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About this website.... 
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The 'A Hummingbirds Guide to ME' website went public in early November 2004.
It is finished at this stage, none of the pages are 'under construction,' but I do hope to be able to keep improving on what I have written already and adding updates (as new information becomes available) and also to add a few more sections and new essays altogether - eventually (I have a list of at least eight new projects I hope to be able to finish sometime in the next few years - illness allowing). I also hope to be able to make the site available in a printed form, in time.
If there's anything you can think of that you wish you could find on the net (or elsewhere) about ME but can't, please don't hesitate to tell me your idea and I'll see what I can do. See the section below about contributing to this site for more information.
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Click on the link below to search this site...
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Contribute to this site...
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If you have anything you'd like to contribute to this site, PLEASE don't be afraid to do so! I hope one day to have work by lots and lots of different ME sufferers on this site.
More than anything I think, I'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)
Helpy Hints
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 or ICD-CFS 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 - why not! You might also like to use my new online submission and comments form.
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Copyrights on this site...
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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.
New reprinting rules for website owners!
After repeated requests, I've been persuaded to change the reprinting rules for some of the papers on the site (under certain conditions) for those with small or specialist M.E. websites or other websites on different topics which also contain a small extra section on M.E.
Like-minded M.E. (or other) website owners may now - if they wish - use one of the 5 papers listed below as their site's 'What is M.E.?' page (and format it to match the rest of the site etc.) instead of writing their own papers from scratch.
The 5 papers this applies to are:
2 pages: What is M.E.? Summary
12 pages: What is M.E.?
2 pages: M.E. The Medical Facts - Summary
10 pages: M.E. The Medical Facts
2 pages: The M.E. Symptom Summary
If you have any questions, please don't hesitate to ask, and also note that the following conditions apply:
- Note that permission is given ONLY for these 5 papers to be used in this way. The usual restrictions still apply to the full-length version of the 'M.E. Symptom List' and the extended and extra extended versions of 'What is M.E.?' and 'M.E. The Medical Facts' and all other papers on the site.
- These papers must be reproduced in their entirety and unedited
- These papers must be clearly attributed to me, and the website address left on - so that people know where to come for more information if they want any, or for Word or PDF downloads of the texts.
- These papers may only be reproduced for not-for-profit websites
- If you put any of these papers on your site, please check back at least annually for updates.
- If you would like to use a 2 page summary, but add in the reference list from the longer version that is fine. It is also okay to use both a 2 page version of a text as well as the longer 10 or 12 page version, giving your readers the option of a longer or shorter version.
- Permission is not given for any of these papers to be used on sites where our views on M.E. are substantially or overwhelmingly opposed.
- All website copyrights remain unchanged
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About the strong political views on this site...
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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 and ICD-CFS.
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 or ICD-CFS; 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 ICD-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 crap! I think just having ME or ICD-CFS 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!] |
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Am I affiliated with any groups or organisations?
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No. There are a large number of fellow M.E. advocates that I admire, and several groups which I think do some great work (see the Articles sorted by Author and Recommended Websites pages for information on these) but I am in no way affiliated with, on the board of, responsible for the website of, being funded by, or accountable to ANY M.E. or CFS or CFIDS group or organisation in any way.
I am completely independent in every way and this has always been the case, and I imagine things will stay this way for a long time to come if not indefinitely.
For the record, I am not currently a paid-up member of any M.E. charity, although I do plan to possibly join The 25% Group in the future.
This site is also not funded in any way by any commercial interests or other third-party, this site is funded entirely by me, Jodi Bassett
If you have any questions about my affiliations, please feel free to ask me for more information by email.
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About information on my own illness on the site...
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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!
I am just one case among millions and so should not and need not be given any sort of undue consideration or importance. There are also many people with ME who are far worse off than myself.
I really hope that in reading about some of my own experiences readers will understand this illness better and empathise with and want to help all of those who suffer with this illness. My own experiences are intended to be merely a jumping off point - not an end in themselves. That is my intention.
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About the term "ME/ICD-CFS" on this site...
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I initially used the term ME/CFIDS all over this site but have since been persuaded to change it to ME/ICD-CFS or M.E. and ICD-CFS (by a fellow activist) for the following reason:
1. Myalgic Encephalomyelitis has a formal classification with the World Health Organization (whose job it is to categorize all illnesses) since 1969. The ICD-10 classifies ME as a neurological illness with ICD code G93.3. CFS is also included in this listing - CFIDS is not. Having such a listing with the WHO is extremely important and losing it's protection could be disastrous.
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The terms ME/ICD-CFS and ICD-CFS may not be widely known as yet but are used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems.
It is also important to be aware that in practice M.E. and CFS are not synonymous terms. For more information about how two completely unrelated health problems came to sometimes share a name see What is M.E.? See Smoke and Mirrors for a discussion of why the disease category 'CFS' must be abandoned.
So from now on, every page on this site will use the term M.E. and ICD-CFS and I would strongly reccomend that all of us do the same. (In time the plan is that the CFS will be dropped entirely and we will just call it ME - let's hope that happens SOON!) | |
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Privacy policy
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This site is not funded in any way by any commercial interests or other third-party, this site is funded entirely by me, Jodi Bassett
I am strongly committed to protecting your privacy while interacting with this website.
Privacy Policy: I will not rent, sell, or share personal information about you (including your email address) with other people or companies for any reason.
I have not installed Cookie programs on this site and your IP address will not be logged by me when you visit the site.
Two types of information are collected on this site. The first type is anonymous information. This includes information about how many people have visited each page each day - the only information given is the number of people who have viewed each page - no other facts about each visitor is given, it is completely anonymous. This data helps me to make the site as useful as possible by letting me know which pages are the most popular and which are unpopular.
The second type of information collected is personal information. This is information provided by you on pages such as The Guestbook or the Contribute to this site page. How much information you decide to disclose is entirely up to you.
When you sign The Guestbook, your name and country information, as well as your comment WILL be made public unless you specifically state that you would like your comment to be kept private. It is entirely your choice whether or not to provide your email address when you sign but if an email address is given it WILL NOT appear on the website but will only be kept in my personal records so that I may perhaps reply to any queries you have (if I am able.)
The reason email addresses will not be displayed on the site is for your protection. If email addresses were made available on the site, they would be available to anyone on the internet and could be collected and used by others. This could unfortunately lead to you receiving unsolicited emails from third-parties.
When you make comments on the Contribute to this site page, you have the option of being quoted using either your full or first name or you may also be anonymous. If your comments are used the name you requested be used will appear with your comments but the email address you give WILL NEVER appear on the site but will only be kept in my personal records so that I may perhaps reply to any queries you have (if I am able.)
Comments sent to me by email will be treated with the same level of confidentiality.
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Donation history
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Part proceeds (15 - 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 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)
See the donations page for more information about making your own donations to fund M.E. research and advocacy.
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And lastly....
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There are bound to be lots of small mistakes all over this site - spelling mistakes, bad grammar, sentences with words missing, inconsistent use of terminology, 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! I think they probably add character anyway. Perfection always has been over-rated in my opinion!
What is important is that I have got all the big things right, and that I know I have done.
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Disclaimer
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A Hummingbirds Guide to M.E. does not dispense medical advice or recommend treatment, and assumes no responsibility for treatments undertaken by visitors to the site. It is a research-information and advocacy resource only.
Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.
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