12/04/00 15:48:37

Name: Maureen Rossi	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: Reiki, Nutrition	What treatments didn't help?: Accupunture, Herbs
Where are you from? City/State/Country: Smithtown, NY USA

Comments:
I am glad to have stumbled on your web-site. It's an excellent source of information and I look forward to tapping into it again in the nearest future. FM/CFS are ver lonely illnesses -- I call it the "Abyss". I would love to see more hopeful information -- about remissions and how to stay in remission.

12/03/00 01:13:44

Name: Richard Martino	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: I think so	What treatments have helped?: Rest	How many years have you had CFS/FM?: mono 30 years ago
What topics would you like to see on this site?: help topics	Where are you from? City/State/Country: 11789

Comments:
I'm on celexa and waiting for it to kick in. Had all testing and all was neg. Started celexa 3 days ago 10 mg for 5 days then 20 mg thereafter.

11/16/00 23:45:08

Name: Kimberly Sutton	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: both	What treatments have helped?: magnesium malate	What treatments didn't help?: b-12 shots, anti-depressants
How many years have you had CFS/FM?: 3 years	Where are you from? City/State/Country: Seaford, NY, USA

Comments:
This is a great site. Very informative. Can find a lot of information in one place -very convenient.

10/21/00 18:13:52

Name: nova Davis	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: both/S.L.E also	What treatments have helped?: none so far	What treatments didn't help?: steroids inlamation drugs
How many years have you had CFS/FM?: 9 years no remission	What topics would you like to see on this site?: these and Lupus S.E	Where are you from? City/State/Country: denair, ca. United states

Comments:
My problems began in 1985, I had a reaction to breast Implants(gel,the old kind) they discentgrated in my body leaving formaldahyde and other toxic carcenogenicts to have free run of my body. I was allergic to their contents so my body ate away at the env lopes. this has been proven at both Standiford and U.C.Davis,Dr.Gershwin and Nagua.I almost died last year, I have spent months on oxygen machines, this year Thanks to my dear Lord things with my lungs have cleared. But my pain level is never lower than a 10 sometimes I feel this number should be raised to 100. Thank you for your articles they have been very helpful to me.

10/21/00 18:13:43

Name: nova Davis	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: both/S.L.E also	What treatments have helped?: none so far	What treatments didn't help?: steroids inlamation drugs
How many years have you had CFS/FM?: 9 years no remission	What topics would you like to see on this site?: these and Lupus S.E	Where are you from? City/State/Country: denair, ca. United states

Comments:
My problems began in 1985, I had a reaction to breast Implants(gel,the old kind) they discentgrated in my body leaving formaldahyde and other toxic carcenogenicts to have free run of my body. I was allergic to their contents so my body ate away at the env lopes. this has been proven at both Standiford and U.C.Davis,Dr.Gershwin and Nagua.I almost died last year, I have spent months on oxygen machines, this year Thanks to my dear Lord things with my lungs have cleared. But my pain level is never lower than a 10 sometimes I feel this number should be raised to 100. Thank you for your articles they have been very helpful to me.

10/01/00 16:57:57

Name: Nicki Sanchez	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: MY son has CFS.	What treatments have helped?: None	What treatments didn't help?: Too many to list here
How many years have you had CFS/FM?: My son has it since 1996	What topics would you like to see on this site?: Health carer providers & latest research	Where are you from? City/State/Country: Hicksville, LI,NY,USA

Comments:
We have tried everything from anti-virals, anti-depressants,acupuncture,nutritional supplements,kutapressin & B-12 injections,florinef&psychological counseling.

09/27/00 15:05:42

Name: ROSEMARIE BRESCIA	My Email: Email Me
Do you have CFS and/or FM?: YES	What treatments have helped?: NONE
How many years have you had CFS/FM?: 1 1/2	Where are you from? City/State/Country: STATEN ISLAND NY

Comments:
ANY DRS. IN THE STATEN ISLAND AREA SPECIALIZING IN CHRONIC FATIGUE

09/27/00 15:04:14

Name: ROSEMARIE BRESCIA

My Email: Email Me

Comments:

09/16/00 10:47:25

Name: Linda Z	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: I think so, not diagnosed	What treatments have helped?: nutritional supplements	What treatments didn't help?: meds for depression and obsessive compulsive disorder
How many years have you had CFS/FM?: as long as i can remember	What topics would you like to see on this site?: seminars,outpatient resources	Where are you from? City/State/Country: Commack/NY/USA

Comments:

09/13/00 08:33:42

Name: Shar	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Yes	What treatments have helped?: none	What topics would you like to see on this site?: diet and vitamins
Where are you from? City/State/Country: California

Comments:
I am looking for alternatives to the medication that have been prescribed. It seems to be causing more damage than good to my body.

08/09/00 02:33:49

Name: Barbara Quintin	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Kutapressin/B12/Magnesium/	What topics would you like to see on this site?: Available Doctors
Where are you from? City/State/Country: Lynbrook NY USA

Comments:
I am going to a Dr. who does not believe in CFS. She kept asking me what my symptoms were. I kept saying extreme exhaustion... weakness... achy... Well, what are your symptoms. I am now looking for a CFS friendly Doctor in the Lynbrook NY area.

08/06/00 15:47:51

Name: Ellen Katcher	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: none	What treatments didn't help?: amantadine; echinacea
How many years have you had CFS/FM?: 30 (thirty)	What topics would you like to see on this site?: good MD's and lawyers	Where are you from? City/State/Country: Queens, New York

Comments:

07/18/00 21:18:41

Name: Michon	My Email: Email Me	Do you have CFS and/or FM?: I think I do, still doing tests??
What treatments have helped?: Sleep, off of work!??	What treatments didn't help?: Any anti-inflamatory, pyshical therapy,	How many years have you had CFS/FM?: Since Oct of 1999--PAIN
What topics would you like to see on this site?: Seemed pretty good	Where are you from? City/State/Country: Ephrata,PA

Comments:
Just trying to find ANYTHING out that I can. I have been to all kinds of doctors and specialts since last October, trying to find out WHAT I have and that it is NOT in my head. At first everyone was convinced it was carpal tunnel(since it was in my wris ) but it was also up my arm. I was tried, but didnt really think much about it at first. Well since Feb of this year, I have been on and off of work(not capable of even doing regular job) And STILL trying to figure this out. My husband actually came ac oss info about this diesease and thought we would check it out. I switched doctors again and we are running blood tests(which is probalby the only thing I havent done) to rule out Thyroid & Lyme. We will see. I wish everyone luck out there, and I feel ad for the 20 year old people just as much as us older people. Hope someone figures something out. Everyone thinks its great being off of work--TO DO WHAT??????? Im to tried and to sore ususally to DO anything more than a few minutes. GEEZ!! Good luck God bless and take care all. MRB

07/16/00 17:47:55

Name: AmandaFrench	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: CFS
How many years have you had CFS/FM?: nearly 5	Where are you from? City/State/Country: Manhattan New York USA

Comments:
I would like to know who to contact about doing some voluntary work to help those with CFS local to me. I would also like to know when the next support group meetings in Manhattan are scheduled for.

