Is PR interest waning?

[RyeRyeBread]

all I know is that on a personal level,
I am on here a lot when i have questions or concerns to share, new diagnoses or tests ordered, etc., and I'm here less when I'm just *waiting*

I'm not here at all when I'm really low energy, especially when none of the above is going on.

So, I'm sure thousands of others are probably the same way; here when higher energy or updates to share, gone when low energy or everything is stagnant (which for many of us can be a very long time).

 

[YippeeKi YOW !!]

I'm not here at all when I'm really low energy, especially when none of the above is going on.

I pretty much agree because, like you and probably many others, there are times when I just dont have the energy or mental bandwidth to be of any use to myself or anyone else on this site and I back away for a bit ...

But I startd noticing this slowing trend probably 3 or 4 months or so ago, a gradual general slowing that felt different from the other slowings I've noted from time to time in the 3 years I've been active here, with quite a few members mentioning other sites that they were participating in, none of which seem to me to have the depth of information or IQ generally displayed here.

And maybe that very depth is what's contributing to this, with potential members preferring a brief, more superficial glide thru input, rather than a lot of opinion, depth, and discussion.

I hope not. I love this site, and the wide diversity of input, knowledge, and diversion that it provides, unlike any other source I've found ....

 

[pamojja]

I quit regular posting when this then new rules came out:

To keep Phoenix Rising free of conflict and political disputes around COVID-19 and the
COVID vaccines, we ask that members only post information from peer-reviewed journal articles and news sources without a strong political bias.

Links and information from organizations which lack transparency or with a track record of spreading partisan conspiracy theories may be reported to the moderation team, who will remove them.

Because articles which just said what the CDC and Pfiser (the company with the highest criminal chaorge ever) now also admit (if one searches in depth) would be deleted.

ME/CFS patient don't have much energy to read anything than a little on PR. By allowing only one side of the discussion, which after 2 years of vaccination campain became even published by the 'official' sources, too many would be misled, with possibly tire consequences. I no longer can ethically support those PR policies.

Best wishes.

 

[YippeeKi YOW !!]

I quit regular posting when this then new rules came out:

While I agree with you about rules restricting what I can post, link, or say, particularly as they pertain to medical info, I understand why those rules had to be put in place.

Tempers were running hot and heavy in the early days of COVID, and the attendant hostility and anger that would have been generated by more relaxed restrictions could very well have torn this site apart.

It's just one of the trade-offs for maintaining civility in an abjectly uncivil world, I wish it were different, but it is what it is .....

 

[Marylib]

There has been literally nowhere you can discuss these things openly. Civility and compassion for all viewpoints is admirable and necessary. Peer reviewed articles and papers are very hard to find. Who reviews what? Who is considered a peer? All news sources have a political bias. All you need to do is find out who owns the media. It's like saying "We love the NIH." Who owns the NIH? Who owns the FDA? Political appointments by healthy wealthy people already rule the world. It's a sad state of affairs not to be able to discuss a virus and several vaccines.

 

[YippeeKi YOW !!]

It's a sad state of affairs not to be able to discuss a virus and several vaccines.

There are numerous threads here on COVID, the jab, various member's reactions to it, threads questioning whether getting the vaccine is safe if you have ME, etc. etc etc, so the topic isnt entirely verboten.

It's the tone and the apparent intent that seem to matter. Posting angrily about any political intent behind the vaccines, or the reality of COVID itself, is where trouble starts.

 

[nolongerdiseased]

As a younger user (20), I would probably give some credit to the rise of other social media platforms (facebook groups, twitter, reddit pages, etc) as being a newer alternative to building community spaces for those with chronic illness. I've been browsing here since I was 17, but in comparison to those other social media spaces the "feel" of PR is definitely more dated. PR is definitely a far better resource in terms of being an archive of treatment options and scientific advances in understanding ME/CFS compared to a lot of those spaces, which feel more like emotional support groups.

 

[Viala]

Who reviews what? Who is considered a peer? All news sources have a political bias. All you need to do is find out who owns the media.

Of course there's a political bias and it is tightly connected with pharmaceutical industry and their financial interests, ignoring it is like ignoring the elephant in the room. Isn't it the same with CFS/ME? We've seen it, many times. Some insurance companies could lose their profit if they had yet another disease to worry about, and who knows what other factors might be in play. It is a real issue which may tremendously affect how not well known diseases are approached. It should be allowed to discuss. It can be the same with PR and that medic update.

 

[Viala]

I've been browsing here since I was 17, but in comparison to those other social media spaces the "feel" of PR is definitely more dated.

Yes, forums with their specific topic arrangement are in general more dated, I've seen it happened to many forums like that. I registered not that long ago, but I can say there are still a lot of people here and PR is still the best resource of information about CFS/ME.

