Thread on twitter in which Jennifer Brea and Porochista Khakpour discuss CCI, fusion, and allegations of "predatory" surgeons. (If you double click the picture below it should open the whole "thread" in a new tab.)
EDIT: the forum software recently changed and is displaying tweets now about 5% of the time. Sorry. Clicking the link shown should still work.
Hi if this thread was members only I would have something extra specific to say about the things alleged and more, and am willing to discuss certain things by dm, if anyone is interested. Unfortunately some people that are skeptical of cci , like the twitter account “truthseeker” , have been putting comments from this thread onto twitter and making allegations that are pretty unfounded and inflammatory—- that particular account accused not just Jeff, but also David Kaufman!!!?? of being in on some kind of scam with Bolognese. As far as I can tell, Kaufman is one of the most respected doctors in this field and he is also porochistas doctor, so whatever she thinks about bolognese in particular, I believe she probably does not support these wild allegations that this anonymous account is tweeting.
I certainly have some concerns myself about bolognese but although I am extremely tired and brainfogged id like to try and restate my earlier points in this thread : 1. I believe the possible link between mechanical deformation and me/cfs symptoms is strong—supported by some studies and lots of anecdote, and needs to be investigated further. The mechanical paradigm has more explanatory power that ties together multiple different findings than any other I’ve seen. It explains why correcting metabolic or viral or autonomic issues in this illness often yields temporary results but the body very quickly goes back to former dysfunctional homeostasis.
2. I don’t want anyone to have surgery but I have concerns that expressing too much unfounded skepticism toward even the diagnostic process itself—not just the surgery (which people should consider a terrible last resort possible lesser-of-two evils thing), without actually looking critically at the reasons why this may be overlooked, will slow the enthusiasm of researchers to delve into one of the most promising areas and thus we won’t get non -surgical options soon enough.
3. Truthseeker not only attacked Kaufman, Jeff, Jen and bolognese, he also, with another twitter account, seems to have a quixotic campaign against doctors using not just antiretrovirals but literally any antivirals in me/cfs. He has been wrongly interpreting the evidence and concluding that since Davis didn’t find pcr evidence for any viruses that any doctor using these is a quack and being irresponsible and dangerous. I don’t have the energy to dig up examples of this but you can search his handle as well as his friends (it’s furtiv_incogn?? Or something) for these examples.
4. I am not saying that there are not well-founded concerns about some of the neurosurgeons involved. You will note that one of the people who said the star neurosurgeon pushed surgery for cci too much , was still diagnosed with cci by the more “responsible” neurosurgeon that said she didn’t need surgery. So I don’t know whether we need to assume that even if there’s a concern about neurosurgeons pushing surgery it follows that their diagnoses are wrong.
Also, as far as I can tell, there’s a very salacious tone to some of this that obscures the issue to an extent. It seems like everyone is already aware of the lawsuits against bolognese, but when I did some digging I couldn’t find much or anything on Sandhu, Gilete, or Henderson, and they all had excellent reviews. It seems that neurosurgeons get sued higher than any other profession and you would expect some dirt on these guys. The worst reviews I could find on Henderson were something accusing him of being in cia mind control program , possibly from some mentally ill chap, and a review saying surgery was fine but his aftercare wasn’t great and neither was his bedside manner. i Also finally got into beyond the measurement and I don’t think that what is alleged re: no discussion of this being allowed and some kind of coverup for bolognese is true at all! There is lots of critical discussion of bolognese but also lots of people who love him. It’s just not allowed to discuss the details of the current lawsuits because that could devolve into attacking the claimants. I think that is fairly reasonable.
I actually share a lot of concern about large aspects of this process but I don’t think this whole diagnosis is in the least a manufactured issue and like I said I am happy to further explain certain things by dm but I would love to know if anyoje knows on the IT end what measures can be taken to make some of this whole thing more private ... did we ever identify who “truth seeker” is and if that person was a poster here? I do have more to say about some of the acxounts involved. I don’t feel totally safe with a lot of this. We have to factor that in as part of the discussion, I think that the open discussion of some of this actually skews toward shutting down positive discussion about cci because some of the skeptics are doing things like trawling through members only forums to post comments on twitter and whatnot. So we can’t have a truly open discussion about this but I can point to more literature on this in a second.
Oh and as an aside—besides PEM? I think all of the symptoms of ME/CFS have been known to be accounted for by CCI but just weren’t included as that diagnosis for a while—especially the connection between cci and orthostatic intolerance/autonomic issues.
