6. Diagnosis: M.E. & FM

1)** There are many publications 
dealing with the diagnosing of M.E. and F.M.  I
have read and reviewed as many as possible. Both
M.E. & F.M. are mainly diagnosed by eliminating
other illnesses as the cause of the symptoms, and
by listening to patients' symptoms.  There is no
100% effective test; however the failure rate on
some tests are higher for someone with M.E. or
F.M. than for other illnesses or for a healthy
person.  

     a)** Out of 30 specific tests used to
     diagnose M.E., the average healthy person
     would have bad results on 20% of these
     tests;  M.E.  patients would have poor
     results on 70% of them.  This would
     include tests on the immune system as well
     as brain scans.  Some of the tests are listed
     below.  M.E. patients appear to have poor
     results on more of these tests than F.M.
     patients.  (#93052 Video4 @ 1:10) (Dr.
     Charles Lapp gives specific tests, such as a
     fingerprint loss test).

2)**  Resources  - (#92056 Video3@
0:15);  also #941201- 955  

3)**  Major depression.   The criteria
from the American Psychiatric Association
definition of major depression.  #91033- 69.

4)**  Virus.  The main conclusion
summarized by the world experts on M.E. at the
Dublin Conference held May 18-20, 1994
(#940806-35) was "in conclusion, there was a very
obvious concern among meeting attendees that
there may be a new virus that does not cause
inflammation or narcosis, as is usually expected of
viruses, but which may affect cell metabolism and
be virtually undetectable otherwise."

     a)** Dormant virus.  Many researchers feel
     that there is a virus involved in the illness
     of M.E.  Many discussions refer to the
     feeling that a virus may lay dormant for
     several years and then is activated when
     your immune system is injured (like a
     secondary illness or a car accident). {PO} 
     {This may explain why some people tend to
     say they felt "off" for a number of years,
     then all of a sudden the rug was pulled out
     from underneath them.}

     b)** Epstein Barr Virus & Mononucleosis 
     do not cause M.E.  This has been proven in
     several studies. #91033-43;  (#93052
     Video4 @ 1:01).

     c)** Retrovirus.  (#93052 Video4 @ 0:59)
     (Dr. Charles Lapp)  The reasons or the
     appeal of the Retroviral Theory:

          (1)** Slower delayed onset - like
          AIDS, which is a retrovirus.  You
          can catch HIV, it can lay dormant
          for up to 20 years before the
          development of AIDS.

          (2)** Target area - it targets specific
          areas - the immune system, the
          brain, and muscles, for example.  It
          is trigger required - it needs
          something to start up the virus like
          infectious Mono, or the flu.

          (3)** Occult, or hidden - which
          means once these viruses enter the
          body they don't circulate in your
          body like most viruses.  They enter
          the centre of the cell, join onto the
          gene, the immune system cannot
          find the virus and has difficulty
          dealing with it.

          (4)** Pleomorphism/variable
          expression - they may cause one
          symptom in one person and another
          symptom in someone else.

          (5)** Immune dysfunction - just as
          the AIDS virus.

5)**   How Good Are Diagnosing
Criteria? 

     a)**  Symptoms vary.  Some doctors tend
     to say that it is difficult to diagnose M.E.
     & F.M. as the symptoms are so varied and
     sometimes so vague.  {PO}{I don't believe
     this is correct.  The patients within a
     confined limit vary widely with symptoms,
     severity, therapies and abilities.  They
     don't have all symptoms from every illness
     and every range, eg they don't develop
     bleeding ulcers, heart, liver, or kidney
     problems, or permanent damage.} 

     b)**  Is It Hard To Diagnose?  {PO}{Some
     doctors say M.E. or F.M. are very difficult
     to diagnose.  I feel it is a moderately easy
     to diagnose -  if the doctor pays close
     attention to the major symptoms that the
     patients has, and keeps an open mind.  If
     the illness has been present for more than 6
     months, if other causes have been tested
     for, and if a majority of the "common"
     symptoms are present, a diagnosis of M.E.
     or F.M. can be made.}

     c)**  {PO}{One problem in diagnosing
     patients is the criteria that is used for
     defining M.E. & F.M.  Many  doctors and
     researchers are trying to define the exact
     illness and treatment. They do this during
     one day of testing, and they forget that the
     symptoms can vary from nothing to severe
     within one week, day, or hour.  The patient
     history must be looked at to determine what
     the person has gone through over the length
     or course of the illness.  A good example
     of this is the number of doctors who say
     they find specific symptoms or therapies
     for patients, but don't tell you what stage
     the illness is in - whether the first 6
     months, the first year, the first 5 years, or
     after 10 years.  Symptoms change over the
     course of these illnesses.}  

     d)**  Speech & memory testing.  It is hard
     to test for some of these symptoms in a
     doctor's office, because you are trying
     100% to accomplish a task the doctor is
     giving you.  You will find memory and
     speech problems happen more at home,
     where the little slip-ups you used to make,
     are now very common every-day
     occurrences.

