@@nancyharkness5999 None of the scans we use are part of the clinical suite of imaging sequences. They are still all considered experimental. I can't think of any scans used medically that can detect the inflammation we are seeing, unfortunately. - Jarred Younger
@@lisafawcett1514 hey I have to get “routine” brain scans and CF and fibromyalgia are just one of the diseases I have. Even though Jarred’s work shows that it helps just as I do say that also I have been on the positive side of saying that following his studies, that even the best technology in imagery of the brain doesn’t show the glial cells. As a student we had slides of a very famous physicist with “wild hair” hint. I took the time to count the glial cells because everyone said that there was nothing different from his brain but no, he had more than the usual amount. Our bodies and minds are a true marvel of the hands of a master worker.
Given the preliminary success of Abilify in the Stanford study, what are your thoughts on Abilify for ME/CFS, possibly in combination with LDN? I find it a bit distressing that we do not have any abilify studies, I'd really like to see a long-term followup and a double blind verification of the effect.
I will talk to Dr. Crosby and see if her group is planning a proper RCT. The 2021 retrospective analysis paper is interesting, but I can't make any strong conclusions without the necessary placebo controls. This is a tricky drug, though I do like the low dosages that were used. It is something I keep an eye on and I agree that a well-designed study is critical for moving forward. - Jarred Younger
@@youngerlab Thanks a lot! All I can say is that I tried dozens of treatments, and only 2 gave a significant, lasting improvement (for my ME/CFS): Ketogenic diet and Abilify. But judging from accounts of other sufferers, with Abilify there seems to be a significant risk that it stops working at some point, so we urgently need more research. I also wonder how Abilify fits in with your theory of brain inflammation (that seems very plausible to me).
Ah I had filled out the the pdf that you had listed personally. Since my PSA plus CF/ fibromyalgia is so severe that I am mostly homebound except when I have to go to the doctor now or try to be with friends/family. I would have no idea where to go. Back to severe nerve pain and uveitis. Declining rapidly now even with Humira. Thank you for the information. 😊
I hope you are able to feel better. I'm sorry the Humira isn't helping enough. It works wonders in many cases. I don't know if you have tried the other biologics, but sometimes it is a matter of finding the one that best works for you. There are some reactions to the treatment that can diminish the effectiveness. - Jarred Younger
@@youngerlab that is true Dr Younger. Humira specifically targets the enthesis and it is has been an absolute nightmare to find a rheumatologist. I dx’ed myself and went through too much too write. I actually need a dose q week but I know the side effects. Even though I am not in the medical field anymore I do keep up with at least reading the interactions/interactions and skip through what might be interesting in many studies and that is how in the past that when an issue would come up with a med, a serious one then I would speak directly with coworkers to stop even handling it. Consentyx is more for those as far as PSA ( not effective as any rheumatologist should know) that are more affected externally so yea I have to be on the harder hitting biologic meds and despite that my journey is on the edge and a nightmare for orthopedic surgeons, cardiologists and neurosurgeons. I hope that anyone who has those symptoms can successfully advocate for themselves and yes they are all very related to having a severe virus/ infection trigger plus the genetic side including Sjogren’s, multiple myeloma and just someone who carries those genes that are hard hitting and fully activated since birth. I don’t want to mortify anyone but having even a bit of help with the CF and fibromyalgia has been very helpful. The barometric pressure even is a huge stress getting out with nerve impingement at all levels and inflammation. Thank again Dr Younger and the work you are doing. I look forward to even hearing updates on what you mentioned to me earlier. I wouldn’t know how to know as I totally understand that you have to wait, and rightly so. Thank you!
