The Hummingbirds' Foundation for M.E. (HFME)

Country: GB
Date: January 2010

I used to be on this site many years ago and found the guest book really good everyone had simular if not the same symptoms and i was given much support and advise. I did infact change my Doctor and low and behold he was so different a barage of tests were done and eventually he told me that he was in no doubt that I was and had possibly been suffering from M.E for some time and not only that but fibromyalgia also.

It was the people on this site and its founder that prompted me and gave me the courage to take my problems else where and not to give in no matter how difficult it was, and difficult it was i can assure you all, but a couple of years on I am still here and still suffering but thanks to you all  only suffering  half of what I was.

Thank you once again to all you guys that helped me through some of my toughest times x

Name: Fraser Johnson
Country: Australia
Date: January 2010

Hi Jodi

I heard you on a YouTube video and you sound Australian. I've also just confirmed this from the web site.

This is a very extensive web site and is the most detailed information I have seen yet on Myalgic Encephalomyelitis. I have been researching my slowly escalating medical problems and found ME to be a match. I am really wondering if this is what I have. I'll try to read more on your website. I have seen that some people like yourself have severe effects of ME. If I have ME, it is not severe.

Regards

Fraser

Name: Beth Schipper
Country: USA
Date: January 2010

Just read through your paper on "Treating ME The Basics" and was really impressed with the depth of information!  Great job!

In the paper you mention in the diet section using tinned meat.  In the US most of our canned foods are lined with BPA, which shows some evidence of being a hormone disruptor.  Do you have any information on how BPA affects those suffering with ME?

Thank you so much for providing this information.  Some of it I have managed to discover through trial and error, but there was a significant portion that was new to me.  What a valuable resource The Hummingbirds' Foundation for Myalgic Encephalomyelitis is!

[Thanks Beth. Tinned tuna is mentioned in the diet section, as I know many with M.E. rely on it for convenience and low cost. Of course, tinned food should be avoided as much as possible, and fresh foods eaten as much as possible, with any disease and especially with M.E. It may well be true that those with M.E. are even more susceptible to have problems caused by this chemical, so thanks for bringing this issue up, I will mention it in the next paper update. Jodi]

Name: MARY FEY
Country: england
Date: January 2010

hi i have M.E and get lots of pain in my legs and back arms headache. and sometimes fell sick upset tummy, has anyone like myself sleep long hours/ ? I SLEEP 14 TO 16 HOURS AT A TIME. i have had to cut down my hors at work to just 3  6hours a week, has anyone  any info they can help me with  m.e ? im just living on pain pills,  thanks mary

[Mary, yes, many with M.E. have real problems maintaining consciousness for very long, especially in the earlier stages of illness and where there is significant overexertion. If your problems improve with rest, or worsen significantly when you work more, you may need to consider that working may be making your condition worse, and may leave you severely affected. Sadly, for many of us, we are severely affected as we kept pushing ourselves to work or study for longer than we should have, and caused severe damage to our bodies. I'm sure this is the last thing you want to hear...I know stopping work is very difficult and awful. But it is worth it if it can stop your M.E. becoming severe. Jodi]

Name: Rosie Wallis
Country: England
Date: January 2010

Hi,

I was just looking up how to pronounce Myalgic encephalomyelitis, because even though I have it I can't pronounce it!

I've been ill for 3 years, since I was fourteen, and I came across this website and just read your interview on the radio. I just wanted to say well done and say how brave you were to talk like that, I found it impossible to talk to my school, my friends for two years.

I spent 6 months in bed and spent months slowly sitting up for ten minutes each day, now I've much improved, still housebound most days of the week.

I just wanted to say how brave you are and your right you've just got to keep believing things will get better.

Thanks Rosie

[Thanks Rosie and I'm glad you are doing a bit better. I did actually consider doing a video just on how to pronounce M.E., but then I figured that all the videos where I say M.E. a lot took care of that already! Jodi]

Name: Ed
Country: USA
Date: January 2010

While "naturally" landing on a regimen that mimics parenteral nutrition

I found myself saying "I'm like a humming bird" over and over because honey has been my sole carb source. A few days later I find your site.

There is so much more but thank you on behalf of myself and my family. Your gift here is going to save things dramatically.

Great artwork! I hope the U.S. slow film PBS special on hummingbirds airs over there.

