← The MSing Link
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- [00:00]
Host/Podcast Presenter
Hello, thank you for tuning back in. I have been having conversations recently with actually a lot of people, some missing link members, some social media followers, and they are sending me screenshots of posts that they are seeing on social media for some reason, mostly Facebook, but they are related to Ms. Treatments. And these screenshots always come with the text of is this true? Have you seen this? What do you think? And unfortunately, 99% of the time that I'm receiving these messages, the posts are not real. They are AI generated content about Ms. Treatments and it's just false advertising. And I really, really, really hate that because it's clearly giving people with Ms. A lot of hope and excitement and then just bursting their bubble that wait, this isn't actually true. And so I wanted to have a conversation around how to spot false advertising and this AI generated content about Ms. Treatments. And before we dive into that, I just want to also say that I fall for these too. Some of them look very promising and legitimate. And so what we're going to talk about today are different types of red flags that you can look for as well as green flags what might indicate that this is actually something that is happening. And then we're also going to review how you can fact check because again, some of them are very good and at misleading and it does seem true. So I will give you a few different resources that you can go to to look it up and see for yourself if it actually is true or not.
- [02:08]
Dr. Gretchen Holley
The big question is how does someone with Ms. Actually improve their mobility, strength, energy independence? The list goes on. My name is Dr. Gretchen Holley, physical therapist and multiple sclerosis specialist. Welcome to the Missing Link podcast. Tune in as I share the top strategies and exercises to help you gain
- [02:33]
Host/Podcast Presenter
control over your life with Ms.
- [02:36]
Dr. Gretchen Holley
Using research driven insights and advice from top industry experts. Whether you're newly diagnosed or have had Ms. For over 30 years, whether you have relapsing Ms. Or progressive MS, this podcast is for you. You're sure to feel empowered and inspired after each episode.
- [02:58]
Host/Podcast Presenter
Ready?
- [02:59]
Dr. Gretchen Holley
Let's dive.
- [03:07]
Host/Podcast Presenter
Okay, so let's dive in so that you feel confident that what you are absorbing from social media is accurate information and giving you the truth. The post example that I am referencing or just more so using as an example in this episode is something that a Missing Link member sent me that was around volcanic bacteria cure for Ms. But what this article had in it as red flags is what 99% of the others have as well. So what I'm sharing wasn't just specific to one of These AI generated articles, it's all of them, at least the ones that I've seen. And specifically for this volcanic bacteria post, just to set the stage so you know what we're talking about, especially if you didn't see this particular one. This the post claims that an Italian team found bacteria from Mount Vesuvius soil. 81% of Ms. Patients achieved complete remission. It restored neurological function and wheelchair users were now walking and vision was recovered. There was permanent. It also stated that, and I'm saying this in quotes, permanently stopping autoimmune destruction. It was six months of treatment and then disease free for years and it was only £12,000 per patient for the cost. So here's some red flags from this specific post. But again, these are present in most of them. So number one, it's impossibly dramatic results. 81% experiencing complete remission would honestly be like Nobel prize worthy. That is, that is insane. There are no current Ms. Treatments that have anywhere near those types of results. So that's one thing to be on the lookout for. And also these claims of reversing established disability, such as wheelchair users that are now walking, are often extremely rare, even with aggressive early intervention. Now some side note, and I'll try to not go off on a tangent, it 100% is possible for wheelchair users, which I hate that phrase. It's just what the article used. People who use wheelchairs to walk. If even if you are using a wheelchair 99% of the time through exercise as well as possibly nutrition. We likely all know Dr. Terry Wahl's story of she was in a wheelchair and, and now she's walking unaided. So there are absolutely cases. It is absolutely possible that if you use a wheelchair you can walk. But the way that it was described in this article was reversing disability and that because of this treatment, wheelchair users are now independently walking within I believe it was six within six months of treatment. So again it's just, it's possible, but it's extremely, extremely rare, even with aggressive early intervention. The second red flag that you can look for next to impossibly dramatic results is vague, unverifiable sourcing. So this specific article did not have a study title. There were no author names and, and there was no date of imprint. Real research always will have a title, author names likely many, many authors, the date of imprint, dates of when this even happened. So if it doesn't include that information, that is definitely a red flag. The third red flag is that these articles tend to over promise with simplified science and What I mean by that is the mechanism of treatment sounds plausible enough to be convincing. However, they lack the complexity and nuance of real research, which as we all know, like, I guess I shouldn't say all, but as you may or may not know, research takes so many years and so many different phases of research to even get to an end result. And these likely are the first time you're ever hearing of it and it's these dramatic results. Additionally, they use buzzwords like reprogram immune cells and remyelination correctly because those are actual things. But unrealistically, as of right now, there is no therapy for humans that effectively remyelinates. The fourth red flag is that the pricing, if it's mentioned, it's not always