BRILLIANT!! YOU SOUND SO MUCH LIKE ME IN your way of thinking. I was wearing myself out until after 5am on a BAD day just to read more - altho only a bit so far. I'm using my laptop lying down with cushion on my chest - too "weak" to put up my specially made "BedDesk" having been 100% bedbound and unable to turn or sit for 4 years - 2 spent in hospital (but still able usually these days to be very mentally active - of a kind). I have had SO many of the EXACT same sentiments that I could hardly believe it. My family live in SA and NSW and my sister is also an artist who would love your hummingbirds so much! FAME to HUMMINGBIRDS (it's cryptic really). Hope to ability again soon to revisit and follow up.

PS Dr Betty Dowsett is a heroine and a wonderful lady whose work I have long admired

Hi Jodi,

I was diagnosed with 'CFS' about 7 months ago. I started with a rough viral attack .I suffer from dysequillibrium and motor weakness, autonomic dysregulation that has cycled in severity. I was doing moderately better after the 6 month mark and went back to work, but continued to spiral down and I have relapsed. I just want to respond to your book review.

I agree regarding the Teitlebaum "Fatigued to Fantastic". I doubt that he had ME, he maintained that he had chronic fatigue. My doctor suggested that I get this book. As you can well imagine, it hasn't helped me at all. My doctor asked for my opinion after I read the book, and I told him it was a big broad overview that represents a lot of fatiguing illness that has nothing to do with ME. It is a vague, broad overview for "tired" people but has no references to dysequillibrium or orthostatic intolerance, NMH or any neurological disability which are attributed to this disease by some of the most respected doctors in the CFIDS area such as Dr. Cheney, Dr. Bell, Dr. Hyde, Dr. Peterson, etc... have been finding evidence that ME is a neurologically centered in the dysfunctioning brain. Dr. Behan and Chadhuri have compliled hopeful research along with Dr. Gow and his ongoing genetic profiles.

Dr. Byron Hyde's Report from the 7th Annual AACFS Conference - Dr. Hyde wanted a tighter definition of ME on a neurological basis when ME emerged for definition , but what happened, was a complete unraveling by the CDC with all kinds of silly and nonsensical definitions of "fatigue" etc..creating a bloated and expanding list of ailments that are not ME! The disease then was renamed Chronic Fatigue Syndrome and the public assumed that they were all one and the same. Suddenly this syndrome according to Teitlbaum is 85% curable, but Dr. Bell says very few are back to normal or even functioning years after onset.

Meanwhile, what I think is necessary, is for really sick people with ME must be tested periodically to determine measurable levels of neurological, cardiac, autonomic (and all other pertinent tests) disability . Numerous tests by respected doctors have shown such a large amount ot derangement in the CNS of ME patients. We are all sitting on the egde of the cliff waiting... not at all unlike the MS patients before MS was finally clinically determined.

Finally, Teitlebaum's final chapter analysis of a "world out of control" is the worst garbage with absolutely no basis in science, just his weird theory. If you do buy the book, buyer beware!

I found your website to be very helpful and informative

I have found this site so helpful and so informative I am having a severe relapse at the moment and its hard to cope with but reading the site makes me feel less alone, thanksxx

Your website is brilliant. You have captured so much good stuff here. Most of all, the fact that you manage to do your art while being severely affected is an inspiration. I am in a relapse, am not as severely affected as you (though wild vertigo, smarting eyes, sensitively to bath temperature, are among the symptoms I have). I have given up sculpture and painting, but I think looking at your website will help inspire me to re-start.

I am totally lost when I read these research studies on gene expression, ion channels, different kinds of RNA, and so on. I tried to read the Suzanne Vernon article "Exercise responsive genes measured in peripheral blood of women with Chronic Fatigue Syndrome and matched control subjects". I spent hours looking up words like "chromatin" "nucleosome" "ion channelopathy", cytoplasmic vesicles, receptor and gene ontologies. I don't understand any of it. I am a college graduate and I once had a high IQ, but I am desperately in need of help with some of this information.

What a courageous lady you are! I take my hat off to you. I am a reflexologist with a client with ME. I tried, and failed, to help her, and wanted to know more about the disease. I found your website and found a wealth of information. I am doing a short talk next weekend, and will be able to use a lot of this, so spreading the word about the truth and myths of ME. Thank you for this, well done and keep going.

Pam

What a GREAT website!! Please continue doing what you are doing!

hi. thank you so much! i've just had a crsashing relapse, i've had ME for nearly ten years. It seems now i had encephalitis at strat of this year,a t least this has achieved the result of finally getting some medical atention. i was so lost in the severity of this relapse,.the loneliness and isolation is the worst, any sense of shared experience makes you feel more connected to an ever distant world. bless you for doing this!

This is one of the best sites on M.E. I have ever found. I was diagnosed when I was 12 (I'm now 18) and I feel like even though I knew a lot about M.E., this site has given me a real boost in what I know. Thank you :) I wish all doctors would come and see this site.

Oh my god, I could just cry! I was diagnosed with ME/CFS almost a year ago and although my own GP was absolutely wonderful, the specialist he referred me to was useless. I ended up feeling like everyone just thought I was crazy and there was nothing wrong with me. Luckily I have wonderful friends and family, and an ever-patient husband, who made me realise that this was not the case - the specialist was just one of those people who shouldn't be practicing medicine!

I have never seen ME described to accurately as on your page. I am immensely impressed. It IS hard to keep going, and your analogy of the hummingbird is so perfect. I actually managed to go back to college this month...I'm meant to be in 3 days a week, but rarely make it, although I am pretty much keeping up with the work at home. I didn't expect it to be so difficult...the eternal optimist (or victim of denial). Reading your page has really made me feel better, less alone and more positive about the future.

Hi,
Your site is fantastic, I wish all the Doctors would read it! Is there any way to find an understanding Dr who knows how to treat this illness in Tasmania?