Ed

Name: Jan Adams

Country: Canada

Date: January 2010

PLEASE    send me the  monthly newsletter...I have been misdiagnosed for 18 years with ME/CFS   with most emphasis on CFS, and now see the need to have clear understanding of  this ME disease as I am  increasingly disabled, with cardiac and most other ME  major vascular and cognitive  characteristics... Much appreciate your insights and devoted labors on getting right info  to us...

Name: Not given
Country: UK
Date: January 2010

Please tell me

Can we be healed ?

[Yes, to a limited extent absolutely, improvement can happen at almost any stage of the disease. To a large degree if there has not been significant overexertion and the disease is in its very early stages, an almost complete remission may also be possible. For more information see 'Treating M.E.' Jodi]

Name: Maureen
Country: USA
Date: January 2010

Thank you for making this wonderful site available to sufferers and suspected sufferers of M.E.

For the past year, I have been experiencing many of the symptoms in your M.E. Symptom list, yet I have had 3 normal brain MRIs, a normal MRA, normal ANA, normal sed rate, normal cellular immune function (t-cells, natural killer cells, helper cells) blood tests, normal Romberg, normal lumbar puncture, but abnormal neuro exam (hyperreflexia, primarily on left side).  The only other thing that has been abnormal is my eye exam which has shown vascular irritability in my optic nerve arteries.  I have been recently put on plaquenil in the absence of any diagnosis other than possible autoimmune disease.

Do you think it's possible for me to have M.E. with the above-mentioned test results?

Thank you for all that you do.

Name: Ophelia Liliana
Country: UK
Date: December 2009

Dearest Jodi,

What an inspiration you are, you are a light in a very dark place.  Your website, is so informative, heart warming and inspirational. You truly are a wonder.

I have not been diagnosed with M.E, and have only been ill since late May of this year. I am struggling with being diagnosed with anything, that isn't 'stress' related. I recently even got to see a Neurologist, but all he seemed interested in was a bout of depression I suffered from when I was younger, in fact he was very rude and quite abrasive with me. I wasn't even given a full exam, just a few tests and then was told I don't have anything wrong with my CNS. I was shocked he could come up with that descion after three small test's. And one of them I nearly passed out on. I could tell you the day, the hour, I got ill. My life has changed so much.

I was an artist, and studying for a Degree in Geoscience, and had plans to go off and do my Phd. Now I lead a drastically different life.  I could sit here and list my symptoms, etc.. but I really wanted to thank you. Thank you for being there for thousands of us, who are lost. Weather it turns out I have M.E or not I have, you have been a shining star. Helped me understand my huge list of symptoms, and helped me keep fighting. And enlighten me on the plight of those that do suffer with M.E, it's not just the physical problems with the illness, but the battle you have to go through, with Doctor's and family and friends.

Thank you Jodi, for your hard work, I wish you all the luck in the world, keeping fighting sweetheart. You are such a beautiful soul.

Love Lily

[Thanks so much Lily. Ihope so much you can find a correct diagnosis, whatever that is, and some support from friends and family too. Like most with M.E., I would agree the battle you go through with friends and family for basic respect and support can sometimes be as bad as the hellish disease M.E. itself. Jodi]

Name: Cathy Bartholomew
Country: England
Date: December 2009

Hugs and kisses for such an inspiring and informative website!!!

I have had ME for nearly 2 years.  It struck just as I was on a 'high' in my life, looking forward to the future after a divorce, redundancy, bereavement etc.  I was starting to date and had such hopes.

In January I start a weekly course to teach me how to manage my symptoms - I wonder how they think I've coped up to now? 

The hospital that runs the course insists that "a person closely involved with my daily life" MUST attend a 'relatives' day during the course.  I even have to sign a 'contract' to agree to this before I can attend the course.

I live on my own and am incredibly isolated.  Who do they suggest I bring along?  I think my closest relationship is with my postman as everything I need has to be delivered.  I'm almost tempted to bring my pet corn snake to the session!

Most days I am housebound.  I cannot cope with domestic chores and live on microwave meals.  But I cannot get help from social services because I do not need help with personal care (getting out of bed, toileting etc).  If I did need personal care they would help to get me up, washed and dressed but would not help with housework or cleaning clothes etc.  So I would still end up sitting in a pigsty in dirty clothes!

I feel ashamed to tell people I have ME, feeling I need to further justify my disability. I have lost my job, my income, my social life and any chance of finding a partner (and I wonder if life is worth living if you cannot share it). 

