Hi Jodi,

Your website is excellent and extremely thorough.

I was reading the section on "Testing for ME" and "Treating ME", and in the latter it mentions mitochondrial dysfunction and the fact that exercise can end up killing the mitochondria. I don't know if you are aware, but there is a new test available in the UK for measuring ATP availability in cells, and part of the test measures the degree of mitochondrial dysfunction.

Basically the test measures:
ATP levels
Functional magnesium levels in ATP related reactions
ATP->ADP conversion efficiency
ADP->ATP recylcing efficiency and
effiency of transportation of ATP and ADP across the mitochondrial membrane.

This may be old news to you in Oz, but I thought it might be worth a mention on your "Testing for ME" section. The lab that does it in the UK is Biolab (I read somewhere that Biolab developed it).

All the best

Mark

Hi Jodi

Absolutly fabulous piece of work. I have had ME since 1995 not diagnosed till 2000. My daughter has ME and my grandaughter and we think my mother had it too. I do like the way you have brought every thing together. I have been sending your site through the internet. i expect all my friends will be sick of me, Printed out for those ME sufferes who do not have a computer. good work Girl hugs joy

Just been to see the NHS physio - thought the assessment visit showed her to be empathetic - got hopeful...but THIS visit showed that I was - once again - hitting that Big Wall of Dogma, Bigotry and Judgementalism that is SO prevalent here. When I came across it when I lived in South Africa, it was a shock - but then I told the bastard off - and looked for another one - exhausting as everyone knows about the repeating all the symptoms - and having the fool act as if THEY need to go lie down, because you have overwhelmed them with information!!

But NOTHING could prepare me for the Gross Arrogance and dismissive bigotry I have had to endure here in the U.K. It is simply UnBloodyBelievable!
Their FIRST thought is always something Negative about their patients..if you talk Pain and ASK for medication..then you are labelled "A Drug Seeker"... if you speak with Any Knowledge about your illness..then you are "A Professional Patient" -Today I was told - in EVER such a KIND way that I was One of the Worried Well.. the worst thing of all was that I CRIED like a wimp - Absolutely Desperate for SOMEONE to Show Some sign, anything to indicate that Here I was Cared For, Cared ABOUT and above all - That I Was SAFE.

But you see, that is the LAST thing medics seem capable of - and this is such a Basic Human ability, not some special thing - most of us know it intstinctively.. not so Here!

What far too many of them dont realise is that they can Stuff their medications and their tests down your throat (and every other orifice) but NOTHING Heals like Kindness and the willingness to treat people with Respect. Instead of this insultingly suspicious behaviour they ALL have - that I am Exaggerating all this.
I sat here, thinking once again about suicide - (last time I tried to tell the GP that here, I looked down, saying I feel quite desperate, doctor..then looked up - To See him Looking Very Pointedly At His Watch!!!!)

But then I found You Hummingbird...

Darling One, my heart goes out to you and to think of what you are going through.

I have had this Swine of an Illness now for 20 years - and you'd think I would be Used to the Flak it gets - but I am NOT!!

I HATE doctors... found so Few that are Good - and got so Bad that I considered writing up a Hit List - BUT it got so long that I needed the thing to be Micro-filmed..hahaha!!

You are Wonderfully Brave and I want to Thank You for what you did for me tonight... no, I wouldn't really have topped myself, but YOU certainly helped me see that I am NOT alone.

I needed your courageaous honesty tonight. Thanks Nat

Just looked at your" Putting Into Context and for Lawyers Section ". While many parts are revealing they simply confirm what a large part of afflicted individuals have been trying to divulge in some cases for decades.

Very Best Regards

I have a son, 13 years old, with severe ME which has recently returned from treatment in New York city (winter) and has had a two week relapse after landing in our 90% humidity summer months.Is there any literature on changes of weather and hypotension?

Thanks

Jodi,

Great site..well done!

I wish this sort of info was available to me some 17 years ago when i was very ill with ME/CFS. (I am now 90-95% on all 3 criterion for CFS...but it was a very long journey with many hurdles along the way for me to recovery)

All the very best & happy to hear from you should you wish to respond.

regards

JON

CFS sufferer but have other problems as well, excellent site, thankyou, will visit again on a better day.

Hello Jodi , as a disabled individual i must say that although i haven't read your site fully i must say it is intriguing . The timing of it and some specific views are interesting .One can see obviously Dr.Byron Hyde's input in many areas .Having had the honour of having met Dr. Hyde and being seen as a patient by him and spending a fair amount of time i can assert that this is no doubt a brilliant man of science and has far more insight on many areas than anyone i have ever met to date .

Without a doubt i have suffered much of what is refered to by some of the numerous articles on your site and have cheated death at least from what happened to me on occasions at least a half dozen times. I highly commend you for your energetic efforts in setting up this website and sharing what you and the variety of contributors have brought to light .

BEST REGARDS
YOURS TRULY
CLAUDE .