AWESOME WEBSITE!!!!! VERY accurate,...excellantly done!!!!! It was recommended to me by a friend and fellow patient from the UK!!! It IS makin' it around the world!!! I will definatly be a regular here!!! there's a lot I want to print to pass on to friends, family, and a couple of DR's in paticular!!! And still A LOT I haven't read yet! BRAVO!!!!!!!!!!!!!

Hi I really enjoyed reading your website I'm going through a bad relapse with m.e at the moment due to an infection and spinal problems flaring up. i'm 47 married with a 17 year old son.

Hi,
Thanks for a great web-site, it is the best I have seen. I also suffer from ET (Essential Tremors) and own an on-line support group.
Keep up the good work and take care, Gaylene :)

Hi Jodi,

One of my friends heard your radio interview recently and came to see me with the lsit of symptoms taken from this website. Like so many others, I had a "lightbulb moment" where I realised the illness I've had which has become severe in recent months fits the description for M.E. I'm not sure where to go from here and would love to hear from anyone who knows of a sympathetic doctor in Tasmania. I would be willing to go to Victoria to secure a diagnosis if I can't find a doctor closer to home. My email address is emmalsearle@hotmail.com - Jodi, I hope it's alright to use the guestbook to ask for help! My family and I are becoming increasingly desperate and I'm so grateful for this resource. All the best,

Emma.

I just listened to your radio interview (sent from another source) and wanted to know more; so I've read a number of sections of your website. Thanks so much for what you do -- and for being who you are! Yours is a very great gift to others.

I have just read M.E. The Medical Facts, and burst into tears. Here at last is a summary of my condition, my daily experience, and the dozens of medical diagnoses that dozens of specialists and GPs have given me and quarrelled over. It has been next to impossible to make my friends and my family understand what I am going through. I feel outcast and disrespected because not only do I not work, I barely look after myself, let alone anyone else. so now I can print out this page and stand over people (sit over people!) while they read it, and hopefully they can get the idea. Oh, better mention my darling sister who has been the only person who has ever GOT IT.

Jodi you have made my life so much better! THANKYOU.

Well Done Jodi!
great interview.
Best Wishes...

Hi Jodi,
Thanks for the information I have printed it out and sent it out to others. Also a big thank you because through your site I am now in contact with Angela (Cara's mum) from South Australia which is a life line. Healing thoughts coming your way. Linda, Mum to Nicky.

SO RELIEVED TO FIND A SITE WITH SUCH CLEAR AND OBJECTIVE INFORMATION REGARDING THIS TERRIBLE ILLNESS. I HAVE BEEN BATTLING IT FOR 13 YEARS NOW, AND CAN RELATE TO EVERYTHING THAT YOU HAVE PLACED ON YOUR SITE.

I DON'T FEEL SO ALONE ANYMORE.

I THINK IT'S AMAZING THAT YOU WERE ABLE TO COLLATE THE INFORMATION AND PRESENT IT SO CLEARLY. I AM PRINTING THE INFORMATION OUT TO PASS TO THOSE AROUND ME SO THYE CAN BETTER APPRECIATE THE ALL PERVASIVE NATURE OF THIS LIFE ALTERING ILLNESS. GOD BLESS YOU

MANY THANKS
LILY

One of the best sites I have come across on ME. Very informative and beautifully designed. Keep going and well done.
Thank you,

S.

I came here after listening to the Hack interview.
In 1986 I suffered "post viral meningio myelitis", which must be something similar (the inflamation of the myalar) Sorry about the spelling, I never wanted to revisit it really.
Very interesting story and you come across as a fantastically "together" person.

Many thanks for the web site. More help here than I've had in 17 years from the medical world. Thank you also for the image of the hummingbird - I will not forget it!

I too heard your interview on Triple J last week and until then was not aware of such an illness. Your website is brilliant and thanks to it, I now know much more about M.E. I have total admiration for your life-long courage and thank you for taking your time to create such an educational site.

Good Luck Jodi, I wish you all the best.

Sarah.

Country: Norway
Date: Sep 1 7:54 EDT 2005

Thank you, Jodi Bassett, for allowing your articles (all of them wonderful!) to be distributed. We have translated some of them and they will soon appear on our web site: www.me-forening.no

Cant remember if i have written here before BUT the site is superb..full of so much info and support
Keep up the good work Jodi..its much appreciated.
Flora

Hi Jodi,

I second absolutely everyone below. You are without a doubt one of the strongest people i have ever listened to! With everything you have to put up with - not being able to just go to the pub, see a movie, go to dinner whatever - you still sound sound confident, resilient and positive.

I tell you what, when you get through this horrible condition you're so going to have an upper hand on a lot of people, you are amazing.

My sister and I who were driving back from work and listened to your Triple J interview think you're awesome.

All the best

Chris

Jodi,

You are a true inspiration. I heard your story on JJJ, and think you are an amazing woman. Your positive attitude and will have certainly taught me a lesson or two in human nature. I hope that when my daughter is old enough she can look at her old mum (I am only your age currently)and be as inspired by me as I have been by you - then my work here will be done. Sad that the people that are employed to assist you in your health needs can be at times more of a hurdle than a help - yet sadly not so surprising - let their vibes slide! Thanks again!

Jodi,

Without wanting to sound unoriginal, I too heard your interview on Triple J and was absolutely touched by your courage. You are truely an AMAZING person.

I can't comprehend what it would be like to go through what you go through, but despite your incredible challenges, I hope you know that your incredible strength, and your ongoing efforts have made a big impact on many peoples lives. And that is more than what 99% of other people in this world will ever do in their entire lives.

The qualities you obviously have (as made evident in your radio interview) I think make so many so-called heroes 'pale' in comparison to your efforts.

I don't think I could respect another human being more than I respect you. I hope you feel a strong sense of pride and happiness as you read all of these messages.
You have my very best, most sincere wishes, for the most healthy future you could possibly have.

I wish you all the best. Good luck with everything!

