# What is M.E.?



## Feisty (Aug 14, 2000)

Hi Susan,I know you've explained this one before---but this brain of my is fried these days and I can't remember what the difference is between M.E. and Fibro. Could you explain it again.Thanks!Karen


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## Susan Purry (Nov 6, 2001)

M.E is the term often used in Britain instead of Chronic Fatigue Syndrome. It stands for Myalgic Encephalomyopathy. It describes a distinct illness. Using the term can avoid the confusion between Chronic Fatigue Syndrome and chronic fatigue, particularly in research. There is some discussion in the USA about using the term M.E as an alternative to 'CFS' which some people think belittles the illness and experience of patients with the illness (it's more than chronic fatigue). Is that enough info Feisty, or shall I post something about what the symptoms of M.E/CFS are, what sort of illness it is, and how it is different to Fibromyalgia?


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## Feisty (Aug 14, 2000)

Thanks, Susan!I knew it was something like that, but wasn't sure.I wish they would change it, too, to avoid more confusion and "stigma". I'm not sure if I have it or not. The Doc I have now says it's Fibro and depression from all the stress is my life. Well, who doesn't have stress??!!! And that's exactly what I said to him. But, I'm so very tired all the time, but I've gained weight, etc., and then with the small bowel obstruction in May, it has been slower recovering than I had thought. Even though I felt pretty good at 8 weeks, my energy level has been down. Trying to build it back up---sometimes I'm just not patient enough. I am in the process of changing to a new primary care Doc----the one I have now is not up to par as far as I'm concerned and I have the feeling he is distant to me since I told him two years ago that I was tired of the drugs not working, or making me worse instead of better and I decided to go cold-turkey and try a more healthy natural approach. Being the smart-ass he is---he looked at me and said, "well, I give you 2 months!" Well, it's been over 2 years. Although, I'm not any better, at least I'm not drugged up and non-functioning like I was before. I still am depressed and anxious, but I think that is just the way it is going to be for me and I have to keep fighting hard to stay out of the "black hole". Not easy, but I try.Thanks again for your reply. If you want, you can take that question off the Fibro Board---you know, I never gave it a thought to just PM you! Dah!!!!! See, I told you this brain of mine is fried!







You are so helpful and right on top of things, Susan, Good Job.







Hope this finds you doing okay.Love  Karen


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## squrts (Aug 14, 2000)

i think fibro myalgia has become a name belittling this disease too.THEY seem to have lumped every little unexplained pain into this catagory.so that fully functional peopl are saying they have this and makes itlook as if its really nothing.


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## Feisty (Aug 14, 2000)

Right you are, Denny!I mention to anyone that I have Fibro and they just look at me and say, so?, I have a friend, or I have a relative, etc." and I should feel so fortunate that I don't have anything WORSE THAN THAT!! Oh, I get that all the time from my Aunt (who raised me). So, I've stopped saying anything and when someone asks how I am I just say fine. That's what they want to hear anyway. Most people just don't "get" the pain and fatigue we feel---even on a "good day". And then couple that with almost a daily migraine---but I should feel so "fortunate", huh??!!! Dah!!Sorry, guess I just needed to vent some of this frustration. Just plain tired of it all.


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## ShellyMcG (Jul 29, 2002)

I am new here, but not new to FM. I was dx in '84 when they still called it Fibrositis. Of course, "itis" means inflammation, and we now know that FM does not cause inflammation.Anyway, I can't ever remember any one not believing me when I told them I was in pain. My family--and it is a large family--knows all about my FM. Sometimes I show up for family function, and sometimes I don't.Here is my motto---"If I tell ya I hurt, it means I hurt. If you don't believe me--the hell with ya." Works for me.Believe in yourself, and so will others.Peace & Luv from Shelly


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## Feisty (Aug 14, 2000)

Nicely put, Shelly!Thanks for making me smile today!


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## M&M (Jan 20, 2002)

Bravo Denny! I agree 100%!! I can think of at least 2 people off the top of my head that have "Fibromyalgia" but seem to be just fine. They do have an ache or pain here or there, but I just don't think it's fair that they can have such full schedules and still say they have Fibro. I try to tell myself "These illnesses affect everyone differently" but there sure are times when I say "Yeah, right - Fibro my arse!