I could moan for Britain about the poor support for people with ME but I try to focus on happier things.

And your website is one of those bright lights in the gloom.  I have cried at the sad stories here (my heart-felt best wishes to all) but I have also rejoiced that I am not alone and it's OK to feel envious of people who have a socially acceptable illness.

So thank you Jodi, you're a star!

[Hi Cathy, and thanks for your kind words. This course they have you on sounds a real worry! You sound like you have a really wonderful spirit and sense of humour and have so much going for you mentally and with your attitude...it sounds so much as if you need real physical help rather than any type of 'help with coping.' Sigh! I hope at least they do you no harm, and going doesn't leave you sicker...  I'm a bit worried about that. Most of all I hope you can get some real help! Physical help of the kind you could actually really use. Jodi]

Name: jane bainbridge
Country: england
Date: December 2009

i feel very alone at the moment, im waiting to see a docter at the rvi hospital newcastle, to see if it may be ME, that i have ?..  i went from having two quite succesfull jobs, a manager of a care home... and a 200 customer, provident finance collecion round.. to what i am today !! just a shadow of what i was... for years ive been going to my gp, complaining of the most awfull headaches, severe neck pain, constant aches and pains, stomach and reflux problems, sleep problems etc, and was sent for the relevent tests, i became very forgetfull and confussed and uncoordinated, this was quickly but down to deppression, and yes i agree i was deppressed and still are but who wouldnt be !!, it took me a while, but eventually i came across some information on m.e, and asked my docter to consider this option.... i am not tired all of the time, but i do become exhausted and weak and in a great deal of pain if i over do things, things i would never have given a second thought to doing.. i am in desperate need for advice thankyou ....................... jane     

Name: Kimberly Smith
Country: Canada
Date: December 2009

Words cannot describe the care, knowledge and information you have created through this website. Although this is not nearly enough to express my appreciation, Thank you. You have given me hope.

Name: Megan Carbone
Country: U.S.A.
Date: December 2009

Thank you so much for this wonderful resource !!!!!!!!!!!!!!

I'm trying to educate all of my doctors.

Name: harward
Country: usa
Date: November 2009

Your knowledge, and determination combined  - create a titan fisted punch to the psychiatric lobby who we all know have stolen the disease ME and turned it into a neo capitalist dream of 'fatigue syndrome'.

I first read the term 'bogus' in relation to CFS on your website, and have used it ever since. This is a perfect word to use.  I often use your website as a 'source' for medical research, especially on tests. It has helped me a lot, thank you.

Your website, over the years - and now more so with the foundation you have created is surely THE knowledge base for ME (Myalgic Encephalomyelitis) in the entire world.

And yet, you are 'merely' a patient. This says it all, that a patient can produce what you have, but entire government agencies cannot.

I have ME and feel so isolated by the worlds ignorance related to the disease.  I will spread this website to many, far and near.

Name: Veronica
Country: USA
Date: November 2009

Thank you for making this site.  It has been of immense help. I have suffered for eight years with many, many of the symptoms from ME. I will be taking the steps to have the testing done.

I don't know if you are still monitoring these emails. It is your recommendation that Multivitamins  not have iron or copper for ME.  Can you please tell me why that is?

Thank you again

Blessings

Veronica

[Hello Veronica, first of all, my apologies that fully referencing each comment in the immense ‘Treating ME’ paper is beyond me physically at the moment.  From memory, Dr Cheney recommends a copper and iron free multivitamin as iron and copper accelerate free radical and reactive oxygen species (ROS) production. The paper by Dr Marshall linked to on that page also talks about the problems with iron supplementation related to free radical formation, in particular when combined with some other synthetic supplements. Eating iron in moderate amounts in the diet is not a problem however, and small amounts of copper are also okay, but we probably don’t need any extra in supplements seemed to be the consensus. Jodi]

Name: Laura Whitby
Country: England
Date: November 2009

Hi Jodi

I was wondering where you got your source that ME reduces life expectancy on average of 25 years. Hae trawled the internet and cannot find any research indicating this.

