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Thank you for visiting the CFM - FM pages.

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Carmen Calloway   U.S. A

Thank you for this site, it really helped me to research a condition a very dear friend of mine has that is similar to FM, but her doctor says that she has Fibro Miosis. Again thank-you


Dorothy Ellen MORRIS   Canada

Great Site! Finally found interesting information and the fact that CFS & FIBRO can hit any "age" - but the mystery still lingers on!! Will keep this site on my "favourites" to follow up! I am also a newly diganosed R.A. SUFFERER in a "crisis' - severe flare up! Does it follow along with having CFS & FIBROMYALIGIA? Sure would like to know how to build "immune system up" to fight off all these ailments! That's all I here-- it's your immune system!! Surely to God, soon they (doctors?researchers?) will locate the genetic problem, maybe too late for me (age 67) but for future generations,(my children and grandchildren). Thanks Dorothy Morris


Bernard in Belfast   Ireland

My Partner has just been told that she has this condition. I think that I suffered from it 30 years ago when I had pain in the neck and shoulders so much so that it made me think that life was not worth living. But this was probably part of the condition. I resolved the problem by yoga, exercise and changing my job to one that interested me. Does this make sense


Mark Burkett   USA

I've had Fibromyalgia since 1990. Your web site has been vey helpful to me. Back in'90 I was at Mayo clinic for my illness. But I have not seen a Doctor since then. Tha past couple of weeks I have have a lot of pain in my neck, and also very painful headaces, dizzleness, and loss of memory. My condition has seem to have got worse since I first got this disorder. Is there any thing that you can tell me. Thanks, Mark Burkett

none


katherine Armstrong  


MIKE WALLACE   usa

I am a physical therapist in Oklahoma. Thank you for your site and all the straight talk. I will refer my patients to your web page. Keep up the good work, and good luck with FM in the future


Kim RaBorg   United States

I have been suffering from FM since a car accident in 1995. The doctors use to tell me that it was stress or a pulled muscle. I have found a doctor now that knows of FM, but I would like further information. Thank you


Kim RaBorg   United States

I have been suffering from FM since a car accident in 1995. I have finally found a doctor that knows what it is and their not telling anymore that it's stress or just me. I would like to know more about FM. Thank you.


Kim RaBorg   United States

I have been suffering from FM since a car accident in 1995. I have finally found a doctor that knows what it is and their not telling anymore that it's stress or just me. I would like to know more about FM. Thank you.


linda wiese    I enjoyed your help. It really helps to know that this is a real diaese and I am not alone.Is there a news letter or penpal I could here from? Thankyou and May God be with you.


Gina Julian   USA

I'm at my wits end and I need a miracle.I can't tolerate or endure this pain and other symptoms anymore.Please Help Me if you can. Thankyou


Leni    Canada

Happened by your site...I was diagnosed with ME/CFS back in 1986. You have a wonderful site..and thanks for your efforts :) Leni


Faye Newton   United States

Thank you for all of this information. I had begun to think I was crazy.


Debbie Nobles   USA

It was good just to read another person's thoughts about this disease. I too am a sufferer and am having difficulty at times dealing with this. I also was diagnosed with a form of anemia that will never get better. It is comforting to know there are others out there like me. Thanks!


Hope Cheatle   Canada

I have suffered with ME/CFS since the fall of 1989 and have tried to read everything I could get my hands on to help myself (when I could read, of course). I returned to full time work 2 1/2 years ago but cannot physically do all I used to do. God has granted me the wisdom to know the difference and for that I am thankful. He has been my biggest supporter as He never closes and His line is never busy. I encourage all to seek His help and establish a personal relationship with Him. He truly makes the hymn "Through it All" so meaningful to me.


Margaret Chiles   Canada

As said before this site is excellent


Marlene Joly   Canada

Very informative and helpful site


Mary Ellen   Canada

Thank you for helping all of us to feel less isolated.


