Jodi Bassett is an Australian writer, artist, graphic designer, and patient advocate.
Jodi contracted Myalgic Encephalomyelitis (M.E.) in 1995 when she was just 19. She went from being healthy and happy one day, to very ill and disabled with the neurological disease M.E. the next.
When first ill, Jodi was reduced to 40% of her pre-illness activity level. 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.
After more than a decade of the disease becoming worse as each year passed, Jodi's disability level finally began to stabilise. Thanks to appropriate care, education and support, her condition improved from extremely severe to severe in 2007. At the time of writing her condition continues, with careful management, to improve very slowly month by month.
She still requires the help of part-time carers to live, and is currently severely affected, housebound and largely bedbound. All of her activism and advocacy has been conducted from her bed using a laptop and a reclining laptop stand. Jodi is at best able to spend just 30 to 45 minutes 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 being needlessly made far more ill and disabled due to 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.
For the same or similar reasons, the majority of HFME contributors are likewise disabled.
There is very little advocacy for M.E. patients, and HFME contributors have determined that despite their high disability levels, they must do what they can for M.E. advocacy.
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. This is helped immeasurably by the bogus concept of 'ME/CFS.' 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 as slick, faux advocacy groups gain more and more popularity and support from uneducated and misinformed - and often misdiagnosed - patients.
HFME is run by and for M.E. patients.
HFME contributors also aim to advocate for those non-M.E. patients given the always 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.
'After writing my first paper on M.E. in 2004 I suffered excruciating pain, heart problems, seizures, blackouts and loss of vision for weeks and months. I never could have imagined back then being able to create a site like the HFME website is today, or writing books on the topic of M.E. as I recently have. Something I began out of utter personal desperation is now something positive that I do out of choice, to try and help others.
I'd understand it if someone were to look at my contributions to HFME and be sceptical that they could have been done by someone so ill and disabled. It really is amazing what 30 minutes of work a day and lots of late-night musings, list-writing and notebook scribblings amount to after 7 solid years.
While I'd really love to be given access to my pre-M.E. brain for a few weeks to polish my writing style, I feel extremely lucky I've been able to do so much, bit by tiny bit. Some days I can still hardly read any of the site let alone believe I wrote so much of it!'