I really enjoyed reading your site.

All the best, farmgirl.

Hi Jodi.

I love your site particularly the Hummingbirds! Thank you for making the considerable effort to put your thoughts together and make this great site. It is increbibly inspirational for all of us pwme.

I wish you the very best of health and great future as an artist.

Take care
Jo :-)

As a person dependent on red cell transfusions (2 units of PRBCs about every 4 weeks) and platelet transfusions (once every 2-3 weeks at present), I am extremely concerned about a possible infectious agent being left in the blood supply. Any other transfusion dependent people who read this, we need to get some answers from Red Cross as to the possibility of M E being given to us via the blood supply.

Em

Date: Mar 3 2006

Hi Jodi

My darling man came around with my newspapers this morning as, again, I was too sick to go to work (20 hours over five days a week). He quickly glanced at the front pages and said that there was an ME article and commented 'I'd like to read that when you've finished'. A bit of a shame that a fellow Skeptic got so much coverage in that article but very topical on the day that Prof Lloyd got so much coverage and Thorpie's manager was quoted as saying he was tested for, amongst other things, CFS.

After more than 20 years with this dreadful condition I thought I was pretty well educated about ME (I remember asking my then GP in the early 80s if I had ME - he thought I meant MS) but your site has taught me so much. I've even sent your link to my very worried adult children so they can understand a bit more.

I thought I was pretty bad but now realise that I am comparatively lucky. Even though there are months that I can't work (with associated no income) and my life is work and home to bed, at least I can work. I absolutely admire you and am in total incomprehension about how you can manage to maintain this site and continue painting. (This was meant as a great compliment and accolade - not as an expression of disbelief.)

Thank you - and here's to your health.

Wendy Akers

Jodi, - what you have done is nothing short of fantastic, I wish you the very best for the future. I look forward to hearing from you if you have the time.

Kind Regards, Warren

Thank you so very much for the effort to have this website up and running! It was very informative to both my husband and I, who are seeking information regarding ME-which I have had for a year. We have been very concerned with the treatment approach in the US due to terminology and the political medical issues here that cloud treatment and research. Thank you again for your fine efforts here.

Ana

dear jodi,

i cannot tell you how comforting and helpful i have found your website! i too have severe me and was misdiagnosed for the first three years of my illness. i live at home with my mother and i have now been ill for six years - but hope to improve. i'm 30, a journalist and share many of your interests.

x theda

I luckily do not have ME, but my 28year old daughter has been ill for 3-4 years now, almost housebound for the first one. Nowhere near as long as yours, but I know of the despair and tragedy that was involved in hers. And still.

We are hoping she continues to progress and that some little thing does not knock her backwards...her too of course..hoping that is.

Although I could feel her despair, I did not really feel it as pain and illness can only be "shared by empathy and compassion, but the sufferer still has to be alone in the feeling part - if that makes sense. As much as a mum would like to lift it all from their child's shoulders this does not happen. For us that is hard... parents feel that they should be able to protect their children from illness and accidents... its how it is or we would like it to be.

Take heart little Hummingbird you have opened my eyes on this illness as I did not fully comprehend it. Hopefully if anyone I know develops this I can point them to your site or at least have an understanding.

I really loved your extensive website with all the information and patient stories.

Thanks for creating such a great website.

I learned so much from your website.

I have had M.E. for seven years and have a severe case- though not as severe as yours. I am house bound, and spend most of my time in my easy chair.

I have created a newsletter I send out most weeks. It is just a lot fo fun stuff to make people like us smile. A sample can be seen at

http://www.leonashappyplace.com/braincandy.htm

Do you have a links page and would you consider posting it?

Thanks for the best and most informative site I have found on M.E.

I have been ill for a long time now and seem to be getting worse. Unfortunately South Africa is far behind when it comes to awareness, treatment, advice on ME. It is most frustrating and I don't know where I would be without the internet. Thank you.

A friend from my CFS support group sent me your radio segment. I thought I would check out your website and was very impressed. There was too much to read at one time. I know you understand. I do plan to revisit the site. Keep up the good work and thank you for your activism. I've been having a hard time lately and you are definitely inspirational. I can sit up for periods of time and do a lot of things for myself on most days. I wish that for you. I hope all of your dreams come true.

Dear Jodi GREAT website. Well done. Ive had m.e. 14 yrs and getting worse now housebound. God Bless& Happy, healthier New Year to all sufferers!

Hi Jodi,

I just heard your interview on ABC and came to look at your site. I had no idea about this medical condition and the fact that I am now writing this shows that your word is spreading and getting out. I think your website is great, keep up the great work and I hope that one day soon some advancements are made in this field.

Hi Jodi,

I'm currently listening to your radio interview on 774. You sound like a real sweetie and I hope everything improves for you. Your artwork is sensational!

