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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
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.
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.
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."
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.
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)
And: firstname.lastname@example.org (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
Unless someone better connected has better ideas.
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.
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.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.
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.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.
That's very interesting.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.