Name: Greta J Vanzant
Country: United States
Date: October 2007 

Hi Kids,
I woke up one morning at 14 and could not MOVE.  I wake up everyday at 35 and feel lucky to be alive. I have help and support in all I do as most days I can't walk to far, drive, and do simple tasks.  Well, for me docs took 8 years to give my illness a name,  CFS.  Which I was never happy with as it did not describe the absolute HELL I was going through with symptoms.  In the past 21 years I've done all kinds of testing and blah di blah. I'm sure you all can relate.  As you well report the CFS name was a Misdiagnosis for people like us.  May we all work together.  Thank you so much for taking the time to share awareness.
Lots of Smiles and Love your way,
Greta Jane

Name: eita fox
Country: cocke  ( tenn)
Date: October 2007

i have been told that the hummingbirds gets on the backs of gesses, when they fly  south for the winter is this true??  and when is the best time to take up the feeders  i feed them and i plant some flowers so they have feed

Name: Mike Partington
Country: UK
Date: October 2007

Imagine my delight at finding this site. My wife has suffered horribly with ME over the past 2 years with very little relief in site.

In the UK, ME like elswhere in the world seems to be lumped into Mental Illness category. With only a handfull of General Practitioners conversant with the facts.

Worst of all are our own Government Departments such as the Depart for Work and Pensions who through the benefit assesment programmes seem to have found a paper cure for ME.

Keep up the good work.

Kindest of regards

Mike Partington
Plymouth, UK

Name: Mike
Country: UK
Date: October 2007 

Having suffered from M.E. for the past 5 years, I find this a very informative site, packed with great information.  I shall add a link to your site on my page, so that people can REALLY understand how it is to live with this illness.

http://www.freewebs.com/franglais1969/

Name: Paul Kiedyk
Country: England
Date: October 2007 

Hi Jodi
I have had the symptons of ME since 2000. Not officially diagnosed yet although my current GP is very good she is trying every which/way to get an official diagnosis. The trouble is all the time I am getting worse. Sticks and wheelchair now.

Sorry should have said in the beginning Great Site.

Paul K.

Name: David
Country: U.S.
Date: October 2007 

Thank you.  Your website is the smartest thing related to my condition that I've come across in the three years I've had it.

Name: Linda Jiler
Country: USA
Date: October 2007

Your website is both informative, refreshing and very helpful!

Name: john martin
Country: england
Date: September 2007

This website cannot be improved on. All little hummingbirds are destined to fly free, JM

Name: Dr Speedy
Country: Australia !!!!!
Date: September 2007

Hi Jodi,

Great site, always handy to fall back on when I need more info on ME, or is it me???

I have joined the struggle to get proper care for a neurological disease at:

http://niceguidelines.blogspot.com/

All the Best,

Dr Speedy

Name: Clare Wood
Country: England
Date: September 2007

Hello,

I just thought i'd leave a comment to let you know how fantastic this website is. I've had m.e. since i was twelve - nearly 3 years ago now and this is the best website i've found!!

I now have a website to show my friends so they know about m.e.!! I can't say thank you enough.

Thanks again,
Keep smiling,
Clare
xx

Name: Rayne Cumiskey
Country: USA
Date: September 2007

I was diagnosed with CFS in 1986 and to my horror, in 2000, I discovered that I actually had ME.   I have lost a great deal over the last 21 years over this disease including several jobs, a 15 year marriage, family, friends, and any hope of financial stability. I've been Permanently Disabled since 2001 when I collapsed at my last job. I rent an 8x14 room and live a very simple life because of the debilitation and inability to work.  I have suffered from seizures, migraines, burning skin and a plethora of other symptoms that come with M.E.  I am so grateful that I have been with an online support group of women and men that suffer from ME, FM, or both.  I too, was also diagnosed with FM in 1990. 

I came upon this site 6 months ago and it has been invaluable with the information necessary to finally prove to those around me that I am not a hypochondriac . . . . I began falling and having a series of equilibrium accidents after 1986 and since then I have been tested for Lupus, Lyme Disaese and MS, all of which continue to show up negative.

I came upon this site about 6 months ago and for the first time, I felt vindicated.  I thank you for doing what the American Medical Association refuses to do.  They and the pharmacuetical companies are making a fortune off our pain.  It is tragic, but your site brings accuracy and education to a disease long neglected.

Name: Melisa
Country: US
Date: September 2007

Thank you Jodi! Your Hummingbirds Guide is outstanding! I have been ill for over five years. I know how difficult it is to sting together a sentence somedays so it is unbelievable that you have created these guides and this fantastic artwork as well.