Vaughan

Thanks for this great site.

Love your work Miss Bassett :)

I generally avoid reading CFS sites, as the misinformation and prejudice makes my heart ache. This time though, this time the only thing that has made me sad is the quotes section... When i'm feeling braver I might just add a few :)

Well done :)

Hello Jodi,
my wife and I heard your interview on JJJ in the car on the way home from work. We had to pull over and listen to your story. We just want to add our bit to the tidal wave of loving kindness coming your way in this amazing guestbook. You have touched us deeply and we send you our love. We love your art work.

Hi Jodi,

I heard your interview on triple j and like the countless others in your guest book was inspired by your strength, perspective and humour.

I have had cfs for 4 years but it has not been nearly as debilitating as what you described. still, i have struggled with it and feel so much stronger and in perspective about life than before and i have learned so much...but hearing your story gave me a big whack in the face about how fortunate i am and put everything into a whole new perspective. so thankyou. so so much.

i particularly understood when you said your self esteem is higher now than before you suffered from ME.

You have been a gift to so many people.

chloe

I have suffered from ME for 15 years and was so excited to hear you interviewed on triple J.. It was excellent to hear someone so articulate and clear speaking on the subject. I am as debilitated as you are Jodi, and I have been unable to use the Internet until now -- I am able to participate in this technology now because I have Dragon voice activated software. It is a whole new world to me! I am so happy to have found your web site which is excellent and especially for someone as computer illiterate as me!!

Just heard you on the Triple J Hack podcast. I have to say I have never even heard of M.E. but was touched at your courage and strength. It really did encourage me to get off my butt and live my life more fully. If I don't. . . it seems like it would be an insult to those of you who just wish they could walk!

Dear Jodi

I was interested to find your website. Your hummingbirds are very beautiful and I really liked your description of why you have named your site as you have.

A Million Stories Untold was very informative. My daughter Elizabeth was first ill with ME when she was nine and is now 16. How true it is when you talk of people commenting that you can't really be ill. The longer we live with this illness the more cruel I believe it is and yet it makes people strong and I guess that has to be a good thing. Elizabeth no longer remembers what feeling well was like but says she does not feel sorry for having been ill, because the illness has helped make her the person she now is.

She is just about to get the results for her GCSE exams. She has missed at least a term of school each year since she started being ill, but this year it was far worse and she has done nearly all her work at home. She went to school for just 2 days from February onwards.

It was at this time that her so called best friend told everyone at school that she was a fake and makes the whole thing up, and from that time she was more or less ignored at school. One of my other daughters has a new friend at school who actually dared to speak to her and she was told off by other girls because no one is "allowed" to talk to Elizabeth because she is a fake.

She was ill during her exams, five were done lying in bed, she was ill in another four but in spite of this she thinks she has done well. No doubt when we get the result that will be proof to some people that of course there can't be anything wrong with her.

When all this nastiness blew up at school she decided to read out three poems from a book called Young Hearts which contains poetry written by young English children who are ill with ME. The poems make me cry. She decided for one time in her life to speak up and say how hard this illness is and what it's like when you are ignored and your friends give up on you. Her consultant thinks the poems are a very good way to make people understand ME a little better but it was after this that everyone really started to ignore her - what a crime to read three poems, but she is not sad that she did this because at the time it was very important to speak up for herself and by doing this she preserved her integrity.

I am very proud of her. Other illnesses do not seem to attract such disbelief. One day it will surely change but it is a long haul.

I do hope that your website gives you pleasure and satisfaction and I really do hope for you that just now things are not too bad for you.

Elizabeth feels she is one of the fortunate ones because she functions at around 70%, sometimes a little more, but she is also realistic and does not believe that she will ever really get better. She has lots of goals and ambitions going forwards and I know that she will achieve them.

Jane

Hey mate,

Your interview on Triple J was great. It's good to hear a real perspective on M.E. Your attitude is great, and so's the web site! By being positive you're already ahead of most other physically active people in your attitude towards life. I'm sure you will achieve all your goals, all the best for the future!

From Dan

Hi Jodi,

I couldn't think of anything to say that wasn't already said in the other wonderful messages sent to you over the past few days so instead I wrote you a poem. Keep safe, and thanks for your inspirating words on Triple J. You are remarkable.

It's an incredible gift to be so strong
When bed ridden and bound to a life most don't know
There's a courage and love you express in your writing
A way that celebrates possibility and the reason we are fighting

A baby hummingbird is possibly born every day
And you draw them in the most remarkable way
To each life you have helped on your own journey in time
Another learns from past errors, the collaboration of the minds

Passion grows from people who chose to believe
Infinite wisdom comes to those who chose to dream
Fragility is only in the space of one's mind
And you, Jodi, have the strength of a thousand in life

Regards,
Angie

Hi,
I heard your story on jjj and I was amazed by the courage and strength you show.I think you're a fantastic person and you come across as very intelligent. You are an inspiration to me and I wish you good health and happiness.

thanks, Maree

Hey Jodi-Thanks for your radio interview which I just listened to over the internet- for all of us with CFS. living such tough lives. I am not bedbound, but have been near so. God bless. Your interview is just one more thing that we need to help public awareness. You sound so intelligent, and your website is fantastic.

Hugs, Annie

Hi Jodi,

I have just listened to your interview after downloading it from the Triple J website.

Like so many people I have heard of ME but know nothing about it, after reading through some of the pages on this site I now have a much better understanding of this condition.

It must be frustrating to suffer from an illness that so many people do not even believe in, perhaps this will change in time. In the meantime I am glad you are staying stong and helping others through this beautiful website.

Thankyou. Can anyone let anyone stop them? Doctors pronouncing from on high, the Department of Social Security taking the self-congratulatory, no-brain approach. The first instinct of people to judge. Your interview was an insight in to the course of creative opposition.

