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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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Yes, it seems to me that our disease, more than most other diseases, allows many of us to experience periods of relative health in which we may not signal any particular "illness behavior" (assuming we've been practicing "illness management"). For example, I am able to go to work a couple of hours most mornings, socializing fairly normally with my co-workers who have no real comprehension that I will, afterwards, have to spend much of the remaining day recovering.I think that having one foot in both camps is probably a reasonable way of continuing to exist rather than treating yourself as fully recovered and that ME/CFS is no longer relevant in your life.
If you still need illness behaviour to be able to function then you haven't recovered ...
I would say though that I would change the run for a night out in the pub with a walk back homeThe day I am recovered is the day that I can do 8 hours of work then go out for a run.
I would say though that I would change the run for a night out in the pub with a walk back home
That's "old thinking", you still have to get used to the fact that when you're recovered you no longer have to make these kind of decisions, you can just do bothI would say though that I would change the run for a night out in the pub with a walk back home
This is sociology. More like philosophy than science.
What is probably different about me from these participants is I didn't get involved in the ME community in the initial phase. Groups seemed depressing, this forum didn't exist and neither did Twitter. I didn't then have the feeling of not fitting in anymore as I was doing better, but I did have the feeling of not being the same as well people.
Didn't read more than the abstract but the bold part here is just more correlation = causation bullshit.With apologies to PR and other forums, that fits in with the conclusion of this study:
"This cross-sectional study suggests that support groups for CFS are viewed as helpful by participants on a number of illness related issues. On the other hand, active members reported greater symptom severity and less illness improvement than inactive members or dropouts."
Didn't read more than the abstract but the bold part here is just more correlation = causation bullshit.
As I slowly became worse I had to scale everything back and that was when I started to engage with the patient community online.