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Web: http://www.cfs-news.org/faq.htm
Posting-Frequency: weekly
Version: 1.37 (last revised 1997/08/02)

Version: 1.37 (last revised 1997/08/02)

This document is quite long (about 1600 lines) and you may wish to save it =
as a file or
print it out. It will be easiest to refer to this document as a web page, a=
t
http://www.cfs-news.org/faq.htm. To read how to obtain the latest version o=
f this
document, and for e-mail readers who cannot receive it as one large file, s=
ee Section
0.03 below.=20

 The CFS FAQ

Frequently Asked Questions

  C O N T E N T S

Part 0: Administrivia
0.00 Copyright
0.01 Introduction
0.02 Disclaimer
0.03 Where to get the current version of this FAQ

Part 1: General
1.01 What is CFS?
1.02 What causes CFS?
1.03 Is CFS a "real" disease?
1.04 Who gets CFS?
1.05 Shouldn't this illness have a better name?

Part 2: Medical issues
2.01 How do I find good medical care for CFS?
2.02 What symptoms are used to diagnose CFS?
2.021 CFS definition
2.022 Clinical views
2.03 What are the specific treatments available for CFS?
2.031 Avoid stress
2.032 Medications
2.033 Role of exercise
2.034 Dietary changes
2.035 Secondary problems
2.036 Article references
2.04 What is the role of stress in CFS?
2.05 What research is currently going on?
2.06 How does CFS usually begin?
2.07 How long can CFS last?
2.08 Is CFS contagious?
2.09 Is CFS genetic?
2.10 Do people die from CFS?
2.11 Is CFS related to depression?
2.12 Is CFS related to AIDS?
2.13 Does CFS increase the likelihood of cancer?
2.14 How does CFS affect children?
2.15 How does CFS relate to pregnancy?
2.16 How does CFS relate to other similar illnesses such as fibromyalgia, m=
ultiple
chemical sensitivities, Gulf War syndrome, neurally mediated hypotension, L=
yme
disease, candida, etc.)?
2.17 How does CFS relate specifically to fibromyalgia?
2.18 How does CFS relate to neurally mediated hypotension?
2.19 How does CFS relate to the Epstein-Barr virus?

Part 3: Life problems created by CFS
3.01 How does one live with CFS?
3.02 How do I find support groups?

Part 4: Income security: Job and/or disability benefits
4.01 How do I handle problems about my job?
4.02 What problems do I face in seeking disability benefits?

Part 5: CFS information resources
5.01 What other FAQs are available?
5.02 What books are available?
5.03 What newsletters and magazines are available?
5.04 What CFS resources are available on Internet and Usenet?
5.05 What CFS resources are available on other electronic networks?
5.06 What national organizations are there?

Part 6: Important information
6.01 What else is important for me to know about CFS?
6.02 What is "May 12 / International Awareness Day"?

Appendices
A1. Articles on-line
A2. Common abbreviations
A3. Further information
A4. Changes to this edition
A5. Development of this FAQ
A6. Credits

------------------------------

Subject: Part 0: Administrivia

------------------------------

Subject: 0.00 Copyright

The CFS FAQ is copyright (c) 1997 by Roger Burns on behalf of the CFS Inter=
net
Group. Permission is granted to redistribute or quote this document for
non-commercial purposes provided that you include an attribution to the CFS=
 Internet
group, the contact address of CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU,
the FAQ's version number and date, and at least two locations from which a =
current
version of this FAQ may be retrieved (see Section 0.03). For any other use,
permission must be obtained in writing from Roger Burns
(CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU).

------------------------------

Subject: 0.01 Introduction

This document answers frequently asked questions (f.a.q.) about chronic fat=
igue
syndrome (CFS).

------------------------------

Subject: 0.02 Disclaimer

The information presented in this document was written and developed by pat=
ients. It
represents an informal catalog of accumulated knowledge by people who for t=
he most
part are not medical professionals. As this file is developed further, we h=
ope to include
references and citations which will document the statements that are made h=
ere. In any
case, as useful as this information may be it must not be considered to be =
medical
advice, and must not be used as a substitute for medical advice. It is impo=
rtant that
anyone who has, or thinks they may have, CFS should consult with a licensed=
 health
care practitioner who is familiar with the syndrome.

