It’s finally happened. The Health Rising ME/CFS, Fibromyalgia and Chronic Pain Forums are open for business.
The Health Rising Forums are here!
We (Stavya and I) actually started working on them well over a year ago.ย Why did it take so long? We scoured the market for ways to improve the Forums and settled on some add on’s that were and still are under development. Plus putting together a complex package like this takes time.
If it was not for Stavya, who quickly turned out to be an ace on the technical side, they never would have happened. But here they are.
But why, with my old stomping ground – Phoenix Rising – thriving why build another Forums? That takes a little history.
Some History (skip if you’re not interested)
I started Phoenix Rising in 2004, added the Forums and then turned Phoenix Rising into a non-profit in 2010. The Forums turned out to be a huge hit, but after conflicts with PR’s small Board I left in Dec. 2012, and started Health Rising.
I considered using PR as my Forum base, but after I was informed that all my posts and private messages would be moderated and I would not be allowed to link to my new site, a new Forum package became inevitable.
Establishing another Forum with a big Forum like PR in town might seem a little crazy. Big Forums, after all, have a inertia all they own. They’re like black holes sucking everyone around them in. So why try?
Because I love Forums. They’re fun and they’re exciting. (Two years later I’m still in the top ten PR posters). They’re good for the blog (and vice versa). I was also never satisfied that Phoenix Rising embraced the opportunities that modern Forum packages present. Almost two and half years later that’s even more true now. Plus there are no busy fibromyalgia forums that I can find. If you have fibromyalgia you don’t know what you’re missing.
We’ve made it easier to find information
So Stavya and I set out to build the best Forum we could. One in which it was easier to find information. Forums are great at pulling information in but they’re not so good at making it accessible. We wanted to reduce the clutter and increase yourย ability to find information.
Our guess is that youโve never experienced a fully โrealizedโ Forum โ that youโve never participated in a Forum like ours before. (We’re not finished – the next step for our Forums is going to blow your mind. )
Since Phoenix Rising is our biggest competitor let’s compare the pluses and minuses of the two.
Phoenix Rising
- Longevity – Been around for five years.
- Focusย – narrower focus – focused entirely on ME/CFS.
- Size – Huge post archives.
- Reach – Great engagement andย dedicated community.
- Experience – ย they’ve ironed out the wrinkles.
- Multiple Theme Styles
Health Rising
- New – startup forum.
- Focus – broader focus – focused on ME/CFS, fibromyalgia and chronic pain.
- Doctor Reviews– easily find doctors in your local area.
- Treatment Reviews – easily find reviews of treatments ย and treatment protocols you’re interested in.
- Recovery/Recovering Stories – easily find recovery stories of all kinds. (I have about 70 more stories to add).
- Key Resources – easily identifiable key resource section. (Posts from each of these sections – the Review, Recovery stories and Resource section – ย are automaticallyย embedded in the appropriate Forums)
- Clinical Trials ย – easily find clinical trials in ย your area. (I am still inputting clinical trials).
- Video’s – Easily find treatment, research, personal stories and even humorous video’s in our video section.
- Bookmarks – bookmark important posts and easily find them again.
- Multiple Theme Styles – including one for the visually challenged
- Prohealth Store –ย Prohealth gave back $35,000 to the community last year.
- Caregivers Forum – caregivers have a private place to communicate.
- Social Media – on the top and bottom of each thread.
It took work to get the Phoenix Rising Forums off the ground, but when they did, they took off.
I’ve trawled through some of the biggest Forums on the web and the Health Rising Forums are amongst the most feature-rich I’ve seen.
There’s no denying, though, that getting a Forum off the ground can be hard. It can be like asking a pig to fly. It takes time and work – people posting and postingย and postingย – to build the momentum needed to grow a Forum.
Despite it’s current prominence, the Phoenix Rising Forums were, in fact, not easy to establish. Some dedicated posters and some hot news items eventually turned things around, and when the Forums caught on – they really caught on.
Please join us on the Health Rising Forums!