You provide alot of answers about ME. I went from doctor to doctor for years, without any answers or relief. Thank you for shining a little light on our problem. Here's to improved health and continued success! Melisa Resch

Name: Libby Conroy
Country: Australia
Date: September 2007

Hi Jodi- thanks for your advocacy & activism - from a mother of a sufferer of severe ME. Wishing all sufferers courage and that there will come a time of more understanding from the community at large - but more importantly commitment to $$$ for desperately needed research.

[And for that money to spent on actual M.E. patient groups, which is not what is happening now. Jodi]

Name: Rebecca Sultana
Country: Malta
Date: September 2007

Hello

I just wanted to let you know that I find your website very informative and immensely helpful and also that I really appreciate all the hard work you do to raise awareness about ME and for your determination and dedication.

I have added your website as a link to our website called - ME Sufferers Malta - which can be viewed here -http://www.mesufferersmalta.org/links.aspx

Thank you.
Kindest regards
Rebecca Sultana

Name: sue
Country: England
Date: September 2007

Oh wow - this is the best website packed full of information, I now have answers to so many questions. I have been ill for over a year and am just left to get on with it, without any information, so I am so glad to have my questions answered. Thank you and well done for creating such a brilliant site.

Name: Luke Hayward
Country: England
Date: September 2007

The first words of sanity I have heard in years! I have had many of these arguments about the so-called fatigue, the obvious political obfuscation behind the name "Chronic Fatigue Syndrome" etc... with my physicians for over twenty years, including several who have a reputation for treating the condition or have written books on the subject and should know better.... From the British point of view, the first signs of obvious foul play began ca 1970 with McEvedy and Beard... it would be interesting to know if they were in anybody's pay. Many M.E. sufferers have been confused for years as to why this illness has this particular, and bloody extraordinary political history, unlike any other.... but as my Polish friends always say.... "If you don't know what is going on...it's usually about money". Keep up the good work!

[Thanks Luke, and I agree your Polish friends are definitely on to something with that theory! Jodi]

Name: Jacquie Sherlock
Country: USA
Date: September 2007

I have had this since 1993. I quit counting doctors I have seen at 26. This website and information help convince me that I was not crazy and that other people were going through the same thing. The only problem is that in Baton Rouge, LA there is not a doctor that really knows anything about this. When I show them this article, the name "A Hummingbirds Guide" is as far as they read. The first 3 words turn them off. I am learning to cut the word, "Hummingbirds" out of the article. They do get a little further in reading now but it is still a debate. Thanks so much for a wonderful job.

Jacquie Sherlock

P.S. I just read the other responses and found out that I had already wrote in the Guestbook back in April. So much for a memory. Thank goodness for PDA's.

Name: Meg
Date: September 2007

Dear Jodi

Thankyou for putting together this website. It is the most comprehensive I have found. I direct everyone who asks about M.E. here.

Thank you

Meg

Name: Sandy
Country: USA
Date: September 2007

Jodi, please pardon this test to see if my entry will go thru. I have tech difficulties. Will write more another time if it does! Bless you for your time and this site and for what you've been thru to give us this!!! Words cannot express my gratitude.

Name: Hazel Mabbott
Country: australia
Date: September 2007

This is amazing. I have had it for 18 years .have not bothered to look up anything for a long time. had given up. thank you so much. it restores a little faith in the truth. I don't bother trying to explain it to people anymore just give them the web site to look at....thank you....

Name: Peter Smith or " Petering out! "
Country: South Aust
Date: August 2007

Hi Jodi.

Love your work.

I've had M.E. since '94...but have the support of wife and two children.

I'm currently writing a play about 4 young people with various disabilities, one of which has M.E. Time to set things straight, as you are doing. And you've inspired me to keep working on the script, so thank you.

Keep going beautiful person.

Peter

Name: carol
Country: UK
Date: August 2007

Thank you for a good definition of us with ME. How parable it is to a humming bird. This is the best site I have read in ages. However like yourself and most of us can only read small amounts at one time as causes too much fog and sore eyes. Wonder if humming birds get some of our symptoms, now there's a thougt?!

Name: Catherine
Country: England
Date: August 2007

Thank-you for all the excellent work you have done putting all this information together. I have only just started to go through it.I can not imagine the effort required to collate and write it all! Knowing my experience is not unique has helped me come to terms with my difficulties. I have become less critical of myself for not 'pulling myself out of it'. You are so right to say it is a serious illness that needs to be taken seriously.

Name: Jess Heffernan
Country: Australia
Date: July 2007

Hi

This site is fantastic. I was recently (six months ago) diagnosed and have been lucky enough to have support from a great GP. I love the art work on this site it is fantastic. I particularly like the practical tips, you have thought of everything.