Hi Jodi,

Thank you so much for your interview on Triple J. Your insight into this discease enducated me and so many others. Congratulations on taking a huge step towards your own self-realization by being brave enough speak about this. Your perspective & attitude are an extremeley positive reflection to the universe of who you are and who so many of us should aspire to become.

Thank you, I really appreciate it. My thoughts & prayers are with you. Love Glen

Hi! I heard you on JJJ's HACK the other day and wanted to know more about you, and M.E. You are a inspiration. Thankyou.

Hi Jodi,

Everdina just sent me your radio interview and the URL for your web site , so I have been listening and reading. Well done with the interview, its so hard concentrating and focusing at the best of times, but you sounded pretty "altogether" and its great that you managed a bit of publicity, and validation for yourself I think. You are much more unwell than i am, since i can get out and about when i have to, and sit up more. Yet, you seem to have accomplished soooo much, and I think it is amazing. (I gave up drawing and painting some years ago as it no longer "worked" for me, I regret the lack of creativity) Your web site is a painstaking work in progress and I congratulate you on the achievement. I just hope that there will be a way for you to feel better and recover somewhat at least, very soon. maybe the genetic work being done will provide some solutions.

Good luck Jodi, and well done.

I too listened to Triple J. Such a very impressive and comprehensive site! Shall we be calling you Dr. Jodi soon? I hope so. I now know where the best source of ME info is on the net, something I always wondered about since a girl I had a crush on got ME and I've never seen her since. Please keep up your good work and I hope all the visitors to this site help educate others about ME.

Regards

Hi Jodi
After hearing your interview on triple j yesterday and looking at your extensive website, I am convinced that you are a remarkable young woman. To be able to achieve so much, while living with such a debilitating condition is something to be so proud of. The inspiration you provide is not only of great value to those living with ME, but also to others like myself living with both a physical disease and a mental illness. Your comments in the interview touched me, and I can relate to a lot of what you said, particularly the 'disbelievers' and difficulties with accurate diagnosis and treatment.

Your intellegence, warmth, sense of humor and motivation in the face of such extreme debilitation is an incredibly valuable message for all. From deep inside my heart I hope that you are able to achieve your dreams and much more, through an improvement in your health.

Thank you Jodi, for speaking out for all of us out there who suffer from illnesses that are so often misunderstood. It is through information, education and positive role models that others will learn to make the most of what they have, and be more tolerant and understanding of the difficulities faced by others around them.

live strong
Julie

Such an inspiring web site, i have only just heard of this disease from listening to triple j. I didnt really get what it was until i looked it up.

I am so happy to have looked at this site i think more people should read about this to get a good understanding of what you have to live with.

Stay Strong xx Charmaine

I heard you on Triple J and just wanted to let you know that hearing your story has made me appreciate everything i have, even the things i thought i would rather do without. I commend you on you courage although perhaps you may not think about it so much as that.

I'm not religious but i am spiritual and despite what your beleifs are, i beleive that we all have various lessons to learn and we often use other people as a learning vehicle and i just wanted to say that you left an impression on me (like the metaphor of a drop in water and the ripple effect)that you won't understand as it is outside your circle of concern but i hope you feel better soon.

Kindest Regards,
Charmaine

hey there, i listened to you on tripple j the other day and your story really toucched me and i feel for you alot.

Hi Jodi. This week I heard you talking with Steve Kinnane on Triple J. I just wanted to reassure you that although you suffer with a "stupid brain" sometimes, you come across as a very intelligent, articulate and funny girl. I wish you all the best and congratulate you on your positive stance in the face of ME. You are a very inspiring person, even to an able bodied person like myself. You go girl!

Hi Jodi,
I heard you on the radio last night and I just wanted to write and tell you how brave I think you are. I don't know anyone with ME but should I know someone in the future I will have a better understanding of what ME is and how it effects overall health. I love your hummingbird paintings they really are beautiful. I wish you luck in achieving your dreams. sarah xx

Jodi,
I was listening to 'Hack' on Triple J last night and heard your story, and related so much to it.
You really are an inspiration. I have seen so many doctors in the last 7 years and so far, I am still suffering. I didn't realise so many others suffered too.
You have done an amazing thing, to put this website together, and have so much informative research in it.
Thank you
~xox~

I had never heard of M.E. Before I heard the interview on Triple J on the 23nd August. I was facinated at the fact that I had never heard of it as I work with people with disabilities, and am studying psychology. I found this site excellent in giving me knowledge of it and also devestating. I cannot believe how this is downgraded so much. I give all my support to the sufferers out there and hope in the future there can be change made as to how people view this terrible illness. All the best :-)

Wow, heard you on Trilple J last night.
Never again will I complain about my workload and I will always be grateful that I can run, walk, sing and play with my kids.
Thankyou for hanging in, keep hanging in you may never be able to do what I can (and have complained about) but the gift of this web site for other sufferers is a huge feat in itself. I wish you peace and happiness Jodi.

Hi Jodi,
My name is Mary and i was lucky enough to listen to the interview you did on triple j yesterday. It made me so interested in your story and M.E. in general that i couldn't help checking out your website. This site is amazingly comprehensive, even for me, someone who before yesterday had never heard of M.E. I've had a good look at the site and was happy to see your interests are similar to mine. I'm a big fan of PJ Harvey and i'm a film student, so i loved discovering your interest in fine art and graphic design. I can't begin to imagine the difficulty you would encounter pursuing the things you love, but i just really wanted to say hi and that i hope your condition continues to improve! And of course that you can continue to produce your art!!
I would love to hear from you but i understand it takes time :)
Mary xo

Hi Jodi
I heard your story on 'Hack' yesterday as I was driving home from work..You are truly inspirational. I applaud your courage and admire your strength in trying as best you can to continue to get on with life. Keep up the great work. Your hummingbirds are pretty
love Su

I pulled my car up to the side of the road and listened to your voice on the radio while it was snowing. When I turned back into the busy traffic I was sad and empathetic. A brief flutter of time was balancing and realistic.

