A Hummingbirds' Guide

Information on the neurological disease Myalgic Encephalomyelitis by Jodi Bassett
Fine art by Jodi Bassett

About this website....

Apologies, this page, and this website, has moved.

To view the new Hummingbirds’ Foundation for M.E. website, or to learn more about the HFME, please go to: www.hfme.org

Please update all links and bookmarks accordingly. Webmasters please note, redirection notices such as this one will only be left up on the HGME website for one year (until July 2010).

Sincere apologies for the inconvenience.

Contribute to the HFME site

If you have anything you'd like to contribute to this site, PLEASE don't be afraid to do so!

More than anything I think, we'd love to have a few more "A Day in the Life of Severe ME" or 'Case Studies' pieces written by other sufferers. It doesn't have to be as long as mine is, or if you want it could even be a bit longer! Whatever you prefer - you could even write it in point form if that makes it easier for you. Your CBT and GET stories are also very welcome.

You could also submit:

Quotes (medical, political, inpiring)

Practical tips

Helpy Hints for coping psychologically

Links to good ME research papers for the Research and Articles section

Links to any new ME Support Groups or Political Discussion Groups (including your own)

Links to good ME Websites (including your own)

Essays you have written about ME politics, or any other ME related topic.

Written descriptions (long or short) of what your ME feels like to you, how it has nothing to do with 'fatigue'

Books you would like to see reviewed on this site

 

I can't promise to include every item which is submitted however, but I do hope and expect to be able to use the large majority of suggestions and submissions.

So please start sending things in and perhaps become a published writer online.

Copyrights on this site...

If you would like to email any of the essays or anything else on this site to friends, family or fellow sufferers please feel free to do so.

Same goes for printing out any of the information or essays on this site - go for it! That's what they were written for! Print as many copies as you like and please redistribute them freely.

If you would like to add a link to any of my articles or essays, or to my site itself, to YOUR website - please don't hesitate to do so. In fact, PLEASE do so! No permission necessary - you may link to as many individual pages as you like.

If you would like to put one of my essays on your own site - please read the section below for conditions.

If you'd like to publish any of my essays or anything else, (in ME newsletters or whatever it might be) I ask that you please inform me about it.

I do ask however, that if articles or essays are reproduced that they are not edited in any way and that they are reproduced in their entirety. Also that they are always attributed to me, and that the website address is always left on - so that people know where to come for more information if they want any.

If you have any further questions please don't hesitate to ask.

About the strong political views on this site...

I make no apologies for the fact this website doesn't gloss over some of the harsh truths about ME (as so many others do) and also that it is full of all sorts of political opinions about ME.

It took me six long years to be diagnosed and as if that wasn't bad enough it then took me at least three more years to get to get all the available facts about the illness, particularly about how severe it could be. I assumed that websites by fellow sufferers (and those that would advocate for us) were completely credible sources of information and that if anyone would know the facts about this illness they would, but bizarrely this turned out not to be the case (for a variety of reasons). This is just totally not good enough.

I think being aware of the issues is vital if we're going to get anywhere with improving recognition of ME as a serious organic illness so we can get the help and support we all so desperately need - there is just no justification or excuse to be made for anyone offering information about ME; to pretend that this illness is less serious than it is, continuing to spread outdated and incorrect information about the illness or uselessly fence sitting on the important political issues* that affect those of us with the illness so deeply.

[*Indeed politics and research are inextricably linked. There so much fraudulent info out there about ME and 'CFS.' If you aren't aware of ME politics how do you know who has the real information about the illness, and who is presenting their own version of the 'facts' to further their own vested interests? So much reserach has been done to prove the organic basis of ME and look where it's got us - nowhere! We need to have our politics working for us as well or nobody will even bother looking at the hard science. Politics are MORE important than science with M.E. unfortunately.

Following the politics of ME and participating in as much activism on the issue as you are capable of is so important if we are going to get anywhere with getting recognition for this illness. It needs to be all about about educating yourself and refusing to take any more nonsense! I think just having ME is a political act - so no matter what you do you can't be politically neurtal so you may as well fight for OUR side!]

Donation history

Part proceeds (30 - 50%) from all the artworks sold on this site I have said I will donate to ME research. This is a list of donations made so far. They may be small but I'm hoping they will increase over time! (Several donations were also made before April 16th 2005 but I did not keep records up until this point)

Amounts are given in Australian dollars (AUD).

  • Donation: $40 AUD Donated to MERGE on April 6th, 2005
  • Donation: $16 AUD Donated to MERGE on December 12th, 2005
  • Donation: $81 AUD Donated to The Nightingale Research Foundation on February 7th, 2007
  • Donation: $81 AUD Donated to The Nightingale Research Foundation again on February 7th, 2007. (This donation is from my family, who have said they'll match dollar-for-dollar any donation I make to M.E. research through art sales on my site!)
  • Donation: $22 AUD Donated to The Nightingale Research Foundation on December 14th, 2007 (thank you Mona!)
  • Donation: $22 AUD Donated to The Nightingale Research Foundation on December 14th, 2007 (my family matched the first donation)
  • Donation: $6 AUD Donated to The Nightingale Research Foundation on March 22nd, 2008 (thank you Judy and Melinda!)
  • Donation: $6 AUD Donated to The Nightingale Research Foundation on March 22nd, 2008 (my family matched the first donation)
  • Donation: $36 AUD Donated to The Nightingale Research Foundation on April 1st, 2008 (thank you Vanessa!)
  • Donation: $36 AUD Donated to The Nightingale Research Foundation on April 1st, 2008 (my family matched the first donation)
  • Donation: $6 AUD Donated to The Nightingale Research Foundation on May 10th, 2008 (thank you Jaci!)
  • Donation: $6 AUD Donated to The Nightingale Research Foundation on May 10th, 2008 (my family matched the first donation)
  • Donation: $12 AUD Donated to The Nightingale Research Foundation late October/early November 2008 (thank you iHerb)
  • Donation: $12 AUD Donated to The Nightingale Research Foundation late October/early November 2008 (my family matched the first donation)
  • Donation: $12.60 AUD Donated to The Nightingale Research Foundation May 2009 (thank you Amy)
  • Donation: $12.60 AUD Donated to The Nightingale Research Foundation May 2009 (my family matched the first donation)
  • Donation: $6.30 AUD Donated to The Nightingale Research Foundation May 2009 (thank you Mary)
  • Donation: $6.30 AUD Donated to The Nightingale Research Foundation May 2009 (my family matched the first donation)
  • Donation: $50 AUD Donated to The Nightingale Research Foundation January 2010 (through art sales, and the iHerb affiliation scheme)

Note that this site can unfortunately no longer support MERGE financially due to their new policy of funding only 'subgroups of 'ME/CFS'' research, rather than genuine M.E. research.

And lastly....

There are bound to be lots of small mistakes all over this site - spelling mistakes, bad grammar, sentences with words missing, the odd bad link etc etc etc.

BUT, considering the state of my brain post-ME, what's more amazing is that I haven't stuffed EVERYTHING up! so I am more than happy to live with such minor errors!

What is important is that I have got all the big things right, and that I know I have done.