Violet Wilbur   Canada

I have coping with this illness for so long it is hard to remember when it started. Going through millions of tests and having doctors tell me there is nothing wrong with me. I think that is the worst. I really appreciate this information. I am new to the internet and have your site very helpful. The thing that is comforting is hearing someone else say all the things I have said that no-one around me understands. If you have not experienced this yourself it is almost impossible to understand.


elaine   Canada

Babs, I just read your page and the serenity prayer is just what I needed. I have had fibromyalgia for 6 years. I read the comments from your other guests and even though I cried, it is nice to know we are not alone. My husband and family are very supportive but don't always understand. Keep up the fight!


Susan    Montreal, Quebec, CANADA

Hello, I congradulate you on your award. I found an abundance of information on CFS/FMS. Myself being a patient with fibromyalgia and founder of a group in my area I will definitely use this site. You have done a great job for us patients with fibromyalgia. My support group thanks you and so do I.

Fibromyalgia and You


Carone   Canada

It's too late to send bottles, but I'll bet you'll remind us for next year!! Enjoyed your site - glad a friend reminded me to come and learn and sign in. Carone


Kim Despres   Canada

Really enjoyed your site.First time I have come across it but i'll be back.I sent a thank you to MP Thompson for his work on Bill c 214.Let's keep our fingers crossed it passes through for all our sakes and future sufferers of these horrible conditions!KEEP UP THE GOOD WORK!!!!!!!!!!


Elaine   Winter Haven, FL USA

Great Site, I'm just learning how to get on this site, I'll be back for more info. It's too late to send the bottles, but I'll start saving them for next May 12. I hope they get the hint!!!!!!


Jeanette   Nova Scotia, Canada

I also suffer from fibro, it is a terrible desease to have, and I pray that someday soon, ther's a cure. Great Site


Dusty Shoemaker   Canada

I have had Chronic Fatigue Syndrome since 1982. I subsequently developed Fibromyalgia after a car accident. All the best everyone!


Catharine B.   canada

I'm 30, have had FMS for about 10 to 12 years, I have 2 children and a p-t job and a loving husband and none of them understand. I have printed out your guide for family and friends and have left it on the fridge for my family to read. Thank you, I often have trouble explaining myself to them and this will help. Great site, will be sending off my bottle.


Frances K.   Toronto, Canada

Great Website. Glad to hear about the efforts to increase the awareness for all of these issues. I too have been recently diagnosed with FM & CFS. I'm glad that a day has been identified to help focus on these issues and I will be "sending off my bottle". Thanks for all your hard work.


Frances K.   Toronto, Canada

Great Website. Glad to hear about the efforts to increase the awareness for all of these issues. I too have been recently diagnosed with FM & CFS. I'm glad that a day has been identified to help focus on these issues and I will be "sending off my bottle". Thanks for all your hard work.


LISA HAINES   u.s

just diagnosed at 42


Yolanda Rivera-Linares   U.S.A.

I'm a/was dance instructor, a 31year old mother of two great children and a wife to a wonderful, understanding husband. I have been feeling blue since 1998 because no Doctor understood how I felt. I was recently diagnosed with CFS, from a doctor in Santa Barbara, California. I just started to surf the net and have been seeing many beautiful colors other than blue. Some of the letters that I have been reading have brought back a smile in me that I thought had left for good. Thank You because these smiles help to know that I'm not alone


karen in ham (905) 524 2797   Great site! you should use it as basis of a book!


Karen Seay   The Principality of Hamilton

Hi Babs! I like this site - very clear (except for typing put on a slant ie. italics) and excellent use of graphics to illustrate your points. It's good work! Especially enjoyed the section on Snake Oil today! Keep up the good work. LOL karen in ham

whaaa?


