Name: Kim
Country: Australia
Date: February 2008

I've been ill for 12 years. It has now turned seriously autoimmune and Sjogren's Syndrome has set in with a vengeance. Doc wants me to try chemo in tablet form for the terrible symptoms. I am already so ill. Has anyone tried this medication for such symptoms and had any success? I am somewhat reluctant for obvious reasons. He is a tremendous practitioner and I am very lucky to have him, so this is the first time I have been non-compliant (such an ugly term).

Thanks for such a wonderful website and to all the tremendous people who post a message. It brings lots of comfort.

Name: Leonie Moore
Country: New Zealand
Date: February 2008

Am having a particularly bad ME day and came across this site. Your description of the hummingbirds qualities to ME sufferers was so encouraging. Thank you.

Name: Kathy Fitzpatrick
Country: USA
Date: February 2008

Your website is an incredible source of much needed information. I was deeply touched by your art work and in particular the idea of hovering hummingbirds as a metaphor for Myalgic Encephalomyelitis. Thank you for your labor of love! Peace, k

Name: Perry
Country: Canada
Date: February 2008

Really like your website! Sufferer for about 18 yrs., disability pension for 10. Score at about 40 % on your ability scale. May I suggest a Research section dealing with the LATEST research? There is so much info there, it is tough to tell what's newest.

Name: Leslie Snipes
Country: Houston, TX, USA
Date: February 2008

Jodi, you and those in the UK, keep it up!!!

It has been more than a decade since my initial diagnosis of "CFS". After hearing the doctor's explanation/lack of same; my initial reaction was to think: Well, CFS just means my doctor is too darned lazy and/or incompetent to make a diagnosis. Since then and thousands of dollars later, I'm at: Fibromyalgia, 15 mini-strokes, elevated autoimmune titers, etc...

I have decided that, if I were in a major accident, there is probably nowhere I'd rather be than a USA hospital ER. However, for any other type of health problems, just about anywhere in the UK or Australia would probably be better.

Here's my warped since of humor. I have degrees in accounting, business, English, and Law; and an even more vared work and volunteer background. Because I can't work, I'm a drag on the American economy. No matter how much proper diagnosis would have cost, I find it difficult to believe the system wouldn't have been paid back by helping me instead of me being in limbo for a decade so far and indefinitely into the future because we also prohibit assisted suicide.

I'm starting to resent being educated and smart. I've managed to stay out of hospitals and keep from crashing but I can't stay well enough, long enough to get ahead of the curve. I probably should let the crises occur as that seems to be all that persuades the American system that one needs assistance. Of course, one may die in the process, but oh well...

The longer I hang in there, the more bizarre it all seems. Y'all keep it up. I'm sure the US doctors will catch up in a couple of decades, or so..

[Hi Lesley, I know it's very bad in the US if you have M.E., it's hard to get any tests or treatment or a correct diagnosis...... but actually it is equally as bad or in many ways far, far worse in the UK especially, and also in Australia because of the very common recommendation of CBT and GET, which have yet to fully infiltrate the US...and I hope they never do... People are also sometimes forcibly comitted as mental patients or children removed from their parents and their parents charged with abuse. I don't know if this happens in the US?

Almost nobody in the UK or Australia can get the right tests, diagnosis or treatment either. Almost nobody understands the vast difference between the distinct neurological disease M.E. and the made up 'CFS.' (Yes more people in the UK use terms like 'ME/CFS' and so on, but mostly they are just pushing the same old 'CFS' crap and ruining the reputation of M.E. by doing so too. It's just 'CFS' under a different name sadly.) It is a worldwide scandal and disgrace. Just disgusting. Jodi ]

Name: Kate
Country: USA
Date: February 2008

I thought I'd found this site by accident until I looked closer. It had to be the hand of a higher power!

In 1989, I had a horrid case of "flu", never fully recovered, and was dx'd with CFS a year later. All these years I've faithfully tried to follow the recommended treatments (including exercise), but I just kept getting worse; every relapse was worse than the one before it.