07/10/00 16:22:00

Name: Liberte Donato	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes, both	What treatments have helped?: Ultram, predenisone, Celebrex	What treatments didn't help?: antidepressants, immune suppressants, nerve-blockers like Neurontin, other meds:Depocot, Webutrim, Ridaura,
How many years have you had CFS/FM?: 6 yrs.	What topics would you like to see on this site?: referrals to local specialist	Where are you from? City/State/Country: Sterling, VA, USA

Comments:
Rheumatologist for past 6 years has actually poisoned me with cocktail of lethal medicines. Pain never went below level 5. Looking for a doctor who tries to treat me as though I am a human being who expects to be able to functions, and not some guinea pig to see how dependent I can be made on dangerous medications. My rheumatologist was dreadful, very dogmatic, non-informative. Found out meds I had been prescribed were intended for only short-time, some were addictive, others could stop my body from produc ng its own natural hormones. Any questioning of her practices brought on a confrontation.

06/24/00 16:58:34

Name: linda coyne	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: my son i think	What treatments have helped?: need a doctor referral	What treatments didn't help?: in nyc area
What topics would you like to see on this site?: referrals	Where are you from? City/State/Country: bronx, ny

Comments:
All tests are negative on my son who is in his late 20's. He has the symptoms of this syndrome. Where do I go to get him help. Please e-mail me back this is very disturbing and stressful.

06/24/00 16:58:13

Name: linda coyne	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: my son i think	What treatments have helped?: need a doctor referral	What treatments didn't help?: in nyc area
What topics would you like to see on this site?: referrals	Where are you from? City/State/Country: bronx, ny

Comments:
All tests are negative on my son who is in his late 20's. He has the symptoms of this syndrome. Where do I go to get him help. Please e-mail me back this is very disturbing and stressful.

06/20/00 00:52:01

Name: sean glendening	My URL: Visit Me	Do you have CFS and/or FM?: fm
What treatments have helped?: diadrcodene seroxat	What treatments didn't help?: accupunture	How many years have you had CFS/FM?: from1980 getting worse
Where are you from? City/State/Country: uk bolton

Comments:
hi all i have got worse but the new painkillers are helping, i have a hot bath every day. i start work at 2 in the afternoon as i cant move till after 10 .

06/10/00 19:34:23

Name: Lauren	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs	What treatments have helped?: acupuncture/vitamins/exercise/PRAYER	What treatments didn't help?: doctors
How many years have you had CFS/FM?: since childhood/steadily since 1977	What topics would you like to see on this site?: public advocacy	Where are you from? City/State/Country: Glen Cove, NY

Comments:
Where can I possibly begin? This is a huge step for me in addressing things on this site, for I \have fought my own personal battle and struggle with this crippling and inhibitive disease for so long. I am so relieved that there are organizations and supp rt out there now who will understand that incredibly ambitious, active and hopeful people can be so knocked down and MISINTERPRETED by something that is physical. Thanks you for allowing me this moment to speak my thoughts in general about this. I wish th t I had the unlimited money to open up a "resting center" where people can go to get the physical and emotional support that they need to rest and heal and move forward from a bout. I am most grateful that I am in a position to extend my hand and thoughts that people can get through this with pacing themselves. But one must have extraordinary patience and CONSISTENT support. That way, healing can be iminent.

06/07/00 02:08:35

Name: Sharon Cory	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Fibromyalgia	What treatments have helped?: Guaifenasin	What treatments didn't help?: pain releivers / nothing works
How many years have you had CFS/FM?: 10	What topics would you like to see on this site?: research into positive diagnosis/ Something to show my husband and others that this isn't all in my head!	Where are you from? City/State/Country: Shelly, MN / USA

Comments:
I found your sight informative. I was especially intrested in the fact that there is research being done that points to CFS being caused by a virus. I had thought that FM was a diagnosis given to everyone who had pain that didn't add up to any other disease. Then I was diagnosed. I thought all my pains and fatigue came from Arthritis. Not so. Now my 34 yr. old daughter has been diagnosed with FM or Myofacial pain Syndrom??? They can't decide yet, too early. She just got over a bad viral flu.

06/07/00 02:01:31

Name: Sharon Cory

My URL: Visit Me

My Email: Email Me

Comments:

05/30/00 23:05:18

Name: HelayneWeissman	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: I have both,and arthritisof theleft hip very bad	What treatments have helped?: vitamins	How many years have you had CFS/FM?: 7or 8 years
Where are you from? City/State/Country: flushing NY

Comments:
I would like to know where there a support group,in flushing . thank you

05/22/00 10:20:56

Name: Barbara Farkas	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: Not much. I use Elavil for sleep and Vicodin for pain.	What treatments didn't help?: physical rehabilitation & physical therapy
How many years have you had CFS/FM?: approx 4-7 years	Where are you from? City/State/Country: San Diego, Ca/USA

Comments:

05/19/00 02:04:29

Name: Afzia Pappas	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: both
What treatments didn't help?: paxil	How many years have you had CFS/FM?: 11

Comments:

05/05/00 04:11:42

Name: Linda Boate	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Both	What treatments have helped?: Water therapy, elavil, pain medication, it helps some. Lots of rest.	What treatments didn't help?: Physical therapy, NSAIDS,
How many years have you had CFS/FM?: 11 years	What topics would you like to see on this site?: What is the Epstine Bar Virus	Where are you from? City/State/Country: Prescott Valley, Arizona

Comments:

05/05/00 03:59:52

Name: Linda Boate	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Both	What treatments have helped?: Water therapy, elavil, pain medication	What treatments didn't help?: Physical therapy
How many years have you had CFS/FM?: 11 years	What topics would you like to see on this site?: What is the Epstine Bar Virus	Where are you from? City/State/Country: Prescott Valley, Arizona

Comments:

05/04/00 04:44:05

Name: Lisa	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Both	What treatments have helped?: None	What treatments didn't help?: Vitamin Supplements, Kutapressin, B-12 injections
How many years have you had CFS/FM?: 6 years CFS/2 years FM	What topics would you like to see on this site?: Disability Info,	Where are you from? City/State/Country: Flushing, Queens, NY

Comments:
Your site is very helpful and informative. Thanks.

