Wednesday, September 28, 2005

Chronic Fatigue: New community: ME CFS Severe

This item found at New community: ME CFS Severe

G'day Friends,

I have started a new LiveJournal community for those with ME/CFS (and related disorders) and who are at the very severe end of the ME/CFS spectrum. The community is called me_cfs_severe, and will provide emotional support and information about very severe ME/CFS.

You will probably fit right into me_cfs_severe if some of these phrases, or very similar ones, describe you:
- You are completely housebound.
- You only leave the house to be taken to essential medical appointments, using a helper and a wheelchair or stretcher to manage it.
- You need to use a wheelchair and helper to get around even inside the house.
- You are bedridden, only getting up to use the toilet or a commode.
- You can't even get up to use a commode, and use a catheter or incontinence pads or similar.
- Your ME/CFS is progressive.
- You need help, or special technology, to use the computer.
- You are sicker than almost every other ME/CFS patient you know.

These descriptions are just guidelines, you certainly don't have to fit them all! But if they seem to be describing you pretty well, then this community is for you.

Membership of the new community is moderated at the moment, so if you join the community, please also email me and explain how the community is relevant to you - eg, do you have very severe ME/CFS, do you have a family member who has it, etc.



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