CDC Roundtable, Multisite Study and Dr. Klimas’ Attempt to Permanently “Reset” Chronic Fatigue Syndrome (ME/CFS)

https://twitter.com/user/status/1050124608437870592

 

https://www.healthrising.org/blog/2...tisite-klimas-reset-chronic-fatigue-syndrome/

 

This to me is the interesting bit:

https://www.healthrising.org/blog/2...tisite-klimas-reset-chronic-fatigue-syndrome/

Dr. Klimas’ team has gathered an amazing amount of data on what happens during and after ME/CFS patients’ Achilles heel – exercise. Measuring ME/CFS patients at nine time points before, during and after exercise, she’s gathered data on gene expression, cytokines, flow cytometry, cell function, neuropeptides (9 million data points total) in ME/CFS and GWI.

The models found that exercise first kicked off a mess of inflammatory pathways in ME/CFS which then faded in importance. Four hours later oxidative stress, the autonomic nervous system, stress and sensory pathways, and HPA axis pathways became upregulated. The models indicated that if you could tamp down inflammation and then try to reset the HPA axis, the system might revert to normal.

At least one major disease group thinks Dr. Klimas has struck gold with her approach. The Parkinson’s Foundation is apparently so excited at the possibilities of computational biology that they wanted to transport her and her entire team into Parkinson’s research. When that thankfully failed, they gave her a nice, big budget to get access to the computational modeling platform and train another team how to use it.

(The Parkinson’s effort will use the Institute’s modeling platform to understand the dynamics of the central nervous system in producing the disease. Studies are already underway using mouse models (Parkinson’s has a couple of them) to improve the current model.)

In return, she asked the Foundation to fund a 20-person ME/CFS trial. That trial is expected to begin this fall. It will include post-menopausal women and use the same drug combination (etanercept and mifepristone) used in the GWI trial.

Mouse models in GWI indicated that using the drugs in a staggered protocol – first to tamp down inflammation and then to reset the HPA axis – caused the immune, autonomic, hormonal, etc. systems of the mouse to normalize. Klimas does not have an animal model for ME/CFS, but the computational biology modeling has for years suggested the same will happen in ME/CFS. She just hasn’t had the funding to test it until now.

The participants will do an exercise test – then take down inflammation using etanercept for a month and then rebalance the hormonal system using mifepristone. If the model is correct, the treatment combination will push ME/CFS patients’ systems back to health.

The Gulf War Illness trial started earlier this year. I don’t know the results. The ME/CFS trial should either have started by now or be beginning shortly. (It’s already filled up.)​

I find it hard to gauge this work, though, and I have the impression that not many publications come out of that lab. If she's got tons of data on what happens to us post-exercise, I wish she'd publish it so that other researchers have a chance to build on it and so we have more evidence with which to bat off the whole 'deconditioning' argument.

 

I don't like to speak ill of the dead, but can you imagine this happening under the tenure of the CDC's Dr. William Reeves (who unexpectedly died in the summer of 2012) ?


To quote German physicist Max Planck, "A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."

Or the pithier version: "Science advances by funerals (or 'tombstones')."

 

Absolutely.

Perhaps she feels her time is better spent pushing forward rather than breaking to write papers/ get published. Not being a researcher i don't know. But actually my quality of life would be hugely improved by not having to be afraid of visiting the GP for fear of being coerced into GET or sectioned in order to have it forced on me. I mean of course i want a cure, but being safe would be good enough for now.

 

I am frustrated by this kind of reporting. Having worked in research myself ...there is\or should be an obligation and imperative to report (positive or negative results) to further scientific understanding...it’s almost a code of conduct.

Perhaps Klimas et al need to stop doing interviews and soundbites for Cort and knuckle down and report their findings?...I can’t take them seriously without anything to look at ...otherwise it’s just “trust me I know what I’m doing, aren’t I witty and clever....give me more money and time”....sorry that’s not good enough. It’s almost like they are the expert without any credentials ...hmm perhaps I’m old fashioned but if you have nothing that’s good enough to report formally ..shut up please until you have something meaningful to say...otherwise it looks like blatant self promotion.

 

It's a Corticle.

 

Fluge and Mella tried etanercept before and halted the trial very early due to worsening of some the initial patients.
Would be interesting to see if anyone else has data on etanercept. (enbrel) It's a common drug for RA so should be plenty of ME patients on it.

 

At least over the years Nancy Klimas has published a lot of papers, unlike someone like Byron Hyde who almost never seems to knuckle down and write papers. And I hear that Byron Hyde takes long periods off to write fiction, so it's not as if it will be impossible for him to find the time.

 

He publishes nothing because there is nothing whatsoever there to report.

 

Well, he claims that ME can be definitively diagnosed with brain scans, but I remain sceptical until I see the data. I'm afraid I am sceptical of a lot of what he says.

 

Yes, but with regards to cytokines, generally it appears she only reports the positive results? There appears to be a distinct lack of replication over the years? It means I take the volume of discussion in press articles with a big pinch of salt. I agree though she isnt the worst.

I think lack of negative reporting is a big problem, but in the case of ME it’s more personal to me.

In the absence of negative reporting you have to assume the lack of report means they didn’t find anything. I just wish they were a bit more thorough

 

There is a reason no one uses SPECT scans anymore.

 

Why is that? I don't follow the general literature so have no idea.

[Aside: a number of years back, I asked a radiologist relative about using SPECT scans. He said it would take him 40-45 minutes or so to set them up, which would not be very practical for busy radiologists]

 

Well it’s easy to change the results by for instance taking medications. Hyde’s buddy Goldstein observed decades ago that sending patients for a SPECT scan was of no use to him anymore since a drug he gave them could change the pattern of brain activation within seconds and in the opposite direction than expected (improvement in symptoms was correlated with worse blood flow). So the notion that this test diagnoses some kind of permanent brain damage due to virus in the brain or whatever scare-mongering irresponsible things he tells people...

 

Yeah, Hyde troubles me. He claims to have 'the one true way' to diagnose ME but doesn't publish anything that can be used to verify that. From what I understand, he can't interpret the results either, so relies on someone else to tell him. It's all a little like Chinese whispers.

 

I've not used Enbrel but Humira (another anti-TNF type drug). Did get a low positive result with less pain and viral type symptoms. It was only a short trial through a doctor with an interest in experimental treatments (now dead sadly).

Dr Kerr had this on his list of things he would like try before he lost his clinic.

 

Interesting. A person I know had the test under Byron Hyde and there was something about cognitive exertion before it. I think it was to ensure you did cognitive exertion before it (possibly the day before it) to get a positive test. The patient wasn’t sure how to do this and not relapse.

Byron Hyde couldn’t read the results.

 

He has written a book. I have not read it so i can't attest to its content or accuracy.

I had a spect scan done by a dementia neurologist a few years back. I even got a copy of the images though they mean nothing to my untrained eye.