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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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Thanks Willow.
[Orla - this "explanation" of ME/CFS is very similar to the "catasrophic thinking" and misinterpretation of bodily sensations" view of the CBT school on ME/CFS. Bascally we are thinking ourselves "sick" when there is nothing organically wrong with us. In LP you are obviously not suposed to Pace, as that would involved a degree of planning based on assessing likely reactions to certain activities, including bad reactions. But in LP they are saying that we don't have an organic disease causing a bad reaction to activity, we just think we do, and it is this thinking that is causing our symptoms.
So with LP we are supposed to stop thinking "negatively" about our possible bad reactions to activity. Basically, if we stop worrying about how we might react badly to certain activities, or the amount we do of activities, and apply the process, we will be fine and we won't have a bad reaction. Of course one argument against this is that most people will have done this at some point in their illness. This will be either in the early stages when they didn't make a link between activity and feeling bad, but the activity still caused them to crash, or when during a good patch a person with ME/CFS might think some activity is going to be fine, so just go and do it, but they end up feeling bad afterwards, even though there was no negative thinking or catastrophic worrying involved.]
Back to Berit and her recovery, I'm just sorry that after suffering for 13 years and (with a cardiologist husband) clearly having the financial security to be able to cope with it better and try whatever treatments she wanted she sees fit to charge sufferers $1500 for 3 days LP training. In addition, knowing how variable symptoms can be she is not refunding any of the $1500 if people cancel within 10 days. I would have thought she would have more empathy with fellow sufferers after 13 years - i know I would.