04/29/00 18:26:06

Name: Sally Louth	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Ginko Bilboa	What treatments didn't help?: Hypnotherapy
How many years have you had CFS/FM?: 5 years	What topics would you like to see on this site?: A cure!	Where are you from? City/State/Country: Peterborough UK

Comments:
Interesting website

04/16/00 21:34:25

Name: Hal Guentert	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Gamma Globulin IM	What treatments didn't help?: Ultram
How many years have you had CFS/FM?: gradual onset 10+	What topics would you like to see on this site?: HHV6A Findings	Where are you from? City/State/Country: San Antonio, TX

Comments:
I am extremely frustrated with the variations in rulings related to CFS by Social Security ALJs. It seems that approval in some areas in near 100% while down here it is an uphill battle with hearings loaded with SSA quacks who believe they know all there s know on every subject. I am very frustrated with the slow progress in finding a marker and effective treatment.

04/14/00 21:38:18

Name: connie small	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes	What treatments have helped?: acupuncture, pain medication -vioxx	What treatments didn't help?: antibiotics, anntivirals like acyclovir, or pain meds like advil, aspirin, etc.
How many years have you had CFS/FM?: five	What topics would you like to see on this site?: a doctor referral list by state and city	Where are you from? City/State/Country: Boston, MA

Comments:
We have so many expert doctors here but they are overwhelmed and do not take new patients. This is very frustrating.

04/13/00 02:10:06

Name: cheryl	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: cfs
Where are you from? City/State/Country: woburn,ma

Comments:
Hi I'm 22 just found out I had cfs. I went through chemotherpy for hodgkins disease about a year ago and havn't been the same. If i dont get about 10 hrs of sleep a night i cannot function. My legs ache so much. This is so horrible. I am now learning ways to cope with this. I am losing contact with my friends,and my boyfriend. I just do not have the energy for anything anymore. All i think about every second of the day is going to bed. But, when I try to go to sleep i have trouble falling asleep. I hear ringing noises in my ears and it seems like my eyes do not want to stay closed, but yet my body is so tired. I wish i felt better. I am so sick of telling people I have cfs and them saying oh me too. I am so tired of hearing this. Why dont they understand? e-mail me if you have any suggestions on what I can take for vitimans or any thing that might help me. thanks cheryl

04/13/00 01:51:58

Name: cheryl colarusso	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes	What treatments have helped?: have not started to treat yet	What treatments didn't help?: zoloft
How many years have you had CFS/FM?: 1 year	Where are you from? City/State/Country: woburn,ma

Comments:
It is nice to be able to read something and know that somebody out there understands.

04/12/00 05:45:32

Name: Susan I White	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs	What treatments have helped?: B12 shots	How many years have you had CFS/FM?: 4 years
What topics would you like to see on this site?: most effective treatments	Where are you from? City/State/Country: Mapleton, Utah, Usa

Comments:
Besides treatments, I would really like to here other cfs patients stories, how they found out they had it, how they are surviving it, how much normalicy are they able to keep in their dailey routine, etc.

04/03/00 13:45:44

Name: joan	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Prozac--better than nothing	What treatments didn't help?: paxil, ginkgo, nadh, vitamins
What topics would you like to see on this site?: doctors, DO's who are interested in looking beyond	Where are you from? City/State/Country: Westchester County, NY

Comments:
Would like to know where to go for a complete medical work up for CFS and to look deeper. Also, would like to find an Osteopathic Doctor in the metropolitan area familiar with CFS. Aren't there Osteopathic Doctors on Long island who are very familiar with this??? PS. Have also been informed that there is no cure. Please help. Thanks and feel better yourself. Joan

03/26/00 05:24:38

Name: Desmond Connolly	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: vitaminC,B12,sleep pill	What treatments didn't help?: anti depressants
How many years have you had CFS/FM?: since 1994	What topics would you like to see on this site?: more research history	Where are you from? City/State/Country: Yonkers N Y

Comments:
Great site. I have this disease for several years.It was very difficult to find out what was wrong and quite a relief to be diagnosed. The hardest thing is helping my family and friends understand how sick I am. I recommend Dr. Susan Levine at 889 Lexingt n Ave. NYC. She is very familiar with this ailment.

03/23/00 01:54:38

Name: Cynthia Besade	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes CFS & FM	What treatments have helped?: none	What treatments didn't help?: several
How many years have you had CFS/FM?: 20	What topics would you like to see on this site?: dr. referals/treatments	Where are you from? City/State/Country: Uncasville CT

Comments:
You have a great site for accurate information. I would like to know if you provide a listing of informed treaters in your organization. If so please contact me, as I am currently seeking someone to help. Thanks for all your efforts.

03/14/00 03:32:11

Name: Heather	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: My doctor told me it's in my head. There has been no treatment.	How many years have you had CFS/FM?: Since the end of 1997
Where are you from? City/State/Country: Medford, NY, USA

Comments:
My name is Heather and I just turned 20. I've been dealing with CFS for about 3-4 years now. I noticed in the first year that I went from being a very active morning person to not being able to get up. Because of this I lost my job when I was 17 and I c uld hardly make it to school. In my senior year I went from getting very good grades to almost not graduating due to absensses. I was put on home teaching, I lost contact with all my friends. I'm 20, my birhday just passed, I can't go to college because I'm so tired(trust me i tried)and I have no job due to this. At first I thought it was depression but I can assure anyone its not. My parents have to pay the large monthly payment for my medical coverage because I'm not in school and to old to be covered I feel as if life is passing me by and I'm just to tired to jump in. I have found an osteopath, so this is my next path. Any info is greatly appreciated.

03/13/00 20:08:44

Name: Kristina Gale	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: none so far	What treatments didn't help?: all I have tried.
How many years have you had CFS/FM?: 10 years	What topics would you like to see on this site?: Where to find doctors that are understanding and capable	Where are you from? City/State/Country: Sag Harbor/New York

Comments:
I have been disabled on and off for the past ten years with this horrible illness. I have had several months here and there of almost feeling well again , only to slip back to being bedridden. I would appreciate any information or help anyone can offer. A so, I would love to speak with anyone that is going through a similar situation.

03/13/00 15:03:09

Name: Ronee D'Amico	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: I think so. Can't find a doctor who believes in it to diagnose it.	What treatments have helped?: na	What treatments didn't help?: na
How many years have you had CFS/FM?: aboout 1 and 1/2	What topics would you like to see on this site?: doctors	Where are you from? City/State/Country: Forest Hills, New York, USA

Comments:
I need help in finding a rheumatologist who knows of the disease and believes it is a reality.