Just quickly - I heard you on Triple J last night. I could not connect your voice with the disease you have, I simply could not believe how strong, courageous and happy you sound despite the severity of your condition - I was glued to my radio, even sitting in the garage to listen to the end of interview. I will never again complain about being tired from a days work in the office or walking up the hill to catch my train. Stay strong you are an amazing woman! x

I heard Jodi talking about her condition on triple j and I thought she sounded so strong and amazing talking about her condition which must be so incredibly terrible to get thru. Goodluck with getting well Jodi..xxx

I was fortunate enough to hear you speak on Hack last night. I, who am an able bodied mother of 2 who works both at home and paid employment and often feels the stresses of my life are too much. You, through your strength of spirit (yes I could feel that) made me think of how much I really have to be thankful for. Thank you for that! You are to be admired - I wish you well and hope the dreams you aspire to come true.
Best wishes

Hi Jodi, just want to let you know you inspire me to live life to the full. I visited your site after hearing you today (22 Aug) on Triple J, because a lot of what you said was new to me, and interested me. Whilst I'm healthy, and have no idea what it would be like to be in your condition, I took something from your interview, and that was to think of every day of health as a blessing. I wish you well, and hope your dreams of recovery come true, so that you can do those things you talked about and see the world outside your room. One day I hope that M.E will be properly understood and recognised and that through research a cure will be found.
Until then, I'm sure you inspired others as well as well as me.
Stacey

Hi Jodi, I listened to your interview with Steve on triple J this evening, and was so deeply moved and sadened to hear about your condition i was compelled to read all about M.E and your personal story. Your paper "A Day in the Life" is heart-wrenching and almost unfathomable, but incredibly well written. You should be immensly proud of what you've achieved in the last year, and please keep positive. Your positive activism is doing so much to help people in similar conditions. Thankyou so much again for opening my eyes and educating me on such a serious condition. My thoughts are with you and your family, i will definitely keep updated on your progress and additions to site. Rachel xx

Hi Jodi!
I heard your interview on Triple J radio this afternoon and had to find your website... the interview was inspiring, informative and moving but your website is AWESOME!!
As a radiographer who works with sick children, I try to never take any day for granted but was amazed by your positivity and tenacity.
I will return to your website to read all of it as I will admit that before today, I knew nothing about ME and very little about CFS. If I can do my bit by letting more people know about ME and CFS, I know that you will be doing more just by getting through each day still filled with some hope for tomorrow. Your hope and optimism for having a 10 or 20 percent normal life humbled me.
Well done on todays efforts.... when you are stil recovering at least know that you have spread the word and also inspired many!!
Take care :)

I heard you speak this afternoon on triple j and I was so touched by your strength and passion. I have read through your site and am amazed by your accounts and that of others. I send thoughts of strength to every sufferer out there, I am absolutely amazed by you all. Your hummingbirds are beautiful and I am saving my pennies for one starting right now.
Wishes, Kirstin Xxx

Hi Jodi,

I heard your story on hack today (monday). The interview was very informative and gave me a great insights what someone with ME has to deal with. I wish you all the best,
Regards Ricky

I heard your interview on Hack. I had never heard of ME before. I just thought that you would like to know that you have educated another previously uneducated person. Hang in there. I can't imagine how tough it must be!

Hi Jodi,
I heard your interview on JJJ (Hack) today and was touched by your ability to be positive and even humorous thoughout the interview! You are inspiring. I did not know anything about M.E until today.
Your website is excellent and easy to navigate. I hope that you are having a good day when you read this in the guestbook!
I will certainly be encouraging friends to visit your website to raise some awareness of M.E.
Take care
Ange

I heard your story on Triple J today - I am in complete awe as to how you sound so strong and positive with such an obviously devastating disease - it puts the little things into perspective. All the very best with beating this.

Hello,
I had the benefit of listening to your amazing interview on Triple J. Faced with what you describe as your condition, I'm not sure I could be as strong and brave as you. I can't imagine the day-to-day difficulties you face but you keep going. Your determination, spirit and enthusiasm are inspirational. Earlier today I didn't know what ME was. I didn't believe it could deliver such suffering and hardship. Now at least I have a better understanding of my ignorance. You are a special, charming and gorgeous girl and an absolute credit to yourself, your family and as an advocate for the recognition of ME. I wish you all the very best. Thank you.

I heard you on the radio today and looked at your website. Your optimism and positivity are just inspirational.

I heard you on JJJ today. I can't even begin to imagine what it must be like to have M.E. You have such a strong spirit. I really admire your perserverance and strength.

Take care, Nicole

Jodi, heard you tonight on Triple J. Inspirational and enlightening. Congratulations on your tenacity and courage. I'm sure this helps to create awareness of the condition as well as the inspiration to succeed against the odds, something able bodied people need well to be reminded of.
Congratulations
Cathy.

just finished listening to you on triple J!

you are awesome! What a fab attitude!

i am a chick para (bike accident when i was 10) and use a manual wheelchair... i have never heard somebody be jealous of poeple in chairs...

your story is truly mesmerising and i applaud your story told with such dignity.

Hi Jodi, heard your interview on Triple J with Steve Cannane this evening. Was very impressed with your optimism as i too share that trait. I'm pertfectly healthy and have just moved to Rockhampton,QLD from Sydney for a few months and am perplexed as to why most of the population are either cynical or pessimistic/negative about life. I moved here to finish a music CD and hopefuly find new talent in music? Listening to your voice you sound very strong. Do you have any ambition to sing, write music/lyrics or poetry seeing as you've put together this wonderful website maybe you'd like to share your thoughts as words to your fans. or drop me a line. Thanks Stephen

Yeh herd you on tripple j 2nite. Just wanted to wish you luck with your recovery and that you were a real inspiration to me. Hope it all goes well. :-)

Hi Jodi
I was listening to JJJ this evening and heard your interview - so came online to check out your site. From what I have just read about ME, I am amazed that you have put together this site - it is an excellent resource (and the hummingbird is a lovely analogy) and you are obviously a very determined and talented woman. I hope you recover much more than the "20 percent" that you mentioned in the interview!