It is great to get some ideas on how to adjust to a new lot in life. I love music and can only manage to play my flute every now and then. I am in my final semester of uni and thank goodness I am off-campus. Not too sure what I will do when I graduate. I just hope I can manage to support myself.

Anyway enough naval gazing.

This site is fab.

Cheers
Jess.
Thanks.

Name: Janet Landles
Country: Scotland, UK
Date: July 2007

Hi Jodi

I've written in guestbook before but just want to thank you from the bottom of my heart for printing the article M.E. is not CFS.

This is the best, most informative article I've ever read and I have sent it to my friends, those with and without the illness.

I love your site and thank you for all the work you put into it.

Janet Landles

Name: tessa
Country: UK
Date: July 2007

dear hummingbird,

keep up the good work,

I'm a GP in a similar situation as you

apart from having some super friends and a great GP people treat me just like everybody else with ME as if I'm suddenly crazy.

interesting to note as well that they talk to my partner and not to me as if..

all the best,

tessa

Name: Kathie
Country: Canada
Date: July 2007

Your page and your artwork are inspirational. I am 46, severely disabled and housebound with me and fm/chemical sensitivities and I found your page uplifting. I have a mantra I say to myself rpeatedly on the worst of worst days..."This too shall pass" It helps me get thru it. Good luck to all of you through this incredible and bizarre journey we are all on.

Kathie

Name: Gillian Kirby
Country: England
Date: July 2007

I have had ME now for 26 years and this is the most informative site I have ever been on.Will there ever be a cure I wonder.

Name: Antoinette Christie
Country: Belfast
Date: July 2007

Mum of 14yr old David Housebound 2yrs.

All support is welcome. I have started my own blog:

familyfights4me.blogspot.com.

Name: Sherry Lum You
Country: usa
Date: July 2007

Thank you so much for making it so clear the difference between ME & CFS. I have had a long running bout of fm/cfs since 2001. When I started to look up new info on the subject I started seeing ME combined with CFS. To be quite honest I liked saying I had ME compared to saying CFS, I guess due to vanity. I have had so many negative respoonses to cfs/fms that I hate to tell anyone I have it. I thought ME was the new name for CFS since I saw it used together all through the internet. I now see the vast differance thanks to your articles. Thans and now I can also educate others I know about the awful illness M.E..

Name: Jeanette
Country: Wales
Date: July 2007

I have lived with ME for nearly 12 years, I am lucky according to the scale, I am only 70-80% affected on a good day, I work, I have a family and the support of fantastic friends and my partner. It's go to know I'm not alone, Have you got a chat room?

Name: Susan Dittman
Country: USA
Date: July 2007

Great, great, web site!! I have had CFS since 1985 and have just gone through my worst year in awhile. Since I have gotten so little help and so few answers in the US I decided to start reading about ME and that led me to your site. Praise the Lord! (Forgive me, I'm really not one of those whacky right wing American Christians, but I do thank God for genuine help no matter where it comes from.) Your description of ME is better than any of the confusing mumbo jumbo I have found on American sites.

What I have found recently is just a theory here and a theory there and then several years of no follow up research. Its like we are going backwards in the US (in more ways than one, I guess!) I just bought myself a lap top so I could lay down and do this although I'm sitting at my desk at the moment. The lap top stand you advertise looks like a great idea. Anyway, thank you for your site and I plan to look around some more and send some links to friends and ! family.

Name: Victoria
Country: US
Date: July 2007

Your comment on Dorothy Wall's "Encounters With the Invisable" saying "She gives a ahort and adequate description of the history of the disease in the United States" is not true. In fact, her history is false and distorted. One example is when she reports on one charity in the US meeting at the CDC in the early 90's which is years before that charity even existed!

[Actually that was written by Mary Schweitzer, not me, but I have removed that statement anyway - thanks!]

Name: martin
Country: UK
Date: July 2007

Well done on making this website. It has a lot of informative information.

I have had mild to moderate ME which started all of a sudden 15 years ago. If other viruses like polio are the cause then how come people who had polio got over their virus until many years later? How come we dont get over our virus until years later as well?

I hope that it is just the immune system switched on all the time looking for a virus so that we can switch it off eventually (this is what Dr Kerr in the UK is looking at presently). Hope you dont mind my thoughts...I have never been offered an mRI so I cant say if I have an abnormal scan or not.