02/15/00 23:59:52

Name: ~*~ Michelle :) ~*~	My Email: Email Me	Do you have CFS and/or FM?: CFS and FMS :(
What treatments have helped?: nothing so far....still working on it	What treatments didn't help?: just about everything i've tried	How many years have you had CFS/FM?: about 2
What topics would you like to see on this site?: A support group for teens with CFS or FMS	Where are you from? City/State/Country: Linden, NJ

Comments:
Hey everyone! This is a great site...and I can't wait to do more research on these horrible conditions. I am only 16 years old, and I have been trying to cope with pain and fatigue for the past 2 years of my life. It started when I could not get over a series of i lnesses that started with the flu, progressed to mono, and ended with the diagnosis of CFS and then FMS. I never really took the time out of my sleepy teenage life to look at any sites dealing with CFS or FMS. I am only starting now because my two best riends and I are doing a project on FMS/CFS for my Anatomy and Physiology class. I hope that I will be able to gain some great info from this site, and others. I'm glad that support groups such as this one exist, and that there are other people out ther like me who suffer on a daily basis. My family and all of my friends have been very supportive throughout this whole ordeal, and I hope that they will also gain more knowledge about CFS and FMS. I hope you guys all keep up the good work, and continue t get all the sleep you can. I know how hard it is to juggle 50 million different things at the same time. I am very involved in my school, and try my best to not let my illness get the best of me. Stay positive in everything you do, because even if you feel achy or tired, your best reward in life will be the knowlege that you tried and gave it your best shot, even if you suffered through it. I'll let you know how my project turns out, and how I'm doing. Right now, I go to physical therapy twice a week and take 2 different kinds of medicine to help with the pain and my sleep cycle. I hope that they will work, and if not, I hope that some new advancements are made in order to help people like you and me cope with our pain and fatigue. Bye! :)

02/09/00 22:43:59

Name: Heather Luna	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs	What treatments have helped?: none	What treatments didn't help?: rest, simplification diet
How many years have you had CFS/FM?: 9 months	What topics would you like to see on this site?: all treatments	Where are you from? City/State/Country: NYC

Comments:

01/16/00 02:57:54

Name: Margaret Rall	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: chiropractic, accupuncture, massage, herbal prescriptions	What treatments didn't help?: gensing, in increasing doses, didn't do much for me, then it put a health imbalance again and I had to discontinue it.
How many years have you had CFS/FM?: 2+ years (probably up to 5 - I went through a period of double vision and exhaustion in '93 and was medically dismissed from my job. I haven't worked since) ( I sleep 10-12+ hrs/day)	What topics would you like to see on this site?: NEED INCOME!	Where are you from? City/State/Country: Palos Verdes(Los Angeles), CA USA

Comments:
It was only a few months ago that I realized I had most of the symptoms of CFS. In '83 I was in a major auto accident (severe whiplash). In '88 I began a very rocky and unhappy marriage, but I was "tough and determined" to make it work. In '90 I took a ecretarial job at a brand-new university, a job that became more and more stressful (I started at the ground floor as a clerical assistant to the vice president's aide, and followed her up the ranks until she got to be Foundation Director, and I was her S cretary and accounting expert and office manager, and she was not a nice lady to work for, and I didn't like the position in which I ended up- all this in 3 years). My body finally gave way under the stresses at home and at work. My husband was starting new home business and leaned on my office skills quite heavily (he would say "just another year, dear, and you can quit your job" HA!) I really was the wiz kid at work and at home, trying to do everything and please everybody. But I was experiencing in reasing double vision and exhaustion until I went into work one Monday and I just couldn't focus. Personnel sent me home and I haven't been able to work since. I went though vision training and got some of my vision back. I am now living with my parents (I'm 37) and going through divorce. I have a very good holistic doctor who is really working with me. I still wish I didn't have to sleep so much! I'm sick and tired of being sick and tired. I have so many exciting plans for my life, but my body const ntly protests. I have some savings, but getting me well is so expensive. (no health insurance except catastrophic.) My basic nature is bubbly and happy. This illness sure is a challenge. When people ask how i am, what can I tell them? I'm tired of te ling them all my complaints, so I generally keep them to myself. I am an artist and have been keeping my focus on new creations (oil painting). It gives me reason to get up in the morning. My symptoms started out as adrenal exhaustion, very poor digest on, acute general anxiety, sore throats, chronic swollen lymp nodes, always sore and achy all over, blurry-brained (I used to be SO sharp!), when I would get an ailment I would get a fever for a week, frequent chancre sores in my mouth, some very big, nev r could get enough sleep; now, since I've been under the care of my doctor, the lymph nodes are down, my fever blisters are more infrequent, I still am battling the sore, knotty muscles but it is much improved now with Evening Primrose Oil and another her al supplement I take at night to battle the inflamation another way and has sleep-aid herbs in it. My digestion is improved but still poor. I'm recovering a little quicker from physically taxing activities like shopping. I can't do activities 2 days in a row. I have to sleep in between. The biggest improvement is I don't feel as "sick", just exhausted. I found that the amino acid Tyrosine, 1000mg/day, seems to take care of the anxiety and gives me some peace. I have lots of hope!!

01/15/00 23:46:37

Name: Dick Bohnet	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs	What treatments have helped?: Rest	What treatments didn't help?: all sorts of medications
How many years have you had CFS/FM?: 3 Years	Where are you from? City/State/Country: Brisbane Queensland Australia

Comments:
Thanks for all the info.It helps me to understand whats wrong with me Dick

01/14/00 20:24:58

Name: Conrad	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Daughter has CFS	What treatments have helped?: Vitamins, herbs, diet, & rest	What treatments didn't help?: antibiotics made it worse
How many years have you had CFS/FM?: since 1998	What topics would you like to see on this site?: List of physicians and attorneys	Where are you from? City/State/Country: Commack, LI, NY

Comments:
Thank God for your site! Although doctors are becoming more familiar with disease, I have yet to see any reference to attorneys who have knowledge of this disease and its ramifications. Many sufferers need legal help and expertise in handling disability claims and other work-related problems.

01/14/00 14:49:29

Name: Jyoti Hansa	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFIDS w/touch of FM	What treatments have helped?: one drop Prozac daily for FM and excellent diet and tons of rest and saying "no" for CFIDS	What treatments didn't help?: Predisone
How many years have you had CFS/FM?: 12	What topics would you like to see on this site?: Elimination Diet	Where are you from? City/State/Country: Vermont, USA

Comments:
EXCELLENT link site. Thank you. Jyoti

01/13/00 05:06:31

Name: sandy and melissa	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Both have Both	What treatments have helped?: medical	What treatments didn't help?: medical
How many years have you had CFS/FM?: 20+/ 7 yrs	What topics would you like to see on this site?: Good Books/Religion	Where are you from? City/State/Country: Kokomo, IN USA

Comments:
My sister has this illness over 20+ years, my daughter (above 7 yrs.) Myself 20+ yrs. I have friends from neighborhood that also have it. With GOD we can get through anything. Appreciate email support groups, information ect.

01/07/00 01:00:28

Name: Ed McGarr	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs	What treatments have helped?: Transer Factors and Fibro-AMJ	What treatments didn't help?: anti-inflamatories
Where are you from? City/State/Country: Oakdale

Comments:
Dr. Joe Elrod has a great book out called "Reversing Fibromyalgia" his nine step process is all natural and is very effective. Try it out! He has it on the above web site under medical advisor.

