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

You can view the page at http://www.forums.aboutmecfs.org/content.php?251-CDC-at-the-CFSAC-Meeting

 

I actually don't mind the reference to the 'stress response'. Heart rate variability measures in chronic fatigue syndrome do suggest that the stress response - the way the body reacts to physical, mental or emotional stress is off; the fight or flight aspect of the stress response ( sympathetic nervous system) is turned on and the 'rest and digest' aspect of it is turned down. Plus the HPA axis - the other part of the stress response, his functioning poorly as well. Both of these systems are major regulators of the immune response. and my understanding is that the immune response in CFS is pushed in the direction that one would expect given the HRV and HPA axis readings.

This doesn't suggest that someone with CFS has a poor mental response to stress; it suggests that physiologically their bodies are not reacting to it properly.

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.

 

Cort - my last reply got lost so here goes again. My real frustration (and dismay) lies with Dr. Unger's willingness to continue to squander what little money we have and defend the sins of the past - not your portrayal of them. :innocent1:

She's not the answer, I can only hope someone else gets that job, as long as his name is not James Jones. The arrogance to ignore PEM as central to the disease, and which is so extremely rare, boggles my mind and really got me going. :Retro smile:

I'm hoping Dr. Batemen has found a reproducible way to group patients, it sure seems like the Light data validated her approach and vice versa. I am curious to know how those groupings were made.

Well, I'm PEMed (when did it become a verb?) and am hoping for some sleep tonight so I'm going to call it a day.

:In bed:

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.

 

Do we know who any of the other applicants are for this position?

 

Willow: Thanks for the contact info. We all need to express our intense dislike for Unger. This is just Reeves in a dress. .

Yup and guess who gets to decide on the next CFS director?

 

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.

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.

 

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.

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

 

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.

 

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

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?

 

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.

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!

 

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).

 

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.

 

Latest study from CDC with Unger's name on it:

"Serotonergic neurotransmission plays a key role in the pathophysiology of neuropsychiatric illnesses... We used functional and structural equation modeling (SEM) approaches to assess the contributions of the polymorphism (rs6311), DNA methylation and clinical variables to HTR2A expression in chronic fatigue syndrome (CFS) subjects from a population-based study [so, almost certainly "Empirical," although it's not free full text (?) so I can't check].... This study suggests that the promoter polymorphism (rs6311) can affect both transcription factor binding and promoter methylation, and this along with an individual's stress response can impact the rate of HTR2A transcription in a genotype and methylation-dependent manner."

So yeah, genes plus stress response. Blame the patient.

No to Unger. She does NOT understand this disease. She CANNOT lead the needed revolution towards study of the very real biopathology. She is still stuck in Reeves' Wessely school of thought.

Protest to: Deputy Director Kathie Kendrick, M.S., C.S., R.N.,
Agency for Healthcare Research and Quality (AHRQ) (a HHS department)
Phone: 301-427-1200,
Fax: 301-427-1201,
E-mail: kathleen.kendrick@ahrq.hhs.gov

And: txf2@cdc.gov (Thomas Frieden, CDC Dir.) (hat tip: Khaly, CFS united)

And: HHS Office of Inspector General
Office of Public Affairs
Phone: 202 619-1343
Fax: 202 260-8512
E-Mail: paffairs@oig.hhs.gov

Unless someone better connected has better ideas.

Yes, it is an "empirical" criteria study:

Subjects were classified according to the 1994 research case definition as evaluated by standardized questionnaires (Reeves et al. 2005).

Reeves, W. C., Wagner, D., Nisenbaum, R., Jones, J. F., Gurbaxani, B., Solomon, L., et al. (2005). Chronic fatigue syndromea clinically empirical approach to its definition and study. BMC
Medicine, 3, 19.

It's free at: http://www.springerlink.com/content/448rxw757184h0lm/

 

Dr. Reeves apparently felt when he created it they would come but the research community never came. I haven't been following the research nearly as much over the past year or two but up to then it was my impression that the CDC was the only one that had used the empirical definition up to that point.

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:

Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity.
Vermeulen RC, Kurk RM, Visser FC, Sluiter W, Scholte HR.
J Transl Med. 2010 Oct 11;8:93.

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.

 

Making the data that the CDC has collected over the years could be a very helpful development. As someone who has lived with this illness for a very long time, I hope that someone will look into the patients whose data the CDC collected back in the late '80s and early '90s. I am one of many patients who were interviewed and cognitively tested by the CDC back then. Some patients were given extensive blood tests. The poor excuse for follow-up was a phone call from the CDC every few months, asking if we were all better now (a resounding NO from everyone I knew!) Eventually even the phone calls stopped. Contacting that large group of patients and evaluating their current status would give the patient community something about which we now only have anecdotal information - our long-term prognosis.

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.

 

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

She's not the answer, I can only hope someone else gets that job, as long as his name is not James Jones.

Not James Jones... I will echo that! Worst possible choice! Not Unger and absolutely not Jones.

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