mentioned, but if it is, it is so unrealistic, it's way too good to be true. £12,000 for a cure for multiple sclerosis. I mean, other therapies, as you know, even if you're going through insurance, are well, well, well beyond that. There was another study that I'll actually go into deeper in a second here, but, but it's the CAR T therapy and we've actually had a podcast episode with one of the researchers from CAR T therapy trials and this was posted because it just recently was given to the first patient in the UK back in I believe October of 2025. So there was a Facebook post about it and it was one of the examples that was super exciting. This sounds great, but just to give you an idea, CAR T therapy, if my understanding is correct, costs about 400,000 to 500,000 for CANC treatment currently, whereas this volcanic bacteria is 12,000 for a cure. It just unrealistic. I just had someone on social media today tell me that she pays 80,000 a year for her treatment, that her disease modifying therapy that she's receiving. So just, you know, be on the lookout for that. And then the fifth red flag is just your typical AI writing patterns. They tend to be overstructured, this really confident tone, dramatic before and after scenarios, no acknowledgement of limitations of the studies or side effects or uncertainties, which if this is a true article and true research, you have to include that in your article. And then hashtags are often used on these posts, but you'll see hashtags that say multiple sclerosis cure, which again we don't have a cure. So it's these over promising, as if this is 100% certain without acknowledging any possible limitations or side effects. It's just real articles would not be using hashtags Even when you're posting about it, it would not use hashtag multiple sclerosis cure because there isn't one. And that is false advertising. But we have to include the limitations, the side effects. There's rarely these dramatic before and after scenarios.
- [10:37]
Missing Link Program Creator
For almost 10 years, I've been helping people with MS, and what I've seen is that most people with Ms. Have a desire to get stronger, but what they've tried hasn't worked. I've created a revolutionary program called the Missing Link, specifically for people with ms, where I teach you how to strengthen your brain, your muscles, and the neural connection between the two, which is the key to seeing improvements in strength, walking, and everyday activities. When you have ms, regular exercise often doesn't cut it. But it's not just exercise. You'll experience the warmth of our supportive community where every small victory is celebrated and every struggle is met with encouragement. Check the link in the show notes to learn more about the Missing Link and see if it's a good fit for you. Okay, let's dive back in.
- [11:35]
Host/Podcast Presenter
Okay, so now let's talk a bit about actual legitimate research that you might also be seeing in the headlines on social media or maybe you've seen articles from other places. And the one that I'm comparing to that is legitimate is the one about the CAR T trial. So in the person from the UK that tried this out first was Emily Henders. And so I'm going to first share what the real news reported, what the. What was shared from the Facebook post that I saw about this. And then we're going to go into green flags, like, what about this post made me. I mean, I had already known about CAR T cell therapy, so I knew that it was true. But if you didn't, these are the things that you could look for to feel more confident that, yes, this is true. So the real news was reporting that Emily henders, who was 37 from the UK, was the first Ms. Patient to receive CAR T therapy in the UK trial. It states that she was part of the Phase 1 clinical trial at UCLH and it gave the specific Phase 1 trial. It was AUTO1MS. One Phase 1 clinical trial. It was an October 2025 treatment. It also states exactly what was being used for the CAR T cell therapy, which is a drug that is already approved for leukemia. It's abbreviated word because it's two very long words, is obesell. So green flags of this legitimate reporting and others that you'd want to be legitimate looking out for are first and foremost, appropriately cautious language so in this article, it specifically said, and I quote, testing whether this personalized treatment may slow or halt progression. Keyword here being may. It does not say this slows progression or this halts progression. They're saying that it might slow or halt progression. Additionally, in the article, Emily herself says, I know this is experimental. And Dr. Brownlee, who's mentioned in the article, says that this trial will be essential to understanding feasibility and safety, which is what phase one trials are for. Phase one trials, as you might guess, are the first phase. And success with a phase one trial does not mean, okay, this did halt progression and now it can be on the market. Phase 1 trials are for understanding feasibility and safety. So passing this phase would mean that we now know that car T cell therapy is safe and feasible. Now it can get moved on to phase two. The second green flag from this article and similar articles that are telling the truth is that there are no outcome port promises. The article doesn't claim that Emily is cured or even improved. It focuses more on hope and scientific rationale, not guaranteed results. And in this specific article, Emily even says that she hopes to never experience another relapse. Not, I've never experienced a relapse since starting this therapy. And last but not least in terms of no outcome promises is that it acknowledges uncertainty. And this is huge because in clinical trials, there is no certainty. The whole point of a clinical trial is to see does this work or not. So this one did acknowledge uncertainty. It said, and I quote, despite the uncertainty about whether the therapy will work, if something is making you feel like this is 100% certain, that's a red flag. It's more likely than not just trying to get likes or comments or I don't know if they're selling something, maybe a sale. So just be on the lookout for that. The next green flag about the car T cell therapy