     e)**  Long-term Coping and Limitations. 
     Most patients find that 40% of their time is
     taken up by learning to cope with their
     current symptoms.  The remaining 60% of
     their time is dealing with the after-effects
     of  trying to do physical or mental activities
     - eg I cannot walk any further than 1 block
     without a significant increase in my
     symptoms; both physical and mental
     activities cause an increase in my
     symptoms for hours, to days, to weeks. 
     That's why when a doctor asks "How does
     it affect your life today?", you must remind
     him that tomorrow is when you pay
     for today's activities.  You can lift a
     forty-pound box today 4 or 5 times
     with some difficulty, but tomorrow
     you will be in bed all day as a
     result.

6)**  Centre for Disease Control
(CDC).   In 1988 the CDC put out research
diagnostic criteria for M.E.   #88003.  In 1994 the
research criteria was revised and made broader
#941201.  A small handbook was produced, "The
Facts About Chronic Fatigue Syndrome" - the
second edition contains the 1994 criteria #940808.
The previous CDC definition was very limiting
and about 2% - 5% of the actual cases met this
criteria.  The CDC definition has been used by
many doctors and others to mean "if you don't fit
the criteria, you don't have M.E.".  This has been
a total misuse of the definition, as the CDC states
in  #940808-2. "The case definition was
deliberately designed to define a narrow group of
patients for research purposes." "This research
definition was not designed to be used in the
clinical diagnosis of CFS."  The 1994 criteria is
better, although still very limiting.   The CFIDS
Chronicle (#93017)  put out a special 32-page
edition about the seminar held September 27, 1993
to create this new definition.  In that Chronicle the
1994 CDC definition was blasted by the majority
of specialists and the view of many world experts
were not taken seriously. 

     a)**  Dr. Jay Goldstein (94/06)(#940601 
     Video 5 @ 1:28.), in regards to comments
     about the 1994 CDC criteria change from
     the 1988 criteria, states the following
     "they'll still be really lousy, but they will
     be less horrible than they were before".

     b) One of the problems with the CDC
     criteria is that if you have ever had one of a
     number of other conditions, you cannot be
     diagnosed with M.E. using this criteria, eg
     Lyme disease, hepatitis, depression,
     alcohol or drug abuse, as well as a long list
     of other conditions.  

     c) Another problem is the criteria is
     wrongly used to assess a patient on the day
     that the patient is seen.  With M.E., the
     symptoms vary daily, weekly, monthly and
     yearly.  The CDC definition states
     "Individual symptoms may or may not have
     occurred simultaneously."   Many doctors
     don't follow this.

     d) The CDC constantly makes reference to
     there not being a scientific study,  therapy
     or test, and implies no validity in a
     treatment unless it has been repeatedly
     scientifically studied.  Example, the CDC
     shoots down primrose oil, Co-enzyme Q10,
     Magnesium, and Gingko, yet a vast
     majority of world experts recommend the
     use of these products.

     e) The CDC quotes numbers of patients
     from a simple 2 year, 4 city survey that
     was done, but does not involve patients 
     who don't go to that specific doctor, don't
     go to any doctors anymore, have been
     mis-diagnosed as having F.M. only, have
     psychological or other problems, or don't
     fit the "CDC research definition", which
     they state should not be used for diagnostic
     purposes in the first place. #93029-40.  

     f)** Good studies pass the test of time. 
     Any study must pass the test of time to be
     proven valid.  There have been a number
     of studies that have shown drastic
     conclusions that have been proven incorrect
     over time (eg eating eggs can be extremely
     bad for cholesterol, and bran is a cure-all -
     both studies over time have been
     realistically brought into perspective.) 

     g)The CDC neglects to mention their bias
     as a government agency that sets the
     standard for people receiving disability
     benefits, Medicare, or benefits from the
     insurance companies.  These insurance
     companies have dozens of lobbyists in
     Washington, pushing not to allow the
     flood-gates to open.   The CDC has a
     booklet listing criteria for research
     #941003- 1.    

     h)**  In May, 1992 the results of a
     four-city U.S. Centres For Disease Control
     study of the prevalence of CFS was
     released.  (#92055 Video2 @5:37).  The
     results of that study showed that 82% of
     M.E. patients were female, the average age
     at onset was 30 years, and the average
     duration was 7 years.   

     i)**  CDC #940808 "some patients recover
     completely with time, while others seem to
     get progressively worse.  Often, the illness
     follows a cyclical course, alternating
     between periods of illness and relatively
     good health.  Some patients improve to a
     certain extent but never fully recover."