Name: Susan
Country: USA
Date: June 2007

this is definitely the worst disease ever, my daughter has ME, undiagnosed but definitely all the symptoms, unfortunately here in America ME is not recognized but still diagnosed as CFS, it is so sad that someone is so ill and not even recognized for that illness, her illness has some likeness to yours, Jodi as she developed it when she was 19 and is now 29, she is housebound and almost bedbound, only able to be up for very short periods of time, she in intolerant to light and sounds so she lives in a dark quiet lonely room. she loves music but is unable to listen to it and no one quite understands how music hurts so bad..everything she loved has been taken away from her, the neurological, cardiac, endocrine symptoms are severe, the pain is unbearable and she has often wished she would just die and end it all, how can a disease so severe be so unrecognized?

thanx for the site Jodi you did a great job on it and my thoughts are with you.

Name: preston
Country: usa
Date: June 2007

Words seem insignificant in trying to show my empathy for M.E.

Name: Natalie
Country: Australia
Date: June 2007

Jodi, I had an eye to do something simialr to what you've done with this site, then I found it - there is no way I could do a better job.

This site is amazing, & exact. I am 20years old & slightvery slightly less affected than you are (I watched your youtube video). I am able to walk to the bathroom, and talk to people for about 2 horus a day, & sit up & write decent emaills. But apart from that, we are very much the same (& the fact I've only been suffering from ME for a year, & only been this bad for 3-4 months).

I would love to help you with this site, if there's anything I can do please feel free to email me.

& please don't sit firm in the belief you will never improve. It might be minute, but there is always a chance. We all have to believe that, right?

Kind regards & I hope whatever makes you smile is making you smile today.

Natalie

[Thanks Natalie, but I have NEVER said I believe I wont improve! I never have and I never would. Of course I have strong hope and even a belief that I will improve significantly one day, maybe even to 60 or 70%, or at least 30%...I think every severie does, or we couldn't keep going! We have to believe that to get through each day! That we will ALL be one of the few lucky ones, as illogical as that is..... Some of us call it necessary 'blind over optimism'! or BOO. But thanks for the kind thoughts:) Jodi]

Name: Lucy
Country: USA
Date: June 2007

Your site is incredible.

I have a mild to moderate case of something in the spectrum of CFS or FM or MCS. I do not know if it is M.E. or not, nor do I have the resources to find out, but so much of what you have said rings true for me.

I commend you and congratulate you on the wonderful site. If there is an upside to the cognitive dysfunction I have, it is that because I often don't remember what I read, that the second reading is just as fulfilling as reading it the first time.

Little by little as I re-read parts of your site, the information is sinking in and starting to stay.

I wish you ever the best and send all good thoughts, wishes and prayers that you will have many days that are much better.

Most sincerely,

Lucy O.

Name: Daniel
Country: Wales
Date: June 2007

HI, reguarding DCA for M.E. treatment. I'm currently experimenting with it and have had some good results anthough at the moment im suffering a set back.

I'm trying to get hold of Mark Carnall as I'd like to share my experience and recources with him.... So if you read this mark you can contact me at STI66@aol.com

Name: Vincent
Country: India
Date: June 2007

Super site. Saw the video on you tube as well.

I've started India's first M.E website

www.meindia.org . Love your site .keep the faith.

Name: rita joy
Country: England
Date: June 2007

Hi Jodi,Once again,MANY CONGRATULATIONS on producing yet another EXTREMELY INFORMATIVE Newsletter for June 2007.I do not know how you do it!I have been ultra-ill since October,with multiple concurrent,consecutive infections,so consequently housebound.Absolutely no resistance to any infection.I believe I am "TRUE ME",and 30 years of this has ruined my life.Plus,as you know, Breast Cancer Therapy has set me back years.The recipients of this Newsletter,may I suggest,research "Neoplastic Syndromes" The advice re:"Are you going to have Surgery" should be printed off and handed to Anestheseologists.I am constantly gobsmacked that docs are still so ignorant of this illness.At least the Anesthetists looked after me,as I am still here! Please keep up the good work.I am in awe.I cannot do much,but just sit,read,watch tv.,and keep up with the latest on ME and Cancer Research on my computer, interspersed with long lay-downs!!All I need is sleep,which is hard come by,and a cure for what ails me. Best regards, and admiration. Rita UK

Name: Therese
Country: Australia
Date: June 2007

I have viewed all your videos and just want you to accept my sincere thanks for the work you are doing. Am hoping still for even small miracles for you and others... take care honey. I have two daughters about your age, one who was misdiagnosed with CFS, and still battling to regain health...but does not have ME thank goodness...a long haul back for her...what on earth happens to those who do not have family? my heart breaks for what they must be enduring.

Name: Andrea Rowland
Country: Australia
Date: June 2007

Reading the case studies made me well up with tears....I too have been a sufferer for over 7 years and also treated extremely badly by the medical profession.

