Dr. Komaroff’s summary of the IACFS/ME conference is always a highlight. Traditionally the last official presentation of the conference, Dr. Komaroff uses his decades of experience to put the findings of the conference into context.
Dr. Komaroff ALWAYS sums the conference at the end. Why? Because he’s so darn good at it, (and judging from this picture, it looks like he knows it :).)
This is is the first time, to my knowledge, Dr. Komaroff’s talk (audio and slides) has been available to the public. This fifty minute presentation will set the tone for our overviews.
Health Rising’s first overview of the San Francisco conference (the Autoimmunity talk) was published a couple of days ago. Today we feature the Komaroff Video (from the CFIDS Associations Youtube site) and another overview will come tomorrow.
There’s lots to talk about.
If the video is not loading for you, you can access it by clicking here.
So grateful for this video. I hope we will have access to more videos from the conference.
The most poignant part of the presentation is when he stated: “The illness is not simply the expression of somatic symptoms by people with a primary psychological disorder”.
Even after all of my labs by an ME/CFS Dr in another state proving non-functional NK cells, LOTS of inflammation etc, etc…even after having had sepsis, my local health professionals STILL want to try to convince me it’s PTSD, chronic stress, yada, yada. Even citing the ACES study to try to convince me of my neuroses.
It’s incredible isn’t it, but remember this is the same medical profession – just a bit more updated – that believed multiple sclerosis was due to neurosis. Our time will come!
Validating, and emotional… We’ve been waiting a lifetime for this. Ty for bringing this presentation to us.
I’ve said this before, and i’ll say it again: I am prepping myself (technologically) to be a key contributor in developing systems/applications/technology to help solve the problem of lacking funding for research in this field (including the other auto/neuro-immune disorders).
Crossing my fingers that I can come up with something within the next 5 years or so…
Love it Albert!
A very sincere Thank You, Albert!
You don’t often see this kind of commitment–Best wishes & hopes!
Yes, he is very good at summarizing. That is a challenge to summarize a conference of technical stuff and then present your results while the conference is still happening. And he made jokes during the Q/A session too. His clarity is much appreciated.
So, the summary is pretty much what we have known for years. Where’s the results of the “science” taking us? To another conference and another conference and another conference?
Forty years of this, going back to the eighties and a conference I attended with DR Strauss at the NIH, and still no real disease mitigating treatment, especially at the VA in Pittsburgh! Happy day. RP
Cort–Thank you for sending this summary to us. It’s was done very well by Dr Komoroff and I respect him. I’m one of those ‘olders’ who’s just beginning my 60th yr, with the last 22+ yrs hoping to find relief from ME/CFS & Fibro.
I’m probably sending an ‘old’ question but do you have any idea why Dr. Komoroff voted against the approval of Ampligen last year? I read of the evidence from substantial trials that was presented to the FDA showing its effectiveness. I was really shocked when some of the ME/CFS physicians in attendance voted “No”. I wish that we had at least one drug approved for ME/CFS.
I was shocked as well as were others in the room. (You should have seen Courtney Miller….whew! She communicated her dismay very directly) In fact I thought I would never get over it with him but seeing him quickly working with Van Elzakker, seeing him asking questions at the conference, seeing him interact with many people on a high level with ME/CFS, I did get over it.
I think he cost us with that vote but he is also very engaged in this illness – he’s quite a spokesperson for us – I moved on. I don’t that I would have if I hadn’t seen him in person.
I don’t think he felt the evidence was strong enough. I think that’s about it really.
You just never know!
Thank you for letting me learn while propped up in bed on feather pillows because I hurt so badly today! I found the study on transplanted biopsies into mice who then got infected spleens very interesting and would have liked to know more about that session. Over the past 29 years I have given buckets of blood which all came back negative. But it’s got to be hiding somewhere! There should be a tissue test. They developed the spinal tap to test in addition to blood!
Very tired from thinking, Thank you.
Blah, Blah but as I predicted no new drug, no new marker- lots of “close” stuff year after year…… for 35+ years. When I was in School we had a 20Mil grant to work on Osteosarcoma just in one department back in 1985. In another department I was working with Rabbits on a different cancer NIH grant- without money we’ll never get this disease solved! They won’t even give Lipkin 1Mil! Greg
Only the PET scan was new from Japan. It can be used to measure encefalitis. But as always probably we will never hear of this again. I think this test can be a breakthrough.
Cort, you do a truly wonderful job for us…..thanks and more thanks……and really sorry that you have to beg and borrow accommodation. Just know you are appreciated. I keep thinking your brain does a pretty good job at sorting out all this stuff and giving us such clear roundups. i just wish I could follow them as clearly!
Very best wishes,
Phillida
Thanks so much Cort.
As far away as a treatment still seems to be, it feels a lot closer.