In the past couple years, some pretty scarey "new" symptoms have popped up. Sometimes my BP drops to 74/42 for no apparent reason. When I stand, my heart rate rapidly increases to 150+, I can't breath, feel faint (have fainted), have chest discomfort and my head hurts ("heart disease" ruled out; getting some relief with metoprorol). I have severe pain in the center of my lower spine that periodically results in paralysis of my legs. I have sudden sharp pain in my temple and at the base of my skull, followed by blurred or absent vision, facial paralysis on one side, near paralysis of my arm and hand (MRI was normal, so no further tests were ever done). I have a "lupus-like" rash on my face, but test negative for lupus. I have constant muscle fusiculation in my legs, spasms and twitching body-wide, and periodic hand tremors. And I cannot count the number of times "atypical" or "ideopathic" have prefaced the final questionable dx's. Regardless, these things do NOT fit the criteria for CFS... In fact, after reading "What is M.E.?" and a couple of the links, I no longer believe CFS exists.

I don't know if I have M.E., but I do know that no one has ever looked at the complex of symptoms as a whole. Every problem has been addressed as if it existed in a vacuum. And, I suppose it's possible I just have 15 different diseases, but what are the odds of THAT??

Even more troublesome, my daughter had been sick for a couple years, then late summer 2007, she collapsed at work. She had been dx'd with FMS a number of years ago, so her doctor just tacked on CFS. Given what I've learned here, I'm concerned for her, as well as for my grand-daughter who got sick around the same time.

Cognitive abilities declining, pain increasing, so I must stop. Will bookmark for further reading.

THANK YOU!! Any and all comments welcome...

Name: Amanda
Country: Australia
Date: February 2008

Hi Jodi and Family,

You have an amazing website! I am a friend of Claire's and came across this website and found more than i bargained for. I was living with depression for some time and found myself reading your site and getting up off my fat arse and getting on with it! Thanks! Within a few months i had got off my pills lost some weight and started on the next part of the journey. It seems to be mostly on the up since then. Again thanks, I don't think anyone who reads it wouldn't try a little harder in some part of their life.

I am now back in Perth and looking forward to meeting back up with Claire and saying G'day. I hope this finds you having a good day.

Amanda Patton.

[Hi Amanda! Wow, of course I remember you!!! Will respond more privately, when I finally can catch up with all my emails! Jodi]

Name: summer69
Country: England
Date: February 2008

Hey Jodi Thanks for the newsletter. I look forward to it every month. It is the only place that I have found information that makes sense. We have been in touch before. I have just been referred to a consultant after banging the doors down. The next step is an MRI scan, not sure what that will reveal or how it will help but someone may just recognise I AM NOT "JUST" TIRED, but at least I can understand it myself a little better with great thanks to you and all your hard work and effort and determination to get the facts out there. A million thanks xxxx

Name: Sue Sayer
Country: England
Date: January 2008

Hello Jodi

Thank you so very, very, much for your reply to my very long Guestbook entry. It was such a wonderful relief to hear from you and I got very emotional (your hug was big, heartfelt and HUGELY appreciated. Please have an enormous big hug back from me!).

Jodi, can I please ask you to pass on my thanks to Carol, UK, December 2007. Again, I am so grateful to her for taking the time to write and give me such good advice. Do you think you could possibly pass on my e-mail address to her please?

Again, I thank you for the wonderful, exceptional lady that you are, and for your time and commitment to others and M.E.

If there is anything at all that I can do for you over here in the UK, please, please let me know.

With lots of love
 
Sue xxxxxx

Name: Daniel
Country: Canada
Date: January 2008

Unfortunately ,some have made a career out of clouding the issues ,omitting important details, and basicly running quarterback , to confuse issues. Keep up the great website Jodi. Best of The New Year .

Name: Rheanna Morris
Country: USA
Date: January 2008

Hi Jodi, Your website is wonderful. I have seen your work here and there and now I have found this website and your here too! I just want to say thank you. You are inspiring to me. I too became sick with M.E at a young age (22). I have become much more sick since then too. My mother has M.S and my Grandmother has had M.E for around 20 years. The Dr.'s then treated her so bad that she refused to go again for many years.

I sometimes wish I had gotten sick while I still lived at home so I would not be forced to take on so many of lifes responsiblities however with three generations of related illness in my family there really is no one to help but my husband God bless him. It so happens his sister has M.S and mother has FM.

Your work and testimony inspire me to try harder to be an activist despite being the mother of two young sons and being sick with M.E. This year I really want to go to capitol hill and lobby before congress. I have wanted to for years. Sadly many are too ill to represent ourselves and others. I feel like my close proximity to Washington makes it more my responsibiblty though and we all should try to do what we can to edjucate people, namemely Dr.s about the truth of M.E.