Mary Brown   Canada

Hi Babs, Thank you for the work you have done with the Message in a Bottle project. It is a novel idea and hopefully will gain some exposure, education and funding for our illness. MB


Sephira Leblond   Quebec, Canada

Hello Barb! I've been dx in 1996 with FMS. I didn't go back to work since. This is a wonderful website. We need more of it in Canada. I like your idea of activism-mission. We can do lots of things from beds and with a computer. Good luck and thanks


Vivian Joyce Filion   Canada

"The Serenity Prayer", my favourite, since I've being old enough to understand prayer,long before I too,used it to cope, "get through", this "thing" called FM!


Vivian Joyce Filion   Canada

"The Serenity Prayer", my favourite, since I'm being old enough to understand prayer,long before I too,used it to cope, "get through", this "thing" called FM!


Marty   North Carolina, USA

Thanks for such a wonderful site. I am a victim of CFIDS; FM; Post-Polio Syndrome; degenerative disk disease; interstitial cystitis, and the list goes on. It took me 4 long, frustrating years to obtain my social security disability income. I did have a pension from my employer that I only fought for for 8 months - but for it you only had to be unable to preform your present job. I was a Court Reporter. Can you imagine trying to get every word down that was said in court? I have been unable to work since 5/95, but my medical record indicate I was misdiagnosed since 1982 when the CFIDS actually began. Those diagnoses were arthritis, allergies, deparession, IBS, colitis, etc. I finally located a doctor well known in the field of CFIDS and he was wonderful - but had stopped taking medicare patients. I can't afford him now as my insurance won't pay if medicare doesn't pay first. Oh well, the search continues. I have located a good internist who is very understanding and prescribes the medications I was prescribed by the specialist. Maybe one day doctors will be more educated about these horrible conditions. And I certainly hope the public will. Again great site. Thanks for all your effort.


Liz&Nick Naunheimer   Canada

What a wonderful idea. I'm sure many people will find this information helpful. I found it to be interesting and insightful.


Mike Millington   Canada

Thanks for the info. Apparently my mom has FM and she got me to look at this site. It's a real attention getter.

T_Bird's Nest


Nancy Timm   Canada

Great webpage very informative, and easy to get around.


Doris   Canada

Hi Barb It's me again,I see so many have come to your site ether to give support or come for support.I do hope you know that you have done a wonderful site. All that have come to visit your site have the comfort of knowing they are not alone.Good luck Doris

none


Scott & Laura Farraway   Canada

I just want to say thank you for the effort you have taken to put this together Babs. Reading your web page has really struck a few chords in our hearts that we often avoid playing because they're too painful to think or talk about. I think Laura is going to get on here sometime. You may here from her. May God richly bless you and your family! Scott.


Scott & Laura Farraway   Canada

I just want to say thank you for the effort you have taken to put this together Babs. Reading your web page has really struck a few chords in our hearts that we often avoid playing because they're too painful to think or talk about. I think Laura is going to get on here sometime. You may here from her. May God richly bless you and your family! Scott.


Linda Christie   Canada

What a wonderful job you have done. I have suffered with Fibro for quite a few years now. It is not a fun thing. Unfortunately, because you don't look sick people think that you are just a malingerer. It is because of people like you that our world is a little brighter. Thankyou. P.S. Feel free to get in touch with me.


Diane Fowler   Canada

I was diagnosed with FMS/CFS last November, however I have suffered for many years. By reading websites like yours and belonging to groups such as fmsow@egroup.com has helped me to understand my disability. Thank you for this wonderful site.


Carla   USA

Nice site. I am still reading it and will be for some time. DX FMS 9/99 Takes a few readings sometimes before I get it, you know? Thank you for the info!


Stacie Jaye Shinewald   Canada

i have been suffering from FMS since i was very young. i was diagnosed when i was about 14, i am now 25 years old. i find it very difficult to explain FMS to my coworkers and friends; when they playfully hit me and i wince they call me a wimp. when i am not able to work everyday they call me lazy...it is extremely frustrating. i would like the public's awareness of CFS and FMS to be raised so that the myths of each illness will no longer be a weight on any of our shoulders.


