To make suggestions on how I could improve anything on this site, or to comment on the site, or to just say hello and write a bit about your own M.E. story, please feel free to write to me via the guestbook, or the contribute to this site.page, or by email. 

Patient accounts of CBT and GET for the CBT and GET database may also be submitted by email or through the contribute to this site webform. If you would like to submit your own, or your child's, M.E. story to possibly be included on the 'Case Studies' page, click here for details.

But do please note: Unfortunately due to illness I am only occasionally able to reply so please don't take my non-response personally.

Before becoming ill I studied fine art and design. In addition to all the M.E.related information on this site I have also recently added a small selection of my artwork to the site, the hummingbirds on the top of this page are an example of my work. To see more of my drawings and paintings click here. You can now also see artworks from my recent 'Hummingbird Lives' exhibition of paintings in my brand-new Virtual Hummingbird Gallery!

Best wishes to each and every one of you in your own individual battles with Myalgic Encephalomyelitis,

Jodi Bassett, 2006

[Me, 2004]

Hello, my name is Jodi Bassett, I'm 31 and I live in Australia. I've had Myalgic Encephalomyelitis for just over 11 years now. 

I currently have severe ME (although not the severest) and am housebound and almost entirely bedbound with the illness (for more on my M.E. story see the section below).

I started writing for this site in 2003, and put this site together and made it public in November 2004. I have a lot more essays I want to write yet on M.E. and hope to be able to continue working on this site until at least 2007.

Before becoming ill I studied fine art for 4 years and after that, design for 3 more. (I didn't get to finish my design degree though sadly due to illness).

Recently however, I've been lucky enough to have just had my first art exhibition! A few of my healthy friends and my family set the whole thing up and organised EVERYTHING for me luckily - all I had to do was finish the art! Of course I couldn't attend due to illness but I did get a ton of photo's of the whole thing, so I'm pretty happy. The whole thing just couldn't have gone any better than it did.

I spent more than 2 years painting tiny hummingbirds, lots and lots of them - but very slowly! It was ridiculously hard work but well worth it in the end (although I was very happy to finish!). (Click here to see some finished pieces.) I haven't painted anything in over a year now though, since I finished the hummingbirds, but I hope I'll be well enough to draw or paint SOMETHING again soon, It feels like I am missing a limb (or something) not to be able to paint for this long, it's horrible. (Fellow artists will know what I mean)

(For an explanation of the whole hummingbird thing click here)

About the only other thing I do is watch TV and listen to music, (in very small doses). I love: Red Dwarf, The Young Ones, The Goodies, Six Feet Under, Buffy the Vampire Slayer, Angel, The Mighty Boosh, Black Books, Bottom, The Glass House, CNNNN, The Chaser's War on Everything, The Late Show, The Office, Extras, Scrubs, Shameless, Teachers, Absolutely Fabulous, The IT Crowd, Murder Most Horrid, South Park, Bro Town, Family Guy, American Dad, Smack the Pony, The Sketch Show, Pond Life, Kath and Kim, Aaagh; It's the Mr Hell show, Spaced, King of the Hill, The Simpsons etc. and comedians like Wil Anderson, Dave Hughes, Arj Barker, Ross Noble, Cal Wilson etc. and music like: PJ Harvey, Radiohead, Thom Yorke, The White Stripes, The Raconteurs/Saboteurs, Nirvana, Beck, Mazzy Star, Smashing Pumpkins, Custard, Beastie Boys, Classical, Foo Fighters, The Cruel Sea, Nina Simone, Camille, Portisehead, Basement Jaxx and Massive Attack ...and lots of Triple J radio. I love books as well, I’m extremely lucky I can still read a little bit with such severe M.E., as that's pretty rare (light fiction mostly).

This has been the best year for me for ages, I never would have believed any of this was possible even a few years ago; being able to write and participate in ME advocacy and activism, having an exhibition and creating this site. I still can't quite believe everything I've done this last year - 100 times more than the last 5 years combined! I feel very, very lucky to have had all of these opportunities.

Although having said that, I am still currently dealing with severe and continued disease progression unfortunately. My cognitive abilities have improved to some extent this last year due to treatment, but other areas continue to decline. Lately I've only been able to spend a tiny fraction of the time online and working on this site that I have enjoyed the last year or so (and only at a huge personal/physical cost) - although it's not over yet by a long shot!

Best wishes,

Jodi Bassett, March 2006

ps. I'm writing this on my notebook computer which is on a wonderful stand which lets me type lying flat on my back in bed incidentally. (Click here if you'd like more information about the stand.)