01/05/00 04:57:17

Name: MARIE	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: GINKO, TYLENOL, GH3, GLUCOSOMINE	What treatments didn't help?: ASPRIN, ANTI-INFLAMMATORIES
Where are you from? City/State/Country: NO.BABYLON, NY USA

Comments:
A list of Medical Doctors who recognize and treat these diseases in our local area.

01/05/00 04:38:01

Name: MARIE J GABRUS	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: GINKO, TYLENOL, GH3	What treatments didn't help?: ASPERIN, ANTI-INFLAMMATORIES
Where are you from? City/State/Country: NO.BABYLON, NY USA

Comments:

12/16/99 18:59:41

Name: Jessi Boicelli	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: no (grandmother does)	What treatments have helped?: ??	What treatments didn't help?: ??
How many years have you had CFS/FM?: none	Where are you from? City/State/Country: Dixon, CA

Comments:

12/15/99 20:19:27

Name: PJ Merritt	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: regular sleep sched, healthy diet, Prozac, although progress was slow	What treatments didn't help?: antidepressants, ridicule by my physician, threats from my employer
How many years have you had CFS/FM?: since about 1988	What topics would you like to see on this site?: Evidence of new research instead of rehashing what we already know	Where are you from? City/State/Country: Kansas City area, USA

Comments:
I was grateful to find this site. I sure wish this kind of support was available when I was at my sickest. Or that disability had been available from Social Security like it is now. I would love to email someone about some symptoms I don't see on this site. I can tell when I will have a relapse of the joint pain and fatigue, because the skin of my palms develop small itchy red places. This is followed by the skin of my palms peelin off. A couple of days later, I'm hurting, and barely able to drag myself out of bed to work. It's not nearly as bad as when I was 1st sick of course, but something I still recognize. Does anyone else have similar symptoms? Also, I have unexplained infertility. Everything works, I'm just not conceiving after several years. Has anyone heard of a link to CFS? Take care, PJ

12/14/99 20:37:30

Name: janet greene	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs	What treatments have helped?: excersize, vitamins	How many years have you had CFS/FM?: about 4
What topics would you like to see on this site?: what exactly causes it--depression or what?	Where are you from? City/State/Country: bay shore NY, now living in North carolina

Comments:
I dont think people realize how painful this can be to have . I would like to see it advertised more so people who either have it or know somewone who does have it can understad it better. Because it is considered i fairly "new" disease, people dont know too much about it!

12/09/99 17:45:55

Name: Zarena Ali	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes	What treatments have helped?: Berocca Plus	What treatments didn't help?: Stress Producing
How many years have you had CFS/FM?: 5 years	What topics would you like to see on this site?: research findings(current)	Where are you from? City/State/Country: Long Beach, New York. U.S.A.

Comments:
I am very impressed with the amount of information. I was very scared and did not read about the syndtrome, now, I am well enough and ready to absorb the information. This site has helped a lot. I am currently preparing a documented paper on CFIDS. I ill appreciate if someone can be of some help to me. Thanks. Yours truly, Zarena Ali

11/25/99 04:50:24

Name: Donna Montez	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: Massage/Hot tub for short temporary relief/Elavil/ Rest periods durring theday	What treatments didn't help?: Nsiads/ Physical therapy/
How many years have you had CFS/FM?: 19 but diagnosed in 1996	Where are you from? City/State/Country: Southampton, Long Island, New York, USA

Comments:
For many years now I have been suffering with Fibromyalgia, some years I dont know how im going to survive through it, through prayers and faith I manage to make it through. There are some months I go in remission and am so grateful for those times. The ardest part of this disease is never knowing (being a single parent) if you will be able to continue to work and be able to support yourself and family. I have applied and reapplied for social security disablity and have been continously turned down, sta ing I'm not disabled enough. Being a survivor I have changed jobs in the same job field over the past 19 years in order to maintain employment. I pray that a cure will come soon so that I and people like myself may be able to live more productive lives an that we wont have to worry about what financial disaster will happen next due to Fibromyalgia.

11/20/99 18:56:58

Name: Lilly Cooper	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Both	What treatments have helped?: CoQ10, NADH, glucosamine HCl	What treatments didn't help?: cognitive therapy, acupuncture
How many years have you had CFS/FM?: 17; 10 of total disability	What topics would you like to see on this site?: Where to find material/financial help. Which states have the best benefits. Oklahoma does not provide vision care, dental care or prescription coverage. Nebraska does all 3.	Where are you from? City/State/Country: Park Hill OK USA

Comments:
Loved your articles. I have printed off some of them to send to the acupuncturist I had this conversation with: Him: Why can you only afford one treatment? (After I had already told him of my disability/cfids.) Me: Because I can't work. Him: Bullshit!

11/15/99 14:48:12

Name: Thea Ray	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs/fibro	What treatments have helped?: none so far...help	What treatments didn't help?: gamma globulin,valtrex
How many years have you had CFS/FM?: one, maybe five yrs	Where are you from? City/State/Country: Milwaukee,WI.,USA

Comments:
I'm newly diagagnosed with this. My family is not understanding, It's a daily battle. I've never in 42 yrs felt so bad. I don't know what to do. I've on;y had my Dr. for several months, so he is new to me. He hasn't tried very much as far as I'm concerned. What he has tried has'nt worked so far. For some reason I do have faith in him though. Today I will find out what his next step is. I'm very nterested in more information. I'm also new to the computer. It's hard to find sits on this, for me. But I am learning. Would appreciate any help. Thanks. Thea Ray.

10/24/99 20:16:29

Name: Karen Cain	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Florinef mostly, doxepin	What treatments didn't help?: Kutapressin, magnesium
How many years have you had CFS/FM?: almost 9	What topics would you like to see on this site?: research, coping advice	Where are you from? City/State/Country: Syracuse, NY, USA

Comments:

10/18/99 12:27:12

Name: Chelseaglenn Macmillan	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM/CFS	What treatments have helped?: lol...none really	What treatments didn't help?: all mostly
Where are you from? City/State/Country: maine

Comments:
Hi...I enjoyed your site...nice to see so many doctors are trying to prove that FM/CFS is NOT in our heads. People like me know already that it's real and must have a real cause. I was glad to see that there was a mention about vaccinations making your sy ptoms worse. I have always stated and still maintain that I was not sick in anyway untill I recieved my hep. b vaccination. Sometimes I think that while a cure would be great, just recognition that my illness is real would be almost as good. I've had this condition for four years now...Yuck!! And I'm tired of hearing that it's probably psycological in nature..IT'S NOT!! I sometimes think that the best incentive for doctors and researchers to find a cause and proper treatment would be to crawl inside my bod and live in my world of pain for just one day...I don't think that they would be able to get out of bed much less do the things that I do. Pain is a relative thing, you grow used to it, and learn to live with it. I may do more now, but it doesn't mean I eel better. Peace, Love and Happiness, Chelseaglenn

10/13/99 13:38:18

Name: Charmaine	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: moderate exercise, vitamin B12, massage and rest.	What treatments didn't help?: pain meds, herbals, antidepressants
How many years have you had CFS/FM?: 11	Where are you from? City/State/Country: Nova Scotia, Canada

Comments:
This is a marvelous site. I found this site through the Excite search, but with a small bit of difficulty, as it is listed as being at "geocities.net". At first I was getting a "not found" message, but when I noticed the mistake in the URL I just changed net" to "com" and here I am ! :-)

10/04/99 11:40:07

Name: Willekens Godelieve	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: NONE	How many years have you had CFS/FM?: 24 years
Where are you from? City/State/Country: Belgium

Comments:

10/02/99 03:45:17

Name: Karen Welsh	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: CFS
How many years have you had CFS/FM?: since 1/99	Where are you from? City/State/Country: ny, ny, usa

Comments:
I'm trying to find out if there are any local support groups in Manhattan, New York City. Specifically, am looking for doctors who treat this. Thank you.

