M.E. & FM Manual

MYALGIC ENCEPHALOMYELITIS
WORLD HEALTH ORGANIZATION DEFINITION, FORMERLY CHRONIC FATIGUE SYNDROME
AND THE SEPARATE CONDITION OF FIBROMYALGIA (FORMERLY FIBROSITIS)
Newsletter ( 640 Members) 
110,000 words, 156 pages of condensed material online

 
 

What's M.E. like

Having M.E. can be compared to a Ferrari Engine in a

Volkswagon Beetle on rims with no tires - lots of desire to move

(and you can with much effort) but it takes a great toll on the car.

Web Site Introduction

The purpose of this Web site is to show the content of the M.E. & FM Manual Newsletter, almost all of the hardcopy is on this web site. To become a member and receive a printed copy of the latest issue send a check for a donation of $14 US or $19 Canadian or what you can afford. The printed copy is 155 pages on 8 1/2 x 11" paper with two columns, produced on a laser printer with a spiral binding. This web page and printed Manual are copyrighted and We would apreciate the finacial help to continue putting this material together.

The Manual contains information on both M.E. and FM including 55 symptoms, 48 Drugs, 49 therapies, 47 disability benefits, 67 Books, 68 other organizations and societies, 186 supportive doctors, C.P.P., Long Term Disability, insurance, legal help, dealing with doctors, how to cope with the illness, as well as the Index to the "M.E. & FM Library Materials". Take a quick look through the Table of Contents below for more details. An option to allow searching the entire web site has now been added. The text of the Manual is shown, however most of the formatting was lost when the manual was converted for this Web page. The font can be changed chosing a diferent font from the fixed and proportional selections in the options menu.

I would like as much input for additions as possible. This manual has become as large as it is due to the generous help of many individuals. Please E-Mail me or phone, with any additions, corections, comments or questions I would realy apreciate the call. It's nice to hear if the work you do is worth the effort.

It would be helpful to those who do not have computer access if you would print this Web page introduction (total 18 pages) and distribute it. For printing, select the FILE menu item and PRINT PREVIEW then print, if adjustments need to be made go to FILE menu, select PAGE SETUP, set the MARGINS equal to .1, go to the OPTIONS menu-GENERAL PREFERENCES-FONTS and adjust the font size both PROPORTIONAL and FIXED. From the FILE menu, PRINT PREVIEW on the screen then PRINT.
 



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M.E. & FM Manual

Table of Contents

1. Introduction

2. M.E. & FM Library Materials

3. Fibromyalgia

4. M.E. vs Depression, M.E. vs FM

5. Symptoms

6. Diagnosis: M.E. & FM

7. Treatment Possibilities:

8. Symptom Therapy

9. Living With M.E. & FM

10. Questions

11. Disability Benefits

12. Books, Videos & Computer Links

13. Support Groups

14. Newsletters & Organizations

15. Doctors

16. Insurance & C.P.P & Pensions

17. Legal

18. Information

19. Closing

References

Index 


Becoming a Member
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Key Words

 

Chronic Fatigue Syndrome, CFS, Myalgic Encephalomyelitis, ME, Fibromyalgia Syndrome, FMS, Fibrositis, CFIDS, GWS, Gulf War Syndrome, health, disease, allergies, disability benefits, organizations, doctors, insurance, long term disabilities, CPP, MCS, Silicone breast implants, Post-Polio, Neuromyasthenia, Lyme, Mononucleosis, IBS, CDC, Post-viral fatigue syndrome, PVFS, Epstein-Barr, EBV, HHV, Herpes, Immune. 


1. INTRODUCTION

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.  

M.E. & FM Manual
Doug Shore
35465 Nakiska Court 
Abbotsford, B.C. 
Canada V2T 3V2 

Web www.oocities.com/capitolhill/1544
E-Mail deshore@shaw.ca
Phone #(604) 857-4874 (Toll free Vancouver)
or #(604) 855-9431 (Abbotsford)

 
     b)** The current issue of this manual is included in the
"M.E. & FM 
     Library Materials";

     c)** I will send a copy of this manual to all M.E. support group
leaders in 
     B.C. as well as The FM Society of B.C.;

     d)** It will be advertised in the back of each M.E.B.C.
newsletter;

     e)** Between issues of the "M.E. & FM Manual" - the
quarterly 
     newsletter of M.E.B.C. will contain some of the new
information to be 
     used in the next issue.

     f)** On the Internet (the Table of Contents, Introduction and
Index of each 
     new issue will be posted).  A list of every M.E., FM
related jumppoints, 
     newsgroups and every E-Mail address I could find for every
organization 
     in the world will be posted.  

          Web
www.oocities.com/capitolhill/1544
          E-Mail
deshore@shaw.ca

     g)** If financial hardship exists, I will send a copy of the
Manual to you 
     for what you can afford.

