I'm writing a book by sufferers because we're the ones who know the most about it and I want us to speak up about it and explain it from our side. Between us we know a lot!
I need to find people who are interested in collaborating with me. I've started it in fast pencil and can add you if you're willing?
I can only write it with enough input and support from other sufferers. Even if you don't want to contribute I'd really like to know what you think of the idea. For a start what do you think of the title, it was off the top of my head and perhaps could be better; ideas welcome.
What are ME/CFS/Fibro by Sufferers? or it could be What are ME/CFS and Similar Diseases by Sufferers? for instance.
Hi GeorgiaS; yes very good idea.....I will help when I can ....I guess like many others, it will depend on our frame of minds at times, for at present I feel "all fogged out", and can't seem to think straight....if you start sending through your bits that you have come up with, (dot points), then I maybe able to add to each......it's a very big task, but one that will be much appreciated....we always seem to be able to add pieces each day, so wonder if it's a starting point to ask our Moderator/others if they mind us using their "inputs" as examples?....will keep following through with you..........................Bron
Hi Georgia. Great idea! I'd be willing to submit something for you. How many words would you like? Now I've shelved the dating site idea, I have a bit more energy. It all rather overwhelmed me in the end when I realised just how much was involved! I felt bad after everyone's enthusiasm and Les' helpfulness.
As for a title for your book, how about 'ME/CFS/Fibromyalgia'- Sufferers tell their stories.'
Hello - what a fantastic idea! I've only been told I have Fibromyalgia around a month now so still learning. I would be happy to contribute if possible.
Thanks Bronwyn; I'm not going to be in a hurry with this!
Firstly I need to know if my title ideas are ok, and ideas for different chapters. I've started on the intro and I'm thinking that the first chapter should be about symptoms and how we feel?
I understand that you're all fogged out though and don't want to push anyone, including myself. If you want me to add you as a collaborator in fast pencil pm me and you'll be able to see the progress. If you get any ideas brilliant but no pressure.
It's not our stories, it's about how we feel, explaining what these diseases are like and things that help us individually. I've never seen a book like this but there are plenty about sufferers telling their stories.
I just want people to understand what we have to go through, including the medical professionals. Can you pm me about it? As I said to bron if I add you as a collaborator you'll be able to see it and offer suggestions and edit suggestions, which I then approve or disapprove.
We can do the whole thing in fast pencil, including publishing with amazon barnes and noble etc.
Excellent Andrew, can you pm me so we can discuss adding you as a collaberator, the book is a joint effort and I want to get as many of us onboard as possible. Many hands make light work as they say and we all have something to say about our diseases.
Great Katharine! I really need some Fibromyalgia sufferers to contribute. Could you pm me and I'll add you as a collaborator. There's no pressure or hurry with this because I go at a snail's pace with everything I do! But the more people help out the better.
Georgia as you probably know Fibromyalgia is common in many AI diseases and I rum British Sjogren's for sufferers and BSSA members as the BSSA don't do FB you are most welcome to join as you may see how those with Fibro have gone misdiagnosed and misunderstood for most of their lives
I don't do Fb Pam, long story, and it's people to contribute that I need. I don't have Fibro, just ME as far as I'm aware. Can you pm me so we can talk about it?
Hi Pam, it's good to hear you are focusing of something to your brain active. I have been hit with not only cfs and fibro but hypothyroidism osteoarthritis degenerative disc disease and so on. Very difficult to go on with but will certainly never give up.
Anyway, possible names for your book:
ME/CFS/Fibro - The Survivors Guide
ME/CFS/Fibro - Is There Light at the End of the Tunnel?
ME/CFS/Fibromyalgia Don't Suffer in Silence
Sorry if I've misread what you are actually working on, fibro fog has occupied my brain
At the moment I have 'ME and Fibromalgia Through Sufferers Eyes' because it's about explaining to people such as familiy, friends and doctors what it's like, symptoms etc. We're the ones who know the most about it after all!
There needs to be more general understanding about it. And we're going to have chapters on theapies we use, things that help us individually etc. What do you think?