"Oh, and Woo Hoo Shelley!


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## squrts (Aug 14, 2000)

yeah shelly,nicely put,but there will always be thoses who wont belive no matter how much i belive in myself.the way i come across is that lazy do nothing who sponges off his wife.it really is different for a man no matter how much womens lib there is.most men cant see a man living off his wife,which makes it difficult for me to believe it myself.i was raised that way myself.


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## Feisty (Aug 14, 2000)

That's gotta be tough, Denny.Guess you just gotta keep telling yourself that the REAL reason is because of the Fibro, etc. and to hell with what others think. I know that's easy to say and hard to do and I probably shouldn't be the one saying it either, since I feel guilty myself. And now with hubbie STILL not finding work---I'm going to have to try and get some additional schooling or training or something because these housecleaning jobs are definitely doing me in. It makes me angry that I should have to do this, but at the same time I feel guilty for feeling that way---after all, he was the breadwinner for 32 years, so now it's my turn. And here I am, as "fit as a fiddle"---not.


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## PeacefulHart (Jun 26, 2002)

Feisty... find things in your life about which you feel passionate. Put your whole heart into doing them. This will help you to develop more of a sense of self-worth. I know you said you felt guilty about venting to me... but it's OK to vent anytime you need to. I don't always have time to peruse this board in its entirety... but when I find your posts, and feel your pain, I feel that I have somehow let you down personally because we know each other in realtime. As I've always said to you... I can listen... but I can't always advise you. Some things we need to learn by ourselves. You're a smart lady. You'll figure it out.


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## ShellyMcG (Jul 29, 2002)

Denny,You are so right. Some people will never get it---so the hell with 'em. Seriously---I am not walking in your shoes--nor you in mine, so I don't know what your life is like now-- do I? I can only tell you how I cope.One Day at A TimePeace & Luv from Shelly


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## M&M (Jan 20, 2002)

Very cool Feisty!(((Group Hug))) Hang in there gang, and don't give up!


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## squrts (Aug 14, 2000)

you are right too shelly!i didnt mean to come across as confrontational,guess i must have had a wild hair up my a$$.peace


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## squrts (Aug 14, 2000)

right on karen.so did you all fight the whole time or did you actully like each other?ROFLi`ve ofter wondered if internet friends would like each other in person.it would be an interesting experiment.


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## Feisty (Aug 14, 2000)

Denny,You are such a tease. LMAO. ROFL.


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## ShellyMcG (Jul 29, 2002)

FeistyI wondered where you lived in WI. Now know it is Green Bay. My husband and I owned a home in Northern WI--St. Germain-- until last year. Unfortunately, he was killed in an auto accident, and the home in WI had to be sold. We are from the Chicago 'burbs, and maintained 2 homes, so I am back here in IL. I had an emergency bowel resection on 6/8 due to diverticulitis---big surprise--to say the least! I am scheduled for a reversal of the colostomy on 9/9. As you can see, this has not been a good year for me. But, I will get through this, and come out kicking!!!!DennyNo problem ;-)Have everyone is having a day with as little pain as possible.(((Soft Warm Hugs)))Shelly


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## weener (Aug 15, 2000)

I've discovered over the years that I can't compare my bout with fm with others. Everyone seems to have different degrees of fm and how we deal with it. My best friend has had fm since l984 and she leads a very active life. I can't figure out how she can keep on going and not crash. She does have her crash times, but they don't last long. She says that since she started on multi-vitamins, MSM, zinc/calcium supplements she hardly gets pain. So I go and do the same thing without any results. So, go figure! So I've decided to go my merry way in life, do what I have to do to function. Then of course every now and then you run into some numbnut that has to make a smart remark and I'll have to put them into their place







Karen, how wonderful that you got the chance to meet someone from the board. I hope that we will be able to meet one day.If I ever win the big lotto I'll have to fly ya all to some warm island retreat where we can all sip on tropical drinks and have our private massage therapist work on us all day. When I dream, I dream big


