Since a commenter has claimed that CFS can be faked be people who are too lazy to work, I refer here to three newly-published Belgian studies proving that there are biological signs proving that CFS is real. These are not blood tests which are commonly performed, and therefore, many doctors will never do them to prove conclusively that their patients are truly ill. (One of my doctors, on getting negative results on basic first-round blood tests, decreed there was nothing to be gained by doing additional testing; in fact, negative results on the most common blood tests are to be expected with CFS – those conditions must be ruled out before CFS can be considered. When I had one of the uncommon tests five years later, one which tests for infection or inflammation, the results were so "sky high" that they were assumed to be lab error until a re-test was even more "off the charts". [direct quotes from doctor’s office])
1. Decreased expression of CD69 in chronic fatigue syndrome in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]
2. Not in the mind but in the cell: increased production of cyclo-oxygenase-2 and inducible NO synthase in chronic fatigue syndrome. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]
3. Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]
SUMMARIES
Decreased expression of CD69 in chronic fatigue syndrome in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print] Authors: Mihaylova I, Deruyter M, Rummens JL, Bosmans E, Maes M. Affiliation: MCare4U Outpatient Clinics, Belgium. NLM Citation: PMID: 17693977
Patients with chronic fatigue syndrome (CFS) suffer from immune abnormalities, such as immune activation and decreased immune cell responsivity upon polyclonal stimili. This study was designed to evaluate lymphocyte activation in CFS by using a CD69 expression assay. CD69 acts as a costimulatory molecule for T- and natural killer (NK) cell activation. The expression of the CD69 activation marker on T cells (CD3+, CD3+CD4+, and CD3+CD8+) and on NK cells (CD45+CD56+) was significantly lower in CFS patients than in healthy subjects. Patients with CFS show defects in T- and NK cell activation.
Not in the mind but in the cell: increased production of cyclo-oxygenase-2 and inducible NO synthase in chronic fatigue syndrome. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print] Authors: Maes M, Mihaylova I, Kubera M, Bosmans E. Affiliation: MCare4U Outpatient Clinics, Belgium. NLM Citation: PMID: 17693978
CFS is accompanied by signs of increased oxidative stress and inflammation in the peripheral blood. We found that the production of COX-2 and iNOS was significantly higher in CFS patients than in normal controls. There were significant and positive intercorrelations between COX-2, iNOS and NFkappabeta and between COX-2 and iNOS, on the one hand, and the severity of illness, on the other. The results suggest that a) an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiology of CFS; b) the inflammatory response in CFS is driven by the transcription factor NFkappabeta; c) symptoms, such as fatigue, pain, cognitive defects and the subjective feeling of infection, indicates the presence of a genuine inflammatory response in CFS patients; and d) CFS patients may be treated with substances that inhibit the production of COX-2 and iNOS.
Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print] Authors: Maes M, Mihaylova I, Bosmans E. Affiliation: MCare4U Outpatient Clinics, Belgium. crc.mh@telenet.be. NLM Citation: PMID: 17693979
Chronic fatigue syndrome is accompanied by an activation of the inflammatory response system and by increased oxidative and nitrosative stress. Nuclear factor kappa beta (NFkappabeta) is the major upstream, intracellular mechanism which regulates inflammatory and oxidative stress mediators. Production of NFkappabeta were significantly higher in CFS patients than in controls. There were significant and positive correlations between the production of NFkappabeta and the severity of illness as measured with the FibroFatigue scale and with symptoms. The results show that an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiogy of CFS and that the symptoms of CFS reflect a genuine inflammatory response in those patients.
It is suggested that CFS patients should be treated with antioxidants, which inhibit the production of NFkappabeta, such as curcumin, N-Acetyl-Cysteine, quercitin, silimarin, lipoic acid and omega-3 fatty acids.
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Yes, any applicant for Disability benefits can claim to have any condition they please, but receiving benefits is not automatic. The approval procedure is designed to verify their claims, with medical professionals reviewing the medical records, doctors confirming the findings of the patient’s own doctors, psychiatric evaluations, and a VocRehab expert evaluating the whole package to determine if the person is able to work satisfactorily (e.g., adequate attendance and production). (See footnote)
It is ironic that the doctors on behalf of SSDI and my private Disability insurance noted worse problems than some of my treating physicians, and that every one of the psych evaluations has stated that the psych diagnoses made by the MDs are wrong, the psych could find no evidence of that condition, and noted that my symptoms were those of a physical ailment because the emotional factors required for a psych diagnosis were missing. (People with fever or flu have fatigue, difficulty concentrating, pain, etc., without warranting a depression diagnosis.)
N.B. Making a claim on your Disability insurance is no more suspicious than making a claim on your homeowners or car insurance. I had a job which required me to repeat "1 person in 3 will become disabled, at least temporarily, before age 65", and after repeating it often enough, you scare yourself. I was the primary breadwinner, so it made sense for us to buy the insurance, just like it makes sense to insure your primary asset (your house) to ensure you won’t be living in your car after a fire. However, the insurance does not replace your whole paycheck – I could be earning more than twice as much as a paralegal (plus health insurance, which I currently pay for myself, and contributions to a retirement plan, which would add a substantial amount to my take-home pay); it is a help in paying the bills, but not an incentive to quit work. In the 7 years that I have been working part-time instead of full-time, my Social Security retirement benefits have gone down by $200 a month, and will continue to go down every year that I work part-time.
If that poster is correct that this blog is well-read in the medical community, then I'm glad. Maybe they'll learn something from it about things that CDC will not publicize because they contradict Reeves' psych/stress theory. My primary goal is to get my fellow patients the correct treatment so they don't wind up permanently disabled as a result of trusting doctors who use disproven/outdated treatments and don't know what's currently recommended, and so they get the tests that will help them prove their Disability claims.
FOOTNOTE:
Work Feasibility Evaluation Checklist
Program in Occupational Therapy
Washington University School of Medicine
Section 1 - PRODUCTIVITY
Quantity - amount of dependable work output
Quality - quality of dependable work output
Attendance - reporting to work on assigned days
Workplace Tolerance - remaining in the workplace for the assigned duration
Timeliness - Reporting to work and returning from breaks on time
Work Task Instructability - ability to perceive, understand, and follow work instructions
Work Task Memory - ability to remember instructions, procedures and rules
Concentration - ability to focus attention on assigned tasks
2 comments:
Dumb question: Where would I find the information both about what should be ruled out first, and what should be tested to determine CFS? I definetly have somthing fatigue-oriented lingering, and I want to investigate further (10 minutes on an excercise bike should not make me want to go to sleep - but I can walk in the mall or whatever for a good hour or so, although I'll be tired for 2 hours after...). Bonus: is there a list of "CFS-knowledgeble" doctors out there? I'm trying to find a new one, and I don't think this one's listening.
Hey, Allura!
I have found that different levels of exertion have different effects. Walking at a normal speed (akin to your exercise bike), I can go somewhere 6 blocks away and back, and fall into bed for the rest of the day. But if I "mosey", I can manage the trip with, as you say, a couple hours rest afterward, and still get some work done later.
See DFWCFIDS.com's Cheney on Cardiology article for some explanation of why that happens.
Co-Cure.org has a list of good doctors, ImmuneSupport may also. Some are experts, some are just "CFS friendly" (like my current one, who believes it's real but is not well-read on the subject ... Mike assesses the patient before making that referral; someone who knows what they need and just needs someone licensed to write prescriptions will do better with my doctor than someone who needs the doctor to tell them what to do). I'd urge you to put reviews on RateMDs, warning about doctors who don't listen.
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