News from the Institute of Neuroimmune Medicine (INIM), NOVA, Nancy Klimas

This study has been ongoing a while - they want your 23andME etc. data - but it's a long-term one that needs tons of patients so it's worth mentioning again:

http://www.nova.edu/nim/research/mecfs-genes.html

Interesting short video explaining what's what: https://sharkmedia.nova.edu/media/ME+CFS+Genes+Study/1_06vh90p0

 

"
Join the Institute for Neuro-Immune Medicine as we host, Unrest, the Sundance award-winning documentary about ME/CFS, the most common disease you've never seen. Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.



Saturday, December 2, 2017
The Rose and Alfred Miniaci Performing Arts Center
3100 Ray Ferrero Jr. Blvd., Davie, Fl 33314
Doors open at noon
Screening begins promptly at 12:30 p.m.
Panel discussion with INIM clinicians to follow film screening
A suggested $5 minimum donation fee will be taken upon entrance"

http://www.nova.edu/nim/unrest-screening/index.html



http://www.nova.edu/nim/index.html

 

https://www.youtube.com/watch?v=Aw6ESBGDi5c

 

Love this woman!!

Always enjoy these Solve ME/CFS talks, they do really manage to give a unique insight into the machinery of science to us laypeople.

 

Klimas always presents an optimistic outlook which is good.
I am never quite clear exactly what she is doing though!

She mentions having a large department, large research funding and great facilities etc. But I am never sure how much of that relates to ME/CFS.

Anyway I am very glad she is involved.

 

Lots of Gulf War stuff, but some ME stuff as well - https://www.researchgate.net/profile/Nancy_Klimas

 

Very interesting, well worth a listen.

 

At about 8:40, Dr. Klimas say, "In the ME/CFS world, we have the models. We know what to do. We're ready for human clinical trials."

Later she says their phase one Gulf War study will be their "proving ground" and will be done in about a year.

She also says, "So, I'm hoping to be in a chronic fatigue homeostatic reboot trial by early next year." Since this was filmed in 2017, that might mean early 2018, unless she means early the next year after the Gulf War Illness trial in 2018 - in which case it would be 2019.

ETA: I just realized that it's not clear whether she is talking about a "chronic fatigue homeostatic reboot trial" in humans, or in animals "next year" (then again, would you hire clinical coordinators for animals?)

 

What meds is she using???

 

Definitely humans, and she has the funding available for it. It sounds as if she will go ahead with an ME/CFS trial if the GWI trial results are good.

 

Yeah - It's hard to exactly say, but it sounds like if they get positive results from the GWI trial, then they won't feel the need to develop an animal model for ME/CFS and will rely entirely on the simulations from the In Silico computer system. My impression is that developing the animal model for GWI was probably a lengthy and expensive process, so skipping that step may be what she means by saying that she feels that the "the training wheels will be off" if the initial results from the GWI trial are good.

 

She says that they have hired coordinator for CFS trial and it will start early next year as in 2018. I don't think we are waiting on results from Gulf War Illness trial, at least that is my impression. Maybe it's a small scale pilot cfs trial but I believe it to be 2018. I think we can second guess who is funding it.

 

Sorry, can't follow, could you explain?

 

@Sunshine3 Please see question in #11, above. Thanks!

 

Sort of a recurring theme of Dr. Nahle's interview is that the Solve ME/CFS Initiative is funding some research. He points out that Nancy Klimas' first ME/CFS grant came from The CFIDS Association of America (CAA), the precursor to SMCI. Later he mentions that SMCI has taken a decision to "invest in clinical trials," and finally he mentions that SMCI has just announced a grant for a study involving methylation at Nova Southeastern, Dr. Klimas' university.

Around 15:45, Dr. Klimas talks about international funding in the context of a "think tank" meeting she attended with representatives of "Japanese pharma" who showed considerable interest in the work she was doing.

So, those could be two different sources of funding, I suppose.

 

I don't think this one has been posted. Dr. Klimas discusses her advances with Gulf War Illness and how she was able to use ME/CFS as a comparison model. She shows some great slides and discusses the direction she would like to proceed in for possible future clinical trials.

https://www.youtube.com/watch?v=vEsPWuNNMuU

 

She has two summary slides at the end. These are quite interesting. (The rest is, too )

They are planning a phase 1 trial on ME, but still need the funding. They want to apply to NIH for the phase 2 funding after that.

They are transporting knowledge about GWI (from in silico an animal models) to ME.

 

You watch this presentation and then think about all the nonsense that UK psychiatrists are hypothesizing about ME/CFS... Oh my.

Why is psychiatry stuck in the 19th century?

 

Interesting concept of the "trigger." You could see this happening with some kind of infection coincident with a period of high stress (which pretty much describes my onset).

Also, perhaps getting a bad infection during a time of stress makes it more likely that it will proceed to some kind of mild neuro-inflammation; so the two things may come together more often than merely by chance.

Decades ago, about a month after onset, my neurologist suspected I'd gone through a mild encephalitis (based on my spinal tap).

I've sometimes suspected that the dubious link between ME/CFS and "type A personality / high achievers" might be that such people may tend to jump back into high stress activity too quickly following some kind of viral infection.

 

I wouldn't underestimate pressure from the job. Many people lose their job if they allow themselves to be on sick leave. Lesser reasons are enough to drive people to work although sick - e.g. what might the boss or the colleagues think, I have so much work to do, there's a deadline.

It's not always about choices. Real life today is (and maybe always was?) pure stress, this is the normal setting for most people.