Stacie Jaye Shinewald   Canada

i have been suffering from FMS since i was a very young. i was diagnosed when i was about 14, i am now 25 years old. i find it very difficult to explain FMS to my coworkers and friends; when they playfully hit me and i wince they call me a wimp. when i am not able to work everyday they call me lazy...it is extremely frustrating. i would like the public's awareness of CFS and FMS to be raised so that the myths of each illness will no longer be a weight on any of our shoulders.


Francina   Alberta, Canada

This is my second try at this, think I lost my last comment in cyber-space due to fog! I have suffered with FMS for almost 31 years. When finally diagnosed in 1991, I felt relieve in knowing I was not insane. Last year my doctor strongly suggested I quit work and stay home. I of course applied for Canadian Pension Disability, but many of us know how our government treats those suffering from this "invisible" disability. Thank you for providing canadians with the opportunity to become involved with the Message in a Bottle campaign to get our voices heard and the message across. If there's anyway I can help, let me know.


Elizabeth Krum   Canada

I have had CFS for 4yrs this June. I was only diagnosed last fall. I was an RN until I got sick, but am still involved in health information via the Internet. I feel it gives me some direction. I am curious, since I have been sick I have been stricken with intolernace to heat, and accompanying that, my hands and feet get very, very got. It is strange, I have to use cold packs to get relief. Anyone else have that problem. I just got on to your site, but am looking forward to reading it. liz krum


Lady Patrick   Canada

Hi: Just found your site from the fibrohugs site in the states. Another late night of severe pain, and worries. I have had fibromyalgea since childhood. I wasn't diagnosed until 26. I am now 34. My mother tried to find a diagnosis for various symptoms she observed in me as a child. Later I hid the pain, thought it was just a part of life, everyones not just mine. I started wearing makeup although I wasn't supposed to. This hid the run down, tired,dark circles under my eyes greenish-yellowish anemic look I had always had. Without the physical appearance of unhealthyness, and the onset of my teen years, my mother stopped worrying as much, regarding my looks and behavior and put some of them off to typical teenage years behaviors. That was until one day, I slept in a bit late, and didn't bother putting on my make up before coming down stairs in the morning. A habit I'd gotten into to hide the fact that I was wearing light make up. The first words from my mothers words were the exact words I'd heard many many times as a young child. Are you sick, you don't look well, your skin looks greenish yellow, you must need more iron or something, you have dark circles under your eyes. I think you better go to your doctor. I explained with the frustration that had built up in childhood from the many teasings I got from siblings regarding my ill appearance. I said I'm not sick, this is me, this is how I always look. Mom argued that it wasn't how I always look and told me to go look in the mirror again. I finally explained, I just don't have any makeup on today. My mother said you don't wear makeup. I said yes I do, I only wear natural looking makeup, but I've worn it for years. I put it on first thing in the morning before you see me and I've gradually added more over the years as you got used to it. My mother said I thought you had gotten better, but if that is the difference that makeup makes, and it looks that natural, you better go back up and put it on, and don't go anywhere without it because you look sick without it and healthy with it on. Later as injuries were recieved, the pain, sleep and other problems increased. At age 24 I again began looking for the cause of my pain, fatigue and other problems. At age 26, and after much hassle, ignorance, neglect etc. I was finally diagnosed. I thought I would get a diagnosis, treatment or whatever would fix the problems, and go on with my life goals. That wasn't to be the case. I applied for and recieved disability benefits via F.B.A. Disability. Due to my age, and medical condition as well as injuries, I hadn't been able to work enough time and put in enough pay to recieve Canada Pension Disability. One of the reasons I sought a diagnosis and cure in the first place besides the agony was I was unable to find a job that my condition didn't affect. Of course had I been diagnosed as a child perhaps a government disability through C.P.P. or some branch have been provided for. Or perhaps a pension through my father's work benefits and insurance plans. Then there are the doctors for which you are a pawn in the academic/social/medical argument game for. Those who patronize, lie to, ignore, and attack you when your already down on yourself and life enough from having the condition you do, and having watched your dreams float away. This was not the case. What aggrivates me additionally now, is the following. After having my life severely affected by a doctor who just didn't care, know or have the time for believing, hearing about or acting in a professional manner, and due to a home invasion forcing me to move, my benefits were interupted. My benefits were supposed to be permanent as well as my condition. Once I moved back, I have been further discriminated against because I've had my disabling condition since childhood and there for was refused C.P.P. Disability. The new rules for O.D.S.P. (Ontario Disability Support Program)which was once called F.B.A. Disability or GAINS has been set up so that unless you are on C.P.P. Disability, you are not fast tracked as other disabled people are. You must go through the entire, and even more complicated process all over again. Add to that my not having most of my medical file thanks to the ignorant and prejudice doctor, and I've done without my financial income, as well as suffered from depression for some time now due to lack of income, and mistreatment by doctors. Talk about the "Isolation is" writing on this site, my isolation along with many of those other ones listed, is my mother-in-laws death, and my mother's illness and soon I'm sure to follow death. We couldn't afford to attend the funeral services, we have now learned my mother-in-law was being obstructed in her communications with us and died feeling she had been abandoned by us. The will and estate have been interferred with, and we can't afford legal councel, we can't even afford to go to Mom's home to try to enforce any rights we may still have legally to personal property such as photo's and documents, financial files etc. Isolation is when it seems no one cares, and yet you can't fight for yourself, when others won't or don't. It's when others say you are a somebody and should realize that about yourself, but you are treated like an invisible, valueless, burden on society that many wish would go away, and make it as difficult as possible for you to go on let alone want to go on. But onward I/we struggle. I didn't know where to put this, due to not knowing if this was the area for post, or just short guest sign ins. But I'm frustrated, angry, tired, and in alot of pain, so I posted the general ideas of my story. Lady Patrick


