CDC’s CFS Research Program(CCRP) believes CFS to be psychoneurosis and pretty much always has(1). They have written an extended concept of CFS being the result of something called ‘altered interoception’, which in layman’s terms is a normal healthy person who simply pays too much attention to everyday bodily signs, aches and pains, etc. and falsely interprets these as signs of disease. Say it again with me CCRP, it’s not that hard- psychoneurosis.

They can’t call it psychoneurosis of course, because they know they’d get run out of town if they did so they couch their diagnosis in a plethora of inane and obscure(if not outright made up) words and phrases such as the aforementioned ‘altered interoception’, ‘allostatic load’(according to CCRP, allostatic load is the ‘cumulative buildup of stress experienced over a person’s lifespan’), ‘a complex illness representing alterations in multiple ecologically and biologically interrelated homeostatic systems’, blah blah blah, etc. CCRP has been reprimanded multiple times for just this type of “glossy but meaningless language”(2,3).

Even CCRP researchers themselves are at odds on some of the basic fundamentals of their convoluted theories. While one CCRP researcher, James F. Jones, is giving hospital Grand Rounds on CFS during which he speaks on ‘the concept of allostatic load’, calling it “a concept called allostatic load, which is supposedly your lifetime stress”, and “allostatic load, I don’t know how much you all are doing with, or how much anyone is making sense out of allostatic load”(4) and with one of the questions from the audience of physicians mentioning how they had never even heard of ‘allostatic load’ before, suggesting just how hypothetical this theory is, meanwhile the head of CCRP, Bill Reeves, is going around speaking at official government meetings and on Georgia public tv stating that not only is allostatic load “a physiologic marker” of accumulated stress, but that it’s actually measureable in the blood of patients!(5,6)

Bill Reeves is also on record(7,8,9) stating CCRP believes CFS to be an ‘illness’, as opposed to a disease, which affects the ‘female gender’, as opposed to the female sex, which is commonly noted to be more prone to autoimmune disease, MS, etc, and which possibly results from ‘women being treated differently in society than men’.

CCRP is in constant collaboration with psychiatrists and psychologists from the UK and the Netherlands who are also of the belief that CFS is a behavorial disorder and not a disease. CCRP is also planning as part of it’s 5 year plan to establish Cognitive Behavorial Therapy and Graded Exercise Therapy(CBT/GET) trials, with CBT being used to try and rehabilitate patients ‘faulty illness beliefs’ combined with ‘phobic avoidance of exercise’, ie the patient’s belief that they are actually sick instead of suffering from the behavorial disorder the CBT therapist believes them to be.

In fact Gijs Bleijenberg, frequent CCRP collaborator, in a letter to the Lancet showed just how different CBT for CFS is when compared to how it is used in other chronic illnesses in which CBT is used as a supportive therapy meant to teach the patient to learn how to live with a chronic disease and modify their behavior accordingly and not as any sort of primary treatment with an intent to ‘cure’ the patient. According to Prof. Bleijenberg CBT for CFS is indeed meant to be ‘curative’, specifically by altering the patient’s aforementioned ‘abnormal illness beliefs’ and with the final step in this ‘cure’ being the patient ‘ceasing to label themselves as suffering from CFS’!(10) Put that in your pipe and smoke it!

It should be noted that contrary to his assertions of cures, Prof. Bleijenberg has never reported any sort of objective outcome measure for his CBT/GET trials such as actometer data, as neither have any CBT/GET trials done as of yet.

In fact, in a 2001 CBT study(11) which Prof. Bleijenberg was a part of and which was published in the Lancet, the authors did take actometer data but when the data was analyzed and patients showed no improvement in activity levels when compared to controls the authors simply omitted including the data in the published study while going on to declare the study a success with the actometer data in question only coming to light as a result of a Netherlands’ government study on CFS which was published several years later.(12) Tut tut!

Why this is allowed to go on is a matter of some puzzlement. Not only has the Chronic Fatigue Syndrome Advisory Committee(CFSAC), which you mentioned in your article, unanimously recommended ‘progressive new leadership’ at CCRP, this recommendation was also given by the IACFS/ME, the largest CFS/ME professionals group in the world as well as the nation’s largest patient charity, the CFIDS Association, though I’m not sure if CFIDS Assoc. has stated it in the public forum or not. From what I’ve seen, they just echoed what the other two said.(13,14)

You got any more questions I’ve got a (*&* ton of answers.