Regards

[Hi Laura. Unfortunately of course we don’t have evidence using a 100% M.E. patient population that this is true. However, there is significant anecdotal evidence to support this and from memory this figure was given in a paper (tainted enormously by the bogus concept of ‘CFS’ as it was) by Dr Leonard Jason about causes of death, featured on the ‘M.E. fatalities’ page. Please see that page for more information. Jodi]

Name: nannette williams
Country: usa
Date: November 2009

Just want to say that I appreciate this website more than I can express.  I have had this illness for 5 years now, and I took all the info off your website to my doctor when I was newly diagnosed which he told me was largely "made up" and insisted I was suffering from depression.  Funny thing is I was immensely happy when this happened to me, at a very good place in life, working as a mental health therapist with a good income, and seemed to come down with the worst sore throat and "illness" I have ever had.  I never recovered. 

I have been through times I thought I would die.  I have had MANY mini strokes, been through countless doctors, turned down by disability, spent about 75,000 on medical care,,etc.  I have not been able to find anything good about all this, and the only comfort I get is from hearing I am not alone.  In the US we are plagued even further by being told it is just CFS, they are also big on calling it fibromyalgia, but can't explain how any of those can cause strokes, heart problems, neurological issues. 

I volunteer one hour a week with HIV AIDS patients and I am sicker than any of them.  I don't mean to be depressing, but I want to tell you that if you have this you are not mentally ill.  I have navigated my way through this with doctors throwing around terms like anxiety disorder, bipolar disorder, depression, but again, can't explain why I have crater size impacted lymph nodes that have to be surgically removed at times. 

Being a therapist, the idea that cognitive therapy or whatever therapy can help this is like saying people with MS should just try to walk a bit further.  Of course therapy is good to vent, but being labeled mentally ill has made the experience more painful.  The only help I get is from a rheumatologist, I live in a place where medical care is bad, very behind the times. 

To those of you who can call it what it is, ME, you at least have a MUCH better description of what you have, not that that makes life any easier!  Most people think I am just a little tired. 

I have been suicidal thinking the only way out of this is to die, and look forward to death.  But I have children so this is not an option.  I would welcome anyone who want to personally email me, my address is ca_girl@bellsouth.net.  Ironically, one of my very good friends here is from the UK and both her dad and sister have it, the sister recovered the dad has not.  I feel a strong connection to those of you living in the UK. 

Blessings in even the smallest bit of life and relief to all of you, Nannette Williams

[Ni Nanette, I'm so sorry to hear that like so many M.E. patients worldwide, you are having such a hard time of it. Of course you are right when you say 'CFS' and FM are ridiculous terms to associate with M.E., M.E. is uttrerly differnet to both of these. I hope you can find some fellow patients to talk to, I'll add your details to the pen friends listing I have running too. Jodi]

Name: julie
Country: uk
Date: October 2009

i need to talk to anyone with the same illness.i'm so alone

[Julie, I've sent some links to you to my support groups, hope you are well enough to use one... In solidarity, Jodi]

Name: Anja
Country: UK
Date: October 2009

Hi there

I've been told about your wonderful site, via a facebook thread I found with regards to POTS.

Having read your information it perplexes me sooo much that the extremes of wrong information is out tere.

I will continue to call CFS an umbrella term for loads of things...and I will, as very well put in your documentation, carry on my personal search for getting to the bottom of my health. (I have been recently diagnosed with other things to my pleasure, as like you say, I can now help myself!)

In fact I think I shall add your website (the most eye-catching page) to my profiles in various places, to help raise awareness.

Thank you for all of your work and all the medical information provided by helpful medical experts...

I wish everyone the best in helping themselves to enjoy each day

Anja, UK

Name: Sue Crawley
Country: England
Date: October 2009

A good friend alerted me to article in Sentinel newspaper Washington, USA dated 9th Oct 09 ..... STUDY LINKS VIRUS TO CHRONIC FATIGUE SYNDROME. 

Thanks Jodi for giving us this forum to share all that we are going through with this very debiliating condition.  You do such good work - I am very thankful to you.  As I said before, you keep me sane.  Lots of love, Sue x

[Hi Sue, and thanks so much. Yes I’m aware of this new retrovirus link to ‘CFS.’ It does seem however as if it affects a vast number of healthy people and those with many different diseases which cause immune weakness. It seems like just yet another passenger virus, yet is being hyped as ‘the cause’ unfortunately. Studies have also only been done on mixed ‘CFS’ patient groups, not a group of M.E. patients and all that has been shown so far is a vague link, some sort of association, which may very likely be just that like the RNase L problem, this occurs in many of those with compromised immune systems and means little. It is too early by far to say this RV is the cause of anything, yet sadly that is exactly what many are doing. HFME will be releasing some official comments on this topic soon. Jodi]

