During my 2 years with CFS I have heard about several people who had it badly but went on to make a complete recovery, within just a few years.

For most people it also goes up and down so for anyone recently diagnosed or going through hell with it, I want to spread some hope around. The stats really are good for complete recoveries, and most people enjoy life more after, although it can seem a hell of a long haul. I heard 2 and a half yrs is the average? Anyone else with good stories about people who;ve recovered ? or anyone know good book with recovery stories.

I try to live for the life I;m going to have after this wretched illness passes. Hope this post might encourage some people.

I am not sure if I agree with those stats. I have had CFIDS for 13 yrs. since I was 21, & I was also told that after 8 yrs. the illness runs its course. Well, needless to say, I have had several setbacks, this one being the worst. I hope there are some success stories out there, but I'm afraid I'm not one of them yet!

I have had CFIDS for 10 years.

I believe the correct stats are as follows:

a few people do recover and a few people do get worse but most people, with the correct diagnosis of CFIDS, get neither better nor worse but, after the initial onset, which can last anywhere from a year to years, go through periods of remission and relapse. These relapses are referred to as "flares" - an exacerbation of symptoms, which then abate for awhile, but in my case (and most people I know who have it) never completely, i.e. 100 %, and then start up again after a few weeks or months.

It is good to be positive, but even more important not to be in denial about what is actually occurring.

Peregrine

[This message has been edited by peregrine (edited 10-22-2003).]

If most people with CFIDS/CFS do recover, why aren't there more success stories floating around?
Do the people that get well want to get as far away about talking about it as possible?
I do not believe there is a magic pill or a ten year rule.
And that if the root causes are removed, then you could be well a lot sooner.
I have recovered as well as I have only because of aggressive research and natural treatment.
This is my first post to this forum, and I am hoping to share with people my wellness strategies as time goes on.

Love,

Alyssalyn

in Uk its 40% of people recover to 98% or above, i dont know the % for those who get worse or those who stay the same. But it depends on what caused it and your personal cirumstances as well - eg how much help is available, and support and how much you are doing etc.

There is no cure for CFS, but you can recover well if you don't overdo it. I have flares for SURE. You have to have a balance and rest a lot. I had it for 8 years and no doctors could or would help. One didn't believe it existed. I finally found a CFS specialist and began a slow recovery with his help. I had been bedridden 90%of the day and Terribly ill with vertigo, dizzyness and nausea and fatigue etc... I am slowly climbing out of it. I now have a quality of life. I rest a lot and do not work outside the home. I am now 11 years with CFS. I get B12 injections and take good supplements. I was a vegetarian for years thinking that was GOOD. It made everything much worse. I NOW EAT red meat. You need the vitamins and minerals. There is no substitute.

I think that once they find out what CFS really is - the recovery rate will go up...It seems to me the great problem for CFS/FM patients is misdiagnosis and undertreatment. It is bizarre that people who are so sick get discounted by the medical profession and even those closest to them.
If someone is so sick with vertigo that they cannot stand up - it is usually categorized as Meniere's disease.
If someone is in such pain that they have to resort to morphine - they may have a nervous system disorder,as yet un-named....maybe an excess of pain causing neurotransmitters...speculating here....
If you are so weak that you cannot walk - that sounds like multiple sclerosis...
I have seen people recover with good treatment - but that takes a very committed physician.
I have heard that eventually it can burn out in older age....
I would not lose hope. If they took this disease and threw as much money towards its research as they have done with HIV/AIDS...we would be much closer to a cure....