# Top 10 Tests for ME and CFS labeled patients



## M&M (Jan 20, 2002)

This is a long piece that I received via Co-Cure. I've paraphrased it, edited it a bit, and divided it into sections, just to make it more "reader friendly" for us here on this forum. It's great information that every patient should be aware of!!For the fuller list, and way more details, please visit the NAME website here: http://www.name-us.org/MECFSExplainPages/T...normalities.htmThe CDC routinely claims that there are no tests currently available to test for ME/CFS. However, there are a number of "non-routine" tests that can clearly identify this illness in patients, and can be used for diagnostic and disability purposes.This Top 10 List was created by scientists and clinicians, and it firmly contradicts the false CDC claims that there are no tests for this disease.I have listed each test in it's own post, hoping that will make everything load faster than 1 gigantic post.*TEST #1*Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration._Why it's useful:_In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in CFS patients. However, the results from the second test indicate the presence of a CFS related post exertional malaise. It might be concluded then that a single exercise test is insufficient to demonstrate functional impairment in CFS patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to CFS.Legal and Scientific Considerations of the Exercise Stress TestCiccolla, Stevens, Snell, Van Ness, ©2007 The Haworth Press http://www.cfids-cab.org/MESA/Ciccolella.pdf "This article examines the legal and scientific basis on which an exercise stress test can provide medically acceptable evidence of disability for the CFS patient." This research group's excellent work proves the post-exertional disability that ME & CFS patients suffer, much worse on average than heart failure and COPD patients._It's a valuable test whose results are highly credible:_This test is mentioned in the book Disability and CFS: Clinical, Legal and Patient Perspectives with this comment by Dr. Daniel Peterson:"One objective and reproducible technique for determining and measuring functional disability that should be used consistently is Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration. The test is well established, sedentary and ill norms are published and the technology is relatively inexpensive and quite available. Approximately 1700 patients [as in 1997] have been tested over the past 10 years and the test is now used on the initial visit to screen patients, to direct rehabilitation, and adjunctively to determine disability."Diminished Cardiopulmonary Capacity During Post-Exertional Malaise(Abstract) J. Mark VanNess PhD, Christopher R. Snell PhD, Staci R. Stevens http://www.name-us.org/ResearchPages/Resea...lStressTest.pdf


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## M&M (Jan 20, 2002)

*TEST #2*Brain neuro SPECT & PET scans and MRI brain scan_Why it's useful:_Brain imaging shows that, amongst other abnormalities, ME/CFS patients have reduced blood flow to the brain (especially to areas that are involved in autonomic nervous system functioning and in sleep, concentration and pain, including the pre-frontal cortices, the anterior cingulate and the cerebellum); altered patterns of brain activation; reduced grey matter volume; altered serontonergic neurotransmission and reduced acetyl-carnitine uptake.Patients with ME/CFS require more brain regions to perform tasks, ie. they have to work harder to achieve the same resultsas healthy controls.One particular area of the brain - the Wernicke area, essential for understanding and formulating coherent speech-showed evidence of reduced activity after exercise.Dr Hiro Kuratsune from Japan gave a summary of what is known about brain function in ME/CFS. It has been known for over a decade that frontal and temporal lobe blood flow is reduced in ME/CFS, and that exercise exacerbates this reduced blood flow for up to 72 hours. The new evidence is that elevated elastase and RNase-L levels correlate with reduced blood flow. It isknown that the MRI is abnormal in the majority of people with ME/CFS due to numerous T2 weighted hypertintense foci, withevidence of demyelination.Patients with more brain abnormalities tend to be more physically impaired.The remarkable similarity in the brain images of patients with ME/CFS and multiple sclerosis was noted.Dr Gudrun Lange from New Jersey, USA, stated what can be said with certainty about the central nervous system findings inME/CFS:1) the major cognitive problem seen is in information processing2) studies showing reduced cerebral blood flow are starting to show consistency3) there is a problem with serotonergic neurotransmission in the hippocampus and anterior cingulate regions4) there are spinal fluid abnormalities5) fMRI studies are showing altered patterns of brain activation.