Name: sarah manning
Country: uk
Date: October 2009

dear jodi,thank you so m uch for your reply. you will be glad to hear i have now been seen by the locum doctor,who has taken over from my own gp whilst shes on maternity leave. the locum dr seemed very good and m.e aware,which i havnt found very often.i would like to take you up on your offer of more information on m.e clinics as yesterday i had my letter from the hospital to see the consultant in 18 weeks time, not bad since ive been here since april!!!!!!!!! im not sure wether i want to attend now after your response to my earlier message in september,im confused. i certainly dont want to get any worse than i already am, i have no life as it is or very little.the locum gp wants to start me back on a pacing programme in which i have to arrange something 4 times a week to get out of my flat,even if its to walk across the road to the shop.is this the way forward ??????????/ i just dont know anymore.could i take this oppertunity to say hello to all the other m.e sufferes on your site and i wish you all well.thank you for taking the time to read this. with regards from sarah xxxx

Name: TyH
Country: USA
Date: October 2009

Thanks for making such a wonderful website.  It makes a huge difference for us who have the disease.

Name: Elaine

Country: England

Date: October 2009

Thanks for such an informative site :-) Keep up the good work (as long as your health allows you to)

Name: Dianne Mawhood
Country: Australia
Date: October 2009

Goodday-- had to say that -

i'm bush aussie--- 59 years old, diagnosed from an article in the Womans Weekly over 30 years ago. We have come a long way in some cases!! Am severely disabled according to your scale but slip into the worst category regularly. how frightening it all is most of the time .I am just getting to the point where I allow myself to acknowledge the way  I am feeling rather than glossing over things to try to apear less ill. So many funny symptoms appear that  i'm never sure what is going on. One episode of dribbling a lot-M.E or what I ask myself?stopped now and no sign of strokey thing so probably another show that something is not right.

thank you for this comprehensive site.when I read something and feel myself letting go a deep breath and saying to myself[ usually out loud to myself] "yes!!!" or "thats so right " I know i m onto a good thing.'I think this site is worth a PhD so maybe you can get those university dreams through another door Jodi.

We sufferers are often good at sneaking up on things sideways Just to cope What silent warriors we can be.Especially with comrades and good leadership.Must go now . This has been a marathon effort .Fight on Warrior Di

[Thanks for writing Di, I’m so touched by your comments. Jodi]

Name: Trixysurfchic
Country: Spain
Date: October 2009

I have been ill for nearly 7 years nad was finally diagnosed with M.E in Sept 08. when I had my last major relapse lasting around 10 months including being bed ridden for the most part of that time. I had a really good summer as  Imoved to Spain so my parents could help look after me but I think I got over excited and over did it then started to replase again. At least I am recognising the symptoms for what they are now and know to make changes when I start to get ill. I recently found out I am pregnant and I seem to be relapsing due to it, I've researched and found that most people in similar situations seem to actualy feel better in their 2nd and 3rd Trimeters so here's hoping.

This site is very imformative and great o pass on to friends and family who offer support.

Wishing Good health to all xx

Name: Wendy Akers
Country: Oz
Date: October 2009

G'day sweetheart

I clicked on your site after a period of absence and noticed you had changed your focus from CFS to ME. I'm not sure if you noticed an editorial in The Australian last week  about DSP and the suggestion that RSI and CFS were phoney diseases and people were clamouring to claim this miniscule payment. (Well, yeah!) I was so angry and upset (tears) that I fired off a letter to try to explain a little bit about what CFS sufferers go through. It was published. I also, after signing off, requested that they talk to one of their journos who's friend regularly travels to the UK to care for his CFS sister and to give their father a break from caring duties.

Gotta go to bed - neighbour's kids are going to inundate me for Halloween 'treats' tonight and I need to rest.

Cheers

Wendy Akers

Canberra

[Hi Wendy, I agree it is very worrying that those labelled ‘CFS’ would have any threat to their meagre benefits. There is this bizarre notion that benefits are easy to get and given to anyone...but for many of us it was such a hard struggle to get them even when we are so severely ill and deserving. There is no such distinct disease as ‘CFS’ but many given the misdiagnosis, including those with M.E. are of course very ill and disabled.