Patricia Denis   Canada

Barb, Thank you so much for a great job. It is about time someone is doing something to make people aware. What a wonderful site. If we dont stick together nothing will ever be done. I commend you on all your time and work as I know how difficult it is to keep going sometimes. If there is anything that I can do to help please dont hesitate to ask. I have suffered for years and was diagnosed by a Fibromyalgia Specialist. Even then I was turned down for Canada Pension and any help at all. I am sure that they all believe that it is all in our heads but you know if they wont listen to a specialist who will they listen to. Just the same I will never give up. I will fight them to the end. People with less problems are taken care of and that irks me. Oh well, push on and we will win. Thank you again and I support you 100%. Patricia Denis

orchid44


Linda   Ontario, Canada

Great web site, very informative. I suffer from FM/CFS and Osteoarthritis so I know how it must have been hard for you to get this site up and running.


D. Marshall   USA

Thank you for this wonderful web site. You express so well what so many of us feel. Donna


D. Marshall   USA

Thank you for this wonderful web site. You express so well what so many of us feel. Donna


Pat    Canada

Good site. I suffer from FM-CFS,degenerative disc disease and other rhuematology/arthritic problems. I manage the CanWest FM/CFS internet support Group for BC-AB subscribers. Good Project you have going for May 12th.Pat

<goodyg@cintek.com>


Judy Kelly   Kanata, Ontario, Canada

Good morning Barbara, I have printed out copies of the Mission Statement and Advocacy Plan to pass on to some ladies in my Taoist Tai Chi class who suffer from these illnesses. All the best and cheers, Judy Kelly


Doris   Oshawa,Ont. Canada

This is a wonderful site,I know it took a lot of energy to put all this information together.I thank you from the bottom of my heart,I wish you all my best for the good work you are doing for so many of us out here that are suffering with this illness.I will send this site to all my friends and help spread the word.Sweet Hug's Doris

none


dianne burkitt   canada

hi, i've suffered from CFS & FMS for the last 14 years and was lucky to have had a very good doctor. however when i relocated i have struggled for the last 2 years with every health care professional i've been in contact with. i'm glad about your site. i am a support group leader for people with CFS & FMS and a member found this site. thankyou very much and i will do all i can to help. dianne


