A Hummingbirds' Guide

To make suggestions on how I could improve this site or the HFME site, or to comment on either 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 by email. Patient accounts of CBT and GET etc. for the CBT and GET database may also be submitted by email

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

Best wishes,

Jodi Bassett, 2009

Hello, my name is Jodi Bassett, I'm 33 and I live in Australia. I've had Myalgic Encephalomyelitis for just over 14 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 in written and video formats, please 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 and with the HFME for many years to come. Sometime in 2010 - 2012  I plan to have the site published as a book.

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 M.E).

In 2005 I was lucky enough to have my first solo art exhibition! A few of my healthy friends and my family set the whole thing up etc. I just supplied the art. Of course I couldn't attend due to illness, but I did get lots of great photos. It just couldn't have gone any better than it did. Click here to see some finished pieces and for an explanation of the whole hummingbird idea click here

About the only other thing I do is watch TV and listen to music (and read). 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 Russel Brand, Wil Anderson, Arj Barker, Ross Noble 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.

For more information see my Facebook account, or join the HFME facebook group. I have also written several Amazon book lists on different topics:

• Books to help experienced realist oil painters improve their painting skills 
• Books to help experienced oil painters improve their abstracts
• Light but good quality/intelligent fiction
• Quality fantasy/supernatural/sci-fi or vampire novels and
• Recommended M.E. reading list 2009

The last 4 years or so have been the best 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 since 2005 - 100 times more than the last 5 years combined! I feel very, very lucky to have had all of these opportunities, although I'm still desperate for a lot more improvement of course: and for that improvement to happen immediately!

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

Jodi Bassett, 2009

ps. My entire site and all my videos and everything else I've done has been done from bed, using my notebook computer which is on a wonderful stand which lets me type lying flat on my back in bed. Click here if you'd like more information about the stand.

Photo courtesy of the Laptop Laidback website.

Jodi Bassett is an Australian artist, graphic designer, writer and patient advocate.

In 1995, at the age of 19, Jodi went from being healthy and happy one day, to very ill and disabled with the neurological disease Myalgic Encephalomyelitis (M.E.) the next.

When first ill, Jodi was reduced to only being able to be 40% as active as pre-illness. Due to inappropriate medical advice leading to sustained overexertion (which causes serious and permanent bodily damage in M.E.) Jodi’s illness quickly went from moderate to extremely severe. By 1999 she was capable of less than even 5% of her pre-illness activity level.

Jodi’s illness has improved slightly, thanks to appropriate care, and has gone from extremely severe to severe. She still requires the help of part-time carers to live, and is currently housebound and almost completely bedbound. All of her activism and advocacy has been conducted from her bed using a laptop and a reclining laptop stand. Jodi is currently able to spend just half an hour a day (on average) on M.E. advocacy..

 In 2004, Jodi Bassett started the ‘A Hummingbirds’ Guide to M.E.’ website to try to improve awareness of the facts of M.E.,  and to stop other M.E. patients from having their chance for significant recovery ruined, and being needlessly made far more severely ill and disabled, due to inappropriate medical advice. Inappropriate medical advice based on the false notion that M.E. is the same thing as ‘CFS.’

In 2009, with the help of a group of similarly-minded M.E. advocates from around the world, Jodi founded ‘The Hummingbirds’ Foundation for M.E.’ in order to advocate for M.E. patients on a much bigger scale and to get the relevant information to a much wider audience worldwide.

Note that many/most of the HFME committee, with a few exceptions, are similarly disabled. (Many are also, like Jodi Bassett and so many other M.E. patients, as severely disabled as they are due to inappropriate medical advice to exercise and because they were not told of the importance of rest in M.E.) The founding members of the HFME feel, however, that they have no choice but to try to do what they can for M.E. advocacy, as there [simply is very nearly almost nobody else advocating for M.E. patients currently.

The vast majority of charities that started out advocating for M.E. patients are now actively supporting the same misinformation they were created to oppose. For 20 years now M.E. patients have been subjected to serious medical neglect and abuse, even unto death in some cases. The situation is actually worsening year by year and M.E. patients are becoming more and more desperate for real change.

The HFME is run by and for M.E. patients.

The foundation also aims to advocate for those non-M.E. patients given a meaningless ‘CFS’ diagnosis who also are not being served well by the various ‘CFS’ charities, and who are also harmed by the bogus disease category of ‘CFS’ and the overwhelming triumph of financial greed over ethics, science and basic human rights.

See: www.hfme.org 

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 more than 10 years later and probably will for the rest of my life unfortunately.

That is one of the main reasons why I have created this site. To stop what was done to me being done to anyone else. It is such a senseless waste.

[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. In the last 3 years, thanks to intensive rest, I have finally stabilised however and even experienced some small improvements. I am still housebound and almost completely bedbound however, I'm still very disabled and limited in my activities. But I hope the future will bring better health, at least the improvement to 30% or so that would give me at least some real quality of life.

I also now have a much more useful doctor! If only he had been my doctor 13 years ago.

I also now have a very supportive immediate family and friends. I wish every M.E. sufferer could be so lucky.

For more information on my case see:

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

M.E. vs MS: Similarities and differences 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 Hummingbird Gallery.

Many of the artworks are available for sale and FREE postage to any country is offered on all items.

Note: 30 - 50% of the purchase price on every item is also donated towards Myalgic Encephalomyelitis advocacy (see the Gallery pages for more information.)

A few people have asked me how I write or paint or draw anything at all (being so ill) and so I thought I’d explain a little bit, as it is kind of complicated, it's not just something I can effortlessly do anymore it's true. It's a question I am asked a lot - not in an accusing way, but just out of curiosity I think. So it seemed easier to write it down somewhere than to have to try to work out how to explain it again and again.

First of all, let me state that I am not complaining about how difficult it is to do things (I am very grateful I can do them at all, it hasn't always been the case and I know it is NOT the case for many people who have very severe M.E. - no matter what strategies they might devise) these are just explanations of how it is for me to do things now, no more and no less.

See About my Writing to read about how I wrote my first ever M.E. essay or About my Artwork to see how I manage to be able to paint sometimes despite having a very M.E. affected brain.

(Note that these two papers aren't current and were written in 2004 - 2005.

As I write this extra note in 2009, I'm able to spend about 30 - 45 minutes a day on advocacy, on average. I still conduct 100% of my advocacy efforts - and all my painting - from bed/ Lying flat in bed in fact. Incidentally...I'd give just about anything to be able to do both these things sitting up, even if only occasionally, it'd make life so much easier.

I have a dream....that one day I'll be able to spent part of each day sitting upright! What a wonderful unimaginable luxury that would be! Not to mention being able to eat and drink upright.... May this dream come true one day for myself and all those other M.E.ites with this same simple dream.)