I love this sub because mods actually remove most of the usual scams that some of us have had to deal with for decades. It’s the best place I’ve found for M.E.
However, today’s “miracle story” made me think… why don’t we completely block them out?
That one was about dr. Sarno. I remember him from when he published his books.
Absolute quack and it was pretty devasting for chronic illness patients when they got published.
Why?
Sarno says that basically any pain that can’t be seen is not real pain but “suppressed emotions”. He also says that scans, tests and medicine will simply make the patient believe they are sick.
It’s 2022 now. These scams have been around for decades. I’ve been sick for many, many years and seen many fellow patients fall for their BS. I’ve never seen it help. They obviously don’t work. At all.
I just wish we could finally be rid of them. Thanks for reading my rant.
Edit:
By - numbersnum
People like that who have a clear ulterior motive often just make multiple accounts and keep posting. The story you are referring to is back up and the OP is using multiple accounts to post in the comments because the account they used to post the story got shadowbanned. People like Dr. Sarno absolutely are harmful to this community and people in general. However if someone is looking for that type of info they are going to find it anyway. I agree that it shouldn't be promoted but when people post that nonsense here at least there's the chance for others to point out why it's BS. If a recently diagnosed person who doesn't understand medicine well just comes across that on their own all they are going to see is the lies and fake endorsements on whatever website is promoting it.
Oh, I like that outlook actually. If I see that doctors name and I see other people refuting the validity of him, if I run into his name somewhere else later I won’t get fooled. You have a good soul.
True. And this sub is generally great for calling out this snake oil. However, there’s also a post from a patient looking for OP from that “miracle” story. Every time those stories get posted some desperate patient(s) contact them. I can’t describe how frustrating it is to see this endless cycle of new patients getting lured into that crap.
I saw that post earlier & it could’ve easily made me spiral mentally if I was having a particularly bad energy day. I’m pretty new to being this chronically ill so I’d never heard of these types of posts before, thank you for letting us know its fake!!
No problem! And I know how you feel.
[Turns out the story was confirmed to be fake](https://www.reddit.com/r/cfs/comments/xbuv0n/recent_fake_recovery_story/?utm_source=share&utm_medium=ios_app&utm_name=iossmf)
I agree with someone when they said OP has a good heart. For that OP, I thank you. I think my problem is that I don’t know what is fake or not and some stories that get debunked may be valid. My other problem (and main one) is that I am a scientist and unless I have valid scientific method undertaken in controlled experimental conditions with consistent results, I won’t accept the results. There have been numerous times on other reds that people have espoused pseudoscience claiming valid results with no evidence. What I find interesting is that group think takes over and the status quo sides with the smoke and mirrors. If I then post with a position against the status quo citing the 600 peer reviewed journal articles that debunks the hypothesis, I get vilified and downvoted. People generally want fairies and unicorns rather than scientific research.
I have been Ill for over a decade and my opinion on this is that we, long term patients, are most vulnerable because the medical community has failed us by either ignoring our plea for help or by downplaying our suffering. I have fired many doctors because they were not helpful or knowledgeable. I have lots of anger towards the CDC because it ties the hands of good doctors who truly want to help us, yet they can’t because going outside of what is the norm could revoke the doctors license so they are not willing to lose their license for any patient. And those who dare are in jeopardy of being sued for “not following CDC protocol”. What lawn firm is not going to love a case where a “rogue” doctor failed their client? So what are we to do? Well, many of us go online with hopes to find someone with a similar story to see what worked for them so we can try it ourselves to see if it also works for us. And this is where the “snake oil salesman” come and prey on the vulnerable. Reddit is a world-wide social media with thousands of readers and contributors. Not everyone has the best intentions in mind so it is on us to be vigilant on those few bad actors who show up with ill intentions.
"Another person just told me that they had their RSI cured by Sarno's techniques: [https://amazon.com/Healing-Back-Pain-Mind-Body-Connection/dp/153871261X](https://amazon.com/Healing-Back-Pain-Mind-Body-Connection/dp/153871261X). While it sounds like preposterous woo, it has worked in 4/4 cases of people I personally know trying it. (One account: [https://aaroniba.net/how-i-cured-my-rsi-pain.)](https://aaroniba.net/how-i-cured-my-rsi-pain.))" \- Patrick Collison Source: [https://twitter.com/patrickc/status/1559737765566173185](https://twitter.com/patrickc/status/1559737765566173185) That's a literal billionaire and probably one of the smartest people on the planet telling you that there may be some merit to Sarno's ideas, based on his own appraisal of them and anecdotal observations. For those unfamiliar with him, Patrick Collison is incredibly thoughtful and not at all someone who would discuss this lightly. Mayo and other medical bodies are developing a model of chronic pain conditions that posits they are predominantly neurologically-mediated. Whether or not Sarno's ideas work with CFS is, of course, a separate matter. I can't comment on that.
There’s literally zero credibility in anecdotal recovery stories. Zero. People claim a crystal in Brazil has cured their cancer. Should we believe them too? Ps. Mayo has a super bad reputation for chronic illness. Edit: “Whether or not it Sarno's ideas work with CFS is, of course, a separate matter.” Well, I can tell you right now it doesn’t. If it did, we wouldn’t be here. Dr. Sarno was originally all about back pain but just decided that his theory was really the cure to anything. Amazing stuff /s.
\> There’s literally zero credibility in anecdotal recovery stories. Zero. In any individual story sure. That's why you have to unearth them from as many independent sources as possible. If you're trying to figure out how to get better, then you need to triangulate and look for patterns. This is how I built my own approach, and it appears to have succeeded (I won't post about it until I'm absolutely sure). \> Mayo has a super bad reputation for chronic illness. No they do not. Some people here have posted about their very negative experiences. I had an enormously positive experience and, while I don't believe they've found the correct protocol for CFS recovery, they **have** discovered some very fundamental principles related to those kinds of chronic conditions. It was speaking with doctors at Mayo - and in particular a nurse in their chronic fatigue unit - that first convinced me recovery is possible. While they haven't published much on their results with CFS (they should imo and I'm unsure what's going on there), they do have a very solid proven track record with chronic pain conditions.
If they have a great history with chronic pain then post this on the chronic pain subreddit, why are you posting here where it is not relevant?
It's certainly relevant because it's hypothesized that there's a shared mechanism. I'll explain in careful detail in a dedicated post at some point. A Mayo doctor explains it here: [https://www.youtube.com/watch?v=vJNhdnSK3WQ](https://www.youtube.com/watch?v=vJNhdnSK3WQ). I'll note that's almost certainly not a complete model for CFS specifically, but I do believe, based on my own recovery experience and other information I've encountered, that there are important elements in common.
This is subFreudian woo - why do all you accounts spouting the same nonsense always sound the same?
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The plural of anecdotes is not data. Full stop.
I never claimed it was data. But, more importantly, there is **no** data. There are no RCTs for effective treatments. As far as I know, there are no longitudinal studies of CFS patients. So your options are to triangulate using anecdata or to do nothing and accept defeat. I chose the former and that worked very well for me. And I will continue to report on my findings and my personal experience to the community and allow people to judge for themselves. I have received blessings from the mods to do so, so long as I remain cordial and intellectually honest. As for the legitimacy of anecdotes, each individual one may or may not be authentic. But, save for the unlikely possibility of there being a widespread coordinated conspiracy of people across the internet and around the world attempting to perpetrate fraud, a large number of anecdotes can paint a useful picture. And I probably read/watched nearly a hundred of them over the course of my own investigations. I'm very glad that I did.