1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Ember, Oct 18, 2013.

  1. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,781
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,485
    Likes:
    11,960
    Logan, Queensland, Australia
    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.
     
    WillowJ, Purple and Sushi like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,091
    Likes:
    6,061
    Albuquerque
    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
     
    WillowJ likes this.
  4. GracieJ

    GracieJ Senior Member

    Messages:
    483
    Likes:
    794
    Utah
    Are there any patients of this doctor on PR? Would be nice to hear from them.
     
  5. Dufresne

    Dufresne almost there...

    Messages:
    379
    Likes:
    233
    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'.
     
    sensing progress likes this.
  6. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,781
    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:
    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."
     
  7. voner

    voner Senior Member

    Messages:
    233
    Likes:
    146
    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?
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,091
    Likes:
    6,061
    Albuquerque
    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
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,675
    australia (brisbane)
    Interesting. Would like to know more specifically about his treatments.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,675
    australia (brisbane)
    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
     
  11. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    9
    Tucson, AZ
    What happened to the ME/CFS Alert, Episode 51 youtube video?
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,091
    Likes:
    6,061
    Albuquerque
    I don't know but they have withdrawn episodes before and reissued later.
     
  13. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,781

See more popular forum discussions.

Share This Page