I was 19 and living my childhood/lifelong dream of attending art school when on March 19th 1995, everything suddenly changed for me. I went from feeling normal one day, to having horrific cognitive and physical problems to deal with the next. It just came out of nowhere. My brain, my body and my whole life changed in an instant.

I felt like I had had a stroke or been in a car accident and sustained a lot of serious brain damage. Of course it wasn't a stroke or a car accident but it was sudden and severe brain damage - 10 years later I even have the MRI scans to prove it.

From that day onward I have been incapable of complex thought, have a lot of trouble with my short-term memory (and with making new memories), I can't easily or reliably; recognise faces anymore, or understand speech or express myself well verbally. The way my brain worked just completely changed overnight. Tasks that I had once completed without a second thought became extremely difficult, or even impossible for me to do any more.

But it wasn't just the parts of my brain that affect my thinking and intelligence that were affected, the parts of the brain that tell the body how to work properly were equally damaged:

My immune system was affected (sore throat and painful glands all over my body), my vestibular system (constant severe vertigo and no sense of up and down or where my body is in space when I close my eyes), my central nervous system, my autonomic nervous system (which controls breathing and heart-rate), my gastrointestinal system (eating is painful and I don't digest anything properly), my musculoskeletal system (involuntary muscle twitches, muscle weakness, muscle paralysis, constant pain), my sleep (my sleep/wake cycle is completely reversed), my circulation (my feet and hands are always cold and sometimes purple), the way my body dealt with stimulus changed (photophobia, nystagmus and extreme hyperacusis). I have trouble maintaining full consciousness for any length of time. My body's internal thermostat has gone haywire. I am unable to tolerate even very small amounts of exertion either cognitive or physical without severe repercussions. My body doesn't react as it should when I stand upright or even just sit. Just about every bodily system was seriously affected in some way, including and especially the way my heart worked.

I had a textbook case of M.E. in other words. Unfortunately my doctor still misdiagnosed me.

I was told to keep doing as much as I possibly could, and also to do as much exercise as possible too. It was the worst possible advice I could have been given. The greatest factor governing recovery or remission of M.E. is adequate rest in the early stages of the illness. Avoiding overexertion in the early stages is VITAL.

What was initially a mild/moderate case of M.E. ended up as a severe one around 4 years later (and remains so today). I am still paying the price for that terrible advice 10 years later and probably will for the rest of my life unfortunately.

[Please, if you are newly diagnosed with M.E. you must not overexert yourself, you may be permanently and irreversibly damaging your body and risking your M.E. becoming very much more severe or progressive. Getting that message out is one of the main reasons I set up this site. NOBODY should have to live with long-term severe M.E. if it is at all avoidable, it is a living hell you wouldn't wish on your worst enemy. Around 25 - 30% of people with M.E. have severe M.E. - many of them also because of inappropriate advice to exercise. There have even been exercise related deaths. For more information about the importance of not overexerting yourself in the acute stages of M.E. click here ]

Not much has changed over the last 10 years, the changes to my brain seem to be permanent. The only real change is that quite a few symptoms have worsened over time (the M.E. I have seems to be the progressive kind), particularly my heart problems which are easily my most severe and most worrying. I am now housebound and almost completely bedbound and it scares me to think how much worse it might still get in the future.

I do however, now have a much more useful doctor! He diagnosed my illness correctly for me in at the end of 2000 and continues to do what he can for me medically. (I consider myself very lucky to have such a knowledgeable Dr as I have now, he's truly worth his weight in any mineral of your choice! I wish every M.E. sufferer could be so lucky.)

For more information on my case see:

What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E. by Jodi Bassett. (This paper combines the available research on M.E. with a personal description of the illness to try to explain what it really feels like to have M.E. This is not just a second 'list' of symptoms - more than 50 individual symptoms (and other characteristics) of M.E. have been described in detail.)

A day in the life of severe M.E. by Jodi Bassett

A Million Stories Untold by Jodi Bassett

Hummingbirds by Jodi Bassett

Some of the articles and essays on this site written by me contain details about my own life and illness, I often use myself as an example to illustrate general points about ME. The reason for this is not that my case is any more interesting, or severe, or important than any other - it isn't - it's merely that I just don't have the same access to anyone else!

Click here to see my Main Gallery.

Click here to see some of my hummingbird paintings in my Virtual Hummingbird Gallery.

Many of the artworks are available for sale and FREE postage to any country is offered on all items. Come on, you KNOW you want one!

Note: All proceeds from art sales on this site primarily go towards paying for the cost of keeping this website running (as well as the activism gear website). 10 - 30% of the purchase price is also donated to fund biomedical research into Myalgic Encephalomyelitis (see the Gallery pages for more information.)