Very severe CFS is a condition basically impossible for a healthy person to imagine. To be in severe pain, and bedridden, and with a billion other problems for years, and decades, on end. As is said in the book, 'Alice In Wonderland,' it often feels like we are running twice as fast as we can, just to stay in the same place. Jodi Bassett wrote a very good article about it simply called Hummingbirds. It's well worth a read.
An Important Note
This area of my site is just beginning to be written as a separate section. Actually, most of what I write is applicable to those with very severe CFS and those with less severe forms. But I wanted to acknowledge those individuals who struggle with very severe CFS, because it really is beyond what many sites cover.
Featured Article: Doing Small Tasks More Efficiently
This article is not about saving energy with household chores, cooking, or shopping ... it's aimed at those small tasks that those with severe ME/CFS are still sometimes able to do. Things like banking, paying bills, buying supplements, shopping online, and so forth - they're hard to delegate and for many people they're impossibly difficult to do yourself without adaptions.
Note: Includes special tips for Australians doing these tasks!
Resources In This Section
To The Severeies - the first article that I put here. It is a piece I wrote for ME/CFS Awareness Day, 2004 - as do many people with CFS, each year on awareness day, I try to write something to post to bring CFS to the awareness of more people, but during 2004 I was just too sick to manage to talk to anybody that wasn't already "In The Know" so I put that together.
"Typical" Days With Very Severe CFS describes by example what it's like to live with this level of the "dread disease". If you're interested in very severe CFS you'll want to check out especially the one by Jodi Bassett and the latest one by myself, Ricky Buchanan.
CFS Fatalities
Did you know that very severe CFS can kill people? And I don't mean that sufferers simply can't take it anymore and commit suicide - although that is also a problem too, and an utter tradgedy. No, I mean the case where the CFS itself kills the patient, usually from heart failure, organ failure, or an overwhelming infection that the dysfunctional immune system can't fight off.
A CFIDS/ME Patient Memorial List which has been set up to honour and pay tribute to those brave souls who have fallen to this terrible disease. Please, if you know anybody who has died because of CFS, contact the list owners and get that persons' name put on the list so people can honour them too. We don't want to forget our fallen.
Outside Resources
The Ultra-Comprehensive CFS Symptoms List was compiled by Jodi who - like the rest of us with very severe CFS - is totally sick of hearing only about the same 5 symptoms over and over again, and never about the heart problems, the epilepsy, the extreme sensitivity to light and/or sound, the trouble breaching, and all the other things that go along with the very severe form of this disease.
Very Severe CFS Homepages
There are only two homepages I know of - aside from mine - which concentrate on very severe CFS. Luckily for me, they've both been created by friends of mine!
A Hummingbird's Guide To ME/CFS is Jodi Basset's website, it has several essays about very severe CFS as well as an extremely good list of all possible CFS symptoms and other resources. Well worth a look.
Borg Of Space is written by Ingeborg, from the Netherlands, in both English and Dutch, and is an absolute masterpiece - not least when you consider that Ingeborg is the sickest person with CFS that I know of anywhere in the world!
If you know of other sites written by those with very severe CFS, please let me know so I can add them here. Thank you!