We’re going to do everything we can to draw people in, but the key is people posting and posting and posting. ย We appreciate every post you make and we invite you to help us build these Forums. It is going to take some time.
You can find Health Risingโs ME/CFS, FM and Chronic Pain Forumsย hereย and learn more about some of itโs featuresย here. We are looking for moderators and technical support and are open to suggestions.
We’re ironing out problems as they show up. Breakdowns are expected as we gear the Forums up. Please be patient.
Thanks for listening. Hope to see you on the new Health Rising Forums.
Notes
- If you don’t get an immediate confirmation email your registration has gotten hung up and we will fix it. We can see registrations that is occurring to.
- If you have an IPAD and fill out the registration form and click on Register – it tells you nothing! ย You have been registered, though, and should get a confirmation email.
Health Rising people really seem to have a different mindset than Phoenix Rising… It’s gonna be interesting.
Looking foward for the forum.
Good luck!
Damn that part on reviews it’s gonna be amazing
Thanks Folk!
This is great news! From the description, it looks like Health Rising will really have a lot to offer that you just won’t find on PR. You guys are the best! TY for your incredible efforts.
It’s taken an amazing amount of work to be honest!
Without Stavya – who bounced into Health Rising about a year and a half ago none of this would have happened. He’s fighting ME/CFS as well. He’s been the essential piece and it’s been great to partner with him…
Thanks so much Stavya and Cort. From what you said once Cort, this would also not have been possible without the support of your father so a huge thanks to him too. I don’t see the Henderson address – am I missing it or is the Mayer address still ok to send donations?
Yes, indeed. My father has just been incredible. I am so lucky….
I am leaving Arizona at the end of the month and will be back in Nevada – at a different address (in Henderson).
Health Rising c/o Cort Johnson
2555 Hampton Road – Unit 6308
Henderson, NV 89052
Thanks ๐
Cort- Thank you , Thank you, You have already made a difference in my knowledge that people do care about other people.
Once I was able to get into blog and new format , I love it.
Had DEAD BRAIN- yesterday .:)
Keep on-Keeping on.
The man who saw Dr. Klimas and has recovered was touching and made me cry.
I have always said at my sickiest to everyone-if you don’t do some sort of exercise you are going to DIE and never
recover. I also do Yoga when I can.
Thank you again.
Carole
Cort
You’ve done it again!! Thank you and kudos, kudos, kudos…
I encourage everyone to sign up!! and for those newly diagnosed…read slowly and give yourself time to learn the site – it’s truly user friendly. and the forum has older important stuff and new breaking info, research – and what works for each individual personally. And you are not alone.
Because it has more options it will take more time to learn it but ultimately it will be easier to find all sorts of information that tends to get buried in most forums.
Thanks for the encouragement ๐
When I attended OFFER Utah’s conference back in October, one of the best break out sessions was for caregivers. There is a need for private forums for caregivers to give us a chance to problem-solve and troubleshoot with peers–even just for moral support.
As we approach the first anniversary of my daughter’s diagnosis, I am less naive than I was a year ago, having seen both the positive and negative sides of the patient community. For this reason, I am wary of forums.
I hope this comparison isn’t sacrilegious, but I have come to see the differences in the patient/advocate community, in my mind, as similar to the differences between Martin Luther King and Malcolm X when approaching racism and civil rights. Both men had similar goals (not entirely congruent) but different approaches. As a caregiver for a moderately severe adolescent ME/CFS/SEID(?) patient, I have too much stress, too much grief, too much anxiety and fear to add anger and virulent, militant bitterness to my life. I have been reluctant to be vocal in the patient/caregiver/advocate community because I am not interested in joining in civil wars and internal backbiting. I want to save my energy for the battles against the real enemies and obstacles.
I hope, Cort, that HR Forums can find a balance among participants between lively conversation, healthy/respectful disagreement and constructive tensions that move our causes forward. HR has been a great resource for me and has given me a lot of ideas that have helped me help my daughter. I hope the forums can be a similar resource.
