Pollylill Posted November 9, 2016 Share Posted November 9, 2016 I have a condition called Fibromyalgia, I was pleased a few months ago to hear of a set up local support group Manx Radio had them on Women Today on afternoon. Despite trying to contact the group it appears you have to be on facebook to access the group, despite contacting the group by e-mail I have no response from them. Surely there are other ways of contacting people with this long term condition. A Question am I being excluded because i choose not to go the Facebook way? Are there other people on the IOM who are in the same position? Many years ago when my daughter faced with Dyslexia and i was told by professionals that they didn't believe in the condition. That was in 1989, I spent many years starting up support groups and taking part as a parent involved in the statementing process including attending meetings with many other concerned parents with an Education consultants who was producing information for a white paper for the statementing of dyslexic children. No one was excluded we used many different ways to contact people, offering support and advice via many different channels. I Have recently contacted the ME support group on the IOM and have been pleased to have welcomed with same day reply by e-mail and post the next day containing contact information, next group meeting and lots more information. Polly Link to comment Share on other sites More sharing options...
notwell Posted November 9, 2016 Share Posted November 9, 2016 Why not create a profile on facebook then? You don't have to put your life on there or have any friends/connections but at least you'll be able to link to the group. Link to comment Share on other sites More sharing options...
the stinking enigma Posted November 9, 2016 Share Posted November 9, 2016 . Link to comment Share on other sites More sharing options...
Pollylill Posted November 9, 2016 Author Share Posted November 9, 2016 I tried that it didn't work. Anyway the point is if you set up a support group it is not just for a group of people of your choosing it's for anyone with the said condition! Isn't It??? Link to comment Share on other sites More sharing options...
Mr. Sausages Posted November 9, 2016 Share Posted November 9, 2016 I tried that it didn't work. Anyway the point is if you set up a support group it is not just for a group of people of your choosing it's for anyone with the said condition! Isn't It??? It depends how the person/people who set it up want it to work. If it's just a facebook page to share information, then that's what it is. You'll have to join facebook to view it and interact. If they have get togethers then you'll need to speak to them. Link to comment Share on other sites More sharing options...
Merkin Posted November 9, 2016 Share Posted November 9, 2016 You might find there are lots of other support groups on there. You don't have to post anything, follow anyone or even use your real name. Link to comment Share on other sites More sharing options...
Gladys Posted November 9, 2016 Share Posted November 9, 2016 Try joining the UK based society for the condition and subscribe to their FB page. That's what I have done for my condition and found that they have lots of very useful information for the condition. Apparently efforts have been made to set up local group, but apathy prevailed Link to comment Share on other sites More sharing options...
Pollylill Posted November 9, 2016 Author Share Posted November 9, 2016 Mr Sausages, I disagree with everything you have just said. Are you suggesting any group can exclude any person with the said condition because they don't have access to Facebook. I think you will find most support groups have many different forms of contact and make them available to all, excluding no one. And hopefully The IOM Fibromyalgia group will see that other forms of contact could be acceptable, eg email etc. Link to comment Share on other sites More sharing options...
Pollylill Posted November 9, 2016 Author Share Posted November 9, 2016 Try joining the UK based society for the condition and subscribe to their FB page. That's what I have done for my condition and found that they have lots of very useful information for the condition. Apparently efforts have been made to set up local group, but apathy prevailed Hi Gladys, I have joined the same group as you and found them very supportive and informative. However, I would have like some local support. ME support group over here appears to be supportive to Fibro sufferers so will I go that route. Thank you for your advise Link to comment Share on other sites More sharing options...
GD4ELI Posted November 9, 2016 Share Posted November 9, 2016 I tried that it didn't work. Anyway the point is if you set up a support group it is not just for a group of people of your choosing it's for anyone with the said condition! Isn't It??? Hi, You can set up a Facebook account and give away no personal info other than your name, and there will plenty of people with the same name as you I expect . I hide nothing https://www.facebook.com/g4eli but you can hide everything as I say. If you do this, maybe with a bit of help you'll be fine. The advantage of them using Facebook is that it costs absolutely nothing. FWIW look at this http://www.iomtoday.co.im/news/isle-of-man-news/raising-awareness-of-fibromyalgia-1-7902405 and you see that they have (or had) regular meetings. Link to comment Share on other sites More sharing options...
Mr. Sausages Posted November 9, 2016 Share Posted November 9, 2016 Mr Sausages, I disagree with everything you have just said. Are you suggesting any group can exclude any person with the said condition because they don't have access to Facebook. I think you will find most support groups have many different forms of contact and make them available to all, excluding no one. And hopefully The IOM Fibromyalgia group will see that other forms of contact could be acceptable, eg email etc. Erm... OK then. If you think you don't have to join facebook to view a closed facebook page then I can't really help you. I'm not really sure what you're looking for on here. Link to comment Share on other sites More sharing options...
Grianane Posted November 9, 2016 Share Posted November 9, 2016 Contact Dr Allinson MHK, he is (or was) a Director of a UK Fibromyalgia support organisation Link to comment Share on other sites More sharing options...
Pollylill Posted November 9, 2016 Author Share Posted November 9, 2016 Contact Dr Allinson MHK, he is (or was) a Director of a UK Fibromyalgia support organisation I didn't know that. Thank you Link to comment Share on other sites More sharing options...
quilp Posted November 9, 2016 Share Posted November 9, 2016 And ask him for Sativex, preferably the vape version. Link to comment Share on other sites More sharing options...
John Wright Posted November 9, 2016 Share Posted November 9, 2016 You have to remember that local support groups are often run on a shoestring with little or no funding. The coordinator of the IOM group may only have a smart phone or tablet, they may not be computer savvy. I've set up and been involved in runnng charities. We've had web sites, forums, FB pages and had e-mail and snail mail mail lists and news letters. I understand, that in the ideal world the group would be fully inclusive reaching out by every means and via every media. It isn't always practical or possible. Snail mail involves print, envelopes and postage, e-mail involves mail groups ( which can be a nuisance to update - members change e-mail, don't tell, you get bounces and they complain about being left out - face book and messenger, with notifications so everyone sees updates immediately, can be invited to events etc. maybe easier. Have you thought that it's you excluding yourself by refusing to set up and operate on FB? Their committee may well have taken a decision for good reason and now here you are, an outsider, demanding they do things differently. They aren't excluding you, they are offering an accessible contact option you don't like. No doubt the group is closed to protect members for all sorts of valid reasons. Hard choices on both sides. Join, swallow your FB hate, volunteer and join in the debate about making services and info more readily/widely available. Link to comment Share on other sites More sharing options...
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