I do hope you get to read my post.

Blessings to you and all that suffer may peace and comfort be with you all.

Rheanna

Name: PJ YORKE
Country: United Kingdom
Date: January 2008

Jodi if you want to see how good GB doctors are at advising people with ME about work related issues, read the condescending Simon knows best drivel on the Association of Hospital Occupational Health Doctors (ANHOPS) website especially the recent posts.You'll see what we're up against. I worked for the health service for 30 yrs and had a battle royal getting a retirement pension even though my employers acknowledged I was not fit to work. Lucky I had Minor cataracts & diabetes too.

The excuse for refusal CBT & GET must be fully explored. Particularly after GET put me in bed for days. Same story for disability benefits, if you want to know how the Gestapo used to work, just attend an appeal tribunal (independent it said, MY AR**)and be grilled & humiliated by obnoxious know it alls , who actually know Nothing.

Keep up your excellent work as much as you can. I frequently refer health professionals who will listen, to your site.

Regards Phil

Name: mary acton
Country: britain
Date: January 2008

This web-site tells it how it is.

My daughter age11 is now in her fourth year of me(moderately affected)and the funding and significant research into this horrendous condition is a national scandal

Name: Nancy Newton
Country: Canada
Date: January 2008

Really good web site, thankyou for all the valuable information, also glad that I am not alone with this nasty illness, need a penpal or someone to talk to via email

Name: Glenys Hicks
Country: Australia
Date: January 2008

Hi, I like this website- it is interesting and informative.

Blessings and God's comfort,

Glenys

Name: leela
Country: U.S.A
Date: January 2008

I have just discovered your site and I must THANK YOU for this tremendous effort. It is the most comprehensive, reasonable, articulate collection of information I have read yet. I have read too many mediocre-to-terrible books and websites and feel so relieved to have found yours! I have been suffering in silence and ignorance for too long and your heroic endeavor has shed much-needed light. Thank you thank you, and may you be healthy and well.

~leela

Name: Rheanna Morris
Country: USA
Date: January 2008

Hi Jodi, Your website is wonderful. I have seen your work here and there and now I have found this website and your here too! I just want to say thank you. You are inspiring to me. I too became sick with M.E at a young age (22) after giving childbirth. I have become much more sick since then too. My mother has M.S and my Grandmother has had M.E for around 20 years. The Dr.'s then treated her so bad that she refused to go again for many years.

I sometimes wish I had gotten sick while I still lived at home so I would not be forced to take on so many of lifes responsiblities however with three generations of related illness in my family there really is no one to help but my husband God bless him. It so happens his sister has M.S and mother has FM.

Your work and testimony inspire me to try harder to be an activist despite being the mother of two young sons and being sick with M.E. This year I really want to go to capitol hill and lobby before congress. I have wanted to for years. Sadly many are too ill to represent ourselves and others. I feel like my close proximity to Washington makes it more my responsibiblty though and we all should try to do what we can to edjucate people, namemely Dr.s about the truth of M.E.

Blessings to you and all that suffer may peace and comfort be with you all.

Rheanna

Name: Steve Rogers
Country: USA
Date: January 2008

Great site. I have always appreciated it.

yours,

sr

Name: Daniel
Country: Canada
Date: January 2008

Unfortunately ,some have made a career out of clouding the issues ,omitting important details, and basicly running quarterback , to confuse issues. Keep up the great website Jodi. Best of The New Year .

Name: Marie
Country: USA
Date: January 2008

Can we get a website blacklist started for things like this ...  http://www.thiscureworks.com/cfs/?gclid=CIy5htST1JACFQlxOAodxEafXA

...and others who want "just X amount of money to cure your ME/CFS/continuing list of related and unrelated syndromes/diseases"

Ive found several and if i was just a little less educated,a little less broke,and as desperate as i am would have forked out hundreds for crap like this.. how many other sufferers have?  Thank God i  found you first... but again how many others havent... and aside from sufferers finding these frauds... what about the caregivers/family/friends/potential supporters of the ill who might fall for this stuff and think we could be cured if only we really wanted to... ?