------------------------------

Subject: 0.03 Where to get the current version of this FAQ

Usenet:  posted regularly to newsgroup alt.med.cfs, with subject FAQ: CFS F=
AQ
E-mail:  create an e-mail message whose text reads GET CFS FAQ and send to
    LISTSERV@MAELSTROM.STJOHNS.EDU.  For those who cannot receive=20
    such a large file (about 75 Kbytes) as a single e-mail, then send=20
    a message that says GET CFS FAQ SPLIT=3D40K as e-mail to that same=20
    address.
Web:http://www.cfs-news.org/faq.htm
ftp:rtfm.mit.edu at directory and filename
    /pub/usenet/news.answers/medicine/chronic-fatigue-syndrome/cfs-faq

Back to the top
------------------------------

Subject: Part 1: General

------------------------------

Subject: 1.01 What is CFS?

Chronic fatigue syndrome (CFS) is an emerging illness characterized by debi=
litating
fatigue (experienced as exhaustion and extremely poor stamina), neurologica=
l
problems, and a variety of flu-like symptoms. The illness is also known as =
chronic
fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usua=
lly
known as myalgic encephalomyelitis (ME). In the past the syndrome has been =
known
as chronic Epstein-Barr virus (CEBV).

The core symptoms include excessive fatigue, general pain, mental fogginess=
, and often
gastro-intestinal problems. Many other symptoms will also be present, howev=
er they
will typically be different among different patients. These include: fatigu=
e following
stressful activities; headaches; sore throat; sleep disorder; abnormal temp=
erature; and
others.

The degree of severity can differ widely among patients, and will also vary=
 over time
for the same patient. Severity can vary between getting unusually fatigued =
following
stressful events, to being totally bedridden and completely disabled. The s=
ymptoms will
tend to wax and wane over time. This variation, in addition to the fact tha=
t the cause of
the disease is not yet known, makes this illness difficult to diagnose.

------------------------------

Subject: 1.02 What causes CFS?

The cause of the illness is not yet known. Current theories are looking at =
the
possibilities of neuroendocrine dysfunction, viruses, environmental toxins,=
 genetic
predisposition, or a combination of these. For a time it was thought that E=
pstein-Barr
Virus (EBV), the cause of mononucleosis, might cause CFS but recent researc=
h has
discounted this idea. The illness seems to prompt a chronic immune reaction=
 in the
body, however it is not clear that this is in response to any actual infect=
ion -- this may
only be a dysfunction of the immune system itself.

A recent concept promulgated by Prof. Mark Demitrack is that CFS is a gener=
alized
condition which may have any of several causes (in the same way that the co=
ndition
called high blood pressure is not caused by any one single factor). It *is*=
 known that
stressors, physical or emotional, seems to make CFS worse.

Some current research continues to investigate possible viral causes includ=
ing HHV-6,
other herpes viruses, enteroviruses, and retroviruses. Additionally, co-fac=
tors (such as
genetic predisposition, stress, environment, gender, age, and prior illness=
) appear to
play an important role in the development and course of the illness.

Many medical observers have noted that CFS seems often to be "triggered" by=
 some
stressful event, but in all likelihood the condition was latent beforehand.=
 Some people
will appear to get CFS following a viral infection, or a head injury, or su=
rgery,
excessive use of antibiotics, or some other traumatic event. Yet it's unlik=
ely that these
events on their own could be a primary cause.

------------------------------

Subject: 1.03 Is CFS a "real" disease?

At this early point, many practicing clinicians remain unconvinced that CFS=
 is a genuine
illness, although it is slowly increasing in acceptance. The reluctance is =
due in part to the
facts that (1) no specific cause has yet been found, (2) there is no observ=
able marker
that doctors can use to specifically identify the illness, and (3) most doc=
tors are not yet
familiar with the peer-reviewed research which does tend to legitimize this=
 disease.

Emerging illnesses such as CFS typically go through a period of many years =
before
they are accepted by the medical community, and during that interim time pa=
tients who
have these new, unproven illnesses are all too often dismissed as being "ps=
ychiatric
cases". This has been the experience with CFS as well.

