New Dr Kerr Gene Expression study published

Dolphin

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I'm not sure of the chronology here, but just stumbled upon an blog old post which seems to have Kerr commenting on a CDC gene study, so thought I'd post the link in case others' were interested:

http://www.cfidsreport.com/News/06-CDC-CFS-Controversy.htm
Useful link.

There was a lot happening in Ireland at this stage so I wasn't following research esp. US research as closely as I am now but I think few people at that stage were aware that the CDC had changed how they defined CFS for the study. The paper had only come out December 2005 and it isn't exactly that exciting.

I think a lot of people didn't really know about the change until the CDC released the new prevalence figures for CFS (2.54% up from 0.235% in their previous study) around June 2007.
 
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I'm not sure of the chronology here, but just stumbled upon an blog old post which seems to have Kerr commenting on a CDC gene study, so thought I'd post the link in case others' were interested:

http://www.cfidsreport.com/News/06-CDC-CFS-Controversy.htm
So If I got this right the CFS prevelance increased by factor 10! after CDC redefined criteria.

"Critics have charged that it was irresponsible of the CDC to announce changes to the way CFS is handled clinically after limiting their study to genes that involve the way the brain handles stress response."

"In a 2003 study, CDC researchers maintained that the average weekly workload of its CFS research subjects in Wichita was 48 hours per week."

Its the same brilliant logic as trying to understand the patogenis behind chickenpox by including measles and acne in the same cohort. Spots as spots
we say here at ...
 

Dolphin

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So If I got this right the CFS prevelance increased by factor 10! after CDC redefined criteria.
Yes, based on the first CDC study (0.235%), the prevalence was 400,000 adults and you can see that figure mentioned. After the Georgia study, the prevalence was given as 4 million adults.

A lot of people may think that the figure only jumped from 1 million to "at least" 4 million.

That's because there was another study by Jason that found a prevalence of 0.422%. That gives a prevalence of approximately 1 million if you say that some children and people older than 60 have it also.

However if you compare one CDC study with another it's 0.235% to 2.54%.

I think it's best to do that as the CDC do weird exclusions for their studies:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419502/pdf/1471-2377-4-6.pdf

Sample characteristics

One subject attending the clinic was dropped from analysis
because missing data did not permit scoring of any factor
in the SAQC. Demographic and clinical characteristics
of the remaining 339 subjects in the sample are shown in
Table 1 along with the distribution of these characteristics
by fatigue group. Over half the fatigued subjects (145/
277, 52.3%) as well as one not fatigued subject had exclusionary
medical or psychiatric conditions identified during
the clinical evaluation. Medical exclusions identified
during the clinic visit included abnormal blood or urine
tests, abnormal Romberg test, adrenal insufficiency, bladder
tumor, BMI = 47, cerebral palsy, chronic hepatitis,
emphysema, heart disease within 2 years of evaluation,
hypertension, hypothyroidism, inflammatory bowel disease,
kidney cancer, lupus, melanoma, uncontrolled diabetes,
rheumatoid arthritis, self-reported sleep apnea and
narcolepsy, and major surgery within the past year. Psychiatric
disorders included anorexia or bulimia nervosa,
bipolar disorder, delusional disorder, and major
depressive disorder with melancholic features.
-----

I believe many clinicians would find it strange to exclude people from the
diagnosis of CFS if they have an abnormal Romberg test - I have heard
clinicians say they use it to help confirm the diagnosis! Other exclusions
seem questionable e.g. hypertension.

"Critics have charged that it was irresponsible of the CDC to announce changes to the way CFS is handled clinically after limiting their study to genes that involve the way the brain handles stress response.".
This relates more to SNPs i.e. "inherited" genes. Gene expression isn't just about inherited abnormalities and they covered a wider area of gene expression.

"In a 2003 study, CDC researchers maintained that the average weekly workload of its CFS research subjects in Wichita was 48 hours per week."
That wasn't the empiric definition sample as I recall. It shows that when one does a population study, one can pick up a lot of mild people. Also because of their exclusions, it looks like they may tend to exclude a lot of the more severe and severe-moderate patients.

Its the same brilliant logic as trying to understand the patogenis behind chickenpox by including measles and acne in the same cohort. Spots as spots we say here at ...
Yes
 

parvofighter

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Garbage in, garbage out @ CDC

Great info tomk.... and no wonder this CDC research is so thin when they have been excluding clinical symptoms that are well known (to any rational, objective researcher) to be part of the ME/CFS spectrum. I hadn't heard of Rhomberg, altho I'd wondered about abnormal proprioception - my banging occasionally into walls, etc. Another example of this insanity is Kerr's 9th Clinical Parameter for ME/CFS in Table 1 of his 2009 gene expression paper: "Gastrointestinal Problems".

Medical exclusions identified during the clinic visit included ... inflammatory bowel disease
It boggles the mind the level of arrogance/ignorance (new word: "ignarrogance") exhibited by these researchers who arbitrarily decide which clinical symptoms are "allowed" in ME/CFS research, thus ensuring that undesirable results are squelched. So first they loosen the criteria to increase the cohort ten-fold. Then they squeeze out folks with legit physical symptoms that are known to be part of "true" ME/CFS, ensuring that the research waters will be nice and muddy. This is a story of the "God complex" among an unfortunate cadre of physicians, at its very worst.
 

gracenote

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inflammatory bowel disease

. . . no wonder this CDC research is so thin when they have been excluding clinical symptoms that are well known (to any rational, objective researcher) to be part of the ME/CFS spectrum. . . . (from Tom) Medical exclusions identified during the clinic visit included ...inflammatory bowel disease.
So first they loosen the criteria to increase the cohort ten-fold. Then they squeeze out folks with legit physical symptoms that are known to be part of "true" ME/CFS, ensuring that the research waters will be nice and muddy. This is a story of the "God complex" among an unfortunate cadre of physicians, at its very worst.
I agree with your frustration, parvofighter, but disagree with this point. To the best of my knowledge, any one with inflammatory bowel disease would be diagnosed with either ulcerative colitis or Crohn's disease, so by definition they would have those diseases. Since CFS is a diagnosis of exclusion, they would be excluded. Maybe it's possible to have one of those diseases AND CFS but it would not be useful to include them in research.

Found in a web grab:
What Is Inflammatory Bowel Disease?
Inflammatory bowel disease (which is not the same thing as irritable bowel syndrome, or IBS) refers to two chronic diseases that cause inflammation of the intestines: ulcerative colitis and Crohn's disease.
 

CBS

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Levi - Thanks for the link

Levi,

Thank you for the link to the article on the recent HIV finding. I know this is preliminary but this seems like yet another reason for optimism amongst CFS patients, someday maybe even leading to a cure and not just a treatment.

Shane