7)**  CDC Definition  (#950301-4 - ME
Canada).  Following is the revised Case Definition 
for Chronic Fatigue Syndrome, published in the
December, 1994 Annals of Internal Medicine by
the CDC summarized by ME Canada.

     a)** Fatigue  - The patients must have
     otherwise unexplained, relapsing fatigue
     that is new (not life-long); not the result of
     ongoing exertion; not relieved by rest, and
     that results in substantial decrease in levels
     of occupational, social, educational or
     personal activities.

     b)** Symptoms  - Concurrently, the patient
     must have four or more of the following
     symptoms, which have persisted for six
     months and did not predate the fatigue.

          (1)** Self-reported impairment of
          memory or concentration that
          affects the above activities.

          (2)** Sore throat

          (3)** Tender cervical or axillary
          nodes

          (4)** Myalgia

          (5)** Arthalgias. No redness or
          swelling.

          (6)** Headaches of a new type

          (7)** Unrefreshing sleep

          (8)** Postexertional malaise,
          lasting 24 hours.

The method used to list symptoms 
(a check-list or spontaneous report by patient)     
should be stated.

Other Issues Addressed in the Article:

     c)** Other Causes of Fatigue.  It was
     stressed that attention must be paid to
     distinguishing CFS from other illnesses,
     such as neuropsychiatric syndromes and
     deconditioning states.

     d)** Research Studies & Controls.   The
     need to compare studies of CFS patients
     with overlapping disorders characterized by
     fatigue (ie Fibromyalgia and Depression)
     was stressed.  Also comparisons should be
     made with chronic fatigue patients who do
     not meet the CDC criteria.  Normal
     patients should not be used as controls.

     e)** Evaluation standards.  The authors
     recognize the fact that patients with CFS
     often receive inadequate or excessive
     evaluations.  Large groups of patients with
     chronic fatigue have shown that 18% have
     other medical conditions which could cause
     fatigue and can be identified by an adequate
     history-taking and a simple battery of
     laboratory tests.  They specifically decried
     the practice of inappropriate testing.

     f)** Clinical and Laboratory Evaluations
     should include:

          (1)** A thorough history

          (2)** Mental status exam.  Evidence
          of psychiatric or neurologic
          disorders requires consultation

          (3)** Thorough physical
          examination

          (4)** Tests to  rule out other
          illnesses, including the following
          minimum battery of tests

               (a)** Complete Blood Count

               (b)** Erythrocyte
               Sedimentation Rate

               (c)** Chemistry Paten

               (d)** Urinalysis

               (e)** Thyroid Stimulating
               Hormone

               (f)** Further testing may be
               suggested on an individual
               basis, (ie MRI to rule out
               M.S.).

          (5)** Tests to diagnose CFS should
          only be done in a research
          protocol-based setting and the fact
          that such tests are investigational
          only should be explained to the
          patient.

          (6)** Tests not recommended
          include blood tests for Epstein-Barr
          Virus (EBV), HHV-6, CMV,
          Enteroviruses, Retroviruses, and
          Candida.  Also included in this
          category are routine MRI, SPECT,
          PET and Beam Scans.

     g)** The authors then went on to explain
     that conditions which can explain fatigue,
     in their opinion, rule out the diagnosis of
     Chronic Fatigue Syndrome.  Examples of
     such conditions were enumerated and are:

          (1)** A medical condition such as
          untreated hypothyroidism, sleep
          apnea, narcolepsy, and the effects
          of some medications;

          (2)** Previously diagnosed and
          unresolved medical conditions such
          as malignancy and chronic hepatitis;

          (3)** Major psychiatric disorders,
          past or present, including major
          depressive disorder, bipolar disease,
          schizophrenia, anorexia nervosa or
          bulimia;

          (4)** Substance abuse within two
          years before the onset of fatigue or
          any time after the onset.

          (5)** Severe obesity.

     h)** Conditions that do not explain fatigue
     and thus are permitted in the Case
     Definition include, for example:

          (1)** Conditions that cannot be
          confirmed by laboratory tests such
          as Fibromyalgia, anxiety disorders, 
          non-psychotic depression and
          multiple chemical sensitivities.

          (2)** Medical conditions which
          might cause fatigue but have been
          treated adequately, ie hypo-
          thyroidism with normal blood
          thyroid levels.

          (3)** Lyme Disease and Syphilis
          treated before the onset of CFS.

          (4)** Any isolated or unexplained
          physical finding or laboratory test,
          ie a low level positive anti-nuclear
          antibody.

     i)** Idiopathic Chronic Fatigue.  This is a
     new term defined as clinically evaluated
     chronic fatigue that fails to meet the
     above-criteria.  The reasons for failing to
     meet criteria should be specified.

     j)** Name change.  The authors stated that
     they are sympathetic with those who are
     concerned that this name may "trivialize
     the illness" but feel that changing the name
     is not warranted until more is known about the
     underlying pathological process.

8)** flow-chart for step-by-step
diagnosis found in #92048.