Mainly bedridden for the past two years because of being advised to try and exercise..... Thank you

Name: Sharon Kirk
Country: USA
Date: June 2007

The fact that your mind still works well enough create the best ME website is phenomenal. I've printed out so much on your site and just keep rereading it when I feel most alone. When I've lost so much and feel so little is left because my disabilities are progressively getting worse your site is consoling. Thank you for worling so hard to bring al ME victims a gem. Love, Sharon -- 21 years of hell

Name: melissa
Country: australia
Date: June 2007

having suffered m.e. for the last 16 years to me i know that the severity of this illness is so underated it appears criminal.god bless all my fellow sufferers.we have to be so very brave living our lives a day at a time.i am 64years old

Name: Jan
Country: United Kingdom
Date: June 2007

I am a Nurse was diagnosed with Fibromyalgia 4 years ago and M.E last year. over the years i have got worse. the list is endless.

Name: Sharon Kirk, Ph.D.
Country: USA
Date: June 2007

One of the most thorough, up-to-date researched, helpful, validating and supportive websites.

-Age 49, 22 year ME victim, Progressive ME, Psychotherapist.

Name: Hans van Bergen
Country: Norway
Date: May 28 2007

Excellent website, very helpful, the best site i found so far. I have just been diagnosed with ME, after 18 years of wondering if i was mad. It probebly startet while serving as an NCO in the Dutch Marine Corps. Never fully recovered, and graduatly got worse. I am still looking for a way to get better.

Best regards,
Hans van Bergen,former Dutch marine, living in Norway.

Name: charles stafford
Country: great britain
Date: May 25 2007

Name: Kay Langridge
Country: England
Date: May 23 2007

I can't thank you enough for all your good work on this web site. It has answered all my questions. The health service here in the U.K. dont seem to know anything about M.E.

I have been suffering this condition for nearly 3 years now, and have got a possible diagnosis from a neuro hospital in London, but because the professor specialised in dementia he asked my G.P. to refer me for c.b.t. and they then asked my G.P. to refer me to a neurologist locally for a definate diagnosis so I could get more help.

My G.P. has budget problems so wont refer me, just giving me painkillers etc.

I am going out of my mind fighting with the health system here. All I want to do is get some help and advice as I am housebound and in terrible pain.

All your information I have read here fits all my symptoms and has given me hope that one day I will receive a diagnosis and the help that comes with it.

My previous life is gone now, and I am trying to get to grips with this new one, but the more I fight it the worse I get as I'm not too good at pacing.

Please can you give me some advice on getting help?
Many thanks
Kay

Name: Michael Dessin
Country: USA
Date: May 21 2007

I know I had ME for years when I noticed exercise intolerance at 19 and now 32. Going to chronic phase of ME...loosing all memory, dementia like, parallyses in legs. Very hard to read or write..basically all the horrible symptoms and still dont have a person around me who understands what is going on. They always want that diagnosis thing. I wish someone could explain to these people how to help me live the rest of my miserable life at least as comfortably as possible if there is such a thing. This might be the worst disease on earth and I still have no support..I just dont get it!!

Mike D---I think thats my name?

Name: Caryn
Country: South Africa
Date: May 17 2007

Hi Jodi, me again

Just re-reading some of your articles etc. I've printed out the 60 page doc on what it feels like to have ME. Going to give it to my wonderful mother-in-law who has 'disowned' me because she thinks it's possible to have gone from a fully functional, intelligent, healthy person to what happens when ME strikes just to be 'difficult'. Convinced I'm manipulative, conniving and lying. For what, I ask?? Why would ANYONE on earth want to land up in this type of scenario? So I'm going to challenge her to read your paper. And hopefully she'll leave me alone forever.

With love
Caryn

Name: Hannah
Country: England
Date: May 17 2007

Hey,this site is brilliant =)

However, it might be more helpful if the text wasn't so bunched together, which made it quite difficult to read. Maybe space it out a bit more? Would be really helpful =)! xxx

Name: Paul Winter
Country: England
Date: May 16 2007

Thank you Jodi for such a helpful website. I have recently been diagnosed with ME, although I don't fit the CFS criteria that they use in the UK!

I have so many neurological symptoms,have seen 3 neurologists,had numerous tests such as MRI(twice),EEG,Lumbar puncture,and various blood tests. All of them came back normal so they decided I have ME. My symptoms did start after a flu jab, and I had flu like symptoms at the beginning. I recognise many of the symptoms you discribe but not as bad. I have at least 2 that I have never seen in a list of ME symptoms; Dystonia and drop foot(when I walk).

