Can one PEM crash really make someone permanently worse or go from mild/moderate to severe?

[PhoenixDown]

I don't know of any evidence of PEM or ME/CFS causing permanent damage. I have heard of people that have had a lasting worsening of their symptoms but that doesn't mean they did permanent damage to their bodies.

What would you call an indefinite worsening that has lasted over a decade and for which there is no cure for?

I think it's unfair to label newly diagnosed ME patients as having something temporary. If you do that they won't take precautions to prevent long term or indefinite harm. At the moment we don't know which patients will recover from exertion and which won't. It's like playing Russian roulette with exercise.

 

[ljimbo423]

I think it's unfair to label newly diagnosed ME patients as having something temporary.

I didn't say that a worsening of symptoms was temporary or that ME/CFS couldn't last for years. I said there isn't any evidence that a worsening of symptoms or ME/CFS causes permanent damage to our bodies.

I was most bedridden for 6-8 years and extremely sick. I struggled to shower once every 4-5 days and often was so sick, I didn't have the strength to get something to eat and often feared that I would spend days not eating.

I have profoundly improved my health and am now mostly mild. So although I was devastatingly sick for years, there wasn't any permanent damage to my body.

I fully agree and have said, if we push ourselves too hard or too often, it's possible to have a lasting worsening of symptoms. So I agree, it's best to err on the side of caution with this illness and not over-do-it.