article is that it had verifiable details. It gave the specific hospital, which was UCLH. It named the actual researchers, which were Dr. Wallace Brownlee and Dr. Claire Roddy. There was specific trial name, as I said earlier, it was Auto One MS.1. You can look this up on ClinicalTrials.gov and you will see that this is an actual trial. And it stated that it was a phase one trial. And as we just talked about, that is for safety and feasibility, not effectiveness. I've got two more green flags for you. So the next one is that it was realistic, scientific context. This specific article explained that it was a phase one trial, which is the first step. It also noted that CAR T cell therapy has worked for blood cancers, but now it's being tested for this new other population, which is the autoimmune conditions. And researchers in the article explained that the goal of this study is to understand the safety first. If you read this article, there are zero claims about CUR or reversal of disability or honestly, even improvements, because we just don't know yet. But let's for a second put ourselves in the future and say, maybe this did go through phase two, it's nearing the end of the trial, or maybe it works and it's been approved. The article then might claim that it improved disability in a certain percentage and by this score level, but it would not say that it cured Ms. It would not use the terminology that it reversed disability. And as we discussed earlier, it would sound more realistic. It wouldn't say 81% of people are cured or reverse their disability. It would likely say 15%, 20%. Just a number that is more realistic in the world of multiple sclerosis. And it would have those specific parameters around it of what did they go from and to. And it wouldn't be this drastic. Now they're walking independently for 10 miles. You know, it would just be more realistic, something that you could actually picture for yourself within the time frame given were they taking the medication for six months or a year. The last green flag is just that this sounds more like it came from a human rather than AI generated. This one does provide hope. Emily's quote that she uses in the article is hopeful that she's hoping this will work. She's excited, but it's realistic. She's a biology teacher. She understands the science. And it's framing that that's who this person is. It acknowledges that she's doing her best to preserve her ability to live life fully. And it's in no way, shape or form claiming miracles, just the hope for better disease control. Those things are so important when the article is referencing a specific person or group of people. If anything ever sounds like it's a miracle, again, that's just another big red flag. So moving on to how do we fact check? Because again, I've been fooled by these from time to time too. So how do we fact check these to make sure that what we are reading is actually true, that there is actually a clinical trial or an Ms. Treatment that will be available soon? So there's a few different places that you can go, or at least that I typically go. The first is to check PubMed and you want to search for the study details that were mentioned. If there aren't study details and you can't find it, then that might be your first indicator that this likely is not true. But if it is true, there will be study details mentioned and search for those details. Real studies have authors, they have institutions, they have journal names. And so you can pick one or all of those and search to see if you can find the article that that the post is referencing. The second place that you can go and this is for some reason one of my favorites. It's ClinicalTrials.gov I do believe that this is for all legitimate US trials. All US trials must be registered through ClinicalTrials.gov I don't believe international clinical trials need to be registered here. But still a place that you can go. And here I think the reason that I like it most is because you can search by condition, you can search by intervention, you can search by institution, you can type the specific drug that the article is talking about or the post is talking about. There's a lot of specifics and you can type in just one of those things or multiple and find what you're looking for. The third place that you can go is to look for institutional press releases. If the post says that this research came through a university or a hospital, those places do announce real breakthroughs. So go to the website for the university, go to the website for the hospital. They likely will have press releases or some type of acknowledgement about this thing that you're reading, especially if it's as true of a breakthrough as what it is claiming to be. And not only that, but those press releases on these university and hospital sites usually have verifiable contact information if you did want to reach out to someone. So that could be a next step is reaching out to that person. Now these next few things are not sites that you can go to, but watch for language. Is it saying that it may help? It's suggesting xyz. Early results may indicate xyz. If so, if it's a little wishy washy like that, that's real science and I hate to say that, but it is wishy washy like there's you cannot confidently say yes, this is a, this is proven for everyone. Whereas fake science or this AI generated content will use words like proven cure permanently eliminates reverse. So how concrete are the words that they are choosing to use? If they are very concrete, more likely than not it is not true. But if it's again, using words like can may might suggest that more likely than not is real science. And considering this source as well, especially if your algorithm is like me. And whether it's Instagram or Facebook or TikTok or wherever you are, consider who is posting this? Is it a peer reviewed journal? Is it the university or hospital themselves that are posting it? Or is it a Facebook page that's called It's Science or something along those lines? If it's something called It's Science, you're going to want to second guess if this is true or not. But then last and not least, ask yourself when you're seeing a post like this, if this were real, would