maybe youve already addresse this on your website and i havent found it hyet but if not.. ? 

anyway i cant go any farther, kwim... ::hugs::

Name: carol
Country: U.K.
Date: December 2007

I would like to echo Jodi's warning to Sue about GET. When I first started suffering from problems, I was diagnosed with depression and the spurious "CFS." My G.P. at the time advised me to exercise more, partly for the whole "no pain, no gain" theory and partly because exercise is supposed to be so good in cases of depression. I joined a gym and dutifully exercised my little socks off for 6 weeks or so, finding it harder and harder all the time. I was furious with myself when I became too weak to carry on and I can now date the increased severity of my symptoms to that time. When I finally got a diagnosis of ME, my consultant put his head in his hands and told me that was probably the single worst thing I could have done!

Please get another opinion. I too have suffered from a huge weight gain over the last couple of years, and I know how annoying that can be, believe me.

The spasms in my neck, chest and upper arms, with the ensuing pains, are the worst thing I am coping with at the moment, especially as I now have no effective painkillers to take. I have become extremely sensitive to anything containing codeine, cannot take anything that contains ibuprofen as it increases my blood pressure, so my G.P. has said the only thing left to me is paracetamol as he does not want ne to start on tramadol (yet!) As you can appreciate, paracetamol barely scratches the surface and I am not happy about the recommended dosage to be taken as a long term solution either.

Sorry for the meandering, I'm afraid my "foggy" brain is not reliable at the moment, although it is easier to write this than attempt a face to face conversation. Oh, the joys of ME!

Thank you again Jodi, for maintaining this site in the face of all your own problems.

Name: Michelle
Country: USA
Date: December 2007

With the severity of your illness, it is amazing that you are able to maintain this wonderful and informative website. Thank you.

Name: ian bekwith
Country: Australia
Date: December 2007

Thank-you for an excellent recource. I've had ME for 6 years and though better am still unable to work. I can certainly validate much of your information. I would hope that there is a way for new sufferers to find this web-site. It helps dispel some of the ignorance from some sectors of the medical fraternity. I was lucky to get workers comp and so have seen multiple doctors. I've had 8 diagnosis of CFS and finally have my first diagnosis of Severe Depression with Melancholia. (the shrink was a freak.) I must admit I had a medical background as does my wife and I was lucky and informed enough to find the right GP. The only advice I can give is don't overdo it, find your limitations and reduce stressors as best you can and find the right GP.  Wish u all the best. Ian.

[Good advice I'd agree with wholeheartedly! Jodi]

Name: Sue Sayer
Country: England
Date: December 2007

My sincere thanks for this website and all the work in creating it.  It is, for me, a Godsend. It took 18 months to finally be diagnosed with M.E. I had 2 MRI scans, saw many different consultants, including a psychiatrist, neurosurgeon, orthopaedic surgeon and physiotherapists. I was suspected slipped discs, brain tumour, severe cervical spondulosis and M.S. I was finally sent to see a wonderful doctor in Hinchingbrooke Hospital who gave me a very thorough exam and sent me for blood tests to check things I had never even heard of. He asked me what I thought my illness was and I replied that a family member had now thrown in the pot Peripheral Neuropathy. He said yes possibly, but he thought M.E. It was the first I had heard or thought of M.E. because, like most of the uninitiated, thought M.E. was a yuppy flu, nothing serious. I returned to see him and he gave me the news that I had M.E. I burst in to tears, partly with relief at finally knowing, partly with fear, because I had by then started my quest for information on the subject and it did not make happy reading! He assured me I was not alone in the severity of my illness.

I then started my quest in earnest. I have been dismayed to see many M.E. support sites with news and info only for those with 'manageable M.E.', and happy, smiling faces of those living with M.E. but still working, still playing with the children, still holidaying, still enjoying a good social life, etc, etc. I kept thinking, well, where am I then? and getting more and more morose until I finally stopped looking for a couple of months. Recently I took up the gauntlet again and discovered a wonderful site called the 25% M.E., which is (obviously!) about those of us with very severe M.E. AT LAST!! Oddly, I started to feel so much better emotionally because there were other poor M.E.'s out there as bad as myself and at last I had found them. I almost did a Meg Ryan chorus of 'yes! yes!'. At last, no ridiculously smiling faces telling me what a wonderful, full life they were enjoying whilst coping admirably with M.E (almost as if their illness did not exist). Now I have found this site and I thank you for being the best and most comprehensive, without being flowery, but to the point. I have known for some time now how bad it can be, and am more than a little worried about the future.