Hi Jodi!

I just heard you on Triple J's 'hack' and thought id come and check you out! you were VERY articulate and provided great info for the listeners out there- thankyou so much! I will be looking more and more through your site during the coming days/weeks (!) wow...you are doing A Good Thing.

Cheers, Longy xx

Dear Jodi,

I've just spent the past few hours reading through your website; I was moved to tears while reading your Day in the Life, I was ashamed when I discovered my own misconceptions of ME (I, like many, had no idea of the pain associated with this illness) and was truly delighted by your art work.

Congratulations on creating a wonderful website and thank you for showing us what a strong and independant individual you remain, despite the terrible illness you fight.

If there is anything I can do for you, please don't hesitate to let me know.

Cinzia x

hi jodi, i just heard you on triple J radio, and thought i'd say thankyou so much for pulling them up on the passing comment chris and craig and that caller made. i was listening that day as well, and was a bit surprised she (the caller) joked about 'chronic fatigue [syndrome]' like she did, but didnt think much else about it. hearing you speak about it though was very very enlightening and i look forward to reading more on this site when i have time. thanks again!
al

I heard you on JJJ tonight and was impressed at your attitude and strength. I think its wonderful that you use the little strength you have to help others. I wish you all the best ad sincerely hope things improve.

Best wishes, Astrid.

Hi,
I heard your radio interview on Triple J today and would just like to say that you are an amazing person. To have such strength and courage whilst still faced with adversity is inspiring. Hope your dreams come true
Cheers

Hi Jodi, just heard you on Triple J and decided to visit your website - looks pretty good! Nice music taste (but you need some You Am I in the list!) Seeya.

Dear Jodi, I just heard you on Triple J. Thanks for sharing your story, I had a friend with M.E. who I lost touch with a a long time ago when she moved away. I found out a while later that she had passed away. Thanks for helping me understand her illness. - Jen.

I heard you on triple J You are so strong

Heard your segment on Triple J and looked up your website as a result. I had never heard of M.E. before and so thankyou for all your hard work in making this website available to inform me and many others i'm sure.

Thankyou. Your web site has helped me so much today. It is so rare to find others that understand what it is like to live with ME. I look forward to reading more as I'm able. I've had ME for over 10 years. Love and Blessings.

Thankyou so very much for such a wonderful site,

i was diagnosed with M.E 14 years ago and i am severely affected bedridden/housebound and it is great to see a site that describes the devastation of this illness perfectly.

well done and sincere thanks for all the hard work it must have taken to put together the most informative site i have ever seen

misty xx

Hello!

This is a wonderful website! I love it more and more by each day!! So many book tips to read, and so much more to read and learn about this hideous disease that almost has gotten the best of me. But only almost!!

Thank you ever so much, and good luck with the site in the future!

Maria

A Million Stories Untold is the most accurate and powerful account of M.E. that I have ever read. I have had it for 25 years. I will send you a piece I wrote recently. Well done Jodi for writing something which was very timely for me. I have a 'friend' who has had a liver transplant - so therefore my M.E. can't be as bad can it? She had a new lease of life and has been fine for the past 10 years. She recently sat in my kitchen and told my husband to give me a good kick up the ass to get me out of my wheelchair. This spurred me to write the wrticle which I will send. All the best, Pat

This is a VERY comprihensive site, listing all symptoms, and illustrates, with various references, the severity of the symptoms. I am an M.E. sufferer since 1977, diagnosed 1983, and this illness has not only affected my whole life, being housebound, but has cost me dearly financially, and now I have contralateral synchronous breast cancer.The stress levels of this illness and trying to make docs understand, is overwhelming. Unless doctors know of this illness, how dare they have the supreme arrogance to treat us for other illnesses, without fully recognising the long term effects M.E., has on our bodies and central nervous system, and mitachondria. I speak from experience, and having set up a self-help group in the UK in 1984, for 9 years, interviewing 400-500 frightened people, pointing them in the right direction, with the help of friends. E.mail this page to every doctor you know. They need educating !! THIS ILLNESS IS MYALGIC ENCEPHALOMYELITIS. NOT "Chronic Fatigue Syndrome".

Hi Jodi,
I stumbled across your site tonight and thought your art was beautifully original and incorporated humour exactly to my taste. Then I turned my attention to all the info on ME and was so surprised to discover the amout of pain and suffering you have to go through. Each work of art you produce is a miraculous feat of passion and determination. I am so proud of you and i intend on purchasing one of your gorgeous hummingbirds when i have the money. Thankyou for enlightening me about the facts of M.E
Stay strong
Love Jessi

Totally cool! I have suffered for 13 years. You put it so well and all in one place. Really helped me to explain what is going on to some non believers.

Thank you thank you sooo much for all the wonderful information on your web site. I am about to begin with another new doctor (who I fear will no doubt want to put me on another horrible exercise program to "cure" me). When I can again sit at the computer, I am going to print out and take some of this information with me. We really are not mentally ill and YES there really is something -many things- physically wrong!! Gone are jobs, fun outings with family, and a myriad of other normal daily routines. All replaced with a new life of sorts. You are too sick to keep fighting these medically trained professionals. Just getting to an appointment is a major ordeal. Well, I shall think positively. Maybe I will get through this time.......