But many top-level researchers are showing that this is a distinct, organic=
 illness. This
includes research by Anthony Komaroff (Harvard), Jay Levy (UCSF), Nancy Kli=
mas
(U. Miami), Andrew Lloyd (U. New South Wales), Stephen Straus (NIH), and ot=
hers.

Physicians and scientists may find the following citations of interest:

Levine P; et al. "CFS: Current Concepts" (proceedings of the Oct. 1992 CFS =
medical
conference), Vol. 18 Suppl. 1, January 1994, Clinical Infectious Diseases.

Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic abnormalities in ch=
ronic
fatigue syndrome". J of Clinical Microbiology 28:1403-1410 (June 90) [Study=
 showing
that NK cells (a kind of immune cell) malfunction in CFS patients; other ab=
normalities]

Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness characterized =
by fatigue,
neurologic and immunologic disorders and HHV-6 infection". Ann Int Med
116:103-112 (Jan 1992) [Study showing many CFS patients have HHV-6 infectio=
ns]

Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired Activation of=
 the
Hypothalamic-Pituitary-Adrenal Axis in Patients with Chronic Fatigue Syndro=
me". J of
Clinical Endocrinology & Metabolism 73:1224-34 (Dec 1991) [shows chemical
abnormalities in the brains of CFS patients]

Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte Phenotype and Fu=
nction
in the Chronic Fatigue Syndrome". J of Clinical Immunology 13:30-40 (Jan 93=
) [Study
showing T4 cell (a type of immune cell) abnormalities in CFS patients]

Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo; "Infection of natur=
al killer
cells by human herpesvirus 6". Nature 362:458-462 (April 1 1993) [HHV-6 --
previously found in CFS patients -- now shown to kill NK cells (a type of i=
mmune cell)
-- a small but important advance in research]

Schwartz R, Komaroff A, Garada B, Gleit M, Doolittle T, Bates D, Vasile R, =
Holman
B. "SPECT Imaging of the Brain: Comparison of Findings in Patients with Chr=
onic
Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar Depression" AJR
1994:162:943-951.

Schwartz R, Garada B, Komaroff A, Tice H, Gleit M, Jolesz F, Holman B. "Det=
ection
of Intercranial Abnormalities in Patients with Chronic Fatigue Syndrome: Co=
mparison
of MR Imaging and SPECT" AJR 1994:162:935-941.

Rowe, P; Bou-Holaigah, I; Kan, J; Calkins, H;. "Is Neurally Mediated Hypote=
nsion an
Unrecognized Cause of Chronic Fatigue?". Lancet 345:623-624 (March 11, 1995=
).

Bou-Holaigah, I; Rowe, P; Kan, J; Calkins, H. "The Relationship Between Neu=
rally
Mediated Hypotension and the Chronic Fatigue Syndrome". JAMA, Sept. 27, 199=
5
274:12:961-7.

Suhadolnik RJ, Peterson DL, O'Brien K, Cheney PR, et al. Biochemical Eviden=
ce for
a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue
Syndrome. Journal of Interferon and Cytokine Research, July 1997, 17:377-38=
5.=20

------------------------------

Subject: 1.04 Who gets CFS?

Few studies address this question. Several show that 70 to 80 percent of CF=
S patients
are women, although some researchers say that these are normal figures for =
any
immune-related illness. Some studies indicate that CFS is less common among=
 lower
income people and minorities, but critics point out that the average CFS pa=
tient sees so
very many doctors before they can get a diagnosis, that only those with gre=
at access to
medical care get counted in such studies, thus giving a bias with regards t=
o income and
race.

------------------------------

Subject: 1.05 Shouldn't this illness have a better name?

There have been many complaints since the name CFS was adopted in 1988 by t=
he
U.S. Centers for Disease Control that this name trivializes the illness and=
 reinforces the
perception that it may not be a legitimate disease. U.S. policy currently i=
s that there is
much medical literature tied to the current name, and that a change of name=
 should wait
at least until an accepted biological marker is found. There is discussion =
going on now
within the patient community about changing the name of the illness. For fu=
rther
information about this, see the web page at http://www.cfs-news.org/name.ht=
m, or
send an e-mail message which says GET CFS NAME to address
LISTSERV@MAELSTROM.STJOHNS.EDU, or see the Winter 1997 CFIDS
Chronicle published by the CFIDS Association of America (see question 5.06 =
below).