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## Feisty (Aug 14, 2000)

Hi Shelly & Weener!Shelly, I am so sorry to hear of your husbands death. It must be so hard for you. St. Germain is north of Minocqua, I believe. We've been "up North" a number of times thru the years, so I remember that resort area. Beautiful. Hubbie's sister and husband live in Minocqua, but we don't get up there very often. It sounds like it's been rough for you the last few months. I know that feeling. I had to have a sigmoid resection plus extensive pelvic floor rebuilding 2 1/2 years ago-----not fun. May 4th of this year I had an emergency small bowel obstruction---followed 6 weeks later with Nasal obstruction surgery. It's been slow going for me, too!! I know the feeling--believe me. I'm ready for the "Fox Farm"!!!!!Weener----so nice to hear from you. I owe you an e-mail. I promise I'll try to get at it in the next few days. Take care. I hope we get a chance to meet someday, too. Oh, that vacation sounds like heaven. We can just lay around on the beach, soak up some sun, take in some "sites"---ah, hem!!, have a party or two---whooeee.







Can't wait until YOU win the lottery!!!!!!!!







Karen


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## squrts (Aug 14, 2000)

hi weener,when i run into that numbnut with a smart remark i let em have a piece of my mine.i say,um...uh,well you see...um.maybe i should just hit em,loldenny the pacifist.


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## PeacefulHart (Jun 26, 2002)

It was very cool, Feisty. (FYI: My hubby was also on his very best behavior that day.....







)What I think is awesome is that you routinely interact with... _[edited by Susan Purry] _ That's pretty special. Hey... Hubby still wants a football.....







My plate? Oh heck no... I've never needed support from anyone.........


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## M&M (Jan 20, 2002)

Good advice Weener. Very wise, and yet hard to do







Just wish I was one of those people who barely crashes, and can be very active! LOL


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## RosterP (Aug 19, 2002)

I'm new here -- just found this much needed support today! I know I can't know your pain cuz I don't walk in your shoes, and you can't know mine.gosh - about 21 years ago I had a doctor tell my mom that'd probably have systoms like I really do today ... IBS & FM suffering and pain. WOW, he didn't have a name for it, but I'll never forget those words. I've never known anything else so my pain is normal to me -- frustrating at times, but normal.Enjoy the moment! Live to be happy and to *&^^ with anyone who doesnt!!


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## alexandrajennings (Aug 15, 2002)

Hi SusanDo you have a website or information re CFS so I can read up some more? I have spent so many years going back and forth to the docs due to my constant stomach pains and numerous other stomach problems etc and chronic fatigue and it seems that each time i get told a different thing and I am determined now to find out what on earth is going on! I constantly ache and feel drugged and it seems to be getting worse so any help I can get would be so appreciated, its starting to get me down a bit!ThanksAlex


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## celticlady (Aug 6, 2001)

Hello,and encouragement to all-Say,Denny,I would imagine it must be hard to be a guy and be disabled. Even being a woman and being disabled totally(on SSDI after long hard fight)sucks., I still get down on myself that I "just" stay at home.people dont understand cause I look fine! (they cant see the multiple spine problems,cardiac,depression,etc).I would work if I could,who the heck would make `1/4 of their past earnings..some days I cant even be a MOm to my son..... hang in there,those on this board understand you.Celticpardon the typos.,typing increases the neck pain!Denny-PM me if you wish.Shelly-great attitude,I am TRYING to develop it!


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## Susan Purry (Nov 6, 2001)

Hello and welcome to PR and Alex-J which are new names to me. Hope you find this forum a good place for support and information. Alex, here is some information for you:WEBSITES http://www.cfids-me.org/ CFIDS Association of America: http://www.cfids.org/ www.immunesupport.comCFS & Fibromyalgia Information Exchange Forum: www.co-cure.orgARTICLES*Is there a diagnostic test for ME/CFS? * http://www.meassociation.org.uk/fgeninfo.htm


> quote:No. The diagnosis has to be made on the typical pattern of symptoms with exclusion of numerous other causes of chronic fatigue. Anyone who is suspected of having ME/CFS should have a number of routine blood tests by their GP as well as more specialised investigations if the diagnosis remains in doubt.