09/28/99 22:20:57

Name: thaedra aiyana	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: Yes
How many years have you had CFS/FM?: 7 years	Where are you from? City/State/Country: san francisco CA USA

Comments:

09/20/99 21:24:33

My URL: Visit Me

Comments:

09/05/99 00:14:55

Name: Maura Roxby	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: cfs
What treatments have helped?: i.v therapy	Where are you from? City/State/Country: davie,

Comments:

09/04/99 00:29:51

Name: Maryann Triola	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Yes	What treatments have helped?: flexeril, zoloft	How many years have you had CFS/FM?: 7 years
Where are you from? City/State/Country: Blakeslee, PA

Comments:
Just wanted to tell you what a great job you did on the website! I formerly attended the meetings there until I moved to PA in Sept '97. I am still in contact with Ellen Lockwood and she told me of the site. My best to everyone and a special hello to Jim. Good job!!!

08/13/99 00:16:59

Name: Paulina Murray-Lee	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	How many years have you had CFS/FM?: 5 years	What topics would you like to see on this site?: Lectures Scheduled & Resources (Books, Articles etc)
Where are you from? City/State/Country: Brooklyn, New York

Comments:

08/12/99 04:18:18

Name: Roanna Roberts	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Possibly	What treatments have helped?: Nothing yet	What treatments didn't help?: Vitamin therapy
How many years have you had CFS/FM?: 15 years	What topics would you like to see on this site?: Physicians accepting Medicaid	Where are you from? City/State/Country: Westbury, NY

Comments:
I'm not sure if I have CFS, but I have been exhausted for the past 15 years. I am now receiving disability for depression (my depression is caused by my debilitating fatigue). I also receive Medicaid and I haven't been able to find anyone who treats CFS and accepts Medicaid. Help!

08/03/99 20:11:01

Name: Jane Koch-Kirshenbaum	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: NO
What topics would you like to see on this site?: Support group sites	Where are you from? City/State/Country: Sunnyside/NY/USA

Comments:
My husband has been home from work with CFIDS since March 96 and needs support from fellow sufferers. I need support from spouses of sufferers. A listing of support groups for CFIDS with addresses and phone numbers would be helpful

08/03/99 20:10:41

Name: Jane Koch-Kirshenbaum	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: NO
What topics would you like to see on this site?: Support group sites	Where are you from? City/State/Country: Sunnyside/NY/USA

Comments:
My husband has been home from work with CFIDS since March 96 and needs support from fellow sufferers. I need support from spouses of sufferers. A listing of support groups for CFIDS with addresses and phone numbers would be helpful

08/01/99 15:45:00

Name: pat issberner	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes	What treatments have helped?: none	What treatments didn't help?: all
How many years have you had CFS/FM?: one	What topics would you like to see on this site?: listing of doctors	Where are you from? City/State/Country: sayville, ny

Comments:
I would like to see a listing of doctors in my area that specialize in this disease

07/28/99 01:22:10

Name: melody	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: muscle relaxors, pain pills,	What treatments didn't help?: vitamins, massage only good for a few min, but will stop some of the head pain
How many years have you had CFS/FM?: 1+	What topics would you like to see on this site?: meds, how to cope as women with our men,	Where are you from? City/State/Country: 29 palms, ca/San BERNARDINO

Comments:
this is a very informative site. i saved in my favs and will be returning probly daily. Thanks

07/22/99 23:11:18

Name: Scott Harlow	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Wellbutrin, Deseryl	What treatments didn't help?: Amitryptaline, Prozac
How many years have you had CFS/FM?: 2.5+	What topics would you like to see on this site?: New treatments, research updates, local support groups	Where are you from? City/State/Country: Anchorage, Alaska, USA

Comments:
I first became ill with CFS in January 1997, after a serious bout with a cold or flu virus. At least, that's when CFS knocked me down hard enough to keep me down. I had been struggling with what I now believe to be early-stage CFS for 2-3 years prior. But this time I couldn't get out of bed, let alone look for work. After several months of this, I was evicted from my apartment for non-payment of rent. I had no access to private healthcare, and a nurse practitioner at the Veterans Affairs Clinic basically t ld me I needed to see a psychiatrist, not a doctor. Finally, I had what I thought was a heart attack and took an ambulance to the hospital. There, the cardiologist on call, after numerous tests, said there was no evidence of heart attack and I had probabl had some kind of stress-related seizure. But this episode finally earned a referral from the cardiologist to a VA internist, fortunately a pretty good one. Now I am in a residential treatment program for homeless veterans, where I am now getting the trea ment I needed and more. Now all I need is a more effective treatment for my CFS (antidepressants and NSAID painkillers can only do so much. I will continue to monitor your and other websites, for which I am very grateful. Thank you!

07/14/99 19:53:44

Name: Lori	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM	What treatments have helped?: Pain management....when the doctors allow it....	What treatments didn't help?: PT,Triggerpoint injections, accupunture, antidepressants
Where are you from? City/State/Country: Lake Geneva, WI...usa

Comments:
have tried a number of treatments and am still looking for the best one. The only thing the anti depressants have done for me is help me deal with the day to day pain...it has not taken any of the pain away.

07/13/99 14:32:20

Name: George M.	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Fibromyalgia	What treatments have helped?: None as of yet. Still Looking.	What treatments didn't help?: Anti Depressants.
How many years have you had CFS/FM?: At least 6. Diagnoxed for 2.	What topics would you like to see on this site?: Support groups. Men and Fibro. Disability Issues.	Where are you from? City/State/Country: Rocky Point, Long ISland, New York

Comments:
I am a 37 year old male with Fibromyalgia. It has progressed to the point where I feel unable to continue working but am not able to stop due to finacial issues. It amazes me that many people do no t believe that we have this syndrome when most of us ca not even get through one day with out pain or fatigue. Right now my most pressing problem's are fatigue and non-restorative sleep. I sleep only about 1-2 hrs a night but also "cat nap" a lot in 1/2 to one hour slots. This make sit very hard to get thro gh the day. I have had a really bad problem getting a doctor on Long Island who is willing, or able to treat Fibromyalgia correctly. If any one has a suggestion for a Doctor or would jsut liek to talk , please feel free to email me with "Fibromyalgia" in the subject line. ( Iget lots of junk email and usually delete it with out readign it) Thank you for readign all of this !!!!