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## M&M (Jan 20, 2002)

*TEST #3*Mitochondrial Dysfunction (2 possible tests):1). The magnetic resonance spectroscopy(MRS) bran scan is a most informative of the bran scans for ME/CFS. It indicatesmitochondrial dysfunction.2). Dr. Myhill in UK has a lab that screens for mitochondrial dysfunction (one test that she has opened up to patients from US)_Why they're useful:_MRS scanning has found abnormally high lactic acid spikes near and around the hippocampus in ME patients' brains which indicates mitochondrial dysfunction, a central feature being found in just about all cases through the UKs BioLab testing. An MRI is good for ruling out gross abnormalities such as tumors and obvious areas of brain damage while the SPECT can help verify hypoperfusion in the brain.From 2007 IACFS/M. E. Conference:Dr Jonathan Kerr from London stated that his gene expression studies are finding three main abnormalities in ME/CFS patients: these involve the immune system, mitochondrial function and G-protein signalling. There are seven genes upregulated in ME/CFS - those associated with apoptosis, pesticides, mitochdonrial function, demyelination and viral binding sites. Kerr mentioned three genes in particular: gelsolin, which is involved in apoptosis and amyloidosis; one that is upregulated by organophosphates, and a mitochondrial gene involved in the demyelination of nerves.Mitochondrial abnormalities in the postviral fatigue syndrome. Behan WM, More IA, Behan PO Department of Pathology,University of Glasgow, Scotland. Acta Neuropathol 1991;83(1):61-5:"We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes. These abnormalities were in obvious contrast to control biopsies, where even mild changes were rarely detected. The findings described here provide the first evidence that PFS may be due to a mitochondrial disorder precipitated by a virus infection."


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## M&M (Jan 20, 2002)

*TEST #4*TH1/TH2 imbalance _Why it's useful:_There are two general branches (Th1/Th2) of the immune system. Some patients appear to have an over activation of the anti-inflammatory (Th2) branch and an under activation of the pro-inflammatory (Th1) branch of the immune system. This could cause increased rates of allergy and sensitivity on the one hand and difficulty fighting off pathogens on the other.


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## M&M (Jan 20, 2002)

*TEST #5*Natural Killer Cell Function (Activity) testing_Why it's useful:_Natural Killer (NK) and T-cell Dysfunction NK and T-cells are two other components of the immune response to pathogens. A set of chronic fatigue syndrome (ME/CFS) patients have been shown to have reduced NK cell numbers and poor NK and T-cell functioning. These problems also could interfere with the ability of the immune system to find infected cells and kill them. Intriguingly some researchers believe that chronic immune activation due to an underlying chronic infection has caused these cells to 'burn out'.


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## M&M (Jan 20, 2002)

*TEST #6*Abnormalities of the 2-5A pathway (RNase-L ratio)_Why it's useful:_(Impaired Cellular Immune Response) Two abnormalities in the responses cells have to infection in the 'interferon pathway' have been documented. An antiviral enzyme in this pathway called the RNase L has been shown to be fragmented in many patients. A subset of chronic fatigue syndrome (ME/CFS) patients also display increased activity of another enzyme called protein-kinase R (PKR) that is involved in killing cells infected with pathogens. These problems suggest the immune systems of chronic fatigue syndrome (ME/CFS) patients could have troubles finding pathogens and killing the cells they've infected.(Note: Immune function Test #s 4-6 are objective markers of pathophysiology and severity) Anthony Komaroff (Professor of Medicine, Harvard) summarised the immune abnormalities that have been demonstrated in ME/CFS. These include:- activated CD8 (T cells) - poorly functioning Natural Killer cells - novel findings (seen only in ME/CFS) of abnormalities of the 2-5A pathway (RNase-L ratio)- cytokine abnormalities (pro-inflammatory dysregulation) - increased TGF, and 27 times more circulating immune complexes than in controls


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## M&M (Jan 20, 2002)