9)** CDC is beginning to realize the
seriousness of M.E.  In May, 995 the CDC
briefed the U.S. Congress on the enormity of
M.E., summarized below:

     a)**  Dr. William Reeves, Chief of Viral
     Exanthems and Herpes virus Branch at
     CDC, Harvard Medical School's Anthony
     Komaroff and the Oregon Health Science
     University's Dr. Mark Loveless, provided
     testimony at the briefing.

     b)** Dr. Reeves stated that 76 - 220 per
     100,000 Americans have a CFS-like
     illness.  This is 50 times the earlier CDC
     estimates which pinned the number at 4 - 9
     cases per 100,000, confirmed at the fall,
     1994 Fort Lauderdale conference.
     #950301-18; {PO}{A huge increase like
     this shows that the CDC was not realistic in
     their first estimates and caused harm by
     under-estimating the severity of the illness}

     c)** New CDC estimates indicate that CFS
     is twice as common in the Afro-American
     and native American populations as in the
     white population;

     d)This CDC study also reports that the
     average income of sufferers identified is
     $15,000 per year {PO}{This contradicts the
     damaging definition of "Yuppie Flu"};

     e)** CDC officials have recently added
     CFS to the list of Priority-1 New and
     Re-emerging Infectious Diseases.  Other
     illnesses listed as Priority-1 include
     tuberculosis and E.coli.

     f)**  Dr. Reeves further stated that the
     over-all recovery rate may be as high as
     45%, and the chances for recovery
     substantially diminish after five years of
     illness.

     g)** Dr. Anthony Komaroff, a CFS
     researcher, clinician and principle
     investigator of a National Institutes of
     Health-funded CFS research centre,
     reported on the serious damage to the
     brain found in patients with CFS,
     apparently causing many body systems to
     malfunction.

     h)** In six months CDC has responded to
     over 65,000 requests for copies of the
     newly revised case definition of CFS
     published in the December 15, 1994 issue
     of Annals of Internal Medicine.

10)**  Diagnosing of M.E.  is done
mainly by the elimination of other illnesses 
#92003-16.  The following two sub-sections are
taken directly from the "Physician's Guide"
published by Nightingale Research Foundation. 
Up to 40% of all patients referred to the
Nightingale Research Foundation clinic by
physicians had other serious disease processes. 
These included:

     a)  Multiple Sclerosis

     b)  Localized and metastatic malignancies:

     c)  Brain tumours including gliomas,
     astrocytomas, Lymphoma, leukemias,
     cervical-uterine malignancy, Prostate, renal
     and GIT malignancy  Transverse myelitis

     d)  Post-immunization CNS injury

     e)  Myopathic illnesses including,
     Myasthenia gravis, Mitochondrial
     myopathies, Post-infectious polymyositis

     f)  Vitamin B12 deficiency disorders,
     including Pernicious anemia, Vegetarianism
     and nutritional deprivation, and various
     illnesses related to GIT malabsorption

     g)  Rheumatoid illnesses including lupus
     (SLE)

     h)  Sarcoma

     i)  Renal or hepatic illness

     j)  Infectious illnesses including: AIDS,
     Tuberculosis, Toxoplasmosis  Lyme
     disease (Borrelia Burgdorferi) Brucellosis
     and Q Fever

     k)  Major and Minor Psychiatric  Illnesses:

Up to 10% of referred patients may have
various anxiety neuroses, and panic     
disorders in the absence of M.E./CFS.

     l) Fewer than 5% of referred patients  may
     have:  Major depressive disease (MDD)

     m) Psychopathic personality disorder

     n) Post-infectious schizophrenia

     o) Metabolic diseases commonly associated
     with M.E./CFS:

     Various thyroid illnesses 

     Pituitary-adrenal-ovarian-uterine
     dysfunction Less common, Diabetes
     insipidus

11) Possible Tests Used To Diagnose
M.E. : (92003-17)

     a) Complete work up to exclude
     malignancy, Neuropsychological testing,
     Cognitive impairment M.M.P.I. has
     characteristic pattern, Karnofsky, Wexler,
     Stanford-Binet

     b)  EMG, single fibre jitter

     c)  Anatomical Brain Scan 
     MRI, increased percentage of lesions,
     CT scan is always normal
     abnormal MRI spectography


     d)  Physiological Brain Scan
     SPECT, Xenon & HMPOA scans
     QEEG/BEAM scan
     PET scan


     e)  Endocrine abnormalities
     Abnormal water loading test,
     abnormal ADH
     Prolactin abnormalities
     Increased incidence of TSH &
     thyroid antibodies
     Abnormal Hypothalamic-Pituitary-
     adrenal Axis tests


     f)  Lymphocyte abnormality
     Cross: Lymphocyte phenotype
     subtype FACScan Radial Plot
     Natural Killer Cell cytotoxicity and
     quantity defect
     T-Cell activation plotting against     
     symptomatic disease
     Purple smear
     Increased incidence in abnormal count

