Dr Nancy Klimas: 7 Feb annual patient conference - “Cellular Energy and its Impact on Health”

[Sasha]

Dr Nancy Klimas is holding her annual one-day conference for patients and it sounds very interesting. Here's Cort's blog on it:

Dr. Klimas’s annual patient conference on Saturday, Feb 7th is approaching fast. Titled “Cellular Energy and its Impact on Health” this half-day conference features some fascinating talks. Two from the Klimas team will sum up eight years of effort focused on attempting to understand and fix what’s happening during exercise. Others will focus on methylation, the recently concluded Synergy trial, and nutrition.

Read more: Increasing Energy in Neuroimmune Disorders: The Klimas Patient Conference http://www.cortjohnson.org/blog/2015/01/31/increasing-energy-neuroimmune-klimas/

Patients can attend both in person or via webcast (which costs $20, I think) and you have to register by 4 Feb.

 

[SDSue]

Thanks for posting this, @Sasha ! I read Cort's post, and while it sounds exciting, I have to wonder - if it's been 8 long years and no new treatments have been offered to Klimas's patients, how life-changing can this be? All these studies are fabulous and give me some much needed hope, but it's time we were offered some choices in treatment instead of waiting for drug trials which can take years.

This is in no way meant as a slight to Dr. Klimas and the others who are working so hard to help us. They do so at the risk of professional ridicule, low pay, and bearing the burden of one of the sickest patient populations imaginable. I appreciate each and every one of them.

Sorry to be a pessimist, but I've been excited about discoveries too many times. That said, I'll likely tune in and see if there's anything I can try on my own, which is a sad testimony to the state of ME/CFS in 2015.

Now, I'm going to hop back on the unicorn and rainbow train, and get about having a pleasant day in spite of it all! Thanks for letting me vent!

 

[Sasha]

Here's a bit more info about the 'eight years' business:

Could Broderick be our Einstein? OK – so Einstein is a bit much to lay on anyone. Broderick, like Einstein, though, can quickly leave your head spinning – even his own team doesn’t always understand what he’s saying, and he wants to fundamentally change the way we approach illness. If he has his way, researchers will be dealing with chronic illnesses in a very different manner in the future.

The first two talks are from the two bioengineering/data mining/modelling experts at the Institute of Neuroimmune Studies at Nova Southeastern University, Gordon Broderick and Travis Fletcher. They’ll be presenting the culmination of eight years of work analyzing hundreds of thousands of data points gathered before, during and after, the big “E”– exercise.

They have data on what’s going on with your genes, hormones, cytokines, immune cells, the neuropeptides while your body is breaking down during exercise. It’s clearly the biggest dataset ever produced on what’s happening during exercise in these disorders.

They used those millions of data points to build explanatory models of disease. We may have gotten a taste of what’s coming year or so ago when Doctor Klimas said, if I remember correctly, that the autonomic nervous system tanks first during exercise – and then drags the immune system down with it.

The NSU team wants to break the chains that are keeping ME/CFS in place That would be more than enough, but it’s not all. They’ve also built virtual models to identify which medications might work best and in what order to get ME/CFS patients out of the “homeostatic lockdown” they’re in. (If you remember, the NSU team believes ME/CFS and GWS patients have their systems set at a “new normal” – a suboptimal set point – that resists movement. That “new normal” brings to mind Dr. Cheney’s statement years ago that after he pushes ME/CFS patients towards health something pushes them back. )

If you can figure out what’s keeping the system stuck in “illness mode”, you have a chance at getting it unstuck. The next step for this very creative group is to initiate clinical trials, and it sounds like they may be in the process of doing that. We’ll see how far they’ve gotten in the two talks – that by themselves are obviously worth the price of admission.

Read more: Increasing Energy in Neuroimmune Disorders: The Klimas Patient Conference http://www.cortjohnson.org/blog/2015/01/31/increasing-energy-neuroimmune-klimas/

Who knows, @SDSue! Sounds good... I wonder if it's taken them 8 years to get enough patients recruited, which would be a bit of a sorry tale, or it they've just cumulated all their data and are giving the big picture.

