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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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PAIN: FIVE OUT OF SEVEN

I recently read that FIVE out of SEVEN diagnostic criteria outlining ME CFS include PAIN. It boggles my imagination that Phoenix Rising Forums do not address PAIN. We still have XMRV in the forum section, but not PAIN.

I think this is a problem that Phoenix Rising should address. I think this is a priority.

Although I tested positive for the lab contaminant XMRV, I don't think we even need an XMRV Forum any longer. (IMHO)

I do live in PAIN everyday as do so many others here. I would like to know how other people are dealing with this. PAIN is so central to this disease. I feel like we could all benefit from the opportunity to share and learn from each other. That's what PR does best!

I would love to see this Phoenix rise from it's ashes and address this important issue. I love and support PR but not having a PAIN forum makes no sense to me. If there is a good reason not to have a PAIN FORUM, then please share it with me. I can think of Five good reasons to have one!

Please like this post so that the administration can get an idea of what people think.

Thank You.
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Reactions: lisann, anna8, Starfive and 3 others

Comments

heapsreal
Agree, pain and sleep need a seperate forum. I think they have had sleep forums in the past but someone end up getting merged with general treatments.
 
S
Pain is certainly central to my suffering, as many others yet I wondered many times why folks here were not talking about it. A clearly noted Pain forum should be created.
 
U
Phoenix Rising did have a pain and sleep forum at some point but it wasn't used very much.

The 'Symptoms" Forum covers: "Sleep problems, pain, difficulty standing, rapid heart beat, blood pressure problems, flu-like symptoms, fever, irritable bowel syndrome, vertigo, cognitive problems, sensitivity to odors, lights, sound, clumsiness, disorientation, perception problems.".

Perhaps, if this conversation was posted in the 'Moderation' Forum, there could be a better discussion with more input.
 
Xandoff
Kina,

I don't believe grouping pain in with other forums is helpful to the spectrum of us for whom pain IS so central to. I will happily agree to disagree with you. Perhaps there are not many to respond to a call for a pain forum because they have gone somewhere else for this information? There is nothing here that allows us to talk about pain and treatments in a cohesive and comprehensive way. No way to share and message. I don't really understand the resistance to a pain forum? Like Starfive, and I am sure many more, pain is Central to my illness. Pain is in five out the seven criteria for ME.

If someone else wants to post this in the moderation form, Please have at it. Five out of seven is a damning statement.......nothing more needs to be said. PR please (pretty please) open your eyes.
 

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Xandoff
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