• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Spreading the word - other ME/CFS forums

Messages
2,125
Adding more as I find them:
https://healthunlocked.com/edmesh

this is another on healthunlocked:
https://healthunlocked.com/meandcfssupport

think it would be very good to get a presence on healthunlocked as there appear to be a number of non UK orgs(non ME) up there as well.
@Mark ?

Edit: I would also like to suggest posting a link to #MEpedia on any sites people visit, whatever you think about it, it's got to be better than the WIki version as far as correct info on ME is concerned.
ETA: I'm done with this now.............if anyone wants to take over fine by me.
 
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worldbackwards

Senior Member
Messages
2,051
And this is where the internet turns back on itself. We're famous!

https://www.reddit.com/r/cfs/comments/5f29n6/thoughts_on_the_phoenix_rising_forum/

Lots of fixations on "quack treatments" (I usually ignore most things about treatments anyway. There's a whole other PR I never see). And a couple of amusing quotes:
Not the friendliest community around however there is some good advice on there, just be careful of some of the slightly unpleasant and strange users of the forum.
Yes, there are some really nasty people on there. I was just looking there this morning, and there were some really nasty and sinister posts from a certain poster on one recent thread. This reddit can have some nastiness, but it's nowhere near as bad a PR.
I hope it's me!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Doesn't this idea smack slightly of colonialism? That we presume to know more/better information and must pass it around to the poor masses?

On another note, I spent a lot of time on one of the above mentioned forums, before I came here. It was a lovely, small, friendly place full of lovely kind people who brought into some of the BPS stuff - because of that I ended up having to leave and landed here. When I came to these shores I found it a large, bewildering, slightly hostile territory, but eventually found the natives to be friendly if you put a lot of effort in.
 

worldbackwards

Senior Member
Messages
2,051
some people are even arguing that forums are dying, I hope not.
I think a lot of forums are dying and being replaced by T******/F*** *** and it's a real shame - I like the idea of a small community that isn't lining someone's pockets, and catering to interests outside the mainstream without someone butting in and leaving you a nasty message.

But I don't think that PR will go away for a long while; it offers somewhere safe enough for people not to have to worry about being attacked for being ill, and slow enough that you can leave it and come back later and you won't have missed that much. All in all, it functions as safe space, community, help desk, news desk, rant space, etc, etc. And it has a captive audience: we really aren't going anywhere. If PR didn't exist, it would be necessary to invent it.

If PR were going to die, I think it would be like Freddie Kruger or Jason or something - you'd think it was dead, but it would always come back for one last scare.

Doesn't this idea smack slightly of colonialism?

"Reddit users to the southwest, sir. Thousands of them!"

iu
 
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2,125
2009 MEA website
"
Internet forum offers tranquil support for people with ME/CFS
The co-ordinator of the ‘Phoenix’ internet forum has been in touch to request that we publicise this forum once again and invite people to join. This item will be held in place only until midday on Thursday, 6 August, as ‘Phoenix’ is only able to welcome and get to know a small number of applicants for membership at any one time.

Members have been ‘talking’ to each other quite happily for the past five or six months, and Phoenix Rising now invites other people with ME/CFS to share their joy at being able to open up to each other in a friendly, non-judgemental way. Only friendly and non-combative members will be welcome."
 
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13,774
Only friendly and non-combative members will be welcome."

Oops. That was before I joined. I'm only combative in a friendly way!

I think it's good to have a wide range of people posting different ideas about things, but also to try to have it normal and okay for everyone to challenge one another, and point out when they think mistakes are being made. I'm sure we could be better at that, but PR does pretty well imo.

I think that new members can find it a bit 'hostile' if they turn up with a minority view and suddenly have lots of people challenging them in a way they're not used to. I think that if people have lurked a bit and seen that it pretty normal for everyone to get challenged on things then they're less likely to take it personally.
 

wdb

Senior Member
Messages
1,392
Location
London
2009 MEA website
"
Internet forum offers tranquil support for people with ME/CFS
The co-ordinator of the ‘Phoenix’ internet forum has been in touch to request that we publicise this forum once again and invite people to join. This item will be held in place only until midday on Thursday, 6 August, as ‘Phoenix’ is only able to welcome and get to know a small number of applicants for membership at any one time.

Members have been ‘talking’ to each other quite happily for the past five or six months, and Phoenix Rising now invites other people with ME/CFS to share their joy at being able to open up to each other in a friendly, non-judgemental way. Only friendly and non-combative members will be welcome."


At the bottom of the article,

NB: This forum has no connection with Cort Johnson’s Phoenix Rising website in the United States.
 
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2,125
I'm not on Twitter or Facebook. Any South Africans on PR?



ME CFS Foundation South Africa:
ME/CFS Facebook support group:


Send an email to info@mecfssa.org to join our online support group.

Please note that the support group is classified as a ‘closed’ Facebook group, in other words it can only be joined by invitation and the content can only be viewed by members of the group.
Help us spread the word
Please like and share our Facebook page, and follow us on Twitter (@mecfs_sa).
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
This is a great resource, does anyone have the ability to update these forums re the last day of the UK stopGET petition? Eg @slysaint @justy @Barry53

We're sharing wording like this

Or
Or