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15)** Guarantee: I feel strongly that the M.E. & FM Manual will be a help
to 
people with M.E. or FM, in any country.  I stand behind that.  If you feel 
you want your money refunded, simply mail the unmarked Manual to me and 
I will return any monies.

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16)** I keep an accounting of  all the monies I receive and spend, and make it  available for inspection at each of the meetings that I attend.      a)** After sending free copies to support group leaders, needy people and       other M.E. & FM projects over the years, my budget is still in the red.  I       use any funds I collect to purchase more newsletters, information and videos       to add to the manual and the M.E. & FM Library Materials. 17)** Copyright policy.  Excerpts may be taken from this document as long as  the source is stated as the "M.E. and FM Manual" followed with the address  and phone number.  Libraries may copy this Manual in it's entirety; Support  Group Leaders may make one copy for their groups reference material.  Any  copies made of this manual by persons other than explicitly stated above, is  done against the copyright policy and forbidden by law.  Funds for projects  such as this must come from somewhere, organizations need funding to  provide you with assistance.     18)** Abbotsford and Surrey support groups.  I am currently the leader of the  Abbotsford Support Group,  and previously I was the leader of the Surrey  support group for four years.   There are approximately 310 registered  members between the two groups. Through these groups, I have gained some  insight into M.E. & FM, as well as I have been able to form some opinions  that I will share in this manual.  The membership of these support groups  consist of persons at various stages of the illness - those recently diagnosed,  those that have become disabled with the illness, and those who have partially  recovered and are now back to work.  Support groups are there to help all  people affected by M.E. or FM, not only those who are totally disabled.  I  would say that of the two support groups that I have been involved in,  50%  of the membership has both M.E. and FM,  20% have M.E. only, and 30%  have FM only.      a)** Since I have difficulty reading due to M.E., 31 members of the       Abbotsford support group have volunteered to help me as  "readers" and       gather information for this manual by reading various articles and newsletters       for me.  They highlight information, then verbally summarize the content of       what they have read to me.  I then scan each page and dictate it to a recorder,       and my wife creates what you see here.   19)** DISCLAIMER.  Medicine is an ever-changing science.  As new research  and clinical experiences broaden our knowledge, changes in treatment and drug  therapy are required.  While many suggestions for therapies are made here,  this manual is intended for educational purposes only, and the author does not  accept liability in the event of negative consequences incurred as a result of  information presented.  I do not claim that this information is necessarily  accurate by the rigid, scientific standard applied for medical proof, and  therefore make no warranty, express or implied, with respect to the material  contained in this manual.   The patient is urged to consult his or her own  physician prior to following a course of treatment.  20)** Gather as much information from as many different sources as possible.  Do not take one person's opinion as the only one available. Many people and doctors seem like experts, but this illness is too difficult to deal with if you  listen to only one individual's opinion.  Treat everyone and everything you  read (including this manual) with "a grain of salt".   21)** Help obtaining new information.  As this is an on-going project, I need  help obtaining new information.  I ask that if you read something that might  be of interest to other M.E. or FM sufferers, please send it to me, whether  it is old newsletters, newspaper clippings, video tapes, or book reviews that  you have done or copied.  I would appreciate receiving the originals, as they  are easier to make copies from.   Check the "M.E. & FM Library Materials"  index in the back of this manual to see whether or not I have the information already.  I have difficulty reading; if you could highlight any significant areas  with black ink pen, so that when it is photocopied others can see the important  information.  Several times in this manual, I have a heading, then a "??";  this  means I could use more information and I need your help.  The information  can be given to your support group leader, or to my Internet E-Mail.  You can  also send it to my home address:  Canada M.E. & FM Manual Doug Shore 35465 Nakiska Court Abbotsford, B.C.  Canada V3G 1J6 E-Mail deshore@shaw.ca Web www.oocities.com/capitolhill/1544 Phone #(604) 857-4874 (Vancouver toll free)      or #(604) 855-9431 (Abbotsford)      a)** My family and friends have done most of the work on the manual and       the "M.E. & FM Library Materials".  I do the management and the       dictation for the materials, but the credit for the work goes to them,       especially my wife.  Even with all that has happened to me, I am blessed with       a supportive family.  Return to Menu


Take a tour

This site is not intended to replace the ME-Net by Marc-Alexander Fluks or the CFS/M.E. page by Roger Burns which is the best informational web site I have found for both M.E. and FM. What I will try to do is present sites not listed, any pertient newsgroups, as well as every E-Mail address for every society or association in the world. Since most do not have a site in their own Society's name but use personal addresses, there is no other way of searching for them. Please E-Mail me with any new web sites or E-Mail addresses that you do not find on this list.

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