1)** The purpose of this manual  is to give, in point form, a summary
of 
     the important facts and opinions in regard to:  

     a)** an illness known as MYALGIC ENCEPHALOMYELITIS
(M.E.). 
     This illness is characterized as follows:

     MYALGIC    - muscle pain
     ENCEPHALO  - brain
     MYEL - spinal cord
     ITIS - inflammation

     M.E. has many symptoms: swollen  lymph glands, low
grade fever, 
     headaches, sore throat, fatigue, muscle pain, depression, sleep
disturbances, 
     cognitive problems (poor concentration, memory lapses), mood
swings, 
     irritability and digestive problems. 

     b)** a separate condition known as FIBROMYALGIA (FM), an
arthritic 
     type condition:

     FIBRO    - fibrous tissue
     MY       - muscle
     ALGIA    - pain

     FM has many similar symptoms to M.E. - in fact many M.E.
patients 
     have a diagnosis of Fibromyalgia as well as M.E.  The
biggest difference 
     between M.E. and FM is that FM does not have as much
cognitive 
     problems or exercise intolerance (see Chapter 4 for a further
comparison).  
     Some symptoms of FM are: wide spread muscle pain, intestinal
problems, 
     fatigue, non-restorative sleep, tender points at specific sites of
the body, 
     depression and headaches.

2)** There are many names used for the illness of M.E. :

     a)** Chronic Fatigue Syndrome (CFS)
     b)** Chronic Fatigue (CF) - This a symptom, not an illness
     c)** Post-Viral Fatigue Syndrome #941005-36.
     d)** Post Viral Syndrome
     e)** Chronic Epstein Barr Virus
     f)** Epstein Barr Virus - the virus does not create M.E., nor is
it M.E.
     g)** Mononucleosis #90005-2 - this is not M.E.
     h)** Chronic Mononucleosis - this is not M.E.
     i)** Fibromyalgia - this is a separate condition
     j)** Yuppie Flu 
     k)** Chronic Fatigue Immune Dysfunction Syndrome
     l)** Chronic Fatigue Immune Deficiency Syndrome
     m)** Post-Polio Syndrome - #941005-35 - this is not M.E.
     n)** Post-Polio Virus - this is not M.E.
     o)** Poliomyelitis ??
     p)** Neuromyasthenia ??
     q)** Epidemic Neuromyasthenia
     r)** Royal Free Disease
     s)** Gilliam Ramsay's Syndrome #940806- 64.
     t)** Icelandic Disease
     u)** Akureyri Disease

3)** Why am I writing this manual?    When I first became ill, I knew
that 
something was wrong with me.  I went for various tests (blood tests, scans, 
etc.)  to determine why I was so sick, yet no one could tell me what was
wrong.  
It was by accident that I discovered an illness called "Chronic Fatigue 
Syndrome"; once I started investigating this illness, I began to realize that this 
might be the cause of my symptoms.  I then had to educate my doctors on this 
illness, which became a rather tedious job.  Slowly on, I became aware of other 
people who also had C.F.S. and I found that we all had a common problem - 
not enough information.  I discovered there was information out there, but you 
had to know who to ask in order to get it.  I then made it my ambition to gather 
as much of this information as I could, and compile it into a "manual", so that 
those who had this illness (or who thought they might have it, or knew someone
who did) could have all this information in one location.   This became a
much 
bigger project than I had anticipated.  However, I feel very strongly about this 
manual, and persevered in order to bring you this issue.  I believe people 
should not have to learn through trial and error, or have to suffer for several 
years before they receive some of the valuable information that is available 
through support group leaders and others with M.E. and FM.   I believe
that 
as much of this information as possible should be made available to people in 
point form, that directs them to more detailed information in one location, 
specifically Chapter 2 on the "M.E. & FM Library Materials".  I have seen 
one person die, as well as hundreds of others suffer needlessly due to a lack 
of knowledge.  I simply want to help people deal with these life-altering 
illnesses.

4)** Who will benefit from the manual?   Those who have not been
diagnosed, 
those who have just been, family and friends, singles or married,  poor or well-
to-do, and support group leaders, will all benefit from this manual.  I have tried 
to supply information relative to each of these categories. 