La Rinda M. Peterson   USA

GOOD FOR YOU!!!! I AM A OR WAS A NURSE WHO HAS FMS/CFS AND IT HAS TOTALLY AND DRASTICALLY CHANGED MY LIFE FOR THE WORSE!!! I DO NOT KNOW WHAT KEEPS ME GOING, I GUESS IT IS BECAUSE I HAVE FAMILY TO LOVE EVEN THOUGH THEY DON'T UNDERSTAND THIS ILLNESS. I JUST TURNED 37 AND I FEEL LIKE I AM 97!! I PRAY WITH ALL OF MY HEART THAT SOMEDAY SOMEHOW THERE WILL BE HELP FOR US!!!! GOD BLESS YOU!!! LA RINDA M. PETERSON


Marcie Wood   USA

What a wonderful site? What inspiring -- yet realistic -- thoughts & concepts. I'm a "retired" public affairs consultant in San Diego, California -- also 54 and five years into this disgusting illness and looking for positive ways to make a difference. What group are you affiliating with in the USA? Lolts of groups out there on the www: Some very competitive, hence not productive; others have good ideas, but no skills. You made this a good Friday! I'll be back to visit again when I have more time. Warm regards, Marcie Wood


holly austen   canada

have had cfids for 8 years. was a social worker prior to my illness am glad to see this work being done I agree that we have to do more to get our government involved in actively pursuing cures and support programs (p.r. and p. ed) I am not sure that the length of the notice to Alan Rock is a good idea, as the more you include in the statements, the more likely individuals may not agree with the total statement and would therefore be reluctant to sign on. I think it is important to make such statements concise and factual as possible. to make them as inclusive as possible. Good for you for getting things rolling though. We canadians have not been as organized or active as our american counterparts. I'll be interested to hear more as we work together for change. Thanks


Jules DE CUYPER   Belgium

Always ready to help...


Jay La Morre   Japan

Mom, I read everything on your webpage and I can say that I'm very proud of you. Your really a great webpage designer! I'm very proud of you and hope your fighting spirit will motivate the Canadian/American Governments to do something about this horrific daymare/nightmare!! With love from Japan, Jay, Yuko and Tyler

http://skynary.com/jayuko


Darlene Schultz   Canada

Wonderful job Barb, you should be very proud.


Nancy Bradshaw, Environmental Health Clinic   Canada

Great job, Barb. This website is both informative and insprirational. Keep up the great work!


Nancy Bradshaw, Environmental Health Clinic   Canada

Great job, Barb. This website is both informative and insprirational. Keep up the great work!


Nancy Bradshaw, Environmental Health Clinic   Canada

Great job Barb. This website is both informative and insprirational. Keep up the great work!


Roger   USA

Good job! Hang in there. There is Hope!


Valerie   USA

Loved your website. I have FMS, and it's devastated my life. I am doing all the research I can, not only to help myself, but others, as well. Many of us have become energized about FMS Awareness Day and are trying to get the word out. Thank you for your great website. I will recommend it to others. Valerie


candace   Wonderful wedsite Barbara. You are going to help and inspire a lot of people with your positive words and thoughts. candace


Leo Quenneville    Canada

Read the message you sent yesterday and decided to visit you web site I'm still looking for help with this insurance thing,but it helped to read that someone else had problems with them as well. Not that they had problems but that I was not alone.I'm very new at this internet business, and I find it hard to get the most out of it. Anything you can suggest to help me with that??