Actually my site has ALWAYS been about M.E., from day one. Not about a vague and medically unexplainable fatigue syndrome or wastebasket diagnosis, but about a distinct neuro disease that is often severe and very similar to MS. It was just that it took me a few years of reading, slowly, to understand that ‘CFS’ was a bogus concept and not the same as M.E. at all, in fact 'CFS' was a planned cover up to try to discredit M.E. to save some money for big companies. It took me a few years to understand all the different terms and definitions correctly. I was misinformed by vested interest groups and their lackeys at first, as almost everyone is, sadly. But I have always had M.E. and tried to be an advocate for M.E. Hope you got the rest you needed! Jodi]

I discovered Hummingbirds a little late for me. However I found it very touching - and I like very much the hummingbird illustration.  You see my daughter, Asha was diagnosed with ME in 2004 although she had it years before that and was housebound and in bed mostly for the last two years.  Sadly and shockingly she died on 12 December 2008 and there is to be an inquest this month.  The post mortem showed that she had something called adenovirus which caused encephelitis. 

Her death was very sudden all I knew was that her ME was much worse and she talked about going to see the doctor (something she did not do if she could help it although he was sympathetic) She didn't go and I am left wondering whether, if she had, he could have done something.  Having read about you I am convinced you would have got on so well.  Looking at the TV programmes you like and the bird theme you have - I wish she could have known you. 

I do wish you well and think you are amazing. Kind regards, Adele

[This is so so sad A... As you know I have replied more at length by email. Wish you all the best, Jodi]

 Name: Kate Gravett
Country:  UK
Date: April 2009

I still can't believe how limited the information is on other sites! I'm a member of the ME Assosciation and a suffere of severe ME, and the MEA site still uses the term CFS. Their information is sadly lacking and anyone taking a glance at it would get barely a glimpse of what ME is like! If only they would glance at this one and get some up-to-date info. Is it possible to set these "information" websites straight so that the misunderstandings and stigma can come to an end?

Name: devora
Country:  usa
Date: April 2009

first of all this was the first and only support group i had come across in all the 15 years i had been so ill, many of those years in the complete dark and very lonesome. i am so proud of all that you've accomplished here .. thank you for all the love and kindness i received via these complete research e-mails and newsletters.

i still want to receive these most informative e-mails and continue to be part of the support system.

always good blessings, and deep gratitude!

Devora

Name:  Not given
Country:  USA
Date: April 2009

It looks as if all ME dx's are occuring in the the UK or other countries. The US labels us with CFS and I sure hope the WPI will change how Dr's look at and treat us. The last 27 years have been awful with regards to what has been lost...in living- family- work- well YOU know.

[Most with M.E. are mislabelled with ‘CFS.’ But also, the vast majority of those who are told they have ‘CFS’ do not have M.E. These two facts are very different and cause a lot of confusion I’m sure you’d agree. Many say M.E. is called ‘CFS’ in the US but this is absolutely not true at all. 27 years is so so long, I hope so much for a brighter future for you in all ways. Jodi]

Name: amanda
Country:  uk
Date: April 2009

sorry in advance-thisis a bit (!) negative - but I really need to get this of my chest to some people who might understand- i would also be really intrested if any one has any advice on how to deal with this.

  I am 42, ive had M.E. really really badly for 11 years now. I got diagnosed at a really good hospital deapartment, and have had some good support from them , when i was well enough to get there! But have moved to a different area, i have a duaghter 19, at university, and live on my own now( my duaghter used to live withme but now spends holidays from uni with her dad- as i am so ill.)

 this is my problem( and has been for years, really)-the endless horrible , hurtful lack of understanding from my sister, and mum; who just refuse to accpt how ill i am. if i say im too ill too answer the phone they just call me any way-this is specially my sister- if i say im too ill too talk- she snaps at me and acts like im being nasty- if explain how ill i am by describing my symptoms- iget told im self obbsesd or sighed at like I'm really borring. If idont metion ym syptoms- they assume i am completly well. they ask how i am -then if i say well, pretty poorrly they tut at me and say thins like-isnt it about time you started getting better, i should forget about that silly ME if i were you.

 i can cope( in a weird kind of way,) with being so ill i cant speak or do anything at all alot of the tieme; what i cant cope with-is this ongoing blame and cricscm and spitefulness and just compete ignorance, from people who are supposed to care about me. i am so sick of apologising, and on the few occaisions im actually well enough to speak to someone- being snapped at ,sneered at or ignored and being made to feel really guilty and apologetic .

anyway - sorry this is V moany- i am just really fed up with this to day, love,Amanda,

[This isn’t at all ‘moany’ it’s heartbreaking and you are one tough cookie who needs and deserves a lot more support than you are currently getting, like so may of us... . Will write more to you privately as I do have some small suggestions that might help a tiny bit, I hope. Jodi]

Name: Katja
Country:  Sweden
Date: April 2009

Hello

I found you on YouTube, many thanx for posting there so I could find you here :)

I've been ill since approx 10 years or more, no diagnose yet, still struggeling..