5)** This manual is pertinent for any country.  The material is not region 
specific and applies to whichever country you live in.  The manual can be 
broken down as to its usefulness as follows:

     In any given country     80% useful;
     In the
U.S.              85% 
     In
Canada                90% 
     In British Columbia     100% 

Some of the information, though region specific, can be used in your country.  
For example, in B.C., there is a gas tax rebate for the handicapped, car 
insurance discounts, as well as income tax rebates.  Your country probably 
has these same benefits available, you simply need to know about them.   
This Manual is intended to be used as a starting point for you to investigate 
what your country or province has to offer - ideas are what this manual is for. 

     a)** Handling your government disability or Long-term
disability claims 
     from your insurance company will be similar to what it is in
Canada.

     b)** Wherever you live, I am interested in receiving your
comments, 
     suggestions, and ideas either by letter, phone call, or through the
Internet 
     E-Mail.  We need to join forces and help one another.

     c)** Country-specific addendum.  I would like to
organize specific 
     information by regions;  this would avoid duplication of
materials.  By 
     using this method of gathering information, the M.E. or FM
contact 
     person in any given region could have one main package as a
resource.

6)** Why are M.E. & FM referred to both separately and jointly?   I 
originally started writing about "M.E. only".  I then found how large a 
component FM was, and how similar some of the symptoms were to M.E.,  
so I dedicated a fair amount of space to it.  The following chart compares the 
similarities of M.E. issues with FM and other non-related illnesses.


ISSUES         Similarities with M.E.

                FM         
OTHERS
Legal           95
%          20 %
Treatment       85
%          20 %
Symptoms        70
%          10 %


Most of the information in this manual  - 70% - refers to both M.E. &
FM   
and applies to either.  FM specific information covers 10% and M.E. specific 
covers 20%.  I have been diagnosed with both M.E. & FM so I know what 
both are like.

7)** M.E. is the dominant of the two  illnesses.  When someone is
diagnosed 
with M.E. as well as FM,  it appears the M.E. is the dominant of the
two.  
Therapists must be aware of this, and initiate treatments accordingly.

8)** Symptoms vary from day to day.  There is more to these illnesses than 
what you can or cannot do (physically or mentally) at any given point in time. 
40% of the illness is determined by how you are NOW, while 60% is 
determined by how you are AFTER you have performed any mental or 
physical activity. 

9)** Manual Standards 

     a)** "If the world was perfect, I'd have a million dollars, a
photographic
     memory, three medical degrees, a PHD, three secretaries, and a
perfect
     manual".  However, the world isn't perfect, I do the best
I can with 
     what I have.  I ask as much constructive help from
everyone that reads 
     this, or that has dealings with M.E. or FM.  

     b)** "Say nothing unless it's perfect."  Some people have
the philosophy 
     that you should not say anything unless it's perfect.  I
don't follow that 
     policy - I do the best I can to get the information down in
writing now, and 
     then continue to perfect it as I do further research.

     c)** Rules and ideas change over time.  I have done my
utmost to ensure 
     the information here is as accurate as possible.  However
I must caution 
     you, always confirm with your doctor what treatment you intend
to follow, 
     and don't rush into anything without careful analysis. 
Consult your lawyer, 
     family, or friends to help you reach an informed decision on
matters.

     d)** Expert opinions conflict.  Many experts disagree on
M.E. & FM   
     symptoms and therapies.  In this manual,  I have
tried to record the 
     general consensus as well as some of the controversial
discussions, which 
     is why in some areas, the information will
conflict.  

     e)** I am not politically correct, and I make little attempt to be
so in this 
     manual.  Sick people need action.  The AIDS
Coalition did not worry 
     about political correctness, and look how fast they got the world
to take 
     notice.  It is time for every M.E. & FM person to
stand up and shout that 
     they need help NOW. 

     f)** All of the over 5,200 pages of information and video tapes
from the 
     "M.E. & FM Library Materials" have been reviewed by
myself and 
     summarized in this "M.E. & FM Manual". 

     g)** 1-800 phone numbers listed in the manual will be for
Canada and the 
     U.S., unless specifically noted.

     h)** All prices listed are in Canadian funds, unless otherwise
stated. 