1. ‘Dear Sirs, I am sick…’
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0910B&L=CO-CURE&P=R5819&I=-3&X=56AD8B3B2F426181CD&Y

2.”…jargon and undefined terms”, “…glossy but meaningless language”
From CFIDS Association’s response to CDC’s 5 year plan- http://www.cfids.org/temp/research-plan-response.pdf

3.”I find the manuscript very unclear in describing the goals of the research, the methodology, and the results.The authors need to much more precisely describe the work. This means giving it more structure, and carefully defining its terms and then using those terms with absolute consistency.”
From peer review of ‘Chronic fatigue syndrome – a clinically empirical approach to its definition Title: and study’ -2005
http://www.biomedcentral.com/imedia/1971794881730472_comment.pdf

4. James F. Jones, CCRP, presenting Grand Rounds at Univ. of Arizona Health Sciences- OB/GYN
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0909A&L=CO-CURE&P=R3247&I=-3&X=516959382AE060A4F6&Y

5. “People with CFS also have about a six-fold excess of allostatic load—a physiologic marker of accumulated stress and inability to adapt to it over a lifetime.”
Bill Reeves, CCRP Program Leader
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac071128min.html

6. Dr. Reeves: Ok we’ve looked at that with questionnaires and we’ve looked at the cumulative stress with a measure called allostatic load.
Host: What’s that in layman’s terms?
Dr. Reeves: In layman’s terms when you react to stress, every time you react your body reacts chemically. And that accrues, it builds up over time.
Host: And you can actually look at blood work that shows you how much has built up?
Dr. Reeves: You can look at blood work that shows you how much that builds up.
http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm

7. “We look upon CFS as a complex illness, not as a disease. Diabetes is a disease with metabolic pathways involved. CFS is an illness from which various diseases spring.”
William C. Reeves, CCRP Program Leader
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac070516min.html

8. “The data pose a pivotal question: Are the results due to sex (the fact that women have two X chromosomes and men have one X and one Y—primarily a genetic influence) or do they reflect gender? Gender is described as women’s role in their particular racial/ethnic group and society; the ways in which they have to function differently because they are women.”
William C. Reeves, CCRP Program Leader
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac071128min.html

9. Host: Sidenote, you said that there’s higher numbers in the rural areas than you expected.
Dr. Reeves: There were- actually not higher numbers in the rural areas, we asked the question about women.
Host: Ok.
Dr. Reeves: Ok women are very high risk.
Host: Ok.
Dr. Reeves: And women are women because of their sex.
Host: Right.
Dr. Reeves: Women are treated differently in society than men are.
Host: Ok, so wait, I was wrong though about the rural, I thought you said-
Dr. Reeves: It’s gender. What was different in metropolitan and rural is 5 times as many women than men in metropolitan areas have it, twice as many men as women have it in the rural areas.
Host: Huh.
Dr. Reeves: And that is beginning to get us to look at is there something different in the stress patterns of men and women in those areas that account for that difference. Rather than it’s women sex; women or men’s roles and how they’re functioning in their different parts of society.
http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm

10. “We agree that this treatment may not be a cure for all CFS patients, but it certainly has been for at least 35% of those who fulfilled the stringent criteria for recovery in our trial. Recovered patients returned to work and other activities. Everyday bodily signs and symptoms were no longer interpreted as indicating CFS. Most importantly, these people no longer labelled themselves as having CFS. If this is not cure, what is?” -Gijs Bleijenberg, frequent CCRP collaborator
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)08577-X/fulltext

11. ‘Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial’
http://www.ncbi.nlm.nih.gov/pubmed/11265953

12. Van Essen, M and de Winter, LJM. Cognitieve gedragstherapie by het vermoeidheidssyndroom (cognitive behaviour therapy for chronic fatigue syndrome). Report from the College voor Zorgverzekeringen. Amstelveen: Holland. June 27th, 2002. Bijlage B. Table 2. p. 57.

13. Recommendation # 1- Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.
http://www.hhs.gov/advcomcfs/recommendations/05272009.html

14. “It is the opinion of the Board of the IACFS/ME that the current 5 year strategic plan provided by the CDC is unattainable, misdirected, and oblivious to the significant progress and accomplishments made by the extramural scientific and medical CFS community.

Recommendation #1- The CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community.”
http://74.125.95.132/search?q=cache:Cz9iG0fIZ4YJ:www.iacfsme.org/+iacfs/me+cdc+5+year+plan&cd=1&hl=en&ct=clnk&gl=us