*TEST #7*Virology; specifically viral antibodies, including coxsackie bacteria, and HHV6 mycoplasma_Why it's useful:_Dr Dharam Ablashi from Santa Barbara, USA, showed that RNase-L was found to correlate with HHV-6 infection in ME/CFS and that RNase-L protein is a marker for active infection.Enterovirus infections have previously been reported in UK studies but have not been much explored by US researchers. Enteroviruses are a genus of RNA viruses that includes echovirus, coxsackie virus and poliovirus. In a recent US study by John Chia from California of 108 patients with ME/CFS who underwent gastric biopsies, 100 revealed chronic inflammation and 80% were positive for VP1 (enteroviral capsid protein - first used by Professor James Mowbray et al in the UK in 1988). Enteroviral RNA was detected in 33% of patients.Symptoms observed in ME/CFS are compatible with a viral aetiology.Many infectious agents have been cited as implicated in ME/CFS including EBV, Lyme, parvovirus, enteroviruses, Q fever, RRV, mycoplasma and HHV-6.Over the last ten years there has been increasing evidence that infection is most likely to be a prime cause of ME/CFS."Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue."Journal of Clinical Virology 37 Suppl. 1 (2006) S33S38Andreas M. Kogelnik a, Kristin Loomis b, Mette Hoegh-Petersen c, Fernando Rosso a,c, Courtney Hischier b, Jose G. Montoya a,c,**Stanford University School of Medicine, Stanford, CA, USA*HHV-6 Foundation, Santa Barbara, CA, USA*Palo Alto Medical Foundation Research Institute, Palo Alto, CA, USA


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## M&M (Jan 20, 2002)

*TEST #8*Heart Function (at least 2 possible tests)1). Impedance Cardiography (Peckerman procedure: 10 minutes lying down FOLLOWED by 5 minutes standing up) - this is the equivalent of a standard tilt-table test, which may be used as a reliable test too2). 24 Hour Holter Monitoring: repetitively oscillating Twave inversions and/or Twave flats during 24hour monitoring._More information about the tests:_If the doctor insists on a regular exercise stress test, then that stress test must be followed the next day with another one to show the extreme disability. For more information on why that is required for ME/CFS patients, you can go to these 2 places: http://www.cfids-cab.org/MESA/Ciccolella.pdfhttp://www.name-us.org/ResearchPages/Resea...lStressTest.pdf _Why they're useful:_Dr. Charles Lapp says in his recommendations for people with this disease, up to 97% demonstrate vasovagal syncope (neurally mediated hypotension) on tilt table testing.The inability to sustain upright activity (standing, sitting or walking), is very common and may be an important component in ME/CFS. Upon limited standing, the patient experiences overwhelming exhaustion, an urgency to lie down, confusion, malaise, and worsening of other symptoms. Sitting and light walking are tolerated better than standing still, but no upright activity is tolerated well. Lying down helps alleviate symptoms. Tilt-table testing may be helpful in diagnosis but some patients may have a normal tilt-table test and still have severe COI. Quiet standing in the office allows for observation and monitoring the blood pressure and pulse. Dr Paul Cheney found evidence of diastolic (cardiac) dysfunction in ME/CFS, with evidence of another cardiac abnormality (patent foramen ovale, or PFO). This results in hypoxia (low oxygen levels relative to metabolic needs). Cheney stated that the cardiac index of ME/CFS patients is so severe that it falls between the value of patients with myocardial infarction (heart attack) and those in shock.


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## M&M (Jan 20, 2002)

*TEST #9*Neurocognitive testing & sleep studies_Why it's useful:_Neurocognitive: To ascertain neurological abnormalities in brain neuro SPECT scan, disability representative may have a licensed psychologist perform a battery of 6 neurocognitive tests to test mental performance.Cognitive performance: decreased processing speed, working memory, information learning, etc.Sleep Studies:All or any of the following may be present:1) impaired sleep efficiency, 2) significant fragmented sleep architecture, 3) movement arousals, particularly if there is an associated pain syndrome, 4) absence or significant decrease of type 3 and 4 sleep, 5) abnormal REM sleep pattern 6) changes in daytime alertness and 7) sleep reversals.


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## M&M (Jan 20, 2002)

*TEST #10*Endocrine testing_Why it's useful:_- CT scans may show reduced adrenal gland size- thyroid hormone levels with attention to bioavailability of T3 & those with reduced level should be checked for selenium as it regulates conversion of T4 to T3- reduced HPA function


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