06/24/99 00:51:37

Name: RENEE' NOTARNICOLA/MATTSON	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: FM & MS	What treatments have helped?: HERBS	How many years have you had CFS/FM?: AROUND 1991
Where are you from? City/State/Country: E.ISLIP,NEW YORK USA

Comments:

06/24/99 00:50:07

Name: RENEE' NOTARNICOLA/MATTSON	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: FM & MS

Comments:

06/17/99 12:41:46

Name: Karen Anderson	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Rest, positive attitude/something to look forward to, diet change, vitamin c and b12 injections, vitamin e	What treatments didn't help?: Chiropractic manipulation! , non-believing physicians in the early days.
How many years have you had CFS/FM?: 9 years	What topics would you like to see on this site?: Continued updates of possible causes, more about peoples own experiences	Where are you from? City/State/Country: Tarragindi, Brisbane, Queensland, AUSTRALIA

Comments:
I am drifting back into a low period after a number of years of reasonable health. In fact, this should provide hope to some of you because I wnet from a year of bed ridden ( on and off) with major symptoms, to quite reasonable health. I have a 9 month old child and have just been through a period of stress so I am not surprised to see the down side again. Here we go!

06/11/99 20:50:03

Name: Victoria Granados	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Not many. It seems that just rest seems to help me more than anything.	What treatments didn't help?: anti-depressants
How many years have you had CFS/FM?: 5 years	What topics would you like to see on this site?: I like to look into all topics about CFS	Where are you from? City/State/Country: Kew Gardens, NY, USA

Comments:
I've been trying to find sites and info that can help me get through this flare-up of CFS. I've had CFS on and off for five years. It's very frustrating that nothing can be done about this disease. It's practically ruining my life. I've been on disabi ity on and off for the same five years (everytime it flares up). I don't want to lose my job over this, so I'm willing to try anything new that might help.

05/20/99 00:06:06

Name: John Sherwin	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: none to date	What treatments didn't help?: Anti depressants
How many years have you had CFS/FM?: Over 10 yrs	What topics would you like to see on this site?: Doctors who actually treat CFS	Where are you from? City/State/Country: Mount Laurel NJ

Comments:
I am 53 years of age, and in could possibly loose my job, due to this problem/. I have been able to keep it in some remission 5-6 years ago, but have gotten worse as I get older. The problem I have is that no one believes me. Antibiotics help for a while, but then when stopped I regress. Would like someone to recommend a Doctor that actually gives a darn and has some type of therapy for this problem. Would welcome any suggestions, being that I grew up in N. Babylon and lived most of my life on Long Island. Thanks

05/06/99 06:01:34

Name: Kris Carl Ericsen	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yup	What treatments have helped?: hard to tell	What treatments didn't help?: to many to list
How many years have you had CFS/FM?: 10-15	Where are you from? City/State/Country: Anchorage AK

Comments:
Looking for doctors who treat CFIDS successfully.

05/04/99 20:42:22

Name: JACKIE MAURO	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: FM
Where are you from? City/State/Country: VALLEY STREAM,NY,USA

Comments:
MAKE SUGGESTIONS FOR TREATMENT PLAN. THANKS

05/03/99 17:09:05

Name: Ching-Chee Chan, Ph.D.	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: no
Where are you from? City/State/Country: Mississauga, Ontario, Canada

Comments:
I wrote an article "A Probable Solution" but it is too long for me to put it here. You can read it by clicking the link. For further information, please click http://webhome.idirect.com/~egretinc/index.html

04/16/99 20:30:27

Name: John	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Diagnosed FM (I think both)	What treatments have helped?: None so far	What treatments didn't help?: Too many to list
How many years have you had CFS/FM?: Several I think - diagnosed recently	What topics would you like to see on this site?: Support & updates	Where are you from? City/State/Country: Metropolis, Illinois

Comments:
I have just started a 2 month leave from work and hoping that it will give therapy, rest and medication time to help. I am also looking for a local support group, as I can see it is going to be important sharing ideas and keeping informed on how to handle this problem. Glad I found you!

04/16/99 04:32:02

Name: mary jane sylvanus	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: fm	What treatments have helped?: none	What treatments didn't help?: haven't tried any
How many years have you had CFS/FM?: my guess is three	What topics would you like to see on this site?: support groups	Where are you from? City/State/Country: west islip,ny

Comments:
md wants to put me on meds and I want to avoid these. need to find out about long term effects and more general info. I work in a hospital and most doc's think it's a real problem...

04/16/99 04:24:15

Name: mary jane sylvanus	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: trying to find out
How many years have you had CFS/FM?: unknown	Where are you from? City/State/Country: west islip, new york

Comments:
I seem to have symptoms and need help in finding out more....

04/15/99 20:58:01

Name: Andy	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Clinical Pyschologist Therapy	What treatments didn't help?: Homeopathy & Fitness programme
What topics would you like to see on this site?: A forum (eg chat) for CFS sufferers	Where are you from? City/State/Country: Southampton, England

Comments:
Please email?

03/28/99 16:45:32

Name: Michel Lee Naekel, CFP, ChFC	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Mostly supplements including, 120mg of Co-enzyme Q, multi vitamin, lots of sleep and occasional daily naps, Having NO STRESS	What treatments didn't help?: Exercise seems to make it worse, b-12 shots, trying to reduce my work load, that jut causes more stress
How many years have you had CFS/FM?: I don't know, I have been sick for 4 years now, originally diagnosed with Lyme disease	What topics would you like to see on this site?: Issues with disabiliy companies and their denial	Where are you from? City/State/Country: Holtsville, New York, USA

Comments:
None

03/28/99 16:44:38

Name: Michel Lee Naekel, CFP, ChFC	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Mostly supplements including, 120mg of Co-enzyme Q, multi vitamin, lots of sleep and occasional daily naps, Having NO STRESS	What treatments didn't help?: Exercise seems to make it worse, b-12 shots, trying to reduce my work load, that jut causes more stress
How many years have you had CFS/FM?: I don't know, I have been sick for 4 years now, originally diagnosed with Lyme disease	What topics would you like to see on this site?: Issues with disabiliy companies and their denial	Where are you from? City/State/Country: Holtsville, New York, USA

Comments:
None

03/23/99 18:00:41

Name: Heather Resvick	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: salt/water (electrolyte balance)	What treatments didn't help?: Dr. J Goldstein drug protocal
How many years have you had CFS/FM?: 15 years	What topics would you like to see on this site?: latest research/treatments	Where are you from? City/State/Country: London, ON, Canada

Comments:
I have spent much of the last 15 yrs fighting to be heard and have my illness treated. I now have 2 wonderful physicians ( a GP and a CFS specialist). I am continually trying as time allows to research and keep myself informed of all the latest developm nts. Thus having this information handy on one site would make my life just that much easier. Thank-you Heather

03/17/99 13:06:53

Name: Richard mcMahon	My URL: Visit Me
My Email: Email Me	Do you have CFS and/or FM?: no,but a dear friend does
What topics would you like to see on this site?: List of L.I. Physicians that recognize/treat CFS	Where are you from? City/State/Country: Westchester County N.Y.

