Social support for CFS/ME/Fibro etc

condra

Hi everyone.

DFLNEP was asking about Irish social support for CFS/ME in his thread, and apparently, there is basically none.

I've decided to create a website to facilitate nationwide group meetings for people with CFS/ME/Fibro, and possibly even extend that to unexplained illness etc.

If anyone has any suggestions or would like to get involved, please let me know.

LegacyUser

I suggest that anyone who is involved with a support group identify themselves and their groups in posts. The same should apply to anyone who is involved in any treatment or any form of therapy in that they should declare this.

I think the site should be totally independent of all support groups and therapists and doctors and that there be no persons truth be held higher than anothers by virtue of their membership of any profession or group

And, no attempt be made to subsume an unexplained illness into another illness category
nor should any treatment be ridicued because it did not work for one or more people.

I would hope that people be encouraged to continue to look for reasons for any "unexplained illness" rather than accepting they have something there is no cure for and giving up

condra

Hi Suggester.

It sounds like you are speaking from experience. Have you run into these sort of issues on other health forums?

Anyway, there are clearly a lot of things that can go wrong with an online health community, but I'm hoping to keep them to a minimum, and that the benefits will outweigh any problems.

The site will be non-profit, and I'll try to ensure there is balance, especially with controversial topics such as alternative practices, treatment of CFS/ME, etc.

Any dubious vested interests or potentially dangerous suggestions will of course be weeded out.

The only agenda will be the free exchange of information and conversation among Irish people suffering from chronic illness of one sort or another.

I think a lot of websites have a sort of "official stance". I'm hoping to avoid having an "official stance" on anything, but that may prove difficult. I'll hopefully be taking on some writers and moderators, but only those who can show professionalism, compassion, and impartiality.

About other support groups:

I respectfully disagree with your sentiments about excluding support groups though.
Rather than exclude all support groups, my goal is to create a hub for any relevant support groups that are interested in getting involved, because so many support groups out there have such abysmal online presences.

I'm hoping that each different section can be managed by a couple of people with (charitable support) experience in the relevant field.

LegacyUser

I did not mean exclude support groups only that people speaking from such a group should identify themselves and their respective group. respectfully if it just became platform for groups rather than for ordinary people i would not be interested. too many vested interests

Dizzyblonde

Condra, I'm a senior moderator on a support site much like the one you're setting up. Our site is non-profit and has been running successfully for a number of years now.

We offer no more than peer support and shared experience, and we find it necessary to keep a very close eye on people who come across as an authority on the various conditions because the people who join are vulnerable and desperate for a solution, as is usually the case with anyone suffering a chronic condition. So you'd need to moderate the site very well.

We have only one medically trained advisor on the site, an expert in vestibular testing who is kind enough to give his time to advising on tests and test results. If you could have doctors on your site of course it would be ideal, but I'm not sure you'd find any willing to give up their time, and for free - we never have.

Being part of an online support group has changed my life for the better, as it has for many others, so I think you're idea is really good. Especially for any conditions that limit a person's ability to get out and about because the feelings of isolation can be so detrimental. Being in touch with others who have the same condition is vital, in my opinion.

Our site started very small and has grown in strength and numbers over the past 6 years or so. If you'd like to have a look around, click on my signature. You can join for free just to get access to all areas if you want.

(Mods, I'm not touting for members here because it makes no difference how many we have)

condra

suggester wrote: »

I did not mean exclude support groups only that people speaking from such a group should identify themselves and their respective group. respectfully if it just became platform for groups rather than for ordinary people i would not be interested. too many vested interests

Hi Suggester. None of the content writers or moderators will be allowed have a discreet aliases.

Most of the posters on the forum will be "ordinary people". The job of forum volunteer mods will be to facilitate the free flow of information and friendly discussion.
While their own experience or expertise might come in useful, they won't be allowed to pursue an agenda outside the goal of the website - which is simply to bring people together.

I'm not sure where your concerns are coming from but I suspect you may have had a personal dispute with a member or moderator of another health forum at some point?

condra

Dizzyblonde wrote: »

Condra, I'm a senior moderator on a support site much like the one you're setting up. Our site is non-profit and has been running successfully for a number of years now.

Hi Dizzy. Your username is familiar. I think we may have chatted here before. Anyway, thanks for taking the time to respond..

...we find it necessary to keep a very close eye on people who come across as an authority on the various conditions.......So you'd need to moderate the site very well.

Absolutely. The first thing I'm going to do it write some poster guidelines, and a disclaimer! But either way, I'll have to keep a close eye out.

My biggest concern right now is not what regular posters will be saying, but trying to find volunteer writers and moderators that understand the fundamentals of journalism, the importance of impartiality, etc.

........I think you're idea is really good......... Being in touch with others who have the same condition is vital, in my opinion.

The idea first came about when talking to a guy on here about "real life" social support for people with chronic illness, and it was clear that there is very little social support in Ireland for a number of conditions.

My plan is that eventually if someone googles "cancer support ireland", "cfs me support dublin", or whatever else, they will get my site and be presented with all of the information they need, as well as having instant access to a friendly online community. Better yet, I hope eventually the forum can act as a hub for people organising nationwide social support gatherings.

If you'd like to have a look around, click on my signature.

Great site. I'll be sure to link to you from the main site. There is absolutely no conflict of interest -- You group is worldwide, for a specific condition. My site is for Ireland, for a wide number of conditions. I've sent you a PM with a bit more information.

Cheers.

dlofnep

I would be interested in helping. I have suffered all of the above at some point, and have found specific triggers for each in my own circumstances.

condra

alexcleo wrote: »

....FLUORIDE is making you ill....

Hi Natasha. I know you mean well, but your post is irrelevant to the topic.

Fow what it's worth, I respectfully think you should open your mind to the plethora agents that have been blamed on ME/CFS/FM for a number of decades.

Everything has been postulated, from fluoride, asbestos and mercury, to viruses, tick bites, and fungus.

It would be quite an insult to the scientific world to suggest that all of their tests are pointless, because a handful of renegades on the internet blame FLUORIDE (on lots of things), despite not having peer reviewed evidence to back up their claims.

If you want to get caught up in obsessing over one possible causation for your own illness, be my guest, but I don't think it's responsible to make bold claims to people whose condition you have little information about.

condra

dlofnep wrote: »

I would be interested in helping. I have suffered all of the above at some point, and have found specific triggers for each in my own circumstances.

Hey man, I'll PM you now.