     Lymphocyte protein synthesis
     abnormalities.   
     Other blood abnormalities
     Sed rate abnormality
     Giant Cells, abnormal refractile formation
     Relative Macrocytosis


     g)  Abnormal muscle, blood and liver
     mitochondria


     h) Cytokine Abnormality, Interleukin 1
     alpha, TNF, Soluble interleukin-2 receptors
     over 450-2000 units


     i)  Skin testing, anergy with Connaught
     multi-test skin tester
     Abnormal fingerprint biopsy, perivascular
     lymphocyte extravasation


     j)  Immune Globulin defects, Secretory
     IGA, IGG deficiency


     k)  Viral tests
     Suhadolnik: Anti-Viral Pathway, 2-5A
     Synthetase/RNase L


     l)  CBDT Retrovirus Messenger RNA
     probe & culture, Enterovirus sequences in
     muscle and brain


     m)  Exercise Ergometry: increased 
     anaerobic metabolism


12)**  Brain scans 

     a) BEAM scan (Brain Electrical Activity 
     Mapping)

     b)  CAT Scan

     c)**  M.R.I. (Magnetic Resonance
     Imaging) scan.  Small lesions have been
     detected in M.E. patients by these scans,
     operating at 1.4 tessler.  Make sure you
     don't get examined by an older machine
     with less than that.  The lesions may not
     show up, and it's much better to look at the
     full-scale image as opposed to the reduced
     images that most of the technicians work
     from.

          (1)** There are only 4 machines in
          B.C.  The waiting list for this test is
          6 months or longer.  You can get
          this test done within one week's
          time in the U.S. (Bellingham) but
          the cost is $l,500 Canadian.  There
          is a private machine available for
          $1,300 in Vancouver (94/06).   The
          MRI may or may not show
          significant results.  A 1993 study of
          MRI's showed 75% of CFS patients
          had small bright spots on their
          scans, as opposed to 25% of the
          healthy controls. #94023-10; also
          #92056 Video3 @ 6:06.  Dr.
          Ishmael Menna.

     d)  PET scan (Positron Emission
     Tomography) Measures how glucose (or
     sugar) metabolism is working in the brain 
     #91022 Video1 @ 1:50).  

     e)**  SPECT scan (Single Photon
     Emission Computerized Tomography). 
     #940901-4  SPECT scans done in England
     have shown a reduction in blood flow for
     M.E. patients.  