Comments:
Although I donot have CFS myself, a good friend living on Long Island (Amityville)does and is in dire need of a physician to treat her. Given the fact that so many medical practitioners do not recognize/accept CFS, I am surprised that CFS websites such as yours do not provide a list of MD's that do treat this illness. (A posted disclaimer would absolve the organ zation of any potential liability)

03/05/99 16:13:57

Name: L.chevez	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: I have FMS and CFS	What treatments have helped?: massage therapy helps me out with the pain but only for some time and nothing else seems to help.	What treatments didn't help?: paxil
How many years have you had CFS/FM?: cfs for 3yrs,3months and FMS 2yrs and 7 months	What topics would you like to see on this site?: treatments for pain in fms	Where are you from? City/State/Country: Buffalo, N.Y

Comments:
I just want to tell other patients with FMS or CFS not to give up their hope that one day a cause and cure will be found. you're not alone.

03/03/99 22:17:40

Name: Joanne Mallett	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: fm	What treatments have helped?: flexeril	What treatments didn't help?: amitriptalene
What topics would you like to see on this site?: thaings that help	Where are you from? City/State/Country: Lee,ME usa

Comments:

03/01/99 05:25:33

Name: g.stewart	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: c.f.s.	What treatments have helped?: none	What treatments didn't help?: as above
How many years have you had CFS/FM?: five(5)	Where are you from? City/State/Country: australia

Comments:

02/25/99 15:15:56

Name: Amy Rigg	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: I have CFS	What treatments have helped?: Diet, herbs	What treatments didn't help?: paxil
What topics would you like to see on this site?: updated info	Where are you from? City/State/Country: Hillsboro, Ohio, USA

Comments:
Thank you for this information! I now know that I'm not alone, or crazy.

02/09/99 11:48:39

Name: SAM HEWITT	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: NONE-WELL	What treatments didn't help?: EXCERCISE
What topics would you like to see on this site?: TREATMENTS	Where are you from? City/State/Country: COVENTRY

Comments:
IT IS ACTUALLY MY MUM WHO HAS THE DISORDER AND ID LIKE HELP, SO I KNOW WHAT TO EXPECT AND HOW TO HELP HER.

02/07/99 21:47:27

Name: robert freville	My URL: Visit Me
Do you have CFS and/or FM?: yes.	What treatments have helped?: Lotsa rest.
What topics would you like to see on this site?: treatments that work for fibromyalgia and cfs	Where are you from? City/State/Country: Lindenhurst, N.Y.

Comments:
I have gotten the run around from doctors for years. Many dismissing my case as hypochondria, etc. I just need help. My plan is Vytra.

02/06/99 06:05:04

Name: Anne-Marie L. Clanton	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes to both	What treatments have helped?: malic acid/magnesium supps, echinacea, EPA/DHA supps	What treatments didn't help?: most antidepressants, NSAIDS
How many years have you had CFS/FM?: FM all my life, CFS about 20 years	What topics would you like to see on this site?: More alternative and complementary medicine approaches	Where are you from? City/State/Country: Long Island NY

Comments:
This is an excellent site, and one that I have bookmarked. I plan to come back very often to see what else you have in store for us. Keep up the good work!

01/30/99 18:23:30

Name: patty pfeiffer	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: cfs/nmh	What treatments have helped?: florinef	What treatments didn't help?: anti-depressents
What topics would you like to see on this site?: coping techniques, medical updates	Where are you from? City/State/Country: northfield, mn, usa

Comments:

01/20/99 19:25:20

Name: Barbara Diehl	My URL: Visit Me	Do you have CFS and/or FM?: CFS
What treatments have helped?: Tebetian medicine	What treatments didn't help?: acyclovir infusion	What topics would you like to see on this site?: addresses of MD's
Where are you from? City/State/Country: Freising/Germany

Comments:

01/19/99 21:49:50

Name: Jo Needham	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Prothiadine	What treatments didn't help?: Prothiadine
What topics would you like to see on this site?: natural remedies	Where are you from? City/State/Country: Jimboomba, Queensland, Australia

Comments:
Prothiadine definitely helped the pain but I didn't like the side effects.

01/16/99 19:13:05

Name: Kari Fisher	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: CFS	What treatments have helped?: Antidepressants	What treatments didn't help?: Rest
How many years have you had CFS/FM?: Less than a Year	What topics would you like to see on this site?: Sport training	Where are you from? City/State/Country: Newtown CT.

Comments:
I am a competive swimmer and am having trouble training. I think I am doing good at practice,(feeling well not to tired) but then when I compete in a swim meet I have no engery and my times are way off. Is there anything about training programs or how to now you are training to hard. The Dr. respose isstop swimming or slow down, but how.

01/11/99 17:20:57

Name: Kaytie Kilcawley	My URL: Visit Me
My Email: Email Me	What topics would you like to see on this site?: Symptoms
Where are you from? City/State/Country: pinckney M.I.

Comments:
Thank you for having a web sight on this!!

12/10/98 15:47:00

Name: Shay	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: both	What treatments have helped?: none	What treatments didn't help?: zoloft
How many years have you had CFS/FM?: not sure I've been sick for 2.5 yrs now	What topics would you like to see on this site?: how people with this disorder is surviving financially	Where are you from? City/State/Country: Pa

Comments:

12/03/98 00:12:35

Name: Elizabeth Atherton	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: both	What treatments have helped?: n/a	What treatments didn't help?: n/a
How many years have you had CFS/FM?: 6 months	What topics would you like to see on this site?: treatments	Where are you from? City/State/Country: savannah,ga. usa

Comments:

12/02/98 17:25:58

Name: Marcia Walker	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: yes, cfs	What treatments have helped?: none so far	What treatments didn't help?: liver detox etc.
How many years have you had CFS/FM?: 13 years in Feb.	What topics would you like to see on this site?: alternative treat.	Where are you from? City/State/Country: palo alto, CA.USA

Comments:

11/18/98 01:08:25

Name: Sylvia Bauguess	My URL: Visit Me	My Email: Email Me
Do you have CFS and/or FM?: Both	What treatments have helped?: vitamins and herbs	What treat