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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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What sort of circulation does the JoHP have? Not numbers, but "demographics". Do copies go into doctors' surgeries; hospital staff canteens; ambulance staff crew rooms; medical school libraries; etc? Would be fantastic if this special issue found its way into some of these places. and help break the deadlock.
I suspect that us and our charities getting behind Dr Myhill's campaign and taking ownership of it would be a much better use of our energy.This, to my mind, is an interesting thought. No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them but I think it could be of some use to accumulate evidence for this.
I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.
Opinions on Dr Myhill are far too divergent for that ever to happen.I suspect that us and our charities getting behind Dr Myhill's campaign and taking ownership of it would be a much better use of our energy.
Somewhat ironic when they can't COPE with reasonable questions.I presume the Sharpe reply to Geraghty that everyone else is now responding back to. It really is pathetic that whenever the PACE people are criticised they go crying to mummy or the critic's employer or some committee or other. What they never do is answer the questions posed to them.
It appears that COPE is Coordinators of Psychiatric Education - the headmaster's study no less!! What sneaks.
I suspect that us and our charities getting behind Dr Myhill's campaign and taking ownership of it would be a much better use of our energy.
My MP and GP both for startersIndeed. Could be useful elsewhere I suspect.
Note I said take ownership the position is very simply to demand a public inquiry so that things may be properly looked at out in the open air. That means is being 'our demand' for a public enquiry us, our advocates etc, not just that of a lone wolf.I don't agree. I think getting behind on persons position would be a mistake and I don't think we could 'take ownership' of it. Better we do for ourselves and ask those who support us/are our advocates to stand with us.
Any idea when hard copies with arrive? I ordered by post with a cheque. Guess I'll just have to be patient.
Mine arrived today. Phone order on credit card.