 

[YippeeKi YOW !!]

PR is definitely a far better resource in terms of being an archive of treatment options and scientific advances in understanding ME/CFS compared to a lot of those spaces, which feel more like emotional support groups.

Yeah, everyone's for the feels, the " .....Tell us about the pain..." stuff.

Things like actual information, research, commentary on alternative treatment protocols and doctors, reactions to supplements or supplements that might help, experimental treatment programs ..... it's all just too haaaaaaaaard .

The neat thing about PR is that you can get both of them right here in one convenient place, and a whole lot of 'em, whichever you choose. The Community Lounge section, and the range of options it has for support, communion, camaraderie, venting, sharing successes and failures or things you've discovered that make life a little easier with this malignant little pounding mallet of an illness, or just playing silly games and trading easy to prep recipes is absolutely remarkable !!! It's how I got to know members here and make friends. It's a lovely place to hang, especially on days when brain function precludes reading a research paper, or following a complex thread on members reactions to an experimental treatment program.

Yes, forums with their specific topic arrangement are in general more dated,

So is reading a book, but a surprizing number of people still do it. Go figure ....

but I can say there are still a lot of people here and PR is still the best resource of information about CFS/ME.

Totally agree. There's more real information here than in all of the other sites I browsed before joining PR, COMBINED !!!!

 

[Marylib]

There are numerous threads here on COVID, the jab, various member's reactions to it, threads questioning whether getting the vaccine is safe if you have ME, etc. etc etc, so the topic isnt entirely verboten.

It's the tone and the apparent intent that seem to matter. Posting angrily about any political intent behind the vaccines, or the reality of COVID itself, is where trouble starts.

I see. I didn't really understand. To me, viruses have no political persuasion...

 

[godlovesatrier]

What annoys me about all the other forms is that they feel super transient compared to a forum. Search functions are often absolutely shit. Then there's the fact that conversations get lost.

So yeah I prefer a forum really for that reason. Even if we use google to search PR for best results haha.

The amount of excellent info I see on twitter is staggering and yet it's transient, info gets lost, nobody uses the search function, very few people even read peoples pinned tweets.

I guess it's the way tech has moved, but maybe something good/better (a hybrid?) will eventually come along.

 

[belize44]

I recently discovered a new search engine, which is actually a combination of several search engines. Once again I can do extensive searches! Of course the first five hits or so are sales oriented, I just searched for PR, and it was number five down the first page. I no longer use Google, because this one is so much better. Plus, it's private!
https://www.startpage.com/

 

[YippeeKi YOW !!]

I recently discovered a new search engine,

OH WOW !!!!

Than you soooooooooooooo much for this link, cant wait to try it !!!!

 

[Rufous McKinney]

Plus, it's private!

wow- that search engine served up a report I wrote really quick! Super cool.

 

[musicfan50]

I'm one of the ones who lurked here a lot - and enjoyed various conversations like Freddds protocol Resistant Starch The Perfect Health Diet then found myself out into mainly FB wilderness (RCP, Copper Revolution etc.) and now just passing through. I thought at one point there seemed to be some structural change here like a committee or some thing. Maybe that was the change of rules. But the community seemed to have collapsed. And also this is going back maybe 10 years I thought there was some crossover with Health Rising and Cort Johnson. It was very confusing. As for myself I'm finding it difficult to get on an even keel with what I eat (whether vegan or high fat low carb). I still feel bad after a burst three weeks ago taking copper drops. I'm not sure what I'm saying. That's all.

 

[musicfan50]

I think what I'm tryi g to say is rather than just give an introduction - I am adding my voice to the fact of the disruption here. It looked like everyone had gone.!

 

[YippeeKi YOW !!]

I think what I'm tryi g to say is rather than just give an introduction - I am adding my voice to the fact of the disruption here. It looked like everyone had gone.!

As far as I know, that was back in Oct 2017 when there was a rift within the staff and membership here, and Cort moved his posts and time/interest to HealthRising. That settled down by the time I joined a year later and has remained calm and steadily growing until this recent lull.

So hang in, yes ????

 

[YippeeKi YOW !!]

I'm not sure what I'm saying. That's all.

....

One of us .... one of us .... one of us !!! I sooooooo hear that. But you showed more wisdom than I usually do, by quietly ending the conversation and slipping out th back door ....

 

[musicfan50]

As far as I know, that was back in Oct 2017 when there was a rift within the staff and membership here, and Cort moved his posts and time/interest to HealthRising. That settled down by the time I joined a year later and has remained calm and steadily growing until this recent lull.

So hang in, yes ????

Yaas.!!! Thank you.!!