The Wellies Network so far consists of 75 people in different parts of the UK. The aim of the network is to share support and experience between people who are on the road to recovery from CFS/ME, around issues such as, for instance:
- living with one foot in the well-world and one foot in the ill-world (and how lonely that can feel)
- the stress and financial implications of making the transition back into work/a more active way of life
- getting out of the "benefits trap"
- whether or not to be 'out' about the illness, especially at work
- being proactive and creative at finding the things that help you to work around your limitations
- working out how to have a social life again, particularly if you've moved to a different part of the country as a result of the ME
- taking on sustainable commitments - as far as possible avoiding the boom & bust/crash & burn approach, and letting go of things you find you can't sustain
- how to avoid recreating any patterns that contributed to getting ill in the first place
- dealing with setbacks - the stress of letting people down, and the fear that the ME’s back for good
How it works
1. Do pass on the details to anyone else you know who may be interested, or post an article about the network in your local support group newsletter. The more people who join, the more we can all help each other.
2. Joining: To be a Wellie, there's no specific requirement in terms of "percentage wellness" or anything of that kind. The basic rule of thumb is that if you're somewhere on the road to recovery and want to connect with people about issues that raises, then you're a Wellie. To join simply e-mail me (Anne-Marie, the network co-ordinator) atnetwork@wellies.me.uk . It's also useful to know what part of the country you live in.
3. Emailing Questions to the network: e-mail me your queries, network@wellies.me.uk , and I will forward them to everyone in the network (blind copied) so people can share their experience with you.
4. Emailing Replies: If you're replying to someone's question by e-mail, and are happy for your reply to be posted on the website, then Reply All to send a copy to me, so I can add it to the site.
5. We very much welcome your stories about how you managed or are managing your recovery, and the issues around dealing with setbacks. But queries on specific symptoms and treatments will not be circulated or put on the website as there are a lot of other resources out there for issues relating to illness, rather than recovery ... though we can forward them on to the Interaction E-mail Noticeboard for you if you like.
6. Website: Most of the questions, and the replies from network members, will be added to the website as a growing resource for others (though sensitive or personal material will not be published). All items will be posted anonymously unless you specifically ask for your name/contact details to be added.
7. You can also post messages and comments direct to the website on any item on here, but you need to register for a reader account first, and then e-mail me (network@wellies.me.uk) when you've done so, so I can set the access permissions. For those who aren't so technically inclined, it may be simplest just to send them to me (network@wellies.me.uk) to forward to the network. And it's worth bearing in mind that you'll probably get more responses to a message that goes round by e-mail.
8. The site has a number of topic areas on the left-hand sidebar - please let me know if you think there's anything missing.
9. Get-Togethers: there are often get-togethers being arranged in the London area (see the Get Togethers topic area on the left-hand sidebar for details). We are looking at the possibility of setting them up in other parts of the country. Why not host one yourself? it generally just involves inviting people to join you for a cuppa in a cafe, though you're welcome to suggest something more adventurous.
10. Recovery Talks: this network grew out of a discussion at an event set up by the North London ME Network, where 4 people well on the road to recovery talked about their experiences. If your local support group would like to set up this type of event we can e-mail the network to see if anyone would be interested in speaking at it.
To get the ball rolling, why not send a question/issue to network@wellies.me.uk?
Anne-Marie, Wellies Network Co-Ordinator