10)** Issue #, Updates, * and ** .

     a)** The manual is now a yearly newsletter.  Each year
the same 
     information will be published with changes and additions to the
previous 
     years' edition.  This way you do not have to keep any of
the old issues 
     because you still get all this information in the new one (eg Issue
#4 has 
     108 pages of new information added to Issue #3).

     b)** On the Title Page, the dates refer to when each issue was
released, and 
     the estimated date of the next issue.  The (*) asterisks
below the dates are 
     used throughout the manual to designate how "new" the
information in that 
     paragraph is. 

     c)** Updates or changes to the manual are denoted by asterisks
after the 
     paragraph number:

          (1) ** [this information was
updated for this issue];
          (2) *  [the
information was updated for the previous issue];
          (3)   
[no asterisk means this information has not been updated for at 
                    least 2 issues].

     Using the asterisks allows a member of the "Manual Newsletter"
group to 
     focus on what is new information since the last issue that was
read.

11)** How to find what you're looking for.  There are three types of 
references in this manual. 

     a)** The first, and most common reference, will be for
information found 
     in specific documents, magazine articles, newsletters or video
tapes.  All 
     materials that I have used as reference material for the manual
are listed 
     in the "M.E. & FM Library Materials" Index (9 pages),
located at the back of 
     this manual.  There are over 360 references, to over
5,200 pages of information 
     housed in fourteen libraries throughout British Columbia. 
These materials
     will be further discussed in Chapter 2.  The reference
number is where this
     piece of information came from or where you can go to for more
information.

          (1)** Each article is given a
number with a page reference.  An 
          example of a reference
number is #950802-24, meaning that the article 
          is found in the "M.E.
& FM Library Materials" under document 
          #950802, page 24. 
The article would have been printed in 1995 (95); 
          August (08) and (02) would
be the sequence it was referenced. 

          (2)** Video tapes are listed
as reference numbers, eg (950213 Video2 
          @ 3:20) refers to Video
Tape #2, starting at 3 hours, 20 minutes. 

     b)** Another type of reference will be to statements made
without a 
     specific location named.  These are items that I have read
in publications, 
     but I do not have copies of the source, or information that I have
learned 
     in relation to running support groups and dealing with M.E. and
FM   
     people since 1991. 

     c)** The third type of reference is my own personal
opinion.  These 
     references will be shown as {PO} {personal opinion}. 
Personal opinions 
     are placed within {} brackets. 

     d)** I have also added an index to the back of this
manual.  Each item listed 
     is bolded, underlined and italicized on the page to make it easier
to find.


12)** Not everyone becomes totally disabled with M.E. or FM. 
     I would hope everyone does the best they can with the abilities
they have 
     remaining.  Occasionally I write about being disabled -
this refers to people 
     who can no longer work full or part-time, or those who are able
to work but 
     have significant problems both at work and home.

13)** Being realistic.  You must be realistic about this illness or condition - for 
most people it takes many years to even partially recover.  It is not something 
that you heal from quickly.   Many of the issues are not black and white,
but 
grey; for example, a therapy may work extremely well for one person, but do 
nothing for someone else.  Parts of this manual should be read every 4-6 
months, so that you can remember, understand and be prepared as the illness 
and your circumstances change.  Everyone would like this illness to be over 
quickly, however if you do have it you must be realistic and plan for the 
future.  Take advantage of the disability benefits that you are entitled to, while 
trying to get relief for your symptoms and help with your family life.

14)** Manual Access.   There are several ways to get access to this manual.

     a)** This manual will now be published as a bi-anual
newsletter.  It is a non-
     profit newsletter, prepared by my family and friends. 
Send your name and 
     address with $14 U.S. or $19 Canadian membership donation or
what you can aford and a
copy
     of the manual will be sent to you.  Notification will also
be given by mail when the
     next issue is completed.  Make the cheque payable to
Doug Shore - 
     M.E. & FM Manual and send it to the following
address.  I can accept cheques, if 
     they are drawn on a US or Canadian bank.