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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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Action for ME conference being livestreamed now, Thurs 2 Nov
- Thread starter Sasha
- Start date
worldbackwards
Senior Member
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- 2,051
There's a written report for this here:
https://drive.google.com/file/d/0B7UzrU_BPprNZmdMVHlhZ0hIZG8/view
I hope to read it once the steady stream of ME articles coming in on a daily basis dies down.
https://drive.google.com/file/d/0B7UzrU_BPprNZmdMVHlhZ0hIZG8/view
I hope to read it once the steady stream of ME articles coming in on a daily basis dies down.
- Messages
- 1,446
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I doubt the written report from AFME will mention either AFME's invitation of the Ancestor Healing Company to their AGM/Conference, or mention that they banned a long term AFME member from attending the AFME AGM, on a whim from the CEO. Overiding the Charity Member's legal and Consitutional rights to attend the AGM.
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So, Ancestor Healers are IN at the AFME AGM Conference, but legitimate AFME ME patient Charity Members are Out.
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I doubt the written report from AFME will mention either AFME's invitation of the Ancestor Healing Company to their AGM/Conference, or mention that they banned a long term AFME member from attending the AFME AGM, on a whim from the CEO. Overiding the Charity Member's legal and Consitutional rights to attend the AGM.
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So, Ancestor Healers are IN at the AFME AGM Conference, but legitimate AFME ME patient Charity Members are Out.
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Esther12
Senior Member
- Messages
- 13,774
Anyone know if they addressed the PACE stuff?
worldbackwards
Senior Member
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- 2,051
It's all about social care. You know full well she wouldn't touch it with a bargepole anyway.
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"Anyone know if they addressed the PACE stuff?"
Pigs were seen flying in the vicinity of the AFME AGM/Conference.
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"Anyone know if they addressed the PACE stuff?"
Pigs were seen flying in the vicinity of the AFME AGM/Conference.
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Esther12
Senior Member
- Messages
- 13,774
Didn't think that they'd be keen to delve into it, but they are meant to be loosely connected to the concerns of ME patients. I'm surprised no-one in the audience raised it.
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- 1,446
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I have attended one AFME AGM/Conference. The questions from the audience are restricted in time, and awkward questions are hurridly sidestepped. The one I attended was a nightmare of bright lights, heavy doors in the building, and 'round the table discussions' between the delegates, basically chats that sent the loud echoing sound level to damaging levels for people with ME.
But the attendees wanted more 'round the table discussions' and no more questions to the panel..
I didn't. I wanted questions to be asked of the ME Observatory researchers on the panel. A handful of attendees wanted that, but not the majority. It was an AFME conference after all, awkward questions not welcome.
Never again. It was physical and cognitive/sensory hell. And the important questions weren't allowed.
I did encounter a woman at the conference who assured me she had "cured her ME by meditation and pacing - you know pacing - finding your baseline and gradually increasing your activity"
When I said that's not pacing, that's graded activity, she had a bit of a hissy fit and told me I had made her 'shake' with my nasty "arguing" about what is and isn't pacing.
.It was an AFME Conference after all, what could I expect. Not worth it, to be totally flattened for the next two weeks.
I have attended one AFME AGM/Conference. The questions from the audience are restricted in time, and awkward questions are hurridly sidestepped. The one I attended was a nightmare of bright lights, heavy doors in the building, and 'round the table discussions' between the delegates, basically chats that sent the loud echoing sound level to damaging levels for people with ME.
But the attendees wanted more 'round the table discussions' and no more questions to the panel..
I didn't. I wanted questions to be asked of the ME Observatory researchers on the panel. A handful of attendees wanted that, but not the majority. It was an AFME conference after all, awkward questions not welcome.
Never again. It was physical and cognitive/sensory hell. And the important questions weren't allowed.
I did encounter a woman at the conference who assured me she had "cured her ME by meditation and pacing - you know pacing - finding your baseline and gradually increasing your activity"
When I said that's not pacing, that's graded activity, she had a bit of a hissy fit and told me I had made her 'shake' with my nasty "arguing" about what is and isn't pacing.
.It was an AFME Conference after all, what could I expect. Not worth it, to be totally flattened for the next two weeks.
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