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

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ruben

Senior Member
Messages
277
given the number of people around in the english speaking world alone who apparently have ME/CFS, is it not surprising these sites/forums aren't more busy
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
There are lots of CFS/ME forums out there.. it isnt like this is the only one. People just gravitate towards the ones they find and resonate with.
 
Messages
646
given the number of people around in the english speaking world alone who apparently have ME/CFS, is it not surprising these sites/forums aren't more busy

Surprise would be based on a number of assumptions:

1. That M.E/CFS affected people (sufferers and carers) have access to computers.

2. That M.E/CFS affected people have the strength, energy and/or time to particpate on forums.

3. That M.E/CFS affected people find Internet forum particiation safe, enjoyable, useful or valuable.

Lack of resources and the nature of the illness is likely to inhibit many M.E/CFS affected people from forum participation. Apart from that there are some social and psychological processes that tend to limit the number of vocal participants in any one forum and this can be seen across the Internet with typical participation levels rarely exceeding 100 and often fairly consistent at around 20-30 for most topic base forums. Readership will typically exceed posting rates by mutiples in the range of 2-10:1 so even with a global internetst population of several million any one forum will rarely get past a daily unique readership of 1,000. Blogs in contrast can attract far higher readership rates.

IVI
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
Apart from that there are some social and psychological processes that tend to limit the number of vocal participants in any one forum and this can be seen across the Internet with typical participation levels rarely exceeding 100 and often fairly consistent at around 20-30 for most topic base forums. Readership will typically exceed posting rates by mutiples in the range of 2-10:1 so even with a global internetst population of several million any one forum will rarely get past a daily unique readership of 1,000. Blogs in contrast can attract far higher readership rates.

IVI

IVI, quite interesting statistics. Thank you.

I had not heard this anywhere but have been thinking about group size for a long time -- thinking, for example, when is a high school too big? I have not done any research on this, just wondered. But recently I read Malcolm Gladwell's Tipping Point, and he reports that more than one social scientist has found that the for a group to maintain stability 150 individuals is about the limit. The number was first proposed by British anthropologist Roger Dunbar. 150, roughly, is what our neocortexes have evolved to cope with. Beyond that number the group needs to divide. Or, as an alternative, more restrictive rules will have to be imposed on the group.
 
Messages
646
IVI, quite interesting statistics. Thank you.

I had not heard this anywhere but have been thinking about group size for a long time -- thinking, for example, when is a high school too big? I have not done any research on this, just wondered. But recently I read Malcolm Gladwell's Tipping Point, and he reports that more than one social scientist has found that the for a group to maintain stability 150 individuals is about the limit. The number was first proposed by British anthropologist Roger Dunbar. 150, roughly, is what our neocortexes have evolved to cope with. Beyond that number the group needs to divide. Or, as an alternative, more restrictive rules will have to be imposed on the group.

Sorry, I'm afraid that I thought I had some refs that I would add later - now sadly have to file under "links I should have kept". There's certainly been relevant stuff written by various 'sociology of the internet' authors but (with appropriate irony) most of the web published material is now drowning under marketing and SEO pontificating. Still it's important to try to understand what are the limits of Internet based communication, particularly where 'legitimacy' is claimed on the basis of 'digital democracy'. The structure of PR may actually serve to boost overall discussion participation because there are lots of sub forums where individuals can feel they are being heard or have confidence in writing about a specifc area. I'm aware of at least one such structured forum that has thousands of registered members, although daily contribution across the whole site is largely confined to less than a 100 members and I'd guess about 50 posters are responsible for 80% of the content. Now I'll have to file this under 'essays I might have written' !

IVI
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Not sure if there is anyway to check it, but the number of post on PR has been significantly below average over the last 3 to 4 weeks and maybe longer. There has been a period with little new news and what news there has been has been negative xmrv, which I think people are getting less responsive to. There have been periods like this before though, but something will peak the interest of the members and it will be business as usual! I hope!
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
given the number of people around in the english speaking world alone who apparently have ME/CFS, is it not surprising these sites/forums aren't more busy

also, only 10% of the people who have ME/CFS, are diagnosed.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Sorry, I'm afraid that I thought I had some refs that I would add later - now sadly have to file under "links I should have kept". There's certainly been relevant stuff written by various 'sociology of the internet' authors but (with appropriate irony) most of the web published material is now drowning under marketing and SEO pontificating. Still it's important to try to understand what are the limits of Internet based communication, particularly where 'legitimacy' is claimed on the basis of 'digital democracy'. The structure of PR may actually serve to boost overall discussion participation because there are lots of sub forums where individuals can feel they are being heard or have confidence in writing about a specifc area. I'm aware of at least one such structured forum that has thousands of registered members, although daily contribution across the whole site is largely confined to less than a 100 members and I'd guess about 50 posters are responsible for 80% of the content. Now I'll have to file this under 'essays I might have written' !

IVI

IVI, thanks for these posts, very interesting. I hope you right that essay someday. I'd like to hear more of your thoughts.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
The stat was only 20% are diagnosed (that was for America) .. (this is going back a few years now, so hopefully it is a little better now).

That was the stat, yes. We have a new one, though. Jason's 2009 epidemiological study found 90% of the participants had never been diagnosed previous to the study. He suggests this is because the current study was not based on referrals from medical providers such as hospitals and primary care physicians (GPs), as previous studies were.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021257/?tool=pubmed
 

Tulip

Guest
Messages
437
Heaps of sick people have no desire to use the internet to socialise, they either remain lonely or socialise through family and friends, even if bed ridden.