Some of the comments about Africa and... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Some of the comments about Africa and Africans has put me off.

31 Replies

This is in response to the discussion that there is no fibromyalgia in Africa to which I could not respond to this morning. I am African but live in Britain. I hope to return too. I was keen to share my experiences in Africa with fibromyalgia but after reading a few of the comments, I was put off. I am also turned off this forum too.

So far I have joined two groups. One i was so unwanted they gave me wrong times to meet, the other, people were nice but I was reluctant to share my experiences after the first group's behaviour.

31 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

There will always be discussions that go off the rails and members that do not fit in. That member has left the forum and there is plenty of information on that thread to refute the opinion of that member and of their medical professional.

I appreciate that you have made this comment but it is not normal for the forum. However, it is common that some people overreact when they are confronted with a different opinion. This is why the topic was locked as it was circular and out of hand. It continued one to one with the member before they left and their annoyance was focussed on me rather than the original issue.

Please give the forum some more time and do not judge it by a few interactions. As to the other group that you tried to connect with, if you email head.office@fmauk.org they may be able to help.

in reply to desquinn

I appreciate, desquinn. Thank you.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to

no problem at all

Greenpeace profile image
Greenpeace

Hi, I apologize on behalf of the member who was so adamant in her opinions about African Governments misappropriation of funds, and how Fibromyalgia is not a recognized illness.

As Des says, there is always one who spoils it for many, and in public forums, they are not spotted at first, and its only when they start arguing they start to be nasty. Fortunately the member has now left.

You are very welcome here, and this forum is very supportive of each other, and we have many different nationalities amongst our members.

So I ask you please not to leave, give us a chance to make up for your unpleasant experience.

In these challenging times we all need a safe place to share our experiences with other friendly people who understand, and who are non-judgmental.

Sending you a virtual hug ((((❤️)))).

GP. 🌈🌈

in reply to Greenpeace

Thank you, Greenpeace. Great moniker. Made me smile. Admin has been in touch and I have responded. Thank you, again.

Dinkie profile image
Dinkie

I confess I haven’t read the post but what I would say is that generally we are a very supportive friendly bunch. We don’t always agree but we should always be kind and if a post doesn’t appeal then we move on. There are times when we post on things other than fibro be it the knitting, crafts, gardening or the more humorous side (myself and mattoid-mags usually the main culprits for the latter).

Please give the site a chance and perhaps have a look at some of the lighter posts too too see what the members are up to.

Dinks

in reply to Dinkie

Thank you for you kind response, Dinkie. Admin has been in touch about this.

Dinkie profile image
Dinkie in reply to

😁 you are very welcone

bigpigs77 profile image
bigpigs77 in reply to

The person who put this up is a troll when I first saw came on this site this person . called me rude for giving advice.this person is not nice.there is a lot of friendly people on this site.love and peace to you and good health.

in reply to bigpigs77

Oh, thank you, bigpigs77. Have a good night.

Hidden .I saw the post yesterday, don’t be put off, majority of us are very friendly, and we love to help as many people as we can. We have laughs, joke, bad days and much more, but at the end of the day, we are all in this together and we help as much as we can. Have a lovely day if possible. Stay safe. Oh and welcome to the forum.

in reply to

Thank you, Blue52. Have a lovely day too.

in reply to

Thank you.

LoneEra profile image
LoneEra

So sorry you had this negative experience. It’s totally NOT a reflection of the forum as a whole.

I had the misfortune of reading that post and couldn’t believe my eyes. Thankfully, desquinn did an amazing job of shutting it down.

Please know that you are completely welcome here. And it’s great to have diverse experiences to help us all learn and grow.

I hope you find the rest of the forum supportive, insightful and even fun. Take care x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to LoneEra

Thanks for the comment LoneEra and on the subject of diverse experiences, the charity has being trying to reflect our community better. We have made some efforts to better represent males and the younger members, but also those with fibro that are perhaps less severe in terms of pain but still impacted by it. We could also do with case studies that represent these elements but also all the different people within our community from diverse backgrounds. We are always looking for people that have a story to tell about "their fibro" and you can see some of these at our website.

if you feel you can add then please look here: fmauk.org/latest-news-mainm...

These can make a difference to others and be cathartic for the submitter as well.

some examples

fmauk.org/latest-news-mainm...

fmauk.org/latest-news-mainm...

LoneEra profile image
LoneEra in reply to desquinn

Love this push for showing the whole spectrum of people affected by fibro. Great initiative. Good luck with it ⭐️

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to LoneEra

thank you but it often has push back with that's not my fibro or that's not me :) But it starts another conversation .......

LoneEra profile image
LoneEra in reply to desquinn

Hahah. Such is life! Well, if you ever need a redheaded under-40 fibro warrior to help anyone identify, you know where to find me 😂😂😂

in reply to LoneEra

Thank you, LoneEra. Have a lovely day.

Iceberg5241 profile image
Iceberg5241

Just for information, I am English and live in South Africa where I have been for 44 years. Take a look at my story under Iceberg where I answered someone who thought they may just have over active thyroid. I love this country and, although I do not know anyone with Fibro, I know many people have it because people tell me so. I am helped by this site, and by my chiropractor and homeopath. Stay with us, there are ugly minded people all over the world but here mainly there are people who suffer yet cope. I wish you well (or as I like to be told "as well as can be expected". 🇿🇦

Crossstitch1 profile image
Crossstitch1

I did read some of the thread yesterday....after a while I just switched off...this site has been really helpful for me (obvs i can only speak from my own experience)...I've received support and helpful advice...and enjoyed the humour and crafts....there's always someone who will come along and try to disrupt things in every group in life. Hope you feel you can come back and find this site useful.

in reply to Crossstitch1

Thank you for the support, Crossstitch1, I've heard good things about the forum all day.

Dazakella2010 profile image
Dazakella2010

I think I see the post you are referring to yesterday but I can confirm I have had nothing but positive feedback form Theo’s forum and it has really helped me.... I think I’m under 4 different groups and I have nothing but praise for all of them.... please don’t listen to one chat and don’t let it put you off.... xx

in reply to Dazakella2010

Thank you for the encouragement, Dazakella.

So sorry you felt that way it is very rare we have such negativity in this forum which is friendly and supportive to us all. Welcome to the forum I hope you stick around and see that it's not bad at all here. Hugs MistyA x

Thank you, MistyA. Had so much support and I am learning so much from all these experiences that I will stick around.

MaggieSylvie profile image
MaggieSylvie in reply to

I'm glad you decided to stick around. I couldn't believe the length of that thread yesterday and how heated it became. I have been a member of this forum for about a year and have never seen anything as bad as that. I'm glad that member has quit. So welcome! 😊

Purplebluebell profile image
Purplebluebell

I could not believe the post either and pleased it was dealt with as not typical. Please don't be put off. Al the best.

in reply to Purplebluebell

Thank you, Purplebluebell.

Jamsiet profile image
Jamsiet

I am so sorry to hear you had a bad experience. I can only give contributors on here every thanks for helping me through flare ups; advice of things to try and generally being there for me and each other. Please stick with us we're a friendly bunch really.

Country-gal profile image
Country-gal

Hi I know many people from Africa who have fibro! My GP is from Africa and specialises in fibro! So yes Africans do get fibro! I agree with you! It's sad you've been to feel like you don't belong and this is a bad site! I've been here for a few years now. ! So far so good! The people are caring! But as for comments about Africa like that then they need to do research before commenting! I'm sorry you got hurt like that! I'm hoping you stay! From Country gal

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