Back to the top
------------------------------

Part 2: Medical issues

------------------------------

Subject: 2.01 How do I find good medical care for CFS?

It is very important to find a health practitioner who is familiar with thi=
s illness. The
symptoms of CFS can be mimicked by other illnesses (autoimmune illnesses, c=
ancer,
hepatitis, diabetes, etc.), and if you in fact have another illness that is=
 not properly
diagnosed, you may be losing out on getting treatments that might be effect=
ive for you.

It is still an uphill struggle to find a doctor who is experienced in diagn=
osing and treating
CFS. The best source of advice for identifying local doctors who may be fam=
iliar with
CFS is your local support group. And the best way to identify local support=
 groups is
to contact one of your national organizations (see question 5.06). If there=
 are no CFS-
knowledgeable doctors in your area and you wish to find an out-of-town spec=
ialist,
you may read about such specialists from time to time in the newsletter of =
your national
organization.

If your own doctor is sympathetic but not knowledgeable, you might gather t=
ogether
some medical articles which discuss CFS treatments and encourage your docto=
r to
study them. (See question 2.036 below.) Read the essay on "Dealing with Doc=
tors
When You Have CFS" by Camilla Cracchiolo, R.N. which can be obtained by sen=
ding
the command GET CFS HANDLEDR as an e-mail message to the address
LISTSERV@MAELSTROM.STJOHNS.EDU.

------------------------------

Subject: 2.02 What symptoms are used to diagnose CFS?

------------------------------

Subject: 2.021 CFS definition

In addition to the official researchers' definition discussed below, patien=
ts and
experienced clinicians have noticed symptom patterns that seem prominent in=
 CFS.
These are described in question 1.01 above, and also include the observatio=
ns that
cognitive dysfunction often increases over time (over several years), and t=
hat brain
scans often show that blood flow to the brain is decreased.

CFS is defined somewhat differently by various medical groups in different =
countries.
The 1994 research definition published by the U.S. Centers for Disease Cont=
rol and
Prevention recommends a step-wise approach for identifying CFS cases. The f=
irst step
is to clinically evaluate the presence of chronic fatigue, i.e. "self-repor=
ted persistent or
relapsing fatigue lasting 6 or more consecutive months".

Conditions that explain chronic fatigue should exclude a diagnosis of CFS. =
These are:=20

- "any active medical condition that may explain the presence of chronic
fatigue ..." - any previous condition which might explain fatigue and which
has not documentably come to an end; - "any past or current diagnosis of
a major depressive disorder with psychotic or melancholic features;
bipolar affective disorders; schizophrenia of any subtype; delusional
disorders of any subtype; dementias of any subtype; anorexia nervosa; or
bulimia"; - substance abuse within 2 years prior to onset; - severe obesity=
=2E

The following should not exclude a diagnosis of chronic fatigue:=20

- conditions which cannot be confirmed by lab tests, "including
fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or
nonmelancholic depression, neurasthenia, and multiple chemical sensitivity
disorder"; - any condition which might produce chronic fatigue but which
is being sufficiently treated; - any condition which might produce chronic
fatigue but whose treatment has already been completed; - any finding
which on its own is not sufficient to strongly suggest one of the
exclusionary conditions.=20

After the above criteria are met, the following core criteria for CFS are a=
pplied: "A
case of the chronic fatigue syndrome is defined by the presence of the foll=
owing:

1) clinically evaluated, unexplained persistent or relapsing chronic fatigu=
e that is
of new or definite onset (has not been lifelong); is not the result of ongo=
ing
exertion; is not substantially alleviated by rest; and results in substanti=
al reduction
in previous levels of occupational, educational, social or personal activit=
ies; and

2) the concurrent occurrence of four or more of the following symptoms, all=
 of
which must have persisted or recurred during 6 or more consecutive months o=
f
illness and must not have predated the fatigue:

- self-reported impairment in short term memory or concentration
severe enough to cause substantial reduction in previous levels of
occupational, educational, social or personal activities;

- sore throat;

- tender cervical or axillary lymph nodes;

- muscle pain;

- multi-joint pain without joint swelling or redness;

- headaches of a new type, pattern or severity;

- unrefreshing sleep;

- and post exertional malaise lasting more than 24 hours."

