There is a heartbreaking Facebook post about somebody who is currently unable to type/read/communicate. I don’t know that person’s exact medical details so I can’t comment. However, we really do need to talk about bad medical information from social media AND bad info from medical professionals.
When there’s so much on the line, patients need to learn how to tell the difference between reliable information and unreliable information. I’ve collected a lot of data over the years and the unfortunate truth is that most of the information out there is unreliable. The science world even has a phrase and millions of citations about this topic: replication crisis. What it boils down to is the science journals are filled with bullshit articles whose results can’t be replicated. Here’s a 7 minute video I made explaining the topic:
And that’s the problem with medical professionals. They have no mechanism to deal with the replication crisis and to know when they’re wrong. They have no mechanism to know when they are harming patients. Some of them like Avindra Nath will make stuff up about how their patients recovered. And that makes them dangerous. Social media support groups have somewhat similar problems as people will make stuff up- even if there is no money or clout to be made.
Realistically, a lot of people won’t accept that and will go on to seek treatment from people who pretend to know what they’re doing. And then we end up with situations like the ME/CFS patient who committed suicide some months after HELP apheresis in Cyprus. Or Heidi Ferrer, a Long COVID patient who worsened after her COVID vaccine (which is something that happened to Jack too). She also committed suicide. It turns out that vaccines are highly questionable in people with ME/CFS and Long COVID.
An interim solution
I’m doing my best to collect data on what treatments are associated with recovery:
The surveys have also collected data on treatments are far riskier than you might expect. You can dig up data for a specific treatment here.
So please, be more skeptical. Put in the work to figure out what’s actually true. I try to make things easier (and safer!!) for you by publicly posting survey data, As well, I put up this forum where you can search the names of treatments and find out how reliable the scientific papers on a particular treatment are. But it’s still up to you to put in some work.
I hope this helps you heal and to avoid unnecessary harm. Have a great day!