Where did everyone go??

[vortex]

It seems like the amount of posts and traffic in here has really slowed down over the past year.

Have people abandoned the methylation protocol?
Are they Cured and moved on with life?
Went somewhere else like fb group or something?

 

[NotThisGuy]

good question.....

 

[Murph]

a very similar website to this one started up.

the reason why is kind of a long story and I know nobody wants this thread to turn into a rehash of them all.

Now two separate but very similar sites chug along. This one still has much higher user numbers and much higher new user sign-ups, as well as a much bigger base of content. However some of the most vigorous users are now on the other, smaller site, so it has a similar level of day-to-day activity (albeit less diversity of opinion as active user numbers over there are lower).

Suffice to say we were all better off pre-schism when we had one big site instead of two medium sized ones!!

 

[Learner1]

I'm on a substantial methylation protocol, which has helped a lot.

 

[Cort]

Suffice to say we were all better off pre-schism when we had one big site instead of two medium sized ones!!

Agreed. It's really a shame when this community in particular gets split. Phoenix Rising will rise again, however. It's gets many new members every day. It will just take some time.

 

[Learner1]

There are over 20,000 users here. Small in the scheme of how many people worldwide have ME/CFS, but still a significant number.

 

[5150]

good question.....

It's been a long hard winter. Flu season is still here. I would like to think that those with this damned disease are still holed up, avoiding crowds, tending to immune & insomnia problems, so as to have a better opportunity to improve in the warmth of spring and summer. That's what i'm doing.

Still checking in on PR... although it's really getting to be a long time since all this disease crap started and I don't know of anybody " recovered". Yet we are told Never Give Up. But the people who control the money are not getting it done (yet)? My perception of politics is at an all-time low. Congress needs to fund the work ! private organizations can't do all of it. God bless our doctors who know enough about this horror and try to help. Maybe med schools could teach CFS / ME in there? So few doctors who know much of anything about it.

ok,never give up... I am still trying that : )

 

[lafarfelue]

Yea, what @Murph and @Cort said. Not finding it too bad though.

 

[Misfit Toy]

Yes, I have thought this, but knew where they went. Sad about it. Some good people are over there more than here. I forget to go over there.

 

[Wayne]

Suffice to say we were all better off pre-schism when we had one big site instead of two medium sized ones!!

I don't look at it that way at all. I think Phoenix Rising has become a far gentler and safer place to discuss a broad spectrum of topics that relate directly or indirectly to CFS. The current traffic may be down from what it was, but I don't look at that as a negative.

People who are drawn primarily to the science about CFS, and have more of a prediliction to debate it will likely be more drawn to the other forum. However, I think people new to CFS who are looking for a supportive forum with both heart and science will be drawn here.

It seems to me having two fairly distinct choices is a good thing. Especially since having one forum with divergent perspectives on what should and should not be allowed to be posted didn't work out so well for the past 2-3 years.​

 

[Daffodil]

Id like to check out the other forum(s) but brain fog prevents it. Can handle only one

 

[rel8ted]

Agreed. It's really a shame when this community in particular gets split. Phoenix Rising will rise again, however. It's gets many new members every day. It will just take some time.

Some of us can't get on the other site even after asking for and being promised help. Completely lost interest now. I am very pleased to be at PR

 

[Ema]

Especially since having one forum with divergent perspectives on what should and should not be allowed to be posted didn't work out so well for the past 2-3 years.

Amen to that.

 

[Alexi]

I’ve no idea what “other” site vies for members ?

 

[IThinkImTurningJapanese]

I am very pleased to be at PR

I hope you find something from other's experience here, that will help you with improving your quality of life.

 

[Skycloud]

I look in on both Phoenix rising and Science for ME forums regularly. I'm spending more time on the other at the moment as there are interesting developments on PACE and refuting BPS front and good detective work being done that will in my opinion make a difference. The sciencey discussions, which have a lot of contributions, can be over my head, but I've found it ok to ask 'stupid questions'.

I don't see a difference in support if you need it.

Some of us can't get on the other site even after asking for and being promised help.

This sounds weird. How did you ask for and were promised help if you can't get on there?

Phoenix Rising has a bigger depository of useful info on it's site that it's members have accumulated over the years. I'd say there are knowledgeable people on both.

I don't know anything about other forums.

I’ve no idea what “other” site vies for members ?

It's not a competition, there's no problem belonging to either or both if that's what anyone wants to do. There are other forums too, I think, I just don't know anything about them.

edit to add - I was forgetting Health Rising, so that's 3 I know about. Also edit for clarity

 

[Thinktank]

It really has gone quiet on PR, i still visit this website multiple times a day, but perhaps it's time to move over to the new forum where the most prolific members are.

 

[Seven7]

WEll is getting redicoulus, 3 ME forums for me ( PR, HR, S4ME, Dinet.org, prohealth.....) I ahve 3 autoimune diseases try to keep up with. About a second time job is my health and add trying to keep up with the info.

So I post less trying to read more.

 

[pamojja]

Beginning of last year when joining PR every day when checking for new posts most of the time there where about 5-6 pages full of 'recent posts' I haven't seen. Now it's about 2-3 pages, and I spend much less time scanning, but actually reading.

Once every week or so I head over to the new forum. But haven't seen even one thread there not found here, where I had the urge to sign up for being able to post there too. It seems for me all those threads I formerly scanned the titles only, and rarely read, are now there.

Where did everyone go??

Very few left, but those few seemed to have created about half of all new threads here in the past. The vast majority is still here reading, but it seems it's those who always been less posting, or make their voices heard.

 

[nanonug]

Have people abandoned the methylation protocol?

Speaking for myself: the "methylation protocol" doesn't do much. Taking a good multivitamin and some TMG is all I need.

Methylation is important (for everyone) and it can be addressed if there are specific deficits. But it is, I'd say, far from making a dramatic difference in people with SEID. Other things have proved much more useful to me.