The journal citation for the CDC definition article is: Keiji Fukuda, Steph=
en Straus, Ian
Hickie, Michael Sharpe, James Dobbins, Anthony Komaroff, and the Internatio=
nal
CFS Study Group. "The Chronic Fatigue Syndrome: A Comprehensive Approach to
Its Definition and Study". Ann Intern Med. 1994;121:953-959.

------------------------------

Subject: 2.022 Clinical views

Several helpful guides to diagnosis have been written by researchers and ex=
perienced
clinicians, including an article by Charles Lapp and books by Charles Sheph=
erd and by
David Bell. See the references under question 2.036 on treatments.

Drs. Buchwald and Komaroff did a study which surveyed the most common sympt=
oms
found in those meeting the 1988 CDC criteria. [Komaroff AL, Buchwald D.
Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis 1991;13(Supp=
l
1):S8-11.] They found the following frequencies:


Symptom/sign Frequency (%)

fatigue100
low-grade fever60 - 95
myalgias  20 - 95
sleep disorder 15 - 90
impaired cognition  50 - 85
depression70 - 85
headache  35 - 85
pharyngitis    50 - 75
anxiety   50 - 70
muscle weakness40 - 70
Postexertional malaise   50 - 60
worsening of premenstrual50 - 60
  symptoms
stiffness 50 - 60
visual blurring50 - 60
nocturia  50 - 60
nausea    50 - 60
dizziness 30 - 50
arthralgias    40 - 50
tachychardia   40 - 50
dry eyes  30 - 40
dry mouth 30 - 40
diarrhea  30 - 40
anorexia  30 - 40
cough30 - 40
digital swelling    30 - 40
night sweats   30 - 40
painful lymph nodes 30 - 40
rash 30 - 40

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------------------------------

Subject: 2.03 What are the specific treatments available for CFS?

Many treatments are available. Most seem to be of limited usefulness, howev=
er
different patients will respond differently and in some instances there is =
good response.
An FAQ on treatments is being developed, and more detail about these issues=
 will be
discussed there. Please see the subsections immediately below for a discuss=
ion of
treatments.

------------------------------

Subject: 2.031 Avoid stress

As odd as it may seem, typically the most beneficial program is for the pat=
ient to avoid
stress and to get lots of rest. This is usually the most effective regimen,=
 among others
that might also be undertaken. Stress does not merely mean unpleasant exper=
iences,
but rather any biological stressors, physical or emotional, which prompt a =
protective
reaction in the body and which may alter physiologic equilibrium ("homeosta=
sis").
(Read the discussion about stress under question 2.04.) Failure to avoid st=
ress often
leads to short-term and long-term set-backs which may be serious. Many pati=
ents
believe that if they had done more to avoid stress in the early phases of t=
he illness, they
would not have become nearly so disabled later on. The correlation between =
stress and
the progress of this illness appears to be strong.

------------------------------

Subject: 2.032 Medications

Treatments tend to address the symptoms, since the underlying mechanism of =
the
disease is not really understood. Medications which are helpful are often t=
hose which
have immune-modulating characteristics. CFS patients are unusually sensitiv=
e to drugs
and they usually must take doses that are 1/4 or less than standard doses. =
Some drugs
will be a big help to some patients and little or no help to others. And dr=
ugs that seem
to work for a while may stop being effective later.

According to studies presented at the October 1994 CFS medical conference, =
widely
used treatments included: SSRIs ("selective serotonin re-uptake inhibitors"=
 such as
Zoloft, Paxil and Prozac) used to address fatigue, cognitive dysfunction an=
d
depression; low dose TCAs ("tricyclic anti-depressants" such as doxepin and
amitriptyline) for sleep disorder, and muscle and joint pain; and NSAIDs
("non-steroidal anti-inflammatory drugs" such as ibuprofen and naproxen) fo=
r
headache, and muscle and joint pain. Other treatments often prescribed are =
Klonopin,
intra-muscular gamma globulin (IMgG), nutritional supplements (particularly
anti-oxidants, B-vitamins generally and B-12 specifically), herbs, and acup=
uncture.
Less often prescribed were chiropractic therapy, intra-muscular gamma globu=
lin
(IVgG), kutapressin, antivirals, interferon, and transfer factor.

