A short sad history of ME/CFS

NEH

mardatha wrote: »

I just dont read stuff like this, there's no point for me. I try to take exercise when I can, I try to eat healthy when I can, and I STAY CHEERFUL WHATEVER HAPPENS! lol!

I think i get to the point i just think sod it, the message is i'm going to die, well tell me something i didn't know...:D

clouty

You see this is the thing, they always say if you have anything that complcates matters that you're more at risk of cancer.....and then tehy tell you well if you put this in your diet do this do that then that can help prevent it, if you're on the pill then that'll help....Who the whatsit do you believe?!

The thing is, we are on the point of discovering the root cause of ME... hopefully, and the reason that we have such lousy medical support and the reason that it has not been discovered yet is that it has been belittled as a psychosomatic disease of middle-aged women that is all about tiredness. Which it ain't.

So it's important that people realize what's really happening to people with the neuro-immune disease called ME/CFS. It may well be that it is caused in the first instance by a retrovirus, that can be treated, just as they treat HIV+ people to stop them getting AIDS.

Meanwhile, we eat right, and take supplements, practice sleep hygiene and are stuck indoors most of the time serving the prison sentence that is known as Myalgic Encephalomyelitis. I would like to know that there will be a day, one day, when I can wake up with energy, and without pain, with a clear head and look forward to the day instead of wanting to escape back into sleep.

I would like to know that the spread of this disease will be limited, so that no more kids get sick in their teens or earlier, and stay sick for decades.

So that's why I talk about what ME really is, and spread the message that we need medical research and clinical trials of retrovirals now for ME.

NEH

clouty wrote: »

The thing is, we are on the point of discovering the root cause of ME... hopefully, and the reason that we have such lousy medical support and the reason that it has not been discovered yet is that it has been belittled as a psychosomatic disease of middle-aged women that is all about tiredness. Which it ain't.

So it's important that people realize what's really happening to people with the neuro-immune disease called ME/CFS. It may well be that it is caused in the first instance by a retrovirus, that can be treated, just as they treat HIV+ people to stop them getting AIDS.

Meanwhile, we eat right, and take supplements, practice sleep hygiene and are stuck indoors most of the time serving the prison sentence that is known as Myalgic Encephalomyelitis. I would like to know that there will be a day, one day, when I can wake up with energy, and without pain, with a clear head and look forward to the day instead of wanting to escape back into sleep.

I would like to know that the spread of this disease will be limited, so that no more kids get sick in their teens or earlier, and stay sick for decades.

So that's why I talk about what ME really is, and spread the message that we need medical research and clinical trials of retrovirals now for ME.

Personally i'm going with my specialist's line of thinking that it's becasue of an overactive immune system which effectively needs calming down and then it can function normally once again....Ok i have Fibromyalgia now but even when i used to have ME it would have made sense...I think it may have been triggered by my repeated chest infections and the like and repeated steriods and anti-biotics but it makes sense to me that the immue system is in an over reactive state and that brings on all these symptoms....

mardatha

Everything is for a reason Clouty. Its not a prison, its an enforced slowing down of life, so that we can take time out to smell the roses ! Take life slow and easy, chill out and watch the clouds, the stars, and the birds. xxx

7roland8

People with ME are 25 times (not percent) more likely to get cancer. Interestingly, there are anecdotal reports of ME going into remission for ± 5 years after chemotherapy.

Think I'd rather not know anyway!

And at 12 pages long this is hardly a 'short' topic.

Magenta

mardatha wrote: »

Everything is for a reason Clouty. Its not a prison, its an enforced slowing down of life, so that we can take time out to smell the roses ! Take life slow and easy, chill out and watch the clouds, the stars, and the birds. xxx

For the majority of people with ME it's a prison and frankly these people are too exhausted mentally and physically to smell the roses or watch the clouds. :mad:

For them it is a living death, they are 'living' their lives as virtual zombies......

mardatha

I lay on a couch for over a year, too knackered to do anything at all - but I did a lot of cloud watching. Its magic and therapeutic. Life is too short, pet, you have to adapt .
I spent a year before that working nights with ME and I was a zombie but once I stopped working I had a year of resting & changing my attitude. Then I started to have a life again. Not much of one - I dont go out much, just stay in the house. But there's nothing wrong with my mind or my attitude - they are both healthy !

7roland8

just stay in the house. But there's nothing wrong with my mind or my attitude - they are both healthy !

I so agree - we ca't do much about what is happening to our bodys but we don have control over how we react to it and how we face life and its challenges.

NEH

For thsoe that are yuonger or who got it when they were still iin their teens and haven't had much a of life to live it is a prison sentence....

It's the futileness of it and whilst you can change your attitude it is an awful lot harder to let go of all the dreams and aspirations you had when you are still so very young....

Mojisola

NEH wrote: »

For thsoe that are yuonger or who got it when they were still iin their teens and haven't had much a of life to live it is a prison sentence....

It's the futileness of it and whilst you can change your attitude it is an awful lot harder to let go of all the dreams and aspirations you had when you are still so very young....

It is hard. My sons have been ill since they were 10/11. They have been sick for longer than they were well and don't actually remember what it was like to feel fit and active.

The only problem is that any stress makes things worse and resenting the illness and hating the loss of your dreams uses energy which makes you feel worse. From our experience - and others in our local support group - acceptance is one of the most important stages in starting to feel better.