You are doing a fantastic work with this informative site, I've linked it to my blog.

I wish you all the best!

Name: Kenny Swan
Country:  UK
Date: April 2009

Thanks for the wonderful site! This is the only site I have found that really know's what it is on about regarding M.E.

I can relate to what has been written perfectly and realise that I am not just lazy or mad, as a lot of people want me to believe!!

Many thanks for this valuable life line.

Name: Rheanna Morris
Country:  US near Washington DC
Date: March 2009

Hi Jodi, Much love to you.  I have FMS and ME and am disabled.  It began at age 22 so like you I have been sick my entire adult life.  Your website is the best!

Question-It's kida against my religious beliefs but God searches the heart this I know....If I give my body to research after I die where would that place be?  Any idea how to find out more info.  Google did me no good.

I have never found a doctor who knows how to treat my illness and they tend to not like me too much because I know more than them about it.  If you know of anyone around Washington DC and it's not too much trouble I would love to hear from you.

Congrats on your website.  You have made a huge difference for many.  As hard as it is to memorize names yours will always be in my mind.  I am proud of the advocacy you have done and I too am becoming an advocate and my location is perfect for lobbying on capitol hill and congress.  I admire you.  You are not forgotten though you are stuck inside your home like a trapped hummingbird.  I will never forget you.  I feel like when I die there won't be enough people who knew me to even have a funeral so why not dedicate my body to science but only if it's going to be done right by the right people.  I too am forgotten in my home.  By the way, my mother has MS and FMS and her mother has ME too so I am the third generation with this....We all lived in California durring the Sacramento and Roseville outbreaks and my grandparents where in the air force so my parents grew up on base....

Anyways, its an honor to have found your website and to write you truly.  God Bless
Love your ME sister, Rheanna Morris Easton Maryland

Name: Joey Narciso
Country:  U.S.A.
Date: March 2009

Hi, Thank you for your very comprehensive website.  Thank you for all you do. 

I did manage to finally start collecting SSDI in the year 2006, I am largely bedbound, of course immensely frustrated with the medical profession and lack of information regarding this illness, have lost nearly everything--my home as well as familial relationships in addition to of course my former life and my health.  I have gained some wonderful friends, however, and all of these individuals, yes, met them on the Internet. I will sign up for the e-newsletter.  I will sign off for now.  Again, thanks, and take good care, everybody.
Joey

Name: Ernie Thrush
Country:  Australia
Date: March 2009

Dear Jodi,

Thank you for putting together such a wonderful resource. I have had 30-50% ME (by your scale) for 43 years .Stumbling across your website has changed my life. I feel as though I have stepped into a hidden lift and been elevated to a higher plane of living. The low grade background of helpless rage I have lived with for so long has been replaced by a peace I never dreamed existed. To at last KNOW what is ME, and to understand what is happening on the horrible roller-coaster I have been on for all but 7 yrs of my life, is such a profound change, I can only begin to digest it, let alone articulate the experience.

It totally amazes me that of all the 7 odd billion people on the earth, someone so challenged (for want of a better word) as yourself should be the one that finally draws back the curtain of ignorance, fear and misunderstanding. You have created a truly world class resource in the face of almost unimaginable difficulties-I salute you.

Sincerely, Ernie T  

Name: Carol
Country:  U.K.
Date: March 2009

I do not know how many of you in the U.K are aware that there is a petition currently online at the Downing St. website to get Ministers to attend the Invest in M.E. conference this year.

So many people just do not realise that there is a wealth of information about M.E. already out there that is ignored by politicians and a great deal of the medical profession.

Having the Minister for Health and the Chief Medical Officer sit down and listen to some leading researchers and practitioners would be a step on the right road.

M.E. is marginalised and trivialised by the political, psychiatric and insurance lobbies in this country. Anyone who feels able, please take a few minutes to click on the website and add your name. It's a small step, but it could help.