Research from Johns Hopkins University in 1995 indicate that treatment for =
neurally
mediated hypotension may be effective for the many CFS patients who may sho=
w
positive for that condition.

------------------------------

Subject: 2.033 Role of exercise

CFS patients will need to avoid stressful activities, and each patient's to=
leration for
stress will be different, and can change). It is nonetheless important for =
patients who
can exercise to do so, up to their level of toleration. But this should be =
done with great
care, since crossing the "invisible line" of exercise intolerance for this =
illness may prompt
a serious relapse, and may negatively affect the longer-term future course =
of the illness.

------------------------------

Subject: 2.034 Dietary changes

CFS patients appear to be alcohol intolerant. Other food products often rec=
ommended
against include caffeine, sugar and nutrasweet. Since in many patients it a=
ppears that
the immune system is over-active, it may be more important than usual to ta=
ke
nutritional supplements to replenish burnt up reserves.

Many patients have or develop food sensitivities, and in these cases relief=
 may be found
by avoiding foods that prompt problems. Patients tend to gain weight and th=
ey don't
have vigorous exercise available as a counterbalance, so diet needs to be m=
onitored
with this in mind.

------------------------------

Subject: 2.035 Secondary problems

There can be several related problems, such as yeast, that need to be watch=
ed out for.
Also, CFS has so many symptoms that it's easy to ascribe all new anomalies =
to this
disease. But CFS patients are not exempt from getting other illnesses also,=
 therefore it
is important to regularly monitor your health and to consult with your doct=
or about the
changes as they progress.

------------------------------

Subject: 2.036 Article references

The following are citations of articles on CFS medical treatment that your =
doctor may
find useful.

Conservative approaches

"Management of a Patient with Chronic Fatigue Syndrome" by Nelson Gantz; ap=
pears
as Chapter 14 in the book "Chronic Fatigue Syndrome" edited by David Dawson=
 and
Thomas Sabin, 1993, Little, Brown & Co.

"Treatment of the Chronic Fatigue Syndrome: A Review and Practical Guide", =
Edith
Blonde-Hill and Stephen D. Shafran, Drugs 46(4):639-651, October 1993.

"Psychotropic Treatment of Chronic Fatigue Syndrome and Related Disorders",=
 PJ
Goodnick and R Sandoval; J Clin Psychiatry 54(1):13-20 January 1993

Moderate/aggressive approaches

[The following are available by mail order from the CFIDS Association of Am=
erica,
Inc., PO Box 220398, Charlotte, NC 28222-0398 USA. Several of these are als=
o
available on Internet by e-mail retrieval; see instructions below.]

"Chronic Fatigue Syndrome is a Real Disease", Charles Lapp; North Carolina =
Family
Physician, Winter 1992. $3.00

Series of articles in Sept. '92 "Diagnosis" edition of CFIDS Chronicle, by =
Drs. Bell,
Calabrese et al., Cheney and Lapp, Jay Goldstein, Hickie and Wakefield, Kli=
mas, and
other useful letters and reports. $8.00

Series of articles in Fall 1993 "Treatment" edition of CFIDS Chronicle, by =
Drs.
Cheney and Lapp, Dimitri Viza and Giancarlo Pizza, Perry Orens, Edward Conl=
ey
DO, Burke Cunha, James McCoy, Jay Goldstein and others. $10.00

Book: "The Doctor's Guide to Chronic Fatigue Syndrome", Dr. David Bell, 199=
4.
$21.00.

Book: "Living With M.E.", Dr. Charles Shepherd, M.D., revised 1992. $15.00

There are a series of medical articles on the diagnosis and treatment of CF=
S which are
available on the STJOHNS Listserv on the Internet. See Appendix 2 at the en=
d of this
document.

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------------------------------

Subject: 2.04 What is the role of stress and psychology in CFS?