13)** Detailed list of diagnosing
protocols. These are the steps followed at the
Cheney Clinic by Drs. Cheney and Lapp (#92055
Video2 @ 7:20)   " I want to turn your attention to
the basic laboratory evaluation as we see it at the
Cheney clinic and might be of interest to those
practitioners in the audience.  Basically our
evaluation includes a history and physical which I
think is well covered by David Bell.  We do
exclusionary laboratory which we consider most
important to make sure that the patient doesn't
have some other disorder.  We look for serological 
markers, immunological markers, and in some
cases we look at virological tests, or specialized
testing.  Let's look at each area. I think the 
exclusionary tests are pretty well straight forward,
and in addition are covered in your handout so I
will go through them quite quickly.  CBC
Chemistry; CPK for muscles, we test for muscle
disorder; Thyroid Panel; Sedimentation Rate; and
the anti-nuclear anti-body to rule out Lupus; 
Lyme serentology is obtained; and we do a serum
protein electrophoresis (SPEP) as well as a Serum
Immunoelectrophoresis (SIEP) to rule out protein
problems and globulin problems.  A chest X-ray
rules out lung cancer as well as sarcoidosis, and
sometimes (particularly when there are
neurological deficits), we will obtain an MRI scan
not only to rule out mass lesions, tumours, or
other disorders, but also to see if the T2 weighted
UBO's (unidentified bright objects) are present on
that MRI scan.  The immunological markers that
we measure come back to us in a panel, and as
several of the speakers have stated, these are very
difficult panels to obtain.  They have to be done in
very controlled circumstances, and so we take
fresh blood, deliver it directly to our blood flow
psychomotor and we monitor the medications the
patient is on, and their degree of illness at the time
we take these.  With the immunological markers
what we have found is, that absolute lymphocyte
count is frequently low, as I mentioned earlier. 
The T4 count, which is the helper cells, that's
frequently elevated (mostly elevated but sometimes
down).  CD8 is frequently decreased so that when
you look at the CD4/CD8 ratio, or the T4/T8
ratio, since  CD4 is up and CD8 is down,
generally the ratio is very high perhaps 3 to 4. 
DR is a Tcell marker that indicates activation, and
it is frequently elevated in patients with Chronic
Fatigue Syndrome.  CD3 is essentially tells you all
the Tcells you are looking at.  But more interesting
is the combination.  We use two-color flow
psychometry and measure CD3 and DR in the
same cells.  This is a Tcell activation monitor  and
that's frequently elevated.  CD4/45Rs is the
suppressor inducer and those levels are frequently
low.  CD11B and CD8/11B are markers for
suppressor cells that shut off the immune reaction. 
They are typically low.  Now, in our laboratory,
we keep track of all of these levels, and we try to
do statistical analysis on them on a regular basis,
to find which test seems to do the best.  And in
our experience, the CD8, the DR and the CD11B
are probably some of the best predictors that we
have.  But when you look at a pattern, there's no
one test that's going to tell you that a patient has
Chronic Fatigue or not, but if you see a pattern
where the Tcell is activated, the T4 suppressor
inducers are low and the T8 suppressor inducers
are low also, that's a pattern that is very, very
typical of sick  patients with Chronic Fatigue
Syndrome.  Dr. J. Levy had a paper in The Lancet
several months ago, where he looked at three
parameters - he looked at CD/3DR which is an
activation marker, and CD45/45R, and CD11B;
when two of those are abnormal, essentially there
is a 90% chance the patient has Chronic Fatigue
Syndrome.  Interestingly, in that paper, he made
the point that when the patient is feeling better, or
less sick, the activation markers were less likely to
be positive, suggesting that as patients get better
their immune system is getting better as well.  We
use a couple of immunological markers as well. 
For example we have found that soluble IL2
Receptors are much more reliable than
Interleukin2 which is fraught with many laboratory
problems.  So we measure that.  NK cell
cytotoxicity is a very excellent indication - when
the NK cells are not killing properly is only of the
strongest signs of an immune dysfunction such as
Chronic Fatigue Syndrome.  The mitogen
stimulation of T and B cells, which Jim McCoy is
going to discuss in the very near future,  and then
cell medicated immunity - the skin test.  We use
that as a test of immune dysfunction.  Lastly, we
look at 3 serological markers, alpha-interferon
which is sometimes stimulated when a virus goes
into the system.  It is an excellent marker for viral
infections, or persistent viral infections - there is
virtually nothing else that elevates
alpha-interferon.  Alpha-interferon stimulates the
body to fight off the viral infection, and so when it
is elevated it is a very strong sign.  When the
immune system is unregulated it tends to attack
various parts of the body, a so-called
auto-immunity.  And when auto-immunity occurs,
we begin to develop circulating immune complexes
which can be measured.  By way of looking at the
different viruses, many people have talked about
reactivation of viruses, we essentially obtain a
Torch test, serology for HHV6, and  Epstein Barr
Virus (EBV) early antigen serology to see where
we stand on reactivation.  For completeness, for
our very sickest patients, or in those patients that
have been referred to us, because of very, very
difficult diagnostic dilemmas, we will frequently
turn to esoteric tests like DNA amplification.

14)**  Lyme Disease.   The test for Lyme
disease is not very accurate.  Many people are
finding this disease turns into a long-term illness
and the medications prescribed do not get rid of
the disease as fast as some physicians believe. 
There is a large support group system available,
see the "Newsletter" chapter.

15)**  Post-Polio Syndrome  does not
appear to be the same illness as M.E. or F.M. 
#91015-9.  Dr. Franklin Lue and Dr. Harvey
Muldofsky examined 47 polio survivors and found
they have neither the tender points present in F.M.
patients, nor the alpha-EEG sleep disorder that is
present in both M.E. and F.M. patients.

16)**  Other illnesses to eliminate,
especially for F.M. , #93037-3

     a)** Myofacial Pain Syndrome

     b)** Regional Particular Pain Syndromes

     c)** Osteoarthritis

     d)** Rheumatoid Arthritis

     e)** Polymyalgia Rheumadica

     f)**Connective Tissue Disease

     g)** Polymyositis

     h)**Spondyloathropathy

     i)** Hypo-thyroidism

     j)** Neurological disorders. 

17)**  Psychological testing.   MMPI
psychological testing has been used for help in
diagnosing M.E. - this is a long established battery
of tests that was restructured in 1989.  Dr. Linda
Iger, Director of Psychological Services, Chronic
Fatigue Syndrome Institute in Anaheim,
California, as of 1992/10, had done this test on
500 M.E. patients.    (#91022 Video1) and
(#94056 Video3  @ 2:15.)  This has standard
profiles for malingering hypo-chondrosis and a
distinctive standard for M.E.  She believes that the
Social Security Department in the U.S. is asking
for this to be done more often, because of its
ability to diagnose M.E. 