I am due to be attending a special M.E. clinic at Peterborough Hospital next year, who specialise in graded exercise. I shall certainly be asking questions as to the suitability of this treatment for myself as a very severe M.E. sufferer. I desperately want to be well. I have a wonderful, wonderful, husband, a beautiful 5 year old daughter, lovely terraced house with a garden, pets, and such a great life to live. My husband supports me 100%, cooks, cleans, etc, and my daughter is very special little lady. She can't remember me not being ill, but wants her mummy to be able to play properly with her, and do things other mummies do. I do now have a mobility scooter, but I can only use that occasionally. I want to cry, scream, stamp my feet and throw a big wobbler at the unfairness of it all, but then I have to count my blessings every day - for there are many - and be grateful for the people, pets and comforts I have in my life and think how very lucky I am. One thing I have never said, and that's 'why me?'. I always say I am no better or worse than the next person, so why not me.

I do seriously hate being so overweight though. I have gained 5 stone in just over 2 years and am not a happy bunny. Weird how things like weight can sometimes upset you more than needing help to dress, being housebound, being in constant un-remitting pain..... etc, etc. Anyway, I have probably used up more than my fair share of the guestbook now, so better close before my entry turns in to a new best seller! Thanks for giving me the opportunity to have a moan and groan, but mostly thanks for the brilliant website. I don't feel so alone and lonely any more. Sue x

[Hi Sue, I'll write to you more privately, but I am very scared for you that you might be about to undergo graded exercise 'therapy' which has zero chance of helping you if you have M.E. and a huge risk of killing you or making you far more disabled permanently; as it has for me and many other severely affected M.E. sufferers. Please read Smoke and mirrors or What is Myalgic Encephalomyelitis? before you submit to this bogus and dangerous intervention.

Incidentally, a 25% group survey recently found that graded exercise therpay was by far the most harmful treatment members had tried, and also that this 'treatment' was the actual REASON many sufferers were severely affected in the first place. ie. They were not severely affected BEFORE GET. The best way to get your best possible outcome with M.E. is rest, not GET or other bogus and unscientificlaly determined 'therapies.' Studies on it helping tired people are irrelevent to M.E. Jodi]

Name: Carol
Country: U.K.
Date: December 2007

Thanks for an informative and friendly site. Struggling with ME for just over 3 years now; doctors always classify you here as ME/CFS, if only fatigue were the beginning and end of the symptoms! Your world often shrinks a lot when you suffer from this illness and it's inspiring to see the hummingbirds and aspire to fly free again one day like them.

[Indeed, the term 'ME/CFS' is just ridiculous; M.E. has nothing to do with fatigue or 'CFS'.... if only! Jodi]

Name: Ravnstar
Country: Australia
Date: December 2007 

Blessings & thank you for the amazing & incredible effort you have put into your site.  I found you through a UK link, as just couldn't find the comrehensive info I needed to educate myself here in Oz. I am new to the net/pcs & live alone in 99% isolation.  I'm in relapse right now & have been dx'd twice with this over the years & also told to take a vitamin - depends on the doctor.  I'm in a wheelchair somedays as can't walk far & this gets more debilitating.  I have other serious health problems, including advanced osteoporosis & cardiac problems.  I'm 42 years old, female. I have adrenal problems/high cortisol. My speech & IQ are going & I have nocturnal TL seizures sometimes. Thanks again for all you have done. Peace to all. XOXOX

[Hi R, did you know that significant cardiac problems are actually a big part of M.E., and that M.E. is commonly associated with low cortisol levels? Jodi]

Name: Stan Dessin
Country: U.S.A.
Date: December 2007

My son is 32 yrs. old. He has been in bed for thirteen months unable to barely move or talk. I am out of financial resources, caretaker,herbs, basic expenses. I have not found anything to help him. How can either one of us continue this way. HELP

Name: Gill Mesce
Country: UK
Date: November 2007

Thanks for such a great site.

Name: em / AKA Moonflower
Country: England
Date: November 2007

Thank you for your site & all the round up of very useful information! Its been a great help - you are a star!

