Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[SNT Gatchaman]

Polyneuropathy Patient Asking About FQAD

I've never heard of fluoroquinolone-associated disability but have a patient who fits the demographics and symptoms mentioned on UTD. The patient was the one who suggested it weeks after initial symptoms and workup initiated.

Heartbreaking to see this shocking degree of disability without clear cause and in someone so young. Patient has dropped dozens of pounds, using a walker, of course have PT on board but I'm at a loss and just trying to investigate any reasonable paths of inquiry.

Posting as an example of gender bias in medicine, with some comments supporting this as a real condition (vs "Lyme", "POTS" etc).

I've seen one very convincing case in my career so far. Not at all the typical patient one would associate with POTS, chronic Lyme etc. Gruff retired blue collar Appalachian guy in his 70s with relatively acute onset diffuse polyneuropathy after a course of cipro.

I saw a case of this. It was mind boggling. Young mostly healthy guy, cipro, came to clinic in a wheelchair because he couldn’t walk. Took about a year for him to fully recover. This was probably 10 years ago. He didn’t have any permanent ill effects.

 

[ILoveBees]

Opinions on posts like these? I don't have the brain power or scientific knowledge to even understand what they're saying, but the gist of it is that they apparently found a cure for their specific brand of Long Covid and wrote a book (available for free):

 

[Dude]

Opinions on posts like these? I don't have the brain power or scientific knowledge to even understand what they're saying, but the gist of it is that they apparently found a cure for their specific brand of Long Covid and wrote a book (available for free):

Hmm, this is essentially Scheibenbogen autoimmune hypothesis.

One thing we can already say is that these autoantibody blood tests are of rather limited value. Elevated levels can also be found in healthy individuals. The crucial question is whether these antibodies actually have a functional effect on their respective receptors or not. However, that is still a hypothesis, not an established fact.

In the immunoglobulin thread, we have collected several anecdotal reports from people who experienced improvements with immunoglobulin therapy. However, we are still lacking placebo-controlled, randomized clinical trials. There is expected to be a project investigating this as part of Germany’s National Decade of Post-Infectious Diseases (PAIS). What we can already say, though, is that immunoglobulins are unlikely to help everyone. I know several people who have tried them without any noticeable benefit.

Regarding small fiber neuropathy, there are indications that it may be present in a subset of ME/CFS patients. However, the current evidence is insufficient to establish SFN as either a common or a central disease mechanism in ME/CFS. One of the more interesting findings was significantly increased nerve fiber tortuosity.

Kudos to him for at least making an effort to incorporate scientific studies in his book. However, ultimately, this is not much different from someone simply posting their own hypothesis here. Perhaps it's even worse, because as an individual researcher, it can be particularly difficult to critically evaluate your own position.

 

[Jonathan Edwards]

Opinions on posts like these? I don't have the brain power or scientific knowledge to even understand what they're saying, but the gist of it is that they apparently found a cure for their specific brand of Long Covid and wrote a book (available for free):

It makes no real medical sense. I think it just indicates how easy it is to be taken for a ride by current commercialised and poorly regulated medicine. The antibody tests are meaningless, as Dude says.

 

[SNT Gatchaman]

Top reply in the post Why not to give up when everything seems doomed?

I've lost my friends, my career, my plans for my future, my housing, my entire social support system, my stability, my savings, my energy, my ability to exist without pain. I deal with fear, panic, despair, anger, loneliness, identity crisis, the whole run of it.

but I'm a stubborn bitch. if the world wants me dead, it'll have to try harder.

 

[rvallee]

Reflections on unbelievable suffering

TLDR: made a poll describing the basics of my life at my worst severity for a year without specifying what the description was/mentioning ME, discussing the reactions of incredulity/disbelief

 

[Utsikt]

I’m at the point where I’d take a year of that if it was a cure and I would be back to normal health afterwards.

It would actually have many upsides.

The post doesn’t mention anything symptoms, it would be a massive upgrade to not have to deal with brainfog, pain and everything else. I’m also assuming I would be taken care of by healthcare professionals with not risk of further deterioration, BPS BS or any of the normal stuff we have to deal with. My parents would also get break!

 

[ScoutB]

Leading with examples of disbelieving reactions -> then a description of the scenario -> then explaining it's severe/very severe ME/CFS does seem like it could be an effective way to grab attention.

An insightful comment on the poll thread (link):

While it does not decrease the suffering involved, people underestimate human fortitude under extreme situations. In some ways I think it’s easier for people to imagine that people who go through something like that are now just completely broken and don’t experience things as a normal rational person anymore. The idea that someone just like them could be going through that is unfathomable