     a)**  M.E. patients forced into the
     depressed mold by psychologists/
     psychiatrists.(#92056 Video3  @ 3:04).  
     Dr. Kurt Sandman, at the Albany World
     conference in 1992 "What are the criteria
     you have to meet using these kinds of tools
     to get a diagnosis of depression? 
     Depressed moods happen most of the day,
     most patients don't actually report this, but
     a careful analysis by a psychiatrist can drag
     this out for sure".    {PO} {Throughout his
     talk he described how psychologists/
     psychiatrists can twist the results of their
     testing to fit what they want, and what the
     government or insurance companies want.}

     b)**  Neuropsychological Tests Confusion.
     (#92056 Video3  @ 4:44).  Dr. Sheila
     Bastien spoke on positive M.E. diagnosis,
     using psychological tests, and on dealing
     with insurance company psychiatrist's
     diagnosis.  Her main point is the
     importance of calling this an "organic
     mental disorder" which means for some
     organic reason, you have a mental
     disorder.  This eliminates the insurance
     psychologist from stating that you scored
     high on depression scales, that you are
     actually depressed, which is causing your
     symptoms.  She has a very high success
     rate of getting M.E. patients social security
     disability benefits (in the U.S.).  She has
     tested over 2,000  patients for M.E.  A
     lawyer, Faye Freshman, speaking at the
     Albany New York Conference (#92056
     Video3  @ 5:07)  said that under absolutely
     no circumstances would she try and claim a
     mental disability, either organic or non-
     organic psychological disorder, and insists
     that it is important to claim this is a
     physical disability not a mental disability,
     as after two years, the insurance carrier or
     government may cancel your insurance
     coverage,  claiming it's a mental disability. 
     

18)**  Chemical Imbalance  - it is
important that you check for this particular
problem.  Some doctors call this "depression"
which I feel has a bad reputation.  What chemical
imbalance means is that there is nothing the patient
can do to prevent this from happening.  Sometimes
the chemical imbalance may give some of the
symptoms that are similar to M.E.   A neurologist
may give you drugs to alter this imbalance, to
eliminate the symptoms.

19)**  Hepatic abnormalities  (elevated
liver enzymes, low grade non-specific hepatitis).

20)**  Epstein-Barr tests  are now
considered meaningless, since 80% of the general
population have the antibodies in their system and
will test positive for this illness.  The medical
profession has a memo stating not to send any
more people for this test because it is of no
diagnostic value.

     a)**  #94009-5. Studies have shown that
     the Epstein Barr Virus is not responsible
     for M.E.  

21)**  Crimson Crescents   #93046-8;
#93009-5    These are crimson (almost purplish)
crescent-moon shaped patches found on the inside
skin of the mouth, just behind the rear molars, on
both sides of the throat, commonly seen in
moderate to severe stages of M.E.   They are
present as a crescentic membrane of tissue that
points towards the uvula.  After a tonsillectomy
the crescents are less defined and the margins are
not as distinct.

22)** Immune abnormalities . The
NAIAD (National Institute of Allergy and
Infectious Diseases) published an article
(#93046-4) in the Journal Clinical Immunology
stating definite immune abnormalities were
detected. 

23)**  Other illnesses .  Even though you
may have a diagnosis of M.E. or F.M., keep
having your yearly physicals and blood tests, since
some patients have been diagnosed and found out
later that they actual had something else (eg M.S.,
Irritable Bowel Syndrome, F.M.,  allergies,
depression, etc.) which might take time to display
in tests.  Certain segments of the population will
get any given illness;  you are still part of the
population.  Your risk of actually getting another
illness might be slightly higher due to your
reduced immune system.  {PO}{Researchers and
doctors can be mislead by this fact - for example I
heard one researcher say that in his study, it
showed that 30% - 40% of all the women he
studied with F.M. stated they had been sexually
abused at one time or another.  The statistics of the
general population have roughly the same.  This
sexual abuse topic was used by this doctor to
explain that the causes of Fibromyalgia were
purely emotional and psychological!}

24)**  Paying for Tests.   You may have
trouble having some blood tests done through your
GP.  There is the option to go the U.S.
(Bellingham) and pay for these services, of which
they seem to do more specific tests.  There is no
test for M.E. or F.M.  There are various tests
that, when they have positive readings, help point
to a diagnosis of M.E. or F.M.  Cautions should
be taken. 

     a)** The money you spend;

     b)** Make sure to use a well-established
     large facility, to avoid shoddy rip-offs; this
     may ensure higher standards and better
     facilities;

     c)** Go to the location to give your
     sample, ask that it be tested immediately. 
     Do not send blood by courier or mail.

     d)** Get a list of exactly what they will be
     testing for, and show it to your doctor to
     get his opinion.  