Have just found your website,can't describe how it makes me feel.....I am trying to get an official diagnosis after 18 months of going to the doctor. Also I am due to have a hernia operation in August, but am scared this will make the ME worse--does anyone know if this is likely? The thing I find hardest is trying to be 'normal' for my three year old son----but sometimes I really can't.I push myself to keep going for his sake,but am worried that I will one day just collapse and not get up again!! I admire your Hummingbird spirit, congratulations on all you have acheived recently. Keep flapping!! xxx

Dear Jodi,
What a wonderful website you created - and what a talented artist you are! I was wondering if you would like to have reciprical links between your website and ours. I think your website will be an inspiration to all who visit it. The National ME/FM Action Network is a Canadian, registered, non-profit organization dedicated to advancing the recognition and understanding of ME/CFS and FMS through education, advocacy, support, and research. We spearheaded the drive for the development of clinical definitions, and diagnostic and treatment protocols for ME/CFS and FMS. The complete Canadian Consensus Documents can be found on our website www.mefmaction.net

Marj van de Sande
National ME/FM Action Network, Advisor & Webmaster
Consensus Coordinator for the ME/CFS and FMS Canadian Consensus Documents

[ANSWER: Of course Marj!]

Certainly the best site i have found. When i was first diagnosed 28 years ago, there was no help, no understanding. I am suffering (another) relapse, but it is so different now, due to the efforts of people like you. It makes it so much easier to tolerate what is happening to me, esp my hearing!!!

a fantastic website to view and the most brilliant merchandise to buy to support a true and very nasty illness,i am a fellow sufferer

Your site is brilliant! It has really helped me a lot! Thank you for everything! It is amazing! You deserve so much praise!..I have M.E and have been suffering for a long time..Why do I suddenly feel like my body is packing in?..

Country: USA
Date: Jul 4 4:43 EDT 2005

God bless you for your hard work. I was taken down buy this illness 17 years ago. I admire what you have done!

Easily one of the top ten sites on ME/ICD-CFS, both in presentation and content. Must have been a hell of an effort to pull it all together, even if it was over several years. Full credit to you, and anyone who helped you.

Once in a while now, I do consult your website. At the same time i am glad for the rich treasure of advice your offering (also to us), and at the same time i am sad to hear what this illness does to so many people, including one human being, i do hope getting healthy soon again. And the same i do wish for everyone befallen by cfs/me.
Thank you
kindest regards and respect
sylvia

Hey Babe! what a wonderful website -it's taken me ages to get here,but it was worth it. Lots of love and happy healing vibes. Angela XXX

Hi I am 23 and have had ME for about 9 months now and I am deteriorating every day. As a result I have had to put my business on the market and I am now dealing with financial hardship on top of having my life stolen by this cruel illness. I think you have done a great job with your website and it gives other sufferers hope that they may do something worth while in their "minutes of wellness". I would be happy for anyone to email me, I find it helpful to talk to others who know what I am on about as I am sure most sufferers do. No pressure, I know that sometimes I may not write to someone for weeks and I am certain that it will be the same in reverse but it is still nice to chat to someone when you feel up to it.

We have two ruby throated hummers, they frequent our feeder regularly. your web site is totally awesome. Thank you. Phoenix, N.Y.

I FOUND THIS SITE VERY INFORMATIVE, KEEP IT UP

I was looking for information about hummingbirds but found out so much more! Thanks for the enlightenment. I pray to God to help you find some peace in your pain. Pam

Thank you for putting words to my disjointed thoughts.

Rachael, 3 years and counting with ME and FMS

Hi there Jodi.. What an achievement!

Have had ME for 10 years- your living 'second by second' is a perfect description. I had a major relapse after suffering cerebral malaria- for all those 'non - believers' out there- Jodi is right- this is a hundred times more painful and scary than cerebral malaria- love the hummingbird analogy- (being in English countryside- I have gone for a squirrel- for same reason). I too am hoping to work in graphic design- but have a long way to go to get to your level. Thankyou honey, for keeping so strong. Wish you all very best for future.

Hi Jodi, What an excellent site! My daughter Nicky has had severe ME for the past nine years (she's now 28)at the moment she is 99.95% house bound and 90% bed bound. I read her your A Day in the life, she sends you good thoughts as do I and hopes for some health improvment. Nicky is very isolated all her friends having deserted her over time but she astounds both me and her Dad with her positive attitude.

We have recently set up a local group and hope to become politically active. There needs to be more awarness of this illness and less stupidty, in Britain we are trying to fight it being seen as a psychiatric illness, which it is not. Keep on fighting and smiling. our thoughts reach across the distance to you.

Came to this site via Not Done Living. Your description of a day in your life brought tears of recognition to my eyes. While I am only bedridden 50 percent of the time, I share the common experience of vertigo, temperature dysregulation, allodynia, MCS, constant nausea and weakness of the limbs. I LOVE your Helpy Hints page and learned a few tips. I truly appreciate the immense effort on your part to compile well-documented medical information. I have added a link to your site on my fibromyalgia website.

Thanks for sharing your story with the world!

Thank you for this site. I'm finding it encouraging and useful.

Many thanks for a great site :)

Date: Sat May 10 6:13 EDT 2005

What a wonderful website. I am housebound, severely affected with ME for 20 years. It's such a boost to read such accurate information on the ghastly reality of ME

thank you

Date: Sat May 10 10:01 EDT 2005

Nice and informative website. Thanks for making it! The more info out there, the better we will be understood. :) The name, humming birds, genius..

Date: Sat May 7 10:01 EDT 2005

I thought that being housebound with CFIDS, FMS, and chemical/food senstivities was bad, until I read about a typical day for you. You are a person of great inner strength and I pray God will bless you.

Thank you for your compelling story.

Thank you for your wonderful and informative site Jodi. I can truly understand so much of what you've shared about how the illness personally affects you - and people don't understand unless they have ME, or something similar. I've suffered with it for about 7 years now, but due to negative reactions from some doctors it has become more severe over the past few years.

Keep up the good work. There is a reason for everything, though we may not see it now - and one day we will all be truly set free.

What really great information!! Your website is wonderful!! Thank you

Your site has given me the hope and support I need. Still, I am stuggling. Diagnosed 10+ years ago with MS, now, they say I don't have MS, maybe ME. I am on SSDI, where do you turn when you are a resourceful, educated person... and ya just can't see the light? I am humiliated, sad. I am a former teacher, not a dumby. Still, no one can understand the pain I am experiencing. I am tired. My spirit is tired.