I have set up a webpage about my experience www.squidoo/MEandme

Thanks once again for an informative website.

Paul

Name: Elaine English
Country: England
Date: May 16 2007

Thanks Hummingbird for putting together so much information on ME, the medical facts, symptom list, misdiagnosis etc. Brilliant!
Until I had a severe relapse two years ago I had not realised how insidious the misdiagnosis of CFS had become.

Name: Simon
Country: United Kingdom
Date: May 16 2007

Hi Jodi, I keep coming back to your site as it is a mine of information. I have ME and was diagnosed by a Professor in the UK with help from a Canadian doctor. Before that I was told I was suffering from conversion disorder. They said that I'd had an emotional reaction to a viral infection and that had caused all my problems. Can you believe it!! Now I've had blood tests and heart tests my diagnosis has been confirmed. As a lot of people in the UK are told they have conversion disorder when in fact they have ME I put together a website. www.conversiondisorder.co.uk and sponsor it in the uk via google adwords. Hopefully it will help folk, especially the book I'm writing on the site which is about medical misdiagnosis.

Best wishes,

Simon

Name: A M
Country: Australia
Date: May 16 2007

A sufferers self help tip.I have also had the mad hot/cold/hot/cold thing you described with muscle pain and a feeling of having the worst hangover headache without even touching alcohol as one of the many symptoms of M.E. I found having a cold shower or an ice bath{if you can handle it}does seem to relieve some of that pain short term and many sufferers say the same thing though everyone is different.It is one treatment that does not cost you a fortune if it helps!

Name: Andrew M
Country: australia
Date: May 16 2007

I would like to congratulate Jodi on providing such a great well researched and supportive website on the debilitating effects of M.E. Heres hoping more doctors take note and are able to help all of us who are suffering this condition. The doctor who does take the time to research and find a cause and cure will be a very rich person!

Introduce me to them when they do!.

Name: Rosemary Whitmire
Country: USA
Date: May 14 2007

Just wondering if we have humming birds in our area, SW FL (Lehigh) I have a feeder but do not see any birds.

Name: Richard
Country: USA
Date: May 14 2007

Thank you for what you are doing here. The symptom list was validating for me. I have had most of them over the many years I have fought with this scourge.

I do not talk about this illness any more with non-patients, not even close family. Most people literally laugh at my symptoms. I try to avoid people as much as possible now.

Thanks again.

Name: milinda
Country: ireland
Date: May 12 2007

jodi well done. wishing you always patience and hope milinda x

Name: Caryn
Country: South Africa
Date: May 12 2007

Hopefully awareness will only grow. You are an amazing person to do what you do in spite of your limitations. Thank you!!!

Love Caryn

Name: Jo Davidson
Country: USA
Date: May 11 2007

THANK YOU for your information. I have been severely ill for 11 years and even more so for the last 6. I completely collapse when I try to exercise, and have not been able to figure out why. I have had many times of being so disoriented and, well far too many symptoms to list. You explained what M.E. is far more better any doctor I have seen, and I have seen many.

Just as hard as the illness itself, has been the response and comments of the medical community and people in general. Most people have no idea how miserable I feel every day, because I can look good if I try a little, (although to me I don't look at all like I would if I were healthy)). There just has to be some treatment that can help the physical symptoms somewhat. I often beat myself up for not being as positive as I want to be- but I find it hard when I feel miserable. Even so, most people have no idea how I really feel. I try to hide it somewhat.

Anyway- there is alot to say, but I am grateful for your site and the info you have here. I would like to print one of your articles on my blog to help educate people as to the fact that this is a neurological disorder that affects every system in the body.

Sincerely,
J

Name: dawnymarie
Country: uk
Date: May 9 2007

hello,

i have only just found this website and wish i had found it sooner.

it is just what i was looking for.

well done and keep up the good work.

i love the hummingbird.

take care,

dawnymariexxx

Name: Rebecca Scanga
Country: USA
Date: May 8 2007

THANK YOU FOR SAVING MY LIFE!!! I've been told I was crazy for years now. You're symptoms list, including what tests (and results) ME folks should have, was like reading a story written about me!! I can't thank you enough. I WILL be giving my doctor this information!!

Name: Ricia
Country: UK
Date: May 1 2007

I found this site through a link put up by a fellow ME sufferer on a different forum, it's given me the best set of definitions of the condition ever. Incidently, I was diagnosed by Dr Betty Dowsett in 1989, it took ten years to get there.

Thank you for giving us hope and courage, Jodi!