 

[SDSue]

It does sound good, doesn't it @Sasha ! My fingers are crossed, albeit more loosely than they've been in the past!

From what I recall reading and being told (that's always a gamble with an ME brain), ME/CFS patients are so desperate that most study sites are amazed at how rapidly they fill their subject quotas. Let's hope this is the case here! Sadly, the missing piece, as always, is the severe patient population as they are unable to participate.

I can't wait to see this thread light up after the conference!

 

[Sasha]

Sadly, the missing piece, as always, is the severe patient population as they are unable to participate.

Have you seen this? Looks very interesting!

http://forums.phoenixrising.me/inde...fs-project-update-and-more.35249/#post-552119

 

[melamine]

OTOH, I can't help but wonder if studies involving the bed- and wheelchair-bound population would be used to exclude those of us who "appear perfectly healthy" on those days we don't cancel our doctor appointments, and even relatively, those days we do.

 

[waiting]

Has anyone else registered to attend the conference via webinar?

I've registered but can't see where the link is to actually join the webinar on Feb 7th....?

Thanks.

 

[duncan]

"...eight years of effort focused on attempting to understand and fix what's happening during exercise..."

I think they may be throwing darts at the wrong target.

 

[SDSue]

In preparation for the conference webinar, (because I'm an information junky!) I watched Jon Kaiser, MD's video from May 2014. The first 30 minutes detail the research behind, and results of, the initial small Synergy trial. The final 28 minutes are all about recruiting for the larger formal study he's reporting on this weekend, thus can be skipped.

Enjoy!

 

[Kati]

I have a problem with vendors of this patient conference selling 'tongue and heartbeat assessments'. Alternative medicine and unproven methods of diagnostics is not something I would actually approve of if I was someone that is considered world class such as Nancy Klimas, Mwry-Ann Fletcher and Gordon Broderick.

I also find it appalling that they give access to speak with them providing they pay a little more. Bad idea. Most patients are on disability and receiving social security.

I certainly will save myself 20$. Not going.

 

[SOC]

I have a problem with vendors of this patient conference selling 'tongue and heartbeat assessments'. Alternative medicine and unproven methods of diagnostics is not something I would actually approve of if I was someone that is considered world class such as Nancy Klimas, Mwry-Ann Fletcher and Gordon Broderick.

I also find it appalling that they give access to speak with them providing they pay a little more. Bad idea. Most patients are on disability and receiving social security.

I certainly will save myself 20$. Not going.

Yeah, well, it was probably set up by the university and we all know universities like to get their $$$. While there are plenty of advantages to our researchers being associated with universities, there are also downsides.

 

[Kati]

The last thing we the patients need is to have the disease branded in the alternative world.

 

[Anne]

I still hope something interesting might come out of this. Will anyone be watching and tweeting (or writing a bit of a summary?)

 

[SDSue]

I have a problem with vendors of this patient conference selling 'tongue and heartbeat assessments'. Alternative medicine and unproven methods of diagnostics is not something I would actually approve of if I was someone that is considered world class such as Nancy Klimas, Mwry-Ann Fletcher and Gordon Broderick.

In my previous life, I organized many conferences. Unfortunately, conferences can be quite expensive and often require sponsors. Once ME/CFS is "mainstream", we will have the luxury of more legitimate sponsorships. In the meantime, perhaps it's best to take what we can get so the information can be disseminated?

Besides, aren't all ME/CFS/Lyme doctors actually using what mainstream medicine would call "unproven methods of diagnostics"? And aren't all diagnostic methods unproven until they are proven?

 

[Kati]

In my previous life, I organized many conferences. Unfortunately, conferences can be quite expensive and often require sponsors. Once ME/CFS is "mainstream", we will have the luxury of more legitimate sponsorships. In the meantime, perhaps it's best to take what we can get so the information can be disseminated?

Besides, aren't all ME/CFS/Lyme doctors actually using what mainstream medicine would call "unproven methods of diagnostics"? And aren't all diagnostic methods unproven until they are proven?

The problem I have is that mainstream medicine is not buying tongue diagnosis, like if your tongue is black you have liver problem. (Completely random example) Tongue diagnosis is alternative medicine and is not likely to cross over any time soon.