Louisa Ihns  

Hi Babs,I stumbled on your website while browsing the ME/FM action network. I really like your site and can identify with what you are going through. I was involved in a car accident in August of 1997 and have not been the same person since. december 1998 I was diagnosed as having Fibromyalgia, in the meantime got on LTD, was cut off in July of 1999 and fighting the Insurance Company now, CPP did deny me benefits as well. Ia 55 years old, in May 56, so this is my story in condensed form. Take care, Louisa Ihns


Chris Baker    Newfoundland

Dear God, my guardian Angelplease watch over my friend Barabara Russell.four Angels around Barabara bed, four around her head, one to protected her while she is sleeping,one to give her strength, one to bless her with love, one to guide her thru her days ahead. AMEN


Nancy A. Picken   Dearest Babs,It was so great talking to you today sweetie.Thankyou for your input on "The Invisible Illness".Hope to see you real soon, talk to you later.Love Always,Nanc.XOXOX


Donna Garvey   Welcome to the world of ME/CFS! Got your message RE: John Wodak. How do you know him? Will have our Web Site up in early April. See you then.


Daniela   Canada

Hi BarbaraI received your e-mail and there is an abundant amount of information that I will definitely read and pass on to others.You have done an excellent job on your web page.Keep up the good work Daniela


Daniela   Canada

Hi BarbaraI received your e-mail and there is an abundant amount of information that I will definitely read and pass on to others.You have done an excellent job on your web page.Keep up the good work Daniela


Nathalie   Thank you for your wonderful website, I will pass it onto others. God bless.


Lori Armstrong   Canada

Thank you for building an interesting and useful site.


Tanis   Canada

Wonderful site. Thank you for taking the time to put it together so that we may benefit from it.


Judy Kelly   Canada

Barbara,Thank you for all your time and effort to create this special website. Not only is it easy to read, but is also very interesting and informative. I enjoy your website very much. Thanks again for all your support. Cheers, Judy.


Suzie-Jane Bookman   Canada

Am I proud? Go girlfriend!!!!Love, Suzie.


Beauregard " Mickey " Finster   Canada

Way to go Babs. Keep up the good work.


Jena Lee Strong   Canada

Stopped by to take a quick pick. I am bookmarking your site so I can return and spend more time.Here's to Pain Free Days!


Jim Adams   Canada

Good job. A very impressive site


Marg Clements   Canada

Dear Babs,I don't know why my name seemed familiar to you except I have been involved in one way or another with this movement (ME/CFS-FM) for the past ten years. I got ill in Sept/88 and in May/90 was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. I have been a part of the Mississauga and Oakville CFS support groups and the Oakville FM support group. I was co-leader in Oakville for the CFS self-help group for a little over four years. I was an area supervisor for a province wide York University research survey on the impact of CFS for a little over a year in the early 90s. This advocacy work has involved guest speaking on talk-in radio and to other support groups, tv taping for The Health Show on FM, on-call telephone support- to sufferers, their families, doctors and lawyers-- as my telephone number was published in the ME Messenger-Canada wide. It has entailed organizing petitions, letter-writing campaigns, meetings with MPPs and with the provincial minister of health (NDP), organizing participation in blood testing by Dr. Les Simpson of New Zealand and by Ms. Dilnaz Panjwani of Toronto. All of the above actions, were as beneficial to my recovery at the time, as to those I supported. I learned and with that I felt a little less helpless. However, it takes its toll. You do get a little jaded and discouraged before you finally figure out you're on your way to another health burnout. Now, after extricating myself from the front line, I volunteer for a couple of hours each week with the Myalgic Encephalomyelitis Association of Halton/Hamilton-Wentworth in Burlington. It's been a long and interesting road. Hopefully we'll cross paths in the future and share stories. Take good care.Marg


Buddy   Canada

Woofing great site.............