Preliminary research suggests that CFS may involve a brain disorder -- spec=
ifically,
HPA dysfunction (see question 2.16) -- which affects the stress response sy=
stem in our
bodies. CFS patients are standardly observed to be hypersensitive to stress=
=2E Stress
does not merely mean unpleasant experiences, but rather any biological stre=
ssors,
physical or emotional, which prompt a protective reaction in the body and w=
hich may
alter the physiologic equilibrium known as "homeostasis". Stress in this ph=
ysiological
sense may be subtle and may not necessarily be noticed. Merely hearing loud=
 sounds
or seeing bright lights may be stressful in this context.

High-stress events sometimes seem to "trigger" the first appearance of the =
illness (see
question 2.06), and they will usually worsen the symptoms if the illness ha=
s already
developed. Because stress is often mistakenly thought of as a purely emotio=
nal
phenomenon with no physical aspect, the correlation of CFS with stress make=
s some
people imagine that CFS must a non-physical "psychological illness". Medica=
l studies
show that stress plays an important role in several immune-mediated illness=
es, and in
fact a new field of research called psychoneuroimmunology has been created =
to study
just this phenomenon.

HPA and neurotransmitter dysfunction may make CFS patients excessively irri=
table,
and may prompt panic attacks. These behaviors might be misinterpreted, ther=
eby
reinforcing a misconception that CFS is merely a psychological condition.

See also question 2.11 which discusses depression, and the questions under =
Part 3 of
this document, "Life problems created by CFS".

------------------------------

Subject: 2.05 What research is currently going on?

There is a great deal of research going on, regarding the possible cause of=
 CFS, many
of its symptom mechanisms, possible biological markers, treatments, and epi=
demiology.

Dr. Mark Demitrack (U. Michigan) and Dr. Stephen Straus (NIH) and others ar=
e
studying the dysfunction of the hypothalamic-pituitary-adrenal axis as bein=
g a possible
major explanation for CFS. Prof. Robert Suhadolnik (Temple U., Philadelphia=
) is
exploring a possible bio-marker for CFS found in patients' blood. Drs. Hugh=
 Dunstan
and Timothy Roberts (U. Newcastle, Australia) are researching a possible bi=
ological
marker found in urine. Dr. Peter Rowe (Johns Hopkins) is studying the possi=
ble link
between CFS and neurally mediated hypotension. Dr. Anthony Komaroff (Harvar=
d)
and Dr. Dharam Ablashi (Georgetown) are researching the possible roles of H=
HV-6
and EBV (to decipher these abbreviations, see Appendix 3). Drs. Andrew Lloy=
d, Ian
Hickie, Denis Wakefield and Andrew Wilson (Sydney, Australia) aremaking bro=
ad
investigations into many aspect of CFS. Dr. W. John Martin (U. So. Calif.) =
is studying
the "Stealth" virus. Dr. Michael Holmes (U. Otago) is researching another m=
ysterious,
virus-like particle. Drs. Nancy Klimas, Roberto Patarca (of U. Miami) and J=
ay Levy
(UCSF) are investigating immunological abnormalities. Drs. Paul Cheney, Cha=
rles
Lapp and Jay Goldstein are studying various treatments. Drs. Simon Wessely,=
 Michael
Sharpe and other British psychiatrists are exploring the value of cognitive=
 behavior
therapy for CFS. The CDC team led by Drs. Keiji Fukuda and William Reeves a=
re
undertaking prevalence studies in the USA. These are just a few of the more=
 prominent
studies now on-going.

------------------------------

Subject: 2.06 How does CFS usually begin?

For a slight majority of patients, the illness begins suddenly as though on=
e had come
down with the flu. Except that this "flu" doesn't seem to completely go awa=
y. For many
other patients, the onset appears gradually over a long period of time.

In many cases, a high-stress event seems to "trigger" the illness. There ar=
e many cases
in which CFS appears to have begun with a severe head injury, for example. =
But since
such events seem to have no apparent logical connection to the illness that=
 follows,
many have speculated that the CFS was latent in people beforehand in these =
cases,
and that the stress of trauma merely triggered the stress-hypersensitivity =
aspect of the
illness. Some have further speculated that other stressful factors in our e=
nvironment, be
they microbes or pollution, may also prompt this illness to bloom.

------------------------------

Subject: 2.07 How long can CFS last?

The illness varies greatly in its duration. A few recover after a year or t=

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