For Those With Severe ME/CFS: A New Website

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Oh, I love that. I frequently say, "I cannot be the person I am" but the quote above zeros in at a deeper level.

June
yes...both hit home. and i'm weary of saying, "i may have told you this before", or "what day is it?", or hearing my family say to me, "yes, you told me that". tonight it is helpful to read your comment and re-ready Corwhurst's. thanks, June.
 
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YES!!! ugh!!

This leads to people who consider they have had "a touch of ME" and are willing to tell you how they got better because they tried while you are still ill because of moral weakness.

ME has become a symptom as some people use it to mean fatigue. I doubt if many of them know what the initials stand for.

Mithriel
YES!! i'm so glad i asked! this is it..."a touch of chronic fatigue (never chronic fatigue syndrome)". and i stand there silent because who has the energy to explain? or to explain without sounding defensive! ugh!! :(
 
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In the papers this week was a women with ME who is climbing Everest for a heart charity. You see what we are up against.

Mithriel
LOL! unbelievable!

Doubly funny to me 'cause the supposed ME sufferer isn't even doing it to support an ME org- which just mirrors the broader lack of fundraising 'walk a thons' etc. for ME.
DITTO!!! how do they get it so wrong when the W.H.O. has defined it? lack of research on the part of journalists and prejudice thinking?...must be.
 
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"Now wait a minute. Not so fast. When ME is mild, some people with it can do things like this or attempt them."

you're right...on all counts, tee. :ashamed: i continued to teach while raising 3 kids...no one would have known how sick i was since i was incapacitated only about 3 days per week at the beginning. my illness only became evident to others in the last 3 years, for the most part. those who learned i had been ill so long were shocked! i was forced to retire only 2 years ago. consider me corrected :innocent1:
 
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It seems to me that almost all physicians use the Fukuda criteria, which aren't 100% accurate, but are close enough to probably get say 98% overlap with the 'real' Canadian Definition, so no I think only a small number in the US get a CFS diagnosis when they don't have it.

ME/CFIDS has a unique presentation that is reflected in the two definitions.

In the UK, though, it's an insane problem because of their 'Oxford' definition which is just tiredness!
can you fill me in on where to find those varied definitions? thanks for clarification, justin.
 

Carrigon

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The name is what forever doomed us. How exactly can you ever call it CFS? That isn't what I have. I have chronic immune dysfunction that has hit every organ system in my body. And it happened to me from a viral infection. I'm not just "tired", I have horrible symptoms and pain everyday. I have a high white cell count with my blood. I have severe problems with my thyroid. I have all kinds of reproductive problems. It hit my eyesight, and every other organ system in my body. I have neurological damage. I have heart and blood pressure problems, the POTS/NMH has been out of control on me for nineteen years. I have audio processing disorder from this, I have all kinds of autistic like neurological problems from this disease. I have MCS. Plus the acid reflux which I believe is caused by antibiotic resistant h. pylori, which will never be cured because there is no profit in curing people. But the list of my health problems is long. There is no way anyone can call what I have simply CFS. And I have Fibro pain and bodywide stiffness in all my muscles and joints every day. I do have fatigue, I do get severe post exertional malaise, but that's just one of many things I get from this disease. It's a bodywide infection of some kind, be it the advanced Lyme or XMRV or whatever, there's alot more going on than just being tired.
 

Mithriel

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Hi Teejaykay,

Now wait a minute. Not so fast. When ME is mild, some people with it can do things like this or attempt them. We would need to be near her to her to listen to her breathing and also observe her during the climb and see if she is experiencing worse altitude symptoms than those around her.

I know because I had mild ME for 14 years after being bedridden the first year and I was able to do forest fighting in the summer and teach full time and I went to white water raft guide school etc... However, I breathed way harder than anyone else, people on the fire line would call out, "Oh tee, you don't have to breathe like that!" So it was very loud and yes I did. I couldn't help it.

I was also in tremendous pain on some fires but that was due to my period. Back then I could push through pain etc... however when after the fires I would often spend most of my time lying down when at home. I knew it was because of the CFS. So we would also want to watch that lady after the climb and see if she's able to perform normal daily activities or if she seems to have PEM.
I didn't mean to imply that the only people with ME are those lying in bed all day or that you ca't have it if you can work and do things. In fact it was CFS with it's definition of having six months of exhaustion that brought that idea in as well as glandular fever where people are often very sick to begin with. In fact ME can be insidious.

Dr Ramsay gave as an example patient a colleague who could work normally for a few months then have a bad few weeks.