Angel Goddess   Canada

Webpage


Charlie Perkins   USA

Hi Barb, Nice Site, will mention it to others...lol


Bonnie Heidema   Canada

It's a great website and very informative. We know how much time and energy this took.Much love,Bonnie


Robert McArthur   USA

Hang in there...I have avascular necrosis and sometimes I think it really *ucks but it Has made me aware of the world and life in a way that I could never have as a 'healthy' person. And if I remember that this life is but a moment and a learning experience that was carefully set up, it changes the perspective a bit.I pray always for hope, with it, life is enjoyable in spite of the pain.Your friend in Sobriety,Bob Mc.Pocatello, Idaho USA


Janie Dyelle   Canada

Hi, I have enjoyed this website very much.I am really glad to see someone in Canada posting information for Canadians to read and find info.Keep up the good work PS I suffer from FM Janie

CFS-FM Tripod


Peter Wray   Canada

Wonderful site!Obviously a labour of love (and clearly one of need).I've added you to the EISC links database.Keep up the good work.Peter

Peter J. Wray - Internet Presence Development


Ken Euteneier   Canada

Beautiful job on the web site Barbara. As being a webmaster with Fibro also, I know the terrific amount of work a web site takes to create.What I see here Barbara is much more than a job well done, I see your heart and love went into the creation of this site and you should be proud of your accomplishment.I look very forward at getting to know you in the year to come, and girl,,,, do I have people collecting bottles!!! LOLFantastic idea you guys came up with. You are all to be commended on that one. I have all my Canadian Members Plus all my out of Country Members participating in this.Thank you for caring my friend,Ken

Fibrohugs


Kim Fong   Canada

You've done good, Barb!I really admire your perseverence and courage, despite this debilitating disease. Thanks for enlightening us on this topic.Kim

Current Events -- Canada


Phyllis   Canada

Beautiful site.. you did good...

Phyllis Griffiths Homepage


Doug Lobel   Canada

You have a very informative site here. I like the fact that you have numbers to various organizations. I specifically like your section on recent developments.Keep up the good work.Doug LobelMontreal, Quebec

Doug's CFS Site


peter tingbro   Sweden

I only wish you a good day,and I hope yours Hp It's with you today.Blessings from Peter.


Stewart   Nottinghm UK.

Well done babs I will love exploring your site. All the best Stewart


John Wodak   CANADA

Very nice, Barb. Felicitations to both of you.


Kim Raymond   Canada

Great idea Babs. Very nice site,and informative.See you on the list.


walter sherman   Canada

you have done such a great job. i am so proud of you. lots of good wishes. love walti


Cliff   Canada

Hi Barbara, I haven't gone through the whole site yet, but I will! Take care....


Jimmy Batten   USAFlorida

Very informative, thank you


david m. reagan   USA

one of your WCH friends...........Toronto has very, very special meaning to me...... i'll let you know..............david


Wendy W   USA

Nice site. Glad to have you in WCH! Love & Huggies

http://members.cwic.net/dwwman/wworld


Barbara----Babs   Canada

If anyone has a poem, or some prose that they would like to add in the 'Creative Section, please email me. barbcfsfm@home.com


gary sandtorv   USA

you did a great job on your web page I am going down stairs to tell BArbara brovo


Vivian Phillips   USA

I am the creator of the Message in a Bottle Project, and for Americans visting here, please go to the above url for instructions for you. Great job, Barbara. We've got most of North America covered!

http://home.carolina.rr.com/run/mab.html


Tammy McNamara   Canada

Great Work Barb, I can now see why it took awhile, good luck, my friend, and always take good care.


Cindy   USA

Barbara, You did an outstanding job on your web site. Congratulations on taking an active role in the battle against CFS and related illnesses! Keep up the good work.


Michael and Yuko La Morre   Canada

Dear Mom, we are so proud of you. You did such a wonderful job on your web-page. We know this took a lot of work and plenty of perserverance. You gave much of your energy and time to educate and support people(and their families) who are suffering from this debilitating disease. You did not stand by idly and give up after this illness consumed your life, and this takes plenty of courage. Your fortitude and hope is an inspiration to all who read your web-site and who know you and love you. We love you very much!xoxo


Stephannie   USA

Good luck and god bless. I pray that all goes well with you. Remember, our mind controls the body, so control the mind.

http://proplus.htmlplanet.com




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