Thanks Heather
The Forums will follow in the spirit of Health Rising and will be focused on constructive conversation. This
“can find a balance among participants between lively conversation, healthy/respectful disagreement and constructive tensions that move our causes forward”
is exactly what I want and I think I’ll use it in our rules section – if you don’t mind ๐
Thank you very much for that attitude. I fully agree with Heather. I just cringe when I read some of the things posted on some Facebook groups, which are so militant and antagonistic toward others who view the ME/CFS advocacy process as a war in which we will not cooperate or surrender until every single point of our detailed views is acceded. I feel sad that we are held back by that.
However, I also know some of the reasons why. As an un-diagnosed patient trying to find a doctor in the NHS who does not view me as a person with a psychological or psychiatric disorder, or simply a bloody nuisance… well, it’s been impossible so far.
However frustrated and insistent I am that my illness is real and that I need a proper diagnostic process to sort out what I have and don’t have and which parts of it are Fibromyalgia and which are something else…. I still don’t intend to shoot myself in the foot by fighting with other sufferers or accusing doctors who believe in ME as a real biomedical illness of some of the things they are being accused of.
Real life demands real solutions and attempts to work with all who are generally facing the same challenges and have the same goals… proper research, proper diagnosis, treatment, care, and funding. It’s a huge package of needs, and it has been a long wait. We don’t need to scatter in all directions just when we seem to be making some headway.
I find this website to have a more business/science orientated feel about it than some others. The organisation of news and the latest articles seems easy to see. I like that. I like that there are two sections… one for ME and one for Fibromyalgia, and that you don’t wave Fibromyalgia sufferers away as though we are a different breed. So many people have both illnesses. I don’t like feeling disenfranchised by my own kind, if you will.
Thanks so much, Cort and Stavya for everything. I am looking forward to your forums very much!
Oh please use it if you think it will help ๐
I would love nothing more than some healthy give and take–pros and cons of various issues, treatments, approaches. I feel like healthy skepticism is good in any venue (and my daughter’s ME doc agrees).
Hooray!!!
Who is Stavya?
Stavya is a person with ME/CFS who lives in India who has taken care of the technical side of Health Rising for about a year and a half I guess. You can read more about him here.
I’m on an Ipad, when I click the Register button, nothing happens!
Darn – the IPAD – that’s a biggie. Thanks for letting us know – we’ll get back to you..
It turned out that the registration button was working – it just wasn’t giving any indication that it was working (lol). IPAD users! Don’t expect any sign – other than a confirmation email in your inbox – that you’re registered once you click on that button.
Oh my Cort, your energy (not a pun exactly) and dedication is truly inspiring. Thank you many times over for your site and now the forums. I have to admit that the short look I had was a bit overwhelming since I am limited in the time I can be at my computer without adverse effects.
I wish I could give more than $5 a month but I have to admit to pleasure when I see it come up on my Visa bill because I know it is the best bang I get for my buck in any spending I do.
So thanks again to you and Stavya for the work you do.
Margo
Thanks Margo – your contribution is sincerely appreciated. The recurring donations are what, more than anything else, is making it possible to do this. They are incredibly valuable – so thanks for contributing that way ๐
Thanks so much for all the hard and dedicated work. Anther great resource added to a great resource :)x
Thanks Helen ๐
Cort, I was with you at the start of Phoenix Rising (although it took me a while to get the confidence to post), so I’ll join in as you start your new forum.
I agree with Heather. What finally caused me to drift away from PR was the fighting, and wondering when I posted if I was going to get jumped on. I have so little energy that I’m not willing to waste it dealing with that kind of negativity. I was sorry to leave because there were some very nice people there, but I couldn’t take the drama.
I know that many people like forums with maximum freedom and minimum moderation, and I think it’s fine that there are forums like that, but they aren’t for me. It’s a difficult question, because there are issues about these diseases that people disagree about, passionately, and those topics should be discussed. How do you allow people to openly express their opinions on controversial topics, without allowing insults, personal attacks, or casting aspersions on people’s motives? I don’t know how you achieve that balancing act.