I managed to carry on at school, work Saturdays, go out dancing and hill walking. But I would have attacks of paralysis, blindness and terrible pain. As a teenager I didn't let a little thing like pain slow me down :Retro smile:

In fact I think this slow mild impact that you can push through can lead to a bad outcome as the underlying damage builds up. This could another reason for the "I spent a year in bed now I can do anything I want" syndrome as the enforced rest stops the damage to the immune system, heart, whatever that builds up with a continual mild overdoing it.

Having said that, struggling to work or even have a social life is one thing, climbing Everest is another. And why mention she has ME? This sort of article in the paper gives out completely the wrong message and we all suffer for it. If she does have ME she is being incredibly foolish, has she not heard of Lynn Gilderdale and Sofia Mirza? Why are her family letting her go? The end point we all fear is bedridden in the dark 24 hours a day unable to talk to anyone or to feel touch. I hope she doesn't have ME because she is risking that by pushing her body to extremes.

Mithriel
 
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The name is what forever doomed us. How exactly can you ever call it CFS? That isn't what I have. I have chronic immune dysfunction that has hit every organ system in my body. And it happened to me from a viral infection. I'm not just "tired", I have horrible symptoms and pain everyday. I have a high white cell count with my blood. I have severe problems with my thyroid. I have all kinds of reproductive problems. It hit my eyesight, and every other organ system in my body. I have neurological damage. I have heart and blood pressure problems, the POTS/NMH has been out of control on me for nineteen years. I have audio processing disorder from this, I have all kinds of autistic like neurological problems from this disease. I have MCS. Plus the acid reflux which I believe is caused by antibiotic resistant h. pylori, which will never be cured because there is no profit in curing people. But the list of my health problems is long. There is no way anyone can call what I have simply CFS. And I have Fibro pain and bodywide stiffness in all my muscles and joints every day. I do have fatigue, I do get severe post exertional malaise, but that's just one of many things I get from this disease. It's a bodywide infection of some kind, be it the advanced Lyme or XMRV or whatever, there's alot more going on than just being tired.
i am set back by all the damage to your mind and body, Carrigon. i have some, but not all these impacts. i wonder sometimes how many are due to this one illness and which may be separate issues. i suppose we will never know...and the answer may not be relevant. i doubt that much of the damage in us is reversible. if there is found a single cause...and treatments become possible and available...i pray we all find relief in at least some, if not all, of the multitude of helath issues from which we suffer. in any case...i will pray for you to experience relief through whatever will bring it.

praying for greater rest...for us all
 
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Having said that, struggling to work or even have a social life is one thing, climbing Everest is another. And why mention she has ME? This sort of article in the paper gives out completely the wrong message and we all suffer for it. If she does have ME she is being incredibly foolish, has she not heard of Lynn Gilderdale and Sofia Mirza? Why are her family letting her go? The end point we all fear is bedridden in the dark 24 hours a day unable to talk to anyone or to feel touch. I hope she doesn't have ME because she is risking that by pushing her body to extremes.

good points, Mithriel. this discussion is indicitive of the challenges we all have, when not totally crashed, to know when too much activity is too much. not that i have EVER considered climbing ANY mountain, much less, everest!!
 
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I usually use both CFS and ME and I explain to my doctors and to others what ME stands for and means and a little about the politics and the CDC wanting to make us look like we're just psychiatrically ill.

im not giving up! this is my fourth attempt at responding to thank you for this...and add my own brilliant response! : ) so...now im composing it on microsoft word!

this is very helpful, tee! thank you! God help me, i guess im just too concerned about what people think who dont really know me when one of the first things they learn is that i have what im afraid they may think is chronic laziness!! myalgic encephalomyelitis sounds so much more like a real, scientific, though mysterious, illness...on this side of the pond, at least.

you know, as in a casual conversation such as:
why did you retire?
because of a prolonged flare-up of a chronic illness
im sorry. may i ask what illness?
ME or myalgic encephalomyelitis
oh. ive never heard of it. what is is?
a disease which causes a neurological and immune dysfunction.

versus:
why did you retire?
because of a prolonged flare-up of a chronic illness.
im sorry. may i ask what illness?
chronic fatigue syndrome
oh. um...i think my cousin has that. have you tried _____? it worked for her! OR oh. i get really tired too OR oh. um. so...um...oh. i didnt know that. well, i gotta go now.

though im very grateful close friends and family seek to understand...and maybe because they do...im always taken off guard by those casual encounters. as evident in this thread, those on the other side of the pond have the same problem with the term ME. sigh!
 