25)**  Some feel M.E. & F.M. are
the same illnesses.   Many specialists will say
their treatment for F.M. is the same as their
treatment for M.E.  Since both are quite similar,
this makes sense.  However, some people squeeze
this statement together and take "M.E. & F.M. are
the same", which is not what the experts said.  If
you research this topic, you will find:

     a)** Rarely do M.E. experts use F.M. in
     the same context or sentence;

     b)** Some F.M. specialists use the term
     "Chronic Fatigue" when they explain
     symptoms of F.M.  If you research, you
     will find "Chronic Fatigue" is not "Chronic
     Fatigue Syndrome".  Chronic Fatigue is a
     symptom of many illness (see Chapter 4)
     and has one major and only symptom -
     severe fatigue.  Chronic Fatigue Syndrome,
     as defined by the Centre for Disease
     Control (CDC) has numerous symptoms. 
     This is another reason some people
     associate M.E. & F.M. as the same.

26)**  Major flu or virus started.
(#93052 Video4 @ 0:55).  85% of the
Cheney/Lapp clinic patients say that their illness
started with a bout of the flu that would not go
away.  {PO}{When asked by the doctor, "Did a
major flu or virus start your condition?" 40% -
50% of M.E. patients may say "No."  However,
since colds or flus are quite common, someone
might not recognize this as the beginning of the
illness.  M.E. may not start or continue as a major
problem, it starts as a series of stumbles.  You
have the flu, you recover up to 80%, you have
another bout a few weeks later, you recover to
60% of your normal level, and this carries on till
it becomes a major bout of M.E.  This person
would not say "It started with a specific virus". 
The traumatic event explanation for some people
with M.E. may be explained that the person had a
car accident, which affected their immune system,
they  caught the virus that may have started the
M.E., but attributed the start of the M.E.
symptoms to the car accident and not the virus}.

     a)** Latent viruses    #91033; (#93052
     Video4 @ 0:30) (Dr. Charles Lapp)  "If
     you get a bout of the flu or an infection in
     your finger, it's a temporary thing - the
     bug gets into your system, your immune
     system fights the infection, and its gone. 
     For many viruses, bacteria and parasites,
     once you acquire them they stay in your
     system forever.  Some of these are
     reactivations of latent pathogens:
          HSF     EBV     CMV     VZ     HHV-6
          Rheubella     Introviruses     
          Polio
          Borrelia (Lyme disease)
          Toxoplasmosis"

     b)** "The most common types of viruses
     are the top 5 herpes-type viruses - Herpes
     Simplex Virus #1 and #2; Epstein Barr
     Virus; Citomeglo Virus ; HHV-6.  An
     example of the latent virus is the chicken
     pox virus, which goes out of your system
     and settles in your spinal column, then lays
     dormant for many years.  If your immune
     system, for some reason, doesn't work
     properly, the virus will be reactivated, not
     as chicken pox but as shingles, a very
     painful, itching, burning rash."

          (1)** Dr. Charles Lapp believes
          that "agent X"  virus could be a
          cause of M.E. 

27)**  Why call the alarm now?  
{PO}{An analogy that explains the "official
policy" of too many doctors and officials would
be: when the call comes in from 4 different people
that there is a fire in a building, the reaction from
the government to the people in the burning
building is:
"We'll sit down in our safe building and study
this.  Don't warn anyone about it, you just stay in
your building, and wait for our decision.  We'll
study it for 4 or 5 years and tell you if you really
do have a fire in the building."
This does nothing for the people in the burning
building.  I believe action needs to be taken now
about M.E. & F.M. before thousands more get
"burned".}

28)**  Peer reviewed.   After you have
been sick with M.E. or F.M. for a while, you will
hear or read the terms "peer reviewed" and
"peer-reviewed journal".  This means that if
someone makes a hypothesis,  it is checked by
other people in the medical profession (his/her
peers).  This is a necessary step;  however many
people and organizations tend to take this to an
extreme - nothing is valid unless it is "peer"
reviewed, and done in a double-blinded study for
many years.  Galileo, who said the world was
round, had his work "peer reviewed" and was
almost burned at the stake because of it.  There are
a number of articles and opinions that don't get a
chance to be published, reviewed, or financed for
a study.  

29)** All ideas must be taken
realistically.   There are many experts that
recommend the same therapies because they seem
to work on their patients.  I will take the doctor's
advice "before" waiting for peer review or studies.

30)**  Diagnostic Results of Tests.  
#94015-3.  Dr. Paul R. Cheney M.D., Phd,
Charlotte, N.Carolina runs the Cheney Clinic,
testifying before the FDA scientific advisory
committee on the results of over 1,200 M.E. cases
that they have dealt with over a 3 year period:

     a)** 78% met the CDC definition;

     b)** 50% have abnormal MRI scans;

     c)** 80% have abnormal SPECT scans;

     d)** 95% have abnormal cognitive evoked
     brain maps;

     e)** Most have evidence of Tcell
     activation;

     f)** 80% have an up-regulated T-5A
     anti-viral pathway.

31)** Muscles Biopsies .  #941106-5 
Muscle biopsies were abnormal in up to 70% of
M.E. patients studied by William Behan.