ME...stands for?

[Angel]

I am having a brain fog moment and cannot remember exactly what ME stands for. I've been searching through out the website and can find ME/CFS/FMS everywhere, but not the words for ME.
Could someone please spell it correctly more me??? Myo...
Thanks!
________

 

[Jody]

I think this is correct --

myalgic encephalomyelitis

At least, that's how I spell it.

One reason I'm not a fan of going by that name. It took me well over a year to get to the point where I could say it aloud without stammering through it.

People with serious cognitive problems and speech problems should not also be saddled with a name we can't remember, can't spell and can't pronounce.

 

[Angel]

ME

Hi JOdy:
Yes, I had it down so I could rattle it off intelligently, but then when I needed it I couldn't remember it at all.
It at least sounds like something real. If you tell someone you have chronic fatigue, they say, yeah, well, I get tired sometimes too, but I keep going...
They don't have a clue.
thank you for the correct word.
________

 

[Jody]

Angel,

Oh, it's true that Chronic Fatigue is a ridiculous name. An insulting name. And a misleading one. Couldn't agree more.

Just can't stick the myalgic encephalomyelitis name though. I notice when I tell someone that I have that they REALLY glaze over and it's as if I'd spoken in a foreign language.

Mind you, people do that alot anyway when you talk about this illness. I can't count the number of times when the response I'll get is ... nothing. It's as if I hadn't spoken or I'd said something mundane like told them what I'd had for lunch or something. And they just carry on whatever the conversation was, as if my illness was nothing.

A good name would be nice though.

 

[Angel]

ME

JOdy:
Yes, you are so right. I guess through the years I have learned to keep that a private revelation. When I was so sick I needed someone to understand, but they just can't.
Now that I am doing much better, I only reveal it to people who I see have it, and they are interested in finding out what worked for me. Then I will share anything I can to bring them to a better level of health.
By having an intelligent conversation with them they feel validated and have hope and don't waste their time and money on Doctors that don't know what to do other than give them a sleeping pill, and antidepressent, a pain pill and a muscle relaxor and drug them into total oblivian.
On occasion a friend or medical person will referr someone to me for a few telephone conversations.
I like the term ME, and I don't like the term ME for the reasons you have listed. I sure can't come up with something better though.
________

 

[Jody]

I don't know what name I would call it either.

For awhile there I thought maybe PostViral Fatigue would cover it but I guess it does not cover enough of the symptoms.

For some reason it sounds more ... like a normal name for something.

 

[Angel]

ME

It's a good effort! The only thing is, I believe that many of us still have some sort of a viral infection going on that has not been dealt with.
When I concentrate on killing off viral, there are certain symptoms that go away or are reduced greatly, such as brain fog, fatigue, headache in the eyes after 3 P.M.
Then I do better for awhile, and stop trying to kill off the unknown viral, and slowly over the months the symptoms come back.
Maybe Repetitious stubborn viral fatigue would do the trick.
________

 

[Jody]

Or Chronic Viral Fatigue....

Part of the problem is that the average person's understanding of the word Fatigue is different from the way the medical community uses it. More like depletion or exhaustion.

But the average joe interprets it to mean tired. Certainly, I did. Before.

 

[Angel]

Exhaustion

Yes, total body exhaustion that makes you feel weak all over. I also knew someone who had it 18 months earlier than me. When she talked about it, I thought she was just lazy. Little did I know. HIndsight is often 20/20.
________

 

[Jody]

I know.

I didn't know anybody with CFS before I had it but I had a friend with another condition -- a benign tumour growing in her neck which eventually destroyed her larynx and she had to eventually use a little gizmo held against her neck to make vibrations that sounded like a robot talking.

This thing was benign but it eventually took her life because it would grow back after she'd have surgery to remove it.

This was a few years ago that she died. I think of her often, because NOW I know I should have been making a point to spend time with her. She was a wonderful person who I realize now was terribly lonely and I could have made a difference for her.

I'm sure I have been that obtuse and unaware with other people that I've known in the past as well.

 

[Angel]

but now we know, so the future is different with our friends and those in need. We are able to recognize that need and be there. I'm really sorry about your friend. Cancer is a really hard thing to comprehend.
I think that our children learn this lesson from us earlier in life than we did because of our experience.
________

 

[Jody]

Angel,

That's a positive way of looking at it.

The past is past and there's nothing I can do about it. And I do try to be sensitive to the people I'm in contact with that are unwell and vulnerable. I certainly notice them in a far different way than before.

And yes, our children are going to be more aware than we were and that is a good thing.

 

[Angel]

Hi JOdy:

I do believe that our actions after an experience can be very valuable. If we experienced those things and our illness and didn't help others, then we would be sad human beings.

I guess I look at it as part of my purpose on earth. If God has allowed me to have this long term experience, then part of my purpose is to help others that I meet who need the support that I have needed.

I like knowing that when I meet someone that has just been diagnosed and has no idea what to do, I can help guide them a bit so it doesn't take them as many years as it did me to get to this level of health. I can help save them money and time by taking a short cut directly to some of the treatments or Doctors that made progress with me, if they choose to go that route.

JUst having a plan of action helps them cope. It's when you have no idea of what to do that it seems as if it is too much.

I need to try and sleep now, so

good night,
________

 

[Allyson]

ME

It's a good effort! The only thing is, I believe that many of us still have some sort of a viral infection going on that has not been dealt with.
When I concentrate on killing off viral, there are certain symptoms that go away or are reduced greatly, such as brain fog, fatigue, headache in the eyes after 3 P.M.
Then I do better for awhile, and stop trying to kill off the unknown viral, and slowly over the months the symptoms come back.
Maybe Repetitious stubborn viral fatigue would do the trick.
________

many are now testing for LYme too if they suspct something viral - any similar symptoms

Ally