharma and never let the results get in the way of corporate profits. Hmm...maybe, I will look at Dr. Coimbra's Vit. D protocol or stem cell therapy again...
Ella
Thank you.
FA
Amen.
Luke
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.
Ed Tobias
Hi Luke,
You raise some valid concerns about Facebook. But, we have to ask why people use it as a source of information in the first place.
In the case of MS patients I've found that many seem to be treated by doctors, even some neurologists who call themselves "MS specialists," who don't have a clue about the disease. I'm amazed when I read some of the things these patients say they're are being told by their medical professionals. So, these patients use FB, Reddit and other on-line info sources to interact with other patients to try to learn more about symptoms, DMDs, etc.
Social media can be useful, but it needs to be used with caution and a good dose of skepticism.
Ed
Dave Kirchner
Well, in the interest of correct info, Hill Street Blues was not on in the 70's
Ed Tobias
Good catch, Dave. My typo. It was on in the early 80s and I'll correct what I wrote.
Thanks,
Ed
Jeanine Shahin
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.
Ella
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.
FA
Good point