Carrigon

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i am set back by all the damage to your mind and body, Carrigon. i have some, but not all these impacts. i wonder sometimes how many are due to this one illness and which may be separate issues.
I definitely agree that there is more than one single cause of why I'm so sick. I have theories on it. First, I was Lyme, that's like number one. Then I broke a bone in my foot and the doctor forced me to get a bone scan or he wouldn't treat me, they injected me with enough radioactive junk to build a nuclear warhead and I got sick from that. I believe that helped ruin my thyroid and reproductive systems. Then in the 80's I got Fibro, which I'm really starting to believe was one hundred percent triggered by my first encounter with aspartame. Not knowing aspartame was causing further damage, I continued to use it and got sicker and sicker. Then, I was near upstate NY during the Dr. Bell outbreak cases of CFIDS. I came home really sick and was told I had mono. Shortly after that, I was forced by my college to get a polio shot. My health went completely down the drain after the shot till I caught something that gave me full blown CFIDS and almost killed me. I have Lyme and HHV6 and EBV. I haven't had the XMRV test yet, but I do want the test. I think alot of things contributed to my being this sick. I don't know if there will be one thing that will make me well.
 

starryeyes

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"Now wait a minute. Not so fast. When ME is mild, some people with it can do things like this or attempt them."

you're right...on all counts, tee. :ashamed: i continued to teach while raising 3 kids...no one would have known how sick i was since i was incapacitated only about 3 days per week at the beginning. my illness only became evident to others in the last 3 years, for the most part. those who learned i had been ill so long were shocked! i was forced to retire only 2 years ago. consider me corrected :innocent1:
Wow Resting. My hat goes off to you. I know I could never have taught and raised kids at the same time. I'm in complete awe. It's interesting how people in your life reacted when they found out you had really been ill the entire time.
 

starryeyes

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Hi Teejaykay,
Struggling to work or even have a social life is one thing, climbing Everest is another. And why mention she has ME? This sort of article in the paper gives out completely the wrong message and we all suffer for it. If she does have ME she is being incredibly foolish, has she not heard of Lynn Gilderdale and Sofia Mirza? Why are her family letting her go? The end point we all fear is bedridden in the dark 24 hours a day unable to talk to anyone or to feel touch. I hope she doesn't have ME because she is risking that by pushing her body to extremes.
Mithriel
Yeah, Mithriel, I do agree with you here.
 

starryeyes

Senior Member
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I usually use both CFS and ME and I explain to my doctors and to others what ME stands for and means and a little about the politics and the CDC wanting to make us look like we're just psychiatrically ill.

im not giving up! this is my fourth attempt at responding to thank you for this...and add my own brilliant response! : ) so...now im composing it on microsoft word!

this is very helpful, tee! thank you! God help me, i guess im just too concerned about what people think who dont really know me when one of the first things they learn is that i have what im afraid they may think is chronic laziness!! myalgic encephalomyelitis sounds so much more like a real, scientific, though mysterious, illness...on this side of the pond, at least.

you know, as in a casual conversation such as:
why did you retire?
because of a prolonged flare-up of a chronic illness
im sorry. may i ask what illness?
ME or myalgic encephalomyelitis
oh. ive never heard of it. what is is?
a disease which causes a neurological and immune dysfunction.

versus:
why did you retire?
because of a prolonged flare-up of a chronic illness.
im sorry. may i ask what illness?
chronic fatigue syndrome
oh. um...i think my cousin has that. have you tried _____? it worked for her! OR oh. i get really tired too OR oh. um. so...um...oh. i didnt know that. well, i gotta go now.

though im very grateful close friends and family seek to understand...and maybe because they do...im always taken off guard by those casual encounters. as evident in this thread, those on the other side of the pond have the same problem with the term ME. sigh!
I know. I've lost friends over this issue. I don't feel that most of my family is or would be here for me if given the chance because of the misconceptions about CFS and ME once you explain that it's just another name for CFS.

I just tell the truth to people now because I can no longer work, I can no longer be relied upon and I'm 95% bedridden. I let the chips fall where they may although I have been very hurt by many people's responses. I think of this as a filtering device though. It shows me who really believes what I say and who doesn't. It's not easy to learn this about people in your life, but I think their reactions show who they truly are.

Thank you too, Resting, for expressing your thoughts and feelings about this. I'm so glad we have PR where we all do understand each other.

(((Hugs)))

tee