We have a lot of sufferers who share their experiences, look for advice on a variety of topics such as; symptom management, benefits and work advice, help for parents, diet and nutrition advice, alternative therapy and so on. The support on the forum really is fantastic! The whole team are involved, the moderators all have a specific area of expertise and offer help and encouragement as needed, and then there are the members themselves who can relate, empathise and offer support and encouragement and tell of their own experiences.
It is not all serious though, there is an awful lot laughter on the boards. Check out the Braindead Day board where we take a fresh look at one of our hardest to deal with symptoms and laugh with each other about our battles with brainfog. There is the general chat section where people can chat about anything, including random thoughts for the day, and we have a section for sharing funny experiences and emails which often raises a smile.
Pop in to the chatroom too, there you can meet and talk about whatever takes your fancy, and it's good if you need quick answers or a bit of light relief.
There is a dedicated area for Carers of people suffering with CFS, it is not open to sufferers and visitors. In this section Carers share the challenges of caring for some with this debilitating illness and get support from people in the same position.
So often we hear that people have been so relieved to find us. It has made them feel as though they are not alone in the battles with the disease, the employment and benefit systems and the medical authorities (who still have a limited idea of the illness and it's treatment.) At the Chronic Fatigue Syndrome Support Forum, you will never be alone.
Below are a couple of member's accounts of life with CFS. They are sharing with us how the CFS Support Forum has helped them.
As I am housebound and practically bed bound, I don't get out to socialise any more. Before I came back to the forum after a break away, I was very bored and very lonely.
Simon brings me food and drinks and the kids like to pop in and see me when they get home, but these brief visits do not stop me from feeling isolated and lonely. I cannot just pop downstairs to sit with Simon as ventures downstairs have to be planned in advance with extra energy to get back upstairs again after.
I have begged social services for a stair lift, their response was no because I am private renting. However, they did say it might be possible if the landlord were to agree to a long lease, which he has agreed to do when we renew in August. So firefly the social will authorise one then.
Being stuck in the bedroom is very lonely indeed.
That is why the CFS/ME forum is my lifeline. It is my social life, the only friend I have and some feel as close as family, of which I also miss out on. Every day I venture into the forum, regardless of how bad I feel at the time, and how difficult it is to read the content, due to my poorly eyes, the forum never fails in making me smile, giggle or even sometimes laugh out loud. Simon says he can't remember what my laugh sounds like as it's such a rare occurence these days. I would not survive without my daily fix of fun and laughter. This would not be possible without the fantastic members and staff on the forum.
I highly recommend that CFS/ME sufferers join the forum as not only is it socially the best place to be, it is also second to none for help, advice and support too.
Whatever magic this place uses to be so fantastic, please don't lose it, I need my daily lifeline!
Click here for another member's post on her experience of living with CFS and how the forum has helped her.
Click here for CHY's experience as a carer and how the carers board has helped her cope with the challenges that come with this and how the forum has helped her. She is the moderator for this board and helps a lot of people in a similar position
This is MrsMittens story of her experience dealing with CFS and how the forum has helped her.