* CFS Diagnostic Criteria used in the USA * http://www.fmnetnews.com/pages/criteria.html


> quote: CHRONIC FATIGUE SYNDROME (CFS) Chronic fatigue syndrome is diagnosed using the CDC 1994 guidelines published in the Annuals of Internal Medicine 121(12):953-959. A copy of this article can be downloaded from the CDC (Centers for Disease Control and Prevention) Internet site at: http://www.cdc.gov/ncidod/diseases/cfs/defined.htm To meet the criteria, patients must have: A. Fatigue Severe, unexplained fatigue that is not relieved by rest, which can cause disability and which has an identifiable onset (i.e., not lifelong fatigue). It must be persistent or relapsing fatigue that lasts for at least six or more consecutive months. B. Four or more of the following symptoms: impaired memory or concentration problems tender cervical or axillary lymph nodes in neck region (note that they do not have to be swollen but just tender; this can be a problem for people with FMS who have tenderness in these areas as well) sore throat (but may not show signs of infection) muscle pain multi-joint pain (but not arthritis) new onset headaches (tension-type or migraine) unrefreshing sleep (wake up in the morning feeling unrested) post-exertional malaise (fatigue, pain and flu-like symptoms after exercise


*Diagnosis and Description of CFS: National Institutes of Health 09-01-1999 * http://www.immunesupport.com/library/showarticle.cfm?ID=1181


> quote:Chronic fatigue syndrome (CFS) is an illness characterized by prolonged, debilitating fatigue and multiple nonspecific symptoms such as headaches, recurrent sore throats, muscle and joint pains, and cognitive complaints. Profound fatigue, the hallmark of the disorder, can come on suddenly or gradually and persists or recurs throughout the period of illness. Unlike the short-term disability of an acute infection, CFS symptoms by definition linger for at least 6 months and often for yearsï¿½ï¿½Despite multidisciplinary investigations into the cause of CFS, its etiology remains unknown. Similarly, no specific diagnostic tests or therapies for CFS exist. A supportive program of patient management--including symptom-based treatment, education about the disease, and regular follow up visits to rule out alternative diagnoses--can offer reassurance, dispel unfounded beliefs about CFS or its treatment, and help patients and their families adjust to living with this chronic illnessï¿½ï¿½Besides a debilitating fatigue unrestored by rest, common symptoms of CFS include more intense or changed patterns of headaches; reduced short-term memory or concentration; recurrent sore throats; tender lymph nodes; muscle discomfort or pain; joint pain without joint swelling or redness; unrefreshing sleep; and postexertional malaise lasting more than 24 hours (table 1; see appendix for detailed list). The severity of CFS symptoms varies broadly among individualsï¿½ ï¿½Although CFS can persist for many years, longitudinal and followup studies indicate that CFS generally is not a progressive illness. The symptoms usually are most severe in the first year or two. Thereafter, the symptoms typically stabilize and then persist chronically, wax and wane, or improve. Most patients partially recover, some fully recover, and others recover and relapse. Currently, an individual's course of illness cannot be predicted. No long-term health risks, such as an increased risk of cancer, have been associated with having CFS.


I hope that was of some use. Please post again if there is something specific you need to know and I'll endevour to find out some info for you.


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## alexandrajennings (Aug 15, 2002)

Hi again SusanThank you so much for all this information. I only discovered this site a few days ago and already I have learnt so much which is wonderful for me, after years of trying to find some answers to what is wrong. I now have a much clearer idea of what I need to do to find out the problem and it is also so good to be able to speak to other people who have similar experiences.Alex


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## Susan Purry (Nov 6, 2001)

*PeacefulHart*, I could not notify you that I wanted to edit your post, so if you'd like to discuss my editing of your post please feel free to contact me by PM or email.*Alex* hang in there! See you around on this forum hopefully.


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