Issue #4 1996/01
MYALGIC ENCEPHALOMYELITIS WORLD HEALTH ORGANIZATION DEFINITION, FORMERLY CHRONIC FATIGUE SYNDROME
AND THE SEPARATE CONDITION OF FIBROMYALGIA (FORMERLY FIBROSITIS) Annual non-profit Newsletter



I had decided that I would add one of the great resources on the web here. Although, this is not the manual, it is an insight into what is in the manual and offers a great deal more information about why Doug Shore created it. The links to the manual will work so that you may jump to his site and see for yourself.

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

Print - to circulate in your support group
Select -File -Set margins=.1 -Font size -View -Print

Becoming a Member
Send E-Mail to me
Guarantee
Take a Tour on the Internet, Newsgroups, and E-Mail for the world
( bookmark this site for future use )

Web Site Introduction

The purpose of this Web site is to show the content of the M.E. & FM Manual Newsletter. This is an annual non-profit Newsletter, now in the fourth year of publication (issue #4), and the first time it has been made available through the Internet. 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". Please scan through the Table of Contents and the Index shown below for more details. The contents of the Manual is as shown, however most of the formatting was lost when the manual was converted for this Web page.

I have transferred the Table of Contents, Introduction, Books, and Newsletters-Organizations text as they appear in the Manual. The printed copy is 155 pages on 8 1/2 x 11" paper with two columns, produced on a laser printer and has a spiral binding. This web site was tested on Netscape and Microsoft's Explorer. There is a section with jump points to each web site that I have found for both M.E. and FM and every E-Mail site for the world; this is so that you don't have to type or remember them, just go to the bookmark you make for this site. I have included a jump point for downloading Netscape 2.0 or their latest Bata version. More sites will be added in the coming months.

It would be helpful to those who do not have computer access if you would print this Web site (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. 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.

Key Words

Chronic Fatigue Syndrome, CFS, Myalgic Encephalomyelitis, ME, Fibromyalgia Syndrome, FMS, Fibrositis, CFIDS, health, disease, allergies, disability benefits, organizations, doctors, insurance, long term disabilities, CPP, MCS, Silicone breast implants, Post-Polio, Neuromyasthenia, IBS, CDC, Gulf War Syndrome, Post-viral, Epstein-Barr, newsletter, drugs, therapies, web sites, E-Mail, newsgroups.

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:

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

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.

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

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 yearly 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 annual membership donation 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 Money order or Draft 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 Canadian bank. In the future I will be offering membership on the Internet using a charge card with security E-Mail.

M.E. & FM Manual
Doug Shore
P.O. Box 2591
Sumas, Washington USA
98295

or
M.E. & FM Manual
Doug Shore
#235-32550 MacLure Road
Abbotsford, B.C.
Canada
V2T 4N3

Web Page: http://www.geocities.com/capitolhill/1544
E-Mail dwshore@home.com
Phone #(604) 857-1200 ext. 9431 (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 Site: http://www.geocities.com/capitolhill/1544 E-Mail dwshore@direct.ca

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

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. Return to Menu

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: In the United States at M.E. & FM Manual Doug Shore P.O. Box 2591 Sumas, Washington USA 98295 or in Canada M.E. & FM Manual Doug Shore #235-32550 MacLure Road Abbotsford, B.C. Canada V2T 4N3 E-Mail: dwshore@home.com

Web http://www.geocities.com/CapitolHill/1544/Phone #(604) 857-1200 ext. 9431 (Vancouver)
     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. 


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Take a tour

This site is not intended to replace 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.

Web Sites

• CFIDS Association (USA)
  
• CFS BBS database:
  
• CFIDS-L Political advocacy:
  
• EINet Galaxy CFS page:
  
• FMBC Fibromyalgia Society of B.C. (Canada)
  
• Gulf War Syndrome
  
• Immune Discussion group
  
• Lyme Disease
  
• Medical Sciences Bulletin:
  
• Netscape download free version 2
  
• Roger Burns CFS/ME Info Page:
  
• United SILICONE Survivors of the World:
  

Newsgroups

• Catharsis Personal Health Newsmagazine subscription
  -send message "SUB CATHAR-M YourFirstName YourLastName "
  
• Catharsis Personal Health Newsmagazine (E-Mail)
  
• CFIDS Action Newsgroup - possibly empty
  
• CFIDS-L activist discussion subscription -send message "SUB CFIDS-L YourFirstName YourLastName "
  
• CFIDS-L activist discussion, (E-Mail) information contact Roger Burns
  
• CFS Electronic Resources Guide download -send message "GET CFS-NET TXT"
  
• CFS Electronic Resources Guide (E-Mail)
  
• CFS-D data base of files -send message "GET CFS-D FILELIST"
  
• CFS-D data base of files notification of new files added -send message "SUB CFS-D YourFirstName YourLastName"
  
• CFS-FILE CFS/ME list of available information files, send message "GET CFS-FILE FILELIST"
  
• CFS-FILE CFS/ME notification of new files added subcription -send message "SUB CFS-FILE YourFirstName YourLastName "
  
• CFS-L discussion group, send message "SUB CFS-L YourFirstName YourLastName"
  
• CFS Newsgroup
  
• CFS Newsgroup (E-Mail)
  
• CFS-NEWS Electronic Newsletter subscription -send message "SUB CFS-NEWS YourFirstName YourLastName "
  
• CFS-NEWS Electronic Newsletter back issues information -send message "GET CFS-NEWS INDEX"
  
• CFS-NEWS Electronic Newsletter. (E-Mail)
  
• CFS Newsletter download latest issue
  
• CFS-Y CFS Youth Discussion Group -request to join (E-Mail)
  
• Chronic Pain Newsgroup
  
• Fibromyalgia Newsgroup
  
• FIBROM-L Discussion Group -subscription-you may get overloaded FAST- send message "SUB FIBROM-L YourFirstName YourLastName"
  
• Fidonet - world-wide network of BBSs. For advice or assistance, (E-Mail) moderator Sandy Shaw
  
• Health Alternative Newsgroup
  
• Immune Discussion Group -request to join (E-Mail)
  
• Physicians' Discussion, help contact moderator (E-Mail)
  
• Physicians' Discussion Group, send message "SUB CFS-MED YourFirstName YourLastName"
  
• Post Polio Newsgroup
  
• Sci Med Newsgroup
  
• Sci Med Immunology Newsgroup
  

E-Mail for the World

• Catharsis, a CFS electronic newsmagazine, Editor and back issues
  
• CFIDS Association (USA)
  
• CFS/ME Computer Networking Project:
  
• Council of Canadians With Disabilities
  
• FMBC Fibromyalgia Society of B.C. (Canada)
  
• Haworth Press - Publishers of the Journal of CFS and many others
  
• M.E. & FM Manual Newsletter (Canada)
  
• M.E. Canada
  
• M.E. Society of B.C. MEBC (Canada)
  
• M.E. Victoria (Canada)
  
• National M.E./FM Action Network (Canada)
  
• New Brunswick ME/CFS Association
  
• Physical Medicine Research Foundation (PMRF), Vancouver Branch
  
• Rescind Inc.
  
• Roger Burns, CFS-NEWS
  
• Seattle Fibromyalgia International Team, Inc.
  
• Sandy Shaw -Networking Project, Fidonet, Free-nets (Canada)
  
• Twins study on ME or FM Seattle Dr. Dedra Buchwald
  

If you are planning on leaving after this page, please sign my guestbook. Thanks!!