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!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Article: CDC at the CFSAC Meeting: Dr. Unger's Job Interview and More

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 27, 2010.

  1. WillowJ

    WillowJ Senior Member

    Messages:
    3,099
    Likes:
    2,716
    WA, USA
    Do we know that HPA stuff is out of whack in ME/CFS when primary depression patients are excluded? I hear this but I don't have any studies to reference. I would like to know one way or the other. I do know that autonomic disturbance does cause ME/CFS patients to react poorly to stress of any kind.

    Since I can't read the full study (what is up with that? the CDC studies are usually free access?) I can't tell for sure, but since it specifically classified CFS as "neuropsychiatric" and and in the context of what the CDC has been saying lately and just the wording of "the individual's stress response"... I would expect her to mean emotional health and behavioral choices (as well as allostatic load). If you don't think so, that's good.
     
  2. WillowJ

    WillowJ Senior Member

    Messages:
    3,099
    Likes:
    2,716
    WA, USA
    Not James Jones... I will echo that! Worst possible choice! Not Unger and absolutely not Jones.

    I agree about not grouping patients together in a disease class. Study them all, stratify them, but don't keep the added people in this disease class. Put them somewhere else and give them a different name. And not idiopathic fatigue; no one should have to live with that label. That's as bad as CFS.

    :In bed: for me, too.

    PEMed... makes sense. :D
     
  3. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    Do we know who any of the other applicants are for this position?
     
  4. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    Yup and guess who gets to decide on the next CFS director?
     
  5. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,363
    Likes:
    1,938
    Australia
    MDD, anxiety etc. = high cortisol response
    CFS = supposedly low cortisol response compared to controls. But in my opinion, the low result is due to CFS patients putting themselves in LOW STRESS situations. The same difference in cortisol response has been measured in other studies between a weekend response and workday response.
    The problem with the HPA axis studies is the majority of their controls have been working and the samples have typically been taken on weekdays, not weekends. What they are actually measuring is the fact that CFS patients often don't work and tend to put themselves in less stressful environments. The studies are useless unless they compare to the same proportion of controls who are not working - on vacation (not travel..) for example.
     
  6. WillowJ

    WillowJ Senior Member

    Messages:
    3,099
    Likes:
    2,716
    WA, USA
    Snow Leopard, thanks for the info. That makes sense. I'd heard that it was opposite from depressed people (unlike claims from CDC), which made sense, and I like your wrong control theory. Yes, we have to simplify if we want to survive. That basic. We should compare cortisol levels to people in the hospital with pneumonia, maybe. :D

    Back to Unger and the latest study, I just don't see how that's any different from Reeves' Wessely school model:

    “This is our current model. You see the brain in the middle. Around the brain, stress is involved, traumatic childhood stressors, allostatic load, maladaptation to stressors, genes interact with one’s reaction to stress, autonomic nervous system, orthostatic intolerance, immune activation... let us look at risk factors, the clinical course of illness, to be able to tease out subtypes. We measure biomarkers in our population studies, as well as knowledge, attitudes, and beliefs."

    http://eo-eo.facebook.com/topic.php?uid=74170609499&topic=9850

    :D
     
  7. WillowJ

    WillowJ Senior Member

    Messages:
    3,099
    Likes:
    2,716
    WA, USA
    I wrote my Senator, told her Reeves and Jones should be dismissed immediately, and everyone else in the CFS dept. at CDC should be put on probation until they could show they could 1) use an appropriate biomedical model and 2) work with the outside research community, the Advisory Committee, and the patient community.

    I sent her info to support the need for this. (including http://www.cfs-news.org/jason.htm and http://www.healthreform.gov/communityreports/delaware/delaware_19711.html and some info on biomedical findings-- if you don't already have something handy that you like to use, the Pain Practitioner article with the sidebar by Komaroff would be fine: http://www.cfids.org/about-cfids/pain-practitioner-spring2010.pdf )

    Also that the new dept head needed to be approved by and continue to enjoy the support of Dr. Lenny Jason, Dr. Anthony Komaroff, Dr. Mary Ann Fletcher, and Dr. Fred Friedberg.

    Hint: go to your Senator's webpage and find the link for getting help with a Federal agency. That way you will be sure to get personal attention rather than just join the thousands of other letters accumulated by office staff which may or may not reach your actual Senator.
     
  8. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california
    Reeves is and always will be a HACK!! I'm surprised how long the CDC allowed him to run CFS into pyschobabble nowhere. How does he live with himself?
     
  9. Sing

    Sing Senior Member

    Messages:
    1,310
    Likes:
    430
    New England
    Thanks so much, Willow, for a very smart suggestion for a more effective route of influence, in this game. I do think that everyone in Washington is preoccupied with the election right now, but I hope we can get on the agenda!
     
  10. WillowJ

    WillowJ Senior Member

    Messages:
    3,099
    Likes:
    2,716
    WA, USA
    I hope it works. :) In my case it made sense because I'm also applying for disability and having some issues related to the application process (and some other snags not necessarily related to ME/CFS), and it was logical to also complain that the CDC is completely mishandling my condition (and has been for decades) and this contributes to the difficulty of people with my diagnosis in getting disability when it is due--and to my doctors ignoring me (and not writing chart notes about my complaints of not being able to do activities of daily living, for instance).
     
  11. Dolphin

    Dolphin Senior Member

    Messages:
    6,816
    Likes:
    5,904
    Thanks Cort for the article

    Thanks Cort for the article. I have been a close CDC-watcher for the last few years and I think you covered the topic well.
     
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,816
    Likes:
    5,904
    Yes, it is an "empirical" criteria study:
    It's free at: http://www.springerlink.com/content/448rxw757184h0lm/
     
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,816
    Likes:
    5,904
    I don't get to read every study but I do follow the literature reasonably closely and haven't seen any studies except the MDD study by Lenny Jason. Other people might tell me if one came along. A Dutch team translated the Symptom Inventory but I'm not sure how many times it has been used and I don't think has it has been used in the way the CDC specified (threshold >=25) and it's the SF-36 and MFI-20 components where the CDC really gets odd.

    In this study:
    the patients had an average score of 59.5 on the CDC Symptom Inventory (for the 8 items) (SD: 13.1). As I said, threshold the CDC uses is 25 which is probably too low.
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    6,816
    Likes:
    5,904
    That's very interesting.
    Is that the four city study - see: http://cdc.gov/cfs/publications/surveillance_studies/index.html ?

    I would be hopeful that Lenny Jason would analyse the data. He usually gets lots of papers out of data sets he has e.g. the 1999 Chicago prevalence study, the 2007 nonpharmacological interventions paper.
     
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,816
    Likes:
    5,904
    Links for James Jones on CFS (in his own words)

    I agree.

    Links for James Jones on CFS (in his own words):

    Collected information on James Jones
    http://www.forums.aboutmecfs.org/sh...-(now-the-real-head-of-the-CDC-s-CFS-program-

    An insight into some of the views of the CDC's James (Jim) Jones
    http://www.forums.aboutmecfs.org/sh...e-of-the-views-of-the-CDC-s-James-(Jim)-Jones
     

See more popular forum discussions.

Share This Page