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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The Lost Years

Old Bones

Old Bones

Senior Member
Messages
808
lauluce said:
anybody started having ME as a child and is now and adult?
edit: hehe, I forgot I already asked this question minutes earlier, is nice to know you understand why!
Click to expand...

I had ME for approximately a year at age 12-13. I was absent from school for several months, then gradually increased my part-time hours. By the following grade, a year after onset, I was fully-recovered.

Apart from lots of sleep/rest and respecting my limitations, I did nothing to "treat" my illness. No CBT or GET! The fact that many young people do recover is only one reason why studying these interventions in this age cohort will not provide useful insight. Of course, we all know the many other justifications for putting this type of research to bed once and for all.

My earlier approach to ME was very different from my "push through it" actions as an adult. So, wisdom definitely doesn't come with age.

All of our stories, regardless of duration, are a tragedy. But, I can't help but feel even more demoralized reading about those reporting 30+ years (and even longer). I have a bit more time before entering the next "decade", and keep hoping, for all of us, a major breakthrough that "stops this clock ticking", and starts another -- this time to record our months in good health (or at least much-improved).
 
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Cheesus

Cheesus

Senior Member
Messages
1,292
Location
UK
Around 4 years.

All of this cumulative suffering is the responsibility of people who have held back scientific enquiry. I hope they understand that one day.

Hopefully those who have not yet been suffering decades and those patients of the future who have not yet become sick will never have to face the prolonged decades in the wilderness that has been the fate of so many.
 
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lauluce

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
Cheesus said:
Around 4 years.

All of this cumulative suffering is the responsibility of people who have held back scientific enquiry. I hope they understand that one day.

Hopefully those who have not yet been suffering decades and those patients of the future who have not yet become sick will never have to face the prolonged decades in the wilderness that has been the fate of so many.
Click to expand...
I dream with that... the sufferer who tells his kids: "once upon a time there where no diagnostic test or treatment for my disease, you where mistreated by doctors, the government, your family, and people in general, it was hell for the sufferers" "luckily, now's just a blood test and this pills" -takes his pills-
 
D

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Nine years and counting. Gradual deterioration over that time. Not yet housebound but I feel much better if I don't have to go out (except to potter around the garden!). No remissions but slightly relapsing/remitting on the gradual downwards slope....

Interesting to read that the most common trend seems to be for slow deterioration...
Come on Fluge and Mella!
 
C

Christian Godbout

Messages
27
16 years, the last 4 being the worst.

I see reason to hope when I look outwardly at how science and awareness are progressing, but I can't feel this hope when I consider how my body is so stubbornly stuck. For that, I have to trade hope for resilience, toughing things out, courage, etc. Virtues that don't always come easy…
 
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