All the best - Shelley

Very helpful to counter attempts to minimise the severity of this illness

after 14 years of severe m.e. it was great to find this website on xmas day as I so hate feeling this lousy on what should be a happy time and I know others will feel likewise over the"festive season"!!!! God bless all us sufferers

Hi Jodi,

I came to your website after hearing your interview on Hack. I was incredibly touched by your story, I don't know where you get your strength to continue but you are one of the most courageous people I have ever heard of.

I'm a medical student in Perth, and it is terrible how our medical system has failed to support you when you needed it most. I have emailed your website address out to my year group at med school, I hope they can all gain something from getting to know your story.

I hope you and other sufferers of ME can continue to stay strong, all the best to you and your family.

Josh

Thankyou Jodi for the effort you have put into this website! I have been home-ridden for 8 months, and a friend told me about your interview on hack, so i thought i'd look up the website.

I have been ill for 3 years and only this week had a diagnosis of ME. You can see it in peoples eyes they don't believe you are ill, but at last perhaps things will change. My bladder has failed so I have to catheterise and I use a wheelchair, when I am upto going out, and still people think you are a nutter !!! With websites like yours things can only get better - can't they ?

Thanks. This is a very interesting site. It's an inspration. Keep up the good work.

Thank you for finding the strength to dedicate valuable time to a site that provides so much clear information. My only disappointment with your site is that I missed it for many years!

Much of what you share resonates with me as I have come to understand this condition through research and personal experience. I have had CFS for nearly eight years and it has caused me to lose much of what I worked for in my life. It is truly a devastating condition.

I recently endured a careless insurance representative that forced graded exercise to the point that led me to a worsened condition. A small amount of knowledge can be more damaging than none at all. Unfortunately, my experiences with many medical professionals have left me feeling that "sick" people are seen as being incompetent as well. I have often left appointments feeling humiliated, disempowered, scared, and unheard. So often, I have felt like the lone advocate in seeking improvement of my own health. Interestingly, the more determined I was in seeking answers; the more I was treated as being irrational. It seemed like the saner and more informed I became, the more crazy I have felt navigating through the medical bureaucracy now in my life as part of having this condition. I now have come across the research that supports much of my intuitive and documented experience. I have sought out medical professionals that act in partnership.

I am fortunate to have supportive friends and family. Despite this, many really do not have a clear idea of my experience even though I am fairly accurate in my descriptions. They see what they want to see I think, especially the ones who new me before CFS. Perhaps it is just too horrible for them to fully realise it or I am now considering how I describe my situation. I am not able to have a life partner due to my lack of ability to be functional in life. Having children is simply not sensible either which leaves me heartbroken. My life's work, education and addressing issues of social justice, has come to a halt for the most part. I continue to attempt new avenues to be a contributor. I use creativity to find ways when my condition deteriorates.

Most prominent for me, at this point in my journey anyhow, was your attention to the word of 'fatigue' and how it creates inaccurate perceptions. Poisoned is much better and more accurate to how I feel during my many "crashes". I will begin more accurately defining my condition as this. I have used flu-like symptoms before I even read about this as a descriptor. Again, flu like symptoms have people correlating an experience that happens and then goes away. Poisoned comes closer to describing the experience. It brings in the feelings of fear that are part of the experience of a "crash". It more clearly articulates the experience of wanting to shed of your body, the intense feeling of toxicity.

As much as I like to try and divert my attention from the horror and magnitude of this condition, thoughts of my health are always with me. Know that, I will do my best to seek out advocacy for myself and others. Again, thank you for being an inspiration in guiding this.

To better days...

thank y for all the wonderful information! I am preparing a case for a hearing on the level of my disability due to CFS & FM with our country's Compensation Commissioner. my life is so isolated but i stay positive, it is just so WONDERFULL to know there are so many otehrs who are also fighting THE BIG FIGHT with courage. god bless y all.

elisa

Hi Jodi,
Just want to send you love&thanks. this site is so powerful,you have done an amazing thing.I had 'mild' M.E. for many years and was in the very slow lane of a creative career also-songwriting,i pushed too hard following a bad throat infection & crashed spectacularly in april,bed bound/housebound now& redefining the word slow yet again!!I am now completeting an album at a pace that is invisible to most.but it reminds me i am alive on days that i feel like the living dead.

Thank you for reminding about rules 1,2 & 3-rest rest rest.I always push my limits.I am duly warned,thank you.I pray for all of us to have a chance to put all we have learned in our 'miniature' lives into action in the real world.where there's life there's hope

Hi Jodi,

I just listened to your interview with Steve on Hack and was blown away by your outlook and courage in the face of this debilitating illness.

Thanks for giving me a better understanding of ME.

Paul

ps. if I can have permission to use one of your hummingbird images I would like to add it as a link to your support group (ME/ICD-CFSers United) on my website (www.irokradio.com).

i really appreciate this web site, its so conforting to know we are not alone; only wish i could find a list of docs who specalize in these matters.

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