At the least, I hope the new forums will have a drama-free zone, a section for support and socializing only, where patients can share experiences about day-to-day life with these diseases in a supportive environment, without fear of being put down.
I wish you success with your new venture, and I’ll certainly give it a try.
Thanks Ixchelkali – its great to hear from an old Forum compadre…
It can be a difficult balancing act. We want full bore discussions but no personal attacks, no undercutting, no “meanness” and no question others validity…
HI!
I am looking forward with eagerness to the caregiver forum. My husband has been ill with ME/SEID for 5 years. It has been a challenge for us both as this illness has drastically altered our lives in so many ways. We both appreciate your constant supply of scientific information and hope! Cort, you & Stavya are incredible with the energy you are able to sustain dealing with ME & developing such a resource. Thank you VERY much!
Peg
Thanks Peg…We’ll be doing special call outs for caregivers. You guys have shouldered big burdens….
I joined PR but moved over to HR because once Cort left it just wasn’t the same . I am keen to be part of a group that supports each other and fights the real enemy. I was distresed and dismayed by all the negativity around the IOM’s proposed temporary name change ie as the panel stated one that fits until more bio medical research establishes a better one. I love the inclusion of fibro as it so often accompanies SEID.
It will be great to be able to find stuff more easily some of the oldies are goodies . Well done guys !!
Congratulations Cort and Stevya.
Looking good.
Hi Cort
Thanks for all you do and for the new forums. I registered today and my ‘name’ appeared at the top as if I was signed in. However, when I clicked on the link in the confirmation email as requested, I got the message ‘your account could not be confirmed’. I tried a couple of times but it happened again. I’m in the UK – does this make any difference?
Thanks for registering. Please don’t take this personally. We have this spam filter hooked up to the registration process that is way too sensitive. It appears to be holding up about one in ten people from registering – including some people I know very well (lol). We’re manually okaying everyone who gets stuck there and we’re going to try to fix that filter.
Thanks Cort – I’ll keep trying to get in to see if I’ve been okayed. At no time did I think it was personal. Every new system has glitches! Thank you – and Stevya – for giving us this wonderful resource!
Christine (Tonto)
link to forum isn’t working and are you going to let only hurray-comments pass there too?
apparently; yes ;-))
and you’re welcome
Apparently not ๐
hurray!
whoopsclickedtoosoon
just ignore moi ๐
(open link in new tab does work btw, odd!)
Where in the forums would one put things about raising awareness? Eg May 12th, Aug 8th, contests (they raise awareness, presentations, conferences.
Thanks
Good question from YOU – May Twelfth ๐
For now everything will go in the Advocacy, Contests and Events section – ( I just created it :). It’s in the News section – http://cortjohnson.org/forums/forums/advocacy-contests-and-events.90/
As traffic picks up we’ll probably split that out into separate Forums
Just subscribed (hopefully) – one bug: I tried to read the Terms & Rules, but was told I didn’t have permission to view the page…
Cort your excitement is contagious I’m so looking forward to reading current news on fibromyalgia. You’re right, forums for fibromyalgia are sparse and the ones that are out there are a nest for complaining. Your gift for writing the latest news in a way the lay person can understand it and getting it posted on HR before it even hits the New York Times is impressive ๐ There is a lot we are missing about fibromyalgia but I bet that won’t be the case with you on the job!
I am also very pleased about a forum for caregivers I asked my husband if he has anyone to share his thoughts about the huge weight he carries in the marriage because of my illnesses. He said there is not. This should turn out to be a big success. Thank you for making life a better place by keeping us connected to all the info we would otherwise not know about. Bless you.
Appreciate that very much Judi :). I look forward to seeing you and hopefully your husband on the forums ๐
You must have two things occurring – back pain gone and diagnostic tests are negative. Then you have completely removed your back pain. As I said, lower back pain relief doesn’t work. I can only urge you to find the cause and remove it. If you do this, you will relieve back pain, you will eliminate it and you will prevent it returning.
https://www.mybackpaincoach.us/