P2P workshop Dec. 9 & 10, 2014

[Nielk]

Work in exercise testing for disability function which Snell works on needs to show whether the disability is due to decinditioning.

He looks at effort VO2 peak.

 

[Nielk]

On second day testing he sees a drop of 14% from first day on peak VO. 2 and drop on VAT.

This would not show on a deconditioned person.

 

[dancer]

"Volumes are now written and spoken upon the effect of mind upon the body. Much of it is true. But I wish a little more was thought of the effect of the body on the mind." - Florence Nightingale

He says she is his hero, and if we look for a new name for the disease, her name would be a good one.

 

[waiting]

Dr. Snell gave an excellent presentation -- very strong. I hope the panel is listening carefully.

 

[Hope123]

Dr. Kogelnik needs to stop saying "chronic fatigue" -- CFS acknowledges that this is more than fatigue. I respect his efforts but please get the name right, esp. when speaking to an outside group of panelists.

 

[dancer]

I was just thinking that, @Hope123. I respect Dr. Kogelnik so much,, and he's sharing important info...but I cringe every time he says "chronic fatigue" ..... We need a new name.... but in the meantime at least don't shorten it to CF (which is much broader and vaguer than ME/CFS)

 

[catly]

Kogelnik emphasized 3 well run trials (as compared to CBT/GET trials) that should be "screaming" to NIH for follow-up: Valcyte, Rituxan and Ampligen.

 

[Nielk]

Fred Friedberg.

Self management.

Goal is to correct the maladaptive activity patterns. These are based on CBT (really?)

 

[GalaxiiGrl]

Fred Friedberg's presentation (maladaptive behavior) doesn't seem to fit in with Snell's and Kogelnik's.

Edit: treatment at a "community mental health center....." Whoops, I mean community health center. Freudian slip there, Friedberg?

 

[dancer]

Fred Friedberg.

Self management.

Goal is to correct the maladaptive activity patterns. These are based on CBT (really?)

Blech. I don't want patronizing help to "manage" my life with illness. I want research to help TREAT the illness!!!!!!

 

[GalaxiiGrl]

You can cure your ME/CFS at home with booklets and CDs!!

 

[dancer]

This is SO frustrating to listen to. As with auto-immune disease, ME/CFS fluctuates...so agonizing about "why am I functioning worse today?" is a useless effort if the ILLNESS is worse that day. Self-monitoring doesn't give us answers about why we are better or worse when the illness has a fluctuating course and it's just a lot of speculating.

 

[Nielk]

The best part about Fred's speech: " I'm going to stop right there.."

 

[Hate ME/CFS]

I was just thinking that, @Hope123. I respect Dr. Kogelnik so much,, and he's sharing important info...but I cringe every time he says "chronic fatigue" ..... We need a new name.... but in the meantime at least don't shorten it to CF (which is much broader and vaguer than ME/CFS)

Our illness should be called by it's correct name, CFIDS. Our false advocacy group, the CAA/SMCI, Pandora, WPI don't even call it that anymore, and that lumps us in with general everyday fatigue. Those groups need to step aside, and quit hindering our already rocky road.

 

[Nielk]

Spotila. It was suggested that the Oxford criteria should be retired, shouldn't studies using Ixford criteria be dropped from the sudy?

Great question that is not being answered IOM.

 

[Nielk]

Can someone remind me what the purpose of this P2P really is? To show the gaps in research? For what purpose? NIH is not funding any research anyway. This is a joke. A very sad joke.

 

[Sing]

@dancer and any others losing sound or image, I went back to the link at the beginning of this thread to get back into sound and image, which I too lost a few times.

Best part of Fred Friedberg's talk for me was right near the end around 4:35 when he brought up autonomic dysfunction. There has been far too little mention of this today, in my view. Anyway, one thing his study tracked was Reduced Heart Rate Variability too, which is indicative of autonomic dysfunction, and he found it had the highest correlation for degree of sleep difficulties, as well as low exercise capacity and poor outcome. That is as well as I could recall what he said then, which was fast and I was trying to write stuff down.

Dr. Kogelnik, though he used the term Chronic Fatigue, said at the end that he doesn't use CFS or the CFS code for his patients at all!

Along with a number of people here, I was also frustrated and irritated by the first three presenters this afternoon, and a lot more interested in the later presentations and questions. To try to do the first three justice, or cut them some slack, I can look at their presentations as perhaps having a value in terms of a model for some research studies down the road. Dr. Klimas said something like this too. I expect Dr. Klimas will knock it out of the park tomorrow when she talks.

The people in the room who know the most about this illness got increasingly frustrated today, was my impression, so when they did speak, their remarks were much more focussed, trenchant, critical, and clear. Dr. Snell, Dr. Kogelnik, Dr. Klimas, Dr. Fletcher, Dr.Vernon, patients....

 

[Bob]

Thanks everyone for all the comments and discussion on this thread today. Twas great commentary.

A tip re the video and sound cutting out:
The streaming was continuously cutting out for me until I changed the settings. First of all, choose standard quality video instead of high definition. (You can select 'SD' at the top-left of the video.) Then, at the bottom-right of the video there's a little cog-wheel symbol. Click on that and then choose a low-quality streaming speed. When I selected the lowest quality settings then it stopped cutting out for me. (Unfortunately, I didn't discover this until late in the day!)

 

[Sasha]

Thanks everyone for all the comments and discussion on this thread today. Twas great commentary.

Seconded! Thank you, everyone.

 

[Kati]

High comorbidity of CFS and fibromyalgia. Could treatments of fibromyalgia help with CFS?

What nonsense. Unbelievable.