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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 idea of 'choosing' to be where you are at - if you are in a bad place - is certainly counter-intuitive; our natural instinct is to struggle against it but I think it makes it worse. Sometimes its not the problem but what we say about the problem that makes it so emotionally difficult. Altering how we are oriented to the problem - are we reacting to it? Or are we making a conscious choice to accept it - to let it be - is definitely tension relieving and helpful. I think this is particularly true with pain - research has shown that negative emotions can really increase the pain experience. Far better, if you can, to be in the midst of the situation and not react to it as much as possible - its definitely not easy for sure, its something I'm always kind of working on.
I can see from CBS's avatar that he was really perturbed at what was going.
To me it seems the way forward can hardly be to prove that they are providing bad work (even though we should do it, if we really can) but for others like the WPI, Dr. Bateman/Singh, Dr. Alter etc. to prove the XMRV/CFS connection, if it exists.
Don't prove that the others don't want to find it, prove that it's there by finding it yourself.
Several attendees before me stated that they were grateful for CFS as it had taught them lessons about themselves that they would have never learned otherwise. Then it was my turn. CFS was the last thing I wanted in my life. I introduced myself and said that I couldn't feel more strongly that for me, CFS had been a disaster on a number of dimensions and that whatever lessons I was supposed to be learning, there was nothing I could not have learned in some other less catastrophic manner or that there were "lessons" that were in no way shape or form, this important.
I just think the idea of 'stopping resisting' and stopping railing against the way things are - as difficult as it is - is very helpful - its healing (without being curative, unfortunately!). If you're going to have a chronic illness why not work on having as high a quality of life as possible? It is work but it does help.
In that awesome photo I see you as the horse in the middle rising up on two legs.