Tests for ME or CFS patients; CDC and Canadian Consensus

[Guest guest]

~~~~~~~~~~~~~~~~~~~~~~~

Send an Email for free membership

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

>>>> Help ME Circle <<<<

>>>> 15 April 2008 <<<<

Editorship : j.van.roijen

Outgoing mail scanned by AVG AV

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

 

 

Mary Schweitzer <_marymsch_ (marymsch) >

 

 

Tests for ME or CFS patients

~~~~~~~~~~~~~~~~~~~

CDC and Canadian Consensus

 

 

 

I have put the list of tests that the CDC states patients with CFS should

NOT have to compare with the list of tests that the Canadian Consensus Document

SUGGESTS for ME/CFS patients (when appropriate) in two websites to make them

both easy to download and compare side-by-side. In the case of the CDC

list, I took a paragraph and opened it up to bullet points so it would be

easier

for PWC/ME's to read.

 

 

 

The CDC list of tests NOT to give patients with CFS is here:

_http://www.cfids-me.org/cdctests.html_

(http://www.cfids-me.org/cdctests.html)

 

(~jvr: See below A)

 

 

The Canadian Consensus Document's list of tests FOR patients with ME/CFS is

here:

_http://www.cfids-me.org/consensustests.html_

(http://www.cfids-me.org/consensustests.html)

 

(~jvr: See below B)

 

 

Mary Schweitzer

 

 

````````````````````

 

A)

List of Tests the CDC insists that CFS patients should not get

 

 

From the CDC's websites on CFS, as of 10 April 2008:

 

 

*A number of tests, some of which are offered commercially, have no

demonstrated value for the diagnosis of CFS. These tests should not be

performed

unless required for diagnosis of a suspected exclusionary condition (e.g., MRI

to

rule out suspected multiple sclerosis) or unless they are part of a

scientific study. In the latter case, written informed consent of the patient

is

required. No diagnostic tests for infectious agents, such as:

 

 

*) Epstein-Barr virus,

*) enteroviruses,

*) retroviruses,

*) human herpesvirus 6 [HHV-6],

*) Candida albicans,

*) and Mycoplasma incognita,

 

 

are diagnostic for CFS and as such should not be used (except to identify an

illness that would exclude a CFS diagnosis, such as mononucleosis).

 

 

*n addition, no immunologic tests, including cell profiling tests such as

 

 

*) measurements of natural killer cell (NK) number or function,

*) cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or

*) cell marker tests (e.g., CD25 or CD16),

 

 

have ever been shown to have value for diagnosing CFS.

 

*Other tests that must be regarded as experimental for making the diagnosis

of CFS include:

 

 

*) the tilt table test for NMH, and

*) imaging techniques such as MRI, PET-scan, or SPECT-scan.

 

 

*) " Reports of a pathway marker for CFS as well as a

*) urine marker for CFS

 

 

are undergoing further study; however, neither is considered useful for

diagnosis at this time.*

 

 

Taken from the CDC's websites on CFS, 10 April

2008: _http://www.cdc.gov/cfs/cfsdiagnosisHCP.htm#tests_

(http://www.cdc.gov/cfs/cfsdiagnosisHCP.htm#tests) .

 

 

````````````````````````````

 

 

B)

 

List of Tests from the Canadian Consensus Document for M.E./CFS

 

 

Tests for Abnormalities in ME/CFS. (See _www.mefmaction.net_

(http://www.mefmaction.net) for sources of some specialized tests)

 

While there is not one definite test for ME/CFS, many tests may indicate

abnormalities. The standard battery of tests may be inadequate to reveal

abnormalities in ME/CFS patients. Many of the following tests are not available

in

general medical laboratoris but may be available in reseach facilities or more

generally available in the future.

 

 

*) Virology, etc: viral antibodies, including Coxsackie B and HHV-6;

bacteria, mycoplasma, etc.

 

*) 37kDa 2-5A Rnase-L Immunoassay: protein, activity, PKR cleavage &

elastase activity assays.

 

*) Other immunological markers: NK [Natural Killer] cell levels and function

per cell for low NK cell cytotoxicity; CD4-CD8 ratio; ANA; activated immune

complexes - IgG sub-fractions including IgG1 and IgG3, circulating immune

complexes IL2 and IL4; Th1-Th2 response to nitrogen stimulation (high levels of

Th2 idicate autommunity), flow cytometry for activated/elevated lymphocytes;

antilamin antibodies may autommunity and brain cell damage (lamin B

antibodies are evidence of autoimmunity); humoral autoimmunity for polypeptides

of the

nuclear envelope (NE); antibodies in neuronel cells MAP2 (kinase regulators)

 

*) Urinary markers: 24-hour urine free cortisol; elevated

amino-hydroxy-N-methyl-pyrolidine corelate with quantity of symptoms;

IAG-tryptopan metabolite,

is usually positive and indicates a leaky gut, which in turn is indicative

of a leaky blood brain barrier; urinary creatine and other muscle metabolites.