Name: PHIL YORKE
Country: United Kingdom
Date: November 2007

Has anyone had thoughts about the two pronged attack that the British Government can now make on ME sufferers? (A)The new sections of the mental health act which could quite easily be used against us to force us to undergo inappropriate and possibly dangerous treatments , unless the trickcyclists are roundly discredited, and taken out of the picture. (B)The new proposals to move the goalposts for incapacity benefit,by the little I have gleaned so far we are excellent targets for these new tests.

I could probably pass them on a good day (not very often these days!)But what about the bad days. Many firms have totally incompetent computer operators without adding me to the books. It would be interesting to know the feeling out there

Name: susana
Country: canada
Date: November 2007 

hello, thank u for your sdupport with the website. I've also been suffering from it...

Name: Debra
Country: Spain
Date: November 2007

Hi.
I have just read your story, A day in the life off and I was very shocked by the severity of your symptoms. My heart goes out to you, and I wish you all the very best. The reason I was looking in the first place is because I was [mis]diagnosed with M.E about six years ago and suffered for two years( I have to say no where near as badly as yourself) I made a full recovery, that at the time I put down to Reiki a form or energy healing. Last year my partner, I and two teenage boys moved from England to Spain. All was well, I work as a massage therapest and over the summer became very busy. I exausted myself. I felt I couldn't turn the work down as we are quite short of money. In the end I had too as I felt all my old symptoms returning. I was exausted all the time. Regardless of how much sleep I had. I couldn't drop off to sleep naturally at night, due to my head being full of a white light. so started taking sleeping pills you can buy in the chemist here. I was spending more and more time just laying on the bed reading or just sleeping. I would drop the children at school and then go back to sleep for five, six hours. Or until it was time to pick them up. My partner new how I was feeling but I didn't want the children to know, or my family as i felt like a falure that I was ill again. I was still working one afternoon at a clinic.I used to do four massages at a time but had cut it down to two. I found that if I rested all the day before and the morning I could just about manage to do them before going home and resting again.

One day I was massageing a lady that I had become quite friendly with, and when she said How are you, instead of saying, "Oh Fine thanks" Like normal I told her. She said that she used to have the same thing and had cut wheat for her diet. I thought It sounded a highly unlikely that I could feel this ill from something so simple. I cut it out from that moment on and within twenty four hours felt better. Its like a miracle to me. I realise that I was poisoning myself with a food stuff that made up huge amount of my diet. As I had felt worse I had been eating more of it as it was an easy food. i would have toast for breakfast a sandwich for lunch and pasta for tea. I know that in cases like your's this is not going to help, but for people that are misdiagnosed like myself something so simple can have a huge effect. After I made the connection I realised that when I was first diagnosed and tried the energy healing I also went on an Atkins style diet as I was over weight. I now realise Thats what made me better not the reiki.( I still think Reiki is a wonderful thing.) I hope this may help people that have no idea whats wrong them and have been told by theire doctor they have M.E. Its crazy that the doctor never even concidered it may have been my diet. Anyway. I really wish you all the very best, Your hummingbird pictures are beautiful. Debra

[Thanks Debra. Yes it is a huge problem as you know only too well, of so many people being misdiagnosed with CFS; thanks to the vague and bogus CFS definitions (as well as being misdiagnosed with M.E. because of those same bogus CFS definitions which do not describe authentic neurological M.E. AT ALL). People with M.E. suffer a lot because of the bogus creation of 'CFS' but so do so many other people with other illnesses, like yours. I'm so glad you've finally got a better idea what your illness is...and wish the same for all those millions out there misdiagnosed with CFS (or even M.E.) because of the bogus disease category of CFS, it needs to happen YESTERDAY! Jodi]

Name: Sarah
Country: USA
Date: November 2007 

I've been a moderator on an ME forum for about 5 years now.  I reference this wonderful website a lot, and have many links to various articles you've written here.  I always post your latest projects on the forum I moderate, to keep all the members there up to date with all you're doing for ME patients.

Not only do you cater to those of us who are disabled, but your information is also extremely clear and accurate for our healthy friends and family members.  I also send a lot of info from your site to close friends and family who I know will read it and benefit from it.

You keep up the good work!  All those of us who are severely disabled by ME appreciate it so much!!

http://www.ibsgroup.org/forums/index.php?showforum=3