Joid, this is one of THE VERY BEST ME/CFS sites on the entire Internet and don't you forget it! You constantly amaze me with your skill and perseveence at writing, and how you never give up. You have tremendous gets and determination and I'm totally proud and happy to be your friend.

Hi Jodi Thank you for signing my guestbook - thought I'd return your welcome visit :-) Great website you have here! Always a real pleasure to discover another quality ME website and I wish you every success with it - and your Acivism Gear product range. Onwards and upwards...Gordon

Great website and so informative. Will be sending you link concerning the CBT/GET database around our Group (25% ME Group), via our webnews system.

Well Done Jodi

Me too. Moderately affected, 95% housebound, trying to find a way to live with this devestating illness. Wishing you recovery that I hope to find myself one day. Concentrate on what you can do, not what you can\'t (my mantra). Your day in the life is sadly quite familiar, but lucky not often that bad, just generally crappy on a regular basis. I think it\'s the never having a break from it that makes it hardest to bare. Like you say, if it were just fatigue that would actually be rather good - I could just sleep more and feel better! ;) It's the glandular, dizzy, weird muscle thing and illness bit that\'s far worse. I also agree it is life threatening as I have fallen down stairs a few times, but lucky no broken bones as floppy as not realised was falling until after it had happened. chairopraactic and accupuncture helping, doctors useless, sorry think I\'m talking funny as brain useless today, hope this makes sense, just wanted to say thanks as don't feel so lonley. Thinking of you

Thank you for all the useful information!!

thanks for the site...

Thanks for this great website!!!!!!!!!

Hi there, I have been a sufferer for 8 years. I had bad health and then suffered like a seizure which a flue-like/viral illness followed. My health went down hill fast with numeerous problems, visual impairements,distorted sight, sensitivity to noise & light, muscle twitching all over my body, I could hardly hold a conversation and could not remember names or my own phone number I had had for 16 years. The worst I have to deal with is the pain everywhere in my body, back gut, stomach and joints. This was\'nt so noticable i n the first years but has get steadily worse over the years. I am 46 and feel like I am dying with physical pain.

About time I made the time to visit your excellent site. Well done Jodi & thanks from us all. You have made your life worthwhile not only to yourself but to a multitude of other\'s. A life well spent, a life that will be remembered, that is an achievement many healthy people do not make. (((( Hug ))) Keep on going Lady. Love from Sharon

My doctor gave me info to your resource yesterday. Oh my God,what can we do to get this tou there?

Many thanks for a brilliant site - technically very pleasing (as a happy amateur I have built websites) - and very helpful content.

I would not classify myself as a severe sufferer, my symptoms come and go. But as a reasonably educated reader keen to get to grips with what is happening to me, I found this very helpful.

I think what really gets me most is that I feel I have so much to do - I am a very involved person - yet my condition slows me down and drains me of energy. So I get more frustrated, feel guilty and my whole demeanour goes in to a downward spiral. Then I have to bootstrap my self out of the spin.

It is very reassuring to know that some serious attention is being given to this condition.

Thank you.

Christopher John Bennett

well i found you site amazing am goin to see my gp today and think i have ME its scarey tho but know am not alone

SOmething I have done that keeps me visualizing; I make scrapbooks(not the new fad scrapbooking)from magazine articles/pictures...I put quotes and ideas in this book. When I am so lost and hurting that my dreams won\'t ever come true..I pull out my book and even if it inspires me for one more nano-second of hope for tomorrow it is worth it. Even if it is delusional..sometimes it can lift my spirit.

Just found your wonderful site, it truly is amazing.
Best wishes
Kathleen McCall
Hampshire
UK

Hi Jodi thanks for leading me to your wonderful website so glad to have found people that understand some of what i feel....

Your site has been far more informative than expected considering so many sites repeat the same information over and over in maladjusted formats. All offer some insight to viral infections as a causative factor in CFS but struggling to discover one or more doctors or scientists offering treatment beyond the experimental level. CFS suffers such as myself need help now not 5 years down the road...my time is of value. At times, I feel my life represents sand cupped in my hands, with slightly parted fingers, watching the granules slip through helpless, grappling to catch each precious grain before they all slip off into nowhere. Again..thank you.

Hi Jodi,
Your site and work are both gorgeous. I was wondering if you\'d share with us where you got the table you mention that you use for your laptop computer in bed? As a fellow sufferer I'd love to know!
Best wishes and well done on an amazing site!

Dear Jodi,
Thank you ever so much for toughing it out and producing this site. Both my husband have been diagnosed with CFS & FMS...that\'s what THEY call it. We both instinctively known it\'s more than what they claim. When I began to read what you have written is exactly what is in my head and my husbands also. Our symptoms are not as severe as yours are but I can check a good many of those listed.
The only question I still haven\'t found the answer to is-how contagous is ME/CFS? My husband and I have stopped donating blood, no longer fill out donor cards and we definitely don\'t visit people with compromised immune systems.
I only and neurological and muscle problems until I met my husband and he only had the fevers, chills, extreme fatigue until he met me...now whe both have the same symptoms only sad to say his are worse.
I will keep reading until I find the answer.
Thank you sweetest of hearts for all this information and your beautiful hummingbirds.
I will add you to our prayers.

Just wanted to say this is a great site :) I have ME myself and it\'s nice to finally see a site that tells it like it really is.

Keep up the good work - you have done a fantastic job with the site

Dear Jodi,

I\'ve just come across your site through a link posted on the AYME (Association of Young People with ME (UK charity)) message board and am amazed. You\'re website is brilliant and very touching. Your eloquence is amazing. Your hummingbirds are beautiful and some of the imagery actually scared me in how well it portrays some of the feelings both, physical and emotional, of ME.

I am 19 and have had ME since i was 12 (7 and a half years now). I had a gradual onset from apparently perfect health. I am now considered to be severe but thankfully am not bedbound fo