Name: Jacquie Sherlock
Country: USA
Date: April 29 2007

I live in Baton Rouge Louisiana. I can not find any doctors in this area that know anything about this. I have had it for 11 years and had to train my last doctor who gave up on me because I could not show up at every appointment and now I am without a PCP.

I am a nurse of 15 years. I've been ill for 3-4years. I was wrongly diagnosed with Carcinoid Syndrome being that some of the symptoms are similar. I believe this website was my lightbulb going on...Thank you so much. A sick little girl

Name: Dawn Marie Crake
Country: usa
Date: April 26 2007

Thank you! Thank you! Thank you!

Name: Paul Winter
Country: UK
Date: April 25 2007

Thank you for a very helpful and informative webite. I have recently been diagnosed with ME.My symptoms are almost entirely neurological. Involuntary movements (Myoclonus?), foot drop when i walk, speech problems,cognative diffilties etc. I have seen 3 neurologists, and have had numerous tests. You can read my story n my webpage if you are interested

http://www.squidoo.com/MEandme/

Thanks again,
Paul

Name: Daniel
Country: Canada
Date: April 16 2007

Congratulations on your ongoing Advocacy. You have my full respect in your efforts.In my personal lived experience and many areas you mentioned, you speak of where you are Highly accurate , Adverse Effects of Physical Therapy and other assumptions and modalities of treatment forced on massive amounts of improperly medically investigated workers and patients . Many are forced or crunched into a
predetermined ,limited and political in some cases , picture.The outcomes are obvious history for those lucky enough to find caring Doctors the truth surfaces , often way to late unfortunately.

When you mention Political , Vested Interests , ect..it is the tip of the iceburg in some cases. It would possibly bean interesting addition to your website , to have a section on Workers of all unrestricted sources and categories,input how they are force fed to tow the line , or be a team player , to the system , and be forcably sent to Alledged ,Independant Medical Exams or forced treatments. Liability wise , example , if one has undiagnosed disease or reactions to chemicals ,toxins , molds , mildew,gases , fumes , ect.. is improperly treated if at all ,
then suffers physical injuries indirectly from effects , then is forced into graded physical therapy and worsens or aggravates or initiates
a domino effect to their support systems at cellular levels and immune levels among many others. Now imagine someone like me for instance who's had this over years and multiple times. Very Best Regards , Daniel .

Name: Chandali
Country: Australia
Date: March 29 2007

Hi Jodi,

This note is for you. I have experienced all of the symtoms you have written about here during the last 11 1/2 yrs.

Thank you for yr info. I knew I had the REDD -enzyme loss. But I did not realise until I read yr site that I have also been exp. all the symtoms of the ME virus. This is improving for me now though and yr info and story gives me the necessary encouragement to stay strong and carry on with my nutritional program.

I do hope yr living conditions have changed since writing yr story though.

Sincerely
Chandali

Name: Katherine M Slane
Country: usa
Date: March 23 2007

I have been sick soo long. diagnosed with fibro about 8 or so years ago. I feel sicker and have far more problems then my fibro pals. mri brain shows 3 "spots" of sorts. Dr I went to about 6 yrs ago said could be MS but I was so sick what difference did it make because adrenal problems could not take steroids. I called a Neurologist in phone book today after finding and learning about ME which so sounds like me that it's scary. Dr. would not take me as patient as he doesn't see patients who are on pain medications. Once again too sick to even find a Doctor to help me. And I live in Palm Beach Florida, where does a person go to get help? I appreciate your site so much, your time and dedication alone has made me feel like there is still hope for me and that this is all not in vain. God Bless You. Regards, Kate

Name: Jennifer McBryde
Country: Australia
Date: March 19 2007

For me the artwork depicting birds holds a special significance about ME and I have prepared a document from researched information much of which you read on this website. Many people in pain and suffering I have also been down that road and for more years than many others.

Name: Cathy
Country: England
Date: March 16 2007

Jodi, thank you for compiling such an informative website. I know from personal experience of over fourteen years with M.E, just how desperate sufferers are for factual information and advice, which many cannot access via their G.P. I totally admire your stamina and determination in bringing a public awareness of the devastation this condition when you yourself have to cope with it in all its severity. Education is power and I for one will recommend your site to anyone struggling to make sense of their condition and battling with a lack of intelligent information!! Many thanks again.