(http://petitions.number10.gov.uk/AttendIiME2009 )

Name: Sue Norton
Country:  England
Date: March 2009

The new look to the website is great Jodi its much easier on the eye to get round all the information. This is the only website I know that tells it how it is.  I tell everyone about it.  I have done a write up about it so everyone in our local M.E group in Leicestershire knows about you too......well done...you are amazing. Sue x

Name: Judith Wisdom
Country:  US
Date: March 2009

I'm not even sure how I found this site.  I think it had to do with my concern over some surgery I have to have.  I've always greatly admired Dowsett 's mind.  She like I feels that there is no disease called 'CFS' or "CFIDS."  I got sick before those terms were "invented" and I've written a bit as to the likely cause of their inventors rejecting ME and making a moniker like CFS.  It has something to do with the mistaken notion of what science is, which hit the US badly, in medicine and even my field of yore--sociology.  You are not considered as being scientific if you describe something that you can't measure with quantifiable and reproducible numbers or pictures.  They never learned even about the uncertainty principle that had its home in physics, the field of intellectual endeavor considered so very scientific!.

I got US disability because I found the British literature, by Dowsett and others, and my then doc was convinced he should use ME.  (At the time CFS wasn't a gleam in the eye of the US docs.  I was considered as having "viral labyrinthitis" and of course some kind or sort of emotional problem (which hardly distinguished me from so many folks--the docs who thought that as well as so many patients with all sorts of illnesses.  In fact I did some lousy and then some very good psychotherapy--not to cure the illness but to lighten the load.  And since the illness finally took such a dreadful toll on my life, the therapy helped me cope but didn't prevent my getting, as I now am, despite efforts a plenty, to get well.    These articles will help me in my relationship with the damn welfare agencies and also with some of my doctors.  When I say part of what Dr. Dowsett says (and I don't know enuf to say all that she can) it is viewed as defensive.

She is a light in a terribly bleak medical mal-practice.

[I agree, she is. Jodi]

Name: Paula
Country:  US (Northwest)
Date: March 2009

Wonderful site, but I'm not sure I have ME and would like to be tested.  I'm with Beth . . . I'd also like to know a physician in the US or British Columbia that is trained to test, diagnose and treat ME.
 
Thank you for all the information and work to straighten out the CFS sham!  I've dealt with "CFS" for 17 years and I'd really like to get to the bottom of this. 

.  I read these messages and can sympathize.  It's maddening not to be able to get a proper diagnosis and treatment.

I'd love to hear from any of those in the US or Canada (especially NW US or SW Canada) who've written in and said they were diagnosed  by a physician.   Any help toward testing/diagnosis/treatment would be greatly appreciated!

Blessings!

Name: Angel
Country:  United States
Date: March 2009

Hi , my name is Angel, and I have been diagnosed with C.F.S and Psoriatic Arthritis , Fibromyalgia and Lyme Disease and I hurt so bad words are not of this earth to express the pain it is one that often drives me to suicidal thoughts. I make sure never to be alone and as I do not have a desire to die when medications are working to lessen the pain , when the pain is out of control and is non stopping rising pain , increasing into days then weeks , months, and now ten years later to the point Im now bedbound of the last two and half years it is difficult.

I want to say how much I admire Hummingbirds Guide it is my first to see this site and I love it. I want to learn all I can to become an encourager to someone else. Don't do it! Don't take your life. I know first hand how bad the pain is I often can not breathe it is difficulty we just can't give up . We must fight with what we have left in us and never give up. I hope you can know how grateful Iam to have this site to reference too. I hope to meet you one day and others to encourage each other we just can't give up.  I look forward to anything I could possibly do to be of help on here...... Im so new to this as I have recently within the year been diagnosed.

Love you all.......God bless
Never give up
with love
angel  female 44 yr. U.S.A.

Name: Lee Miller
Country:  United Kingdom
Date: March 2009

Bravo!!

Very informative, although I'll take your info under advisement, I will say that there appears to be a lot of information that rings true in particular the majority of Governments (The UK definitely!) who continue to ignore the plights of so many sufferers.

I have been researching ME for a few years and although I've never thought of it before it seems like total insanity that so many people are being ignored all of the time.

A recent UK Court hearing (judicial review) was over turned which was seeking to change the NICE guidelines for a fairer method of treating patients, perhaps the answer as to why is on this site.

Have linked to this site from my blog and included a couple of video's, hope it helps.

My question has to be what's the answer?