Llewellyn King interviews Dr. Alan Pocinki: ME/CFS Alert, Episode 51

[Ember]

 

[alex3619]

My current take on "recovery" is there are mainly two groups. Post viral fatigue, and ME patients, plus of course misdiagnoses. Post viral fatigue patients nearly always recover, usually within twelve months, nearly always within five years. ME patients have much lower recovery rates, of the order of one to ten percent. What we lack is adequate characterization of patients in the early stages of all this, so that we can do proper epidemiology. From the Dubbo studies it can be tentatively inferred that about ten percent of PVS patients get ME. It might be a more severe version of the same thing, or something very different, or something in addition to PVFS.

 

[Sushi]

So, here is what I seemed to hear: He is treating the symptoms that prevent our bodies from resting and getting deep sleep and this allows the body to heal naturally as much as possible?

I wish he had been able to tell us more details of the drug therapies he uses for dysautonomia and sleep.

What did others take away from this interview?

Sushi

 

[GracieJ]

Are there any patients of this doctor on PR? Would be nice to hear from them.

 

[Dufresne]

So, here is what I seemed to hear: He is treating the symptoms that prevent our bodies from resting and getting deep sleep and this allows the body to heal naturally as much as possible?

I wish he had been able to tell us more details of the drug therapies he uses for dysautonomia and sleep.

What did others take away from this interview?

Sushi

I liked the doctor's attitude. I think there's too much defeatism out there among professionals. I believe the best possible drug for sleep problems that addresses three of the aspects he mentions is GHB (Zyrem). It is a muscle relaxant, it numbs pain to some extent, and it's the only prescription medication that induces deep sleep. I can't believe more people are not taking it. I can only think this comes down to a prejudice among doctors against prescribing the 'date rape drug'.

 

[Ember]

Dr. Pocinki comments that the heterogeneity of patients helps to explain why so little has happened in the way of diagnosis and treatment over the years. He sounds like he's talking about a dirty little secret when he responds to Llewellyn King's question on the subject:

Well, I think that's a controversial question. I think one problem certainly in evaluating disease has been the heterogeneity of patients, that the diagnostic criteria do not really identify a homogeneous group. When, you know, in the very early days, right mid/late 80s, even seeing patients who'd come to NIH for an evaluation of CFS, it was clear that they didn't all have the same disease.

And even now when I see patients with CFS, there are some who clearly have a lot more immune dysfunction than others. There are some who may have primarily what looks like a chronic pain syndrome. There are others who have one or other of the joint hypermobility syndromes, like Elhers-Danlos syndrome, which is associated with similar sleep disorders, similar chronic pain, similar autonomic dysfunction. So I think the heterogeneity of patients has been a problem in trying to identify any kind of specific, any kind of treatment, because clearly if you've got patients with different things and trying to give them all the same treatment and trying to make decisions about whether it works or not, it's going to be problematic at best.

According to notes on a 2007 presentation, "Dr. Pocinki began studying CFIDS at the National Institutes of Health in 1987." His special interests include Chronic Fatigue Syndrome, Orthostatic Intolerance, Dysautomia, joint hypermobility and Ehlers-Danlos Syndrome. "Patients voted him a Top Primary Care Doctor in Washington in a major consumer magazine."

 

[voner]

So, here is what I seemed to hear: He is treating the symptoms that prevent our bodies from resting and getting deep sleep and this allows the body to heal naturally as much as possible?

I wish he had been able to tell us more details of the drug therapies he uses for dysautonomia and sleep.

What did others take away from this interview?

Sushi

I'm often struck by Mr. Kings conversational nature and that he asks big questions that draw out very interesting answers from these doctors.

Dr. Pocinki posted this blog at the CAA site in 2012.

http://www.research1st.com/2012/03/05/ans-dysfunction/

Out there on the Internet there is also a video of a talk that he gave to a Ehlers–Danlos syndrome patient group that is worth viewing. I checked into this autonomic system monitoring device he uses (http://www.ans-hrv.com) and of as of a year and a half ago the company who sells I makes the device told me they had almost no distribution in the western United States, but there was usage of the device in the eastern United States. I have been very impressed with Dr. Pocinki's methodologies. Here is the video,

Other comments?

 

[Sushi]

voner

Thanks for the links! There is a lot more specific information there.

I was especially interested as Dr. Pocinki seems to use a very similar approach to the autonomic specialist I used to see.

Best,
Sushi

 

[heapsreal]

Interesting. Would like to know more specifically about his treatments.

 

[heapsreal]

this link explains the basics of how he treats cfs/me/fibro. I cant say there is anything new or revolutionary and it appears it symptomatic treatment, but if we could have all gp's atleast do what he is doing i think it would go along way into helping many of us. He's big into improving sleep and pain as well as using the meds indicated for fibro like lyrica and duloxetine.
http://www.cfids.org/sparkcfs/treatment.pdf

 

[sensing progress]

What happened to the ME/CFS Alert, Episode 51 youtube video?

 

[Sushi]

What happened to the ME/CFS Alert, Episode 51 youtube video?

I don't know but they have withdrawn episodes before and reissued later.

 

[Ember]