Cathy..Leicestershire

Name: Mrs. C Chance
Country: England
Date: March 11 2007

My 24 year old son has suffered, (and been diagnosed by two different hospital doctors,) with M.E for 16 months. This week my husband took him to a unit attached to our local hospital which is supposed to help people with the illness. To both my son and my husbands amazement the doctor within five minutes of speaking to him decided that she wasn't sure if he had it and suggested he see a psychiatrist. Both my husband and son protested but to no avail, she had made her mind up. She hadn't read his notes so didn't know he had already been diagnosed, how could she judge? She then said she would write to our G.P giving her opinion. My son is very ill a lot of the time he complains that his head feels like it is being crushed. He has had pains in his legs, arms, hands, dizziness, trouble breathing etc etc. What chance has he and other sufferers with so-called doctors like her?

Best wishes
C. Chance.

Name: janet m
Country: northern ireland
Date: February 27 2007 

i have never been so close to the point of ending this living hell.i have had me for 10years.having to explain over&over again.dayin dayout to my family has finialy broken me.i havent been to this site in a while too long. THANK YOU for being here.it may sound dromatic but ive found my wings again.

Name: Ellen
Country: USA
Date: February 27 2007  

hi,
I love your hummingbird artwork!

and all the info on your site - you've been VERY busy writing all these articles. I especially find interesting the idea that rest when you 1st become ill is very important - I wish I'd known this!! I was misdiagnosed and became so sick so suddenly that I moved across country from the West coast (Los Angeles) to the East coast to be in a smaller town. Now I am 90 per cent recovered and I moved all the way back to Los Angeles again!! that was sort of dumb, but no one told me to take my illness seriously. my family didn't help me as they just don't understand how "tired" you get with this illness.

I hope you can improve this year.

later this year, I will be putting up a new website, FibroGirl.com, to help other sufferers! all of us need to unite and help each other, as we know how little help we get from the medical community....Ellen

Name: Rocco Panzavolta
Country: Italy
Date: February 26 2007 

I was searching for articles on MCS and ran across your site. It´s very nice and well made.

My short story
All started after Hepatitis B vaccination and some trips in Sarajevo (after NATO raids with Depleted Uranium bullets in 1995), I suffer other malfuctions at multi-system level without never to get any specialist explanation (often they told me "It´s stress, maybe."). So I lost many hours work and money before MCS occurs. I have had first worsening after three amalgam fillings removal (2001) while MCS begun in chemistry laboratory in Secondary School (2004). In the latest summer I steped again in MCS cause of pesticide and solvent exposures. I lived in an old camper to seek house and doctor. In latest september I found this apartment for allergic people in Germany after others tested. In Italy there is nothing at least from our demanding. I have money to live for one year again... I hope to find right therapy in Europe before that. 

You can see my old work about MCS in 2004-2005:
http://www.riconoscimentomcs.135.it

Thank you Jodi for your wonderful work but, please, don´t make the same like me, keep your health and your money!

Bye from Germany
Rocco

Name: Tonyia Harwell
Country: united states
Date: February 23 2007  

This website is awesome and very informative.

Name: Paul Kayes
Country: England
Date: February 22 2007  

http://petitions.pm.gov.uk/ME-is-real/
 
The above petition raised by Konstanze Allsopp to the P.M. is open until 22nd January 2008.
 
I wonder if it would be possible to publicise it or add the link on your website to encourage members and their friends and family to sign up. 
 
I've been in contact with most of the major M.E. websites with a fair amount of success so far. Have also contacted as many support groups as possible and the feed back has been very positive.
 
2523 signatures so far, however that's a little more than 1% of the estimated 240,000 U.K. sufferers.
 
Thank you for giving this some consideration.
 
Best regards, Paul Kayes.

Name: Jennifer Sprow
Country: USA
Date: February 9 2007 

Very nice website Jodi! Just "googling" around and found it today... looking for - new research  - maybe a cure, too!  :)

Take Care!

Name: Rose Fenton
Country: England
Date: February 5 2007  

Your website is a wonderful work, Jodi, and also your artwork. 
I am a virtual lifetime sufferer of M.E. severely.
Thank you for giving so much information on your site, which is the truth!
Love from English Rose

Name: Mark Carnall
Country: England
Date: February 2 2007 

Could dichloroacitate (DCA) be used to treat ME? There is quite a buzz at the moment over its use in cancer treatment (it reawakened the mitochondria in cancer cells) It is a small, safe, simple molecule which can cross the blood/brain barrier.

[Hi Mark, yes, I agree this could be very interesting/useful for M.E. sufferers, potentially. I hope some of our good researchers will be looking into it very soon! We need to be right onto every potential treatment that looks this promising, I agree. Jodi]

Name: Mark Barron
Country: Australia
Date: January 29 2007  

Dear Jodi,

I have had mild to moderate ME for about the last 18 months which I'm pretty sure followed on after 11 months of a form of chemotherapy. Bad luck, although I am "cured" from the other illness (not cancer).