my neurologist have mentioned it? And to be honest, your answer might be no. You might only see your neurologist once a year or twice a year, or maybe just as needed, so they might not have reached out to you. But the second question you can ask yourself is, why isn't this all over legitimate Ms. Organizations, websites? Why are you having to reach out to people that you trust? Which I am very honored that I am one of those people. But why do you feel like you have to reach out to neurologists that you've worked with or people in the Ms. Space to ask if it's true? If it was true, they likely would be posting about it themselves, themselves? Again, not always, especially when it comes to posting. It can take a while to sit down and create content, but just some things that are getting your brain thinking, okay, could this be true or not? The last thing you could ask yourself is, does this align with what we know about how Ms. Works? Is it realistic that 81% of people who took a drug or therapy or did this thing for six months went from using wheelchairs 100% of the time to now walking independently? Not really. Again, it is possible. I don't want to make anyone feel like it's not. You can exercise. There are things that you can do. But 81% that is just. That is unrealistic. The last place that you could go to possibly see if what you are seeing is legitimate or not is, I believe it's an app. To be honest, I have not used this yet. It just recently came on my radar and I plan on having the founder come on my podcast so that we can talk more about it and what it does. But I believe it's an app called Turn two. All one word, T U R N T O. And what this does is it brings you research for your specific condition and it uses AI to see what is true, what isn't true. And it goes through this rigorous process to determine that. So I Believe that is a site or app where you could put in what you're looking for and see if it is real or not. I could be wrong. Again, I'm planning on having the host on to share more with us, but in the meantime, if you wanted to check that out, that might be a good resource too. I personally feel like this conversation is so important, especially in this day and age where there's just so much content produced by AI and it can be really hard to tell what is true versus not. And I might not even need to say this out loud because hopefully it's assumed, but there can be a lot of harm of false advertising, especially when it comes to populations that are looking for treatments like multiple sclerosis. These articles and content are creating false hope that can honestly lead to crushing disappointment. And not only that, but possibly worse, it may cause people to delay or completely stop what they were currently doing for treatments or proven treatments. Even if they're considering trying a different one or starting one, it may cause them to delay that. And that can be one of the worst things is to hope that this works out. Delay treatment even further and abandoning things that we do know from research is helpful. It can also erode trust in real scientific progress and it can make people cynical about actual breakthroughs. And the thing here is that real breakthroughs do actually happen and it is exciting. But when you are constantly seeing breakthrough after breakthrough and most of them are not true, it does start making you second guess and almost become numb to it. Like when it is actually true, it's not a big deal because you've seen this before, you're not going to believe it now. But the beauty of real research is that it can be exciting and it can be promising. And we have more treatments now than ever before for multiple sclerosis. Real progress can happen. It happens incrementally, not magically or out of nowhere. So I hope that this conversation didn't make you feel discouraged, but more so helped you feel informed and that you now know what to look for so that when something is real, we can get excited, we can feel hopeful for that, we can stay up to date with what's happening in this phase. And did it move on to the next phase? If you are ever in doubt, it's more than okay to ask me. Ask your neurologist, whoever you're asking, whoever you have sent posts to saying hey,
- [28:50]
Missing Link Program Creator
did you see this?
- [28:51]
Host/Podcast Presenter
What do you think? Is it true? Keep doing that. There's no harm in doing that. But hopefully you now feel that you are equipped with the tools to better determine for yourself if something might be true or not. And again, real breakthroughs absolutely do happen, and we should celebrate them. It's very exciting when that happens, even if it is only in phase one. So you deserve accurate information, to make informed decisions, to be hopeful, to be excited. Especially when you're living with a condition where most days you're probably not feeling that way. So hopefully you found this helpful. If you have family members maybe who are sending you all these posts, because we all know that our loved ones, friends, family can often feel like they found something that's the cure for you. And here, let me send it your way. Maybe you want to send this podcast episode to them as well so that they can do research on their own before they clutter your inbox with false hope or false information. Potentially. But yeah, hopefully this was helpful. I will see you next time. Thanks for tuning in.
- [30:08]
Dr. Gretchen Holley
Thank you for listening to today's show.
- [30:11]
Host/Podcast Presenter
I am so grateful to have you as a listener.
- [30:14]
Dr. Gretchen Holley
If you'd like extra resources such as a video of one of my seated exercise classes, my favorite core exercises, and the opportunity to ask me your questions, head to missinglink.com insider. That link will be shared in the show notes along with links to my social media handles. If you loved this episode and think a friend or family member with Ms. Would benefit from listening, please go ahead and text or email this podcast to them right now. Sharing this podcast will help me educate and empower as many Ms. Words as possible. Thanks again for joining and be sure to tune in next week for another episode of the Missing Link podcast.