 

*) Endocrine testing: 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 conersion of T4 to T3;

reduced HPA function.

 

*) Increased 5HT neurotransmission

 

*) Chronic Orthostatic Intolerance: Use tilt-table test or monitor the pulse

and blood pressure while standing. Note: This monitoring must be done with

caution and someone standing beside the patient.

 

*) Cardiac dysfunction: 24-hour Holtar monitoring - specifically ask to

either view the results yourself or to report repetitive oscillating T-wave

inversion and T-wave flats. This pattern is typical of many ME/CFS patients but

may not be reported.

 

*) Cardiopulmonary Exercise Testing: AMA Guide for Evaluation of Permanent

Impairment. Lower cardiovascular and ventilatory values at peak exercise help

determine functional capacity, and peak oxygen consumption levels determine

disability categories. See caution in chart on page 4 [of the Consensus

Document].

 

*) Computer Science and Application (CSA): Actigraph is a small device that

measures frequency and intensity of activity in one minute intervals for up

to 22 days. Typically, less intense and shorter activity peaks followed by

longer rest periods are identified. It is helpful to have the patient keep a

daily diary of activities during this period and/or wear a speedometer.

 

*) CNS, ANS: Romberg test; nystagmus test (may fluctuate from positive and

negative throughout the day); altered sympathetic modulations; subnormal

and/or fluctuating diurnal body temperature.

 

*) Cognitive performance: decreased processing speed, working memory,

information learning, etc.

 

*) SPECT scans may reveal significantly lower cortical/cerebellar regional

cerebral blood flow frequently in the frontal, parietal, temporal, occipital,

brain stem and throughout the cerebral cortex.

 

*) PET scans may reveal decreased glucose metabolism in the right

mediofrontal cortex, and significant hypoperfusion and hypometabolism in the

brain

stem.

 

*) MRI brain scans: Elevated numbers of punctuate lesions, particularly in

the frontal lobes and subcortical areas, suggest demyelination or edema. Do

spinal MRI for disc herneation and minor stenosis.

 

*) qEEG brain topograpy: Elevated EEG activity in theta and beta frequencies

and increased intracerebral electrical sources in left frontal region delta

and beta frequencies in eyes closed condition may be identified. Reduced

sources in right hemisphere (beta) may be noted during verbal cognitive

processing.

 

*) Hypercoagulability: flow cytrometry - fibrinogen, thrombin/anti-thrombin

complexes, etc.

 

*) Positive tests for fibromyalgia syndrome and myofascial pain syndrome

should be noted.

 

*) Skin conductivity and skin temperature: The combination of a lower

ability of the skin to conduct electrical current in response to visual and

auditory stimuli, and a higher skin temperature of fingers indicate a

down-regulation of autonomic sympathetic tone.

 

*) Sleep studies may idicate that there is insufficient time spent in the

deeper stages of sleep, and alpha wave intrusion into delta waves within

non-REM sleep

 

*) Ocular test: slowed and marked jerkiness of saccades; difficulty with and

slowed changing of visual fixation, constricted peripheral fields; low

and/or incomplete blinking; small pupils; light hypersensitivity, tear film

abnormalities such as low tear break-up time, inadequate productrion of the oil

or

mucous layer in tears, rose Bengal corneal staining; visual midline shift.

 

*) Allergies or sensitivities; Lung function testing; Liver function: CPK

and liver function.

 

 

 

Source: P. 18, Carruthers and van de Sande, " Summary of Canadian Consensus

Document " : _http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf_

(http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf) [page 24 of the

Adobe

website], accessed 14 April 2008 on the website of the ME/FM Action Network of

Canada.

 

 

The summary is often updated. The most recent version will always be

available if you first

_http://www.mefmaction.net/Patients/Overviews/tabid/122/Default.aspx_

(http://www.mefmaction.net/Patients/Overviews/tabid/122/Default.aspx) and then

scroll down to the link to the ME/CFS Overview. That

page also has links to translations into French, Spanish, German, and Italian,

and links to the Canadian Consensus FMS [Fibromyalgia] Overview.

 

 

 

 

~~~~~~~~~~~~

 

~~~~~~~~~~~~~~~~~~~~~~~

Send an Email for free membership

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

>>>> Help ME Circle <<<<

>>>> 15 April 2008 <<<<

Editorship : j.van.roijen

Outgoing mail scanned by AVG AV

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

 

 

 

(http://www.papercut.biz/emailStripper.htm)