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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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NO PAIN (FORUM) NO GAIN

“Why not go out on a limb? That's where the fruit is.”
― Will Rogers

It seems PR does not want a specific Pain Forum in spite of the fact that FIVE out of SEVEN diagnostic criteria used for this illness spell out pain as a primary complaint. Can anybody, moderators, peeps, folks tell me any good reasons NOT TO HAVE A PAIN FORUM at PR?

If you surf through all the topics and conversations on this site, pain comes up quite a bit. There is an LDN forum. LDN mostly helps with pain. Phoenix Rising needs to go out on the limb.
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Xandoff
Yes I did and posted it in the Moderator's forum. They were going to give me answer yesterday but I haven't heard yet. I hope you got to watch the youtube video on ME and Pain by Dr. Kenny DE MEIRLEIR. He talks about the body not being able to release bacteria and other mitochondrial issues and pain. Thank you for your post. I know Pain Rising needs a pure PAIN FORUM, it could really help all of us. This is a spectrum illness. Pain is in 5 out of the 7 diagnostic criteria for this illness. If they decline to sponsor a Pain Forum as is their right, I hope to hear the rationale. I am not saying this in a snotty way. I am really curious!
 
Xandoff
Please find this link to Dr. Kenny De MeirLeir on ME and Pain at Youtube.

http://www.youtube.com/watch?v=3X5yl1MO0jM&feature=share&list=PLsQ0FZQ_5JXQPVDLmt1EOgOlf2PAg6TFW
 
Lotus97
If we're going to go down that road, what about a forum specifically for adrenals and thyroid? And maybe making methylation a separate forum from detoxification. Maybe detoxification/mineral supplementation. Just because a lot of people here have pain issues (myself included), is there enough topics to generate discussions? I don't really have an opinion one way or another. I'm just adding some perspective.
 
Xandoff
Lotus97,
For the life of ME I just can't quite figure out just what you mean when you say since we are going down that road.....what road or roads do you speak of? Please be clear. Thanks
 
Lotus97
I'm just saying that there are a lot other things that could be changed about the forums besides just adding a pain forum.

If you haven't already done so, maybe you could start a thread with a poll asking to what severity and/or frequency people experience pain.
 
Xandoff
Lotus97,
5 out of seven diagnostic criteria specify PAIN as a hallmark symptom of FM/ ME .....I think that puts pain in a different light. The absence of a PAIN forum in view of the diagnostic criteria is purely illogical. Sure there are a lot of things that could be changed, but I am talking about the omission of a Pain Forum and the potential to benefit from shared information regarding Pain and this spectrum illness. Take Care Lotus97!
 

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