The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Case studies

  • Case studies featured on the HFME site
  • M.E. case studies in print
  • Case studies featured on external sites

If you would like to submit your own, or your child's, M.E. story to possibly be included on this page, send an email to this address.

Case studies on this site

Note that many patients are very ill and may not always use terminology correctly, or be aware of all the medical and political facts of M.E. and of 'CFS.' Many patients have made a real sacrifice to tell their stories despite their severe illness. Please keep this in mind when reading these case studies. Mere terminology etc. aside, however, the facts of M.E. become very very clear when you read the content of what these patients are writing.



Name:
Clytie

Country: Australia

I was part of a cluster outbreak at my workplace. Everyone got "the flu", and six of us didn't get better. We had no idea why not, and we all struggled to return to work. Interestingly enough, we were all given different diagnoses by local GPs: glandular fever, juvenile arthritis, Ross River fever, different flu, even meningitis I think ... Having returned to work regardless, I collapsed most embarrassingly.

 I remember I was writing on the whiteboard, and I was holding onto the side of it, trying not to fall down, but I slid down it, no matter how hard I tried to hold on. My sight had shrunk in, all black edges, and all I could see in that little lit space was the edge of the whiteboard, and my fingers trying to grip it. They couldn't, and they slipped down the edge of the board, and everything went black.

 Note: don't collapse in front of your students. It worries them. I was so embarrassed to worry them like that, and not to be able to finish the lesson.

 After a few days, I felt better, and started trying to do more (I was a sole supporting parent of three children aged 13, 11 and 2). Again, I collapsed, and this time I was having difficulty breathing. A friend took me to the hospital, and a local GP air-ambulanced me to Adelaide. I remember him telling me not to worry, he was sending me to hospital in Adelaide and I would be OK. I regained consciousness at a psychiatric hospital. His provisional diagnosis for why I collapsed and had difficulty breathing was apparently that I was insane.

 The psychiatric hospital didn't know what to do with me. After a couple of days of rest had made it possible for me to interact, they gave me a questionnaire composed of a long stack of cards in a box. I gained quite an education that afternoon, and couldn't help bursting into giggles as I went through them. "You mean, people actually DO this stuff?" I kept asking. The nurse said, yes, they do. "Wow," I thought, "I'm distressingly normal". The stuff about sex with animals gave me a whole new viewpoint on my German Shepherds, I can tell you.

 The psychiatric hospital staff decided that I was quite normal (I should have asked for a certificate ;) ) but fortunately they had a pain clinic attached, which I found useful. I spent three months there. Read on...


Name: Sarah

Country: USA

During my first year of ME, my symptoms were milder.  I wasn’t aware of any illness called ME, and wasn’t aware how critical rest was for an ME patient.  Since my symptoms were mild, I was able to push through them, and retain a pretty high level of activity – certainly not all my normal activities, I did get worn out much faster than before, but I was still able to push my body to get through my work and my volunteer work, and many other things. 

After my first year of pushing, I crashed.  I was completely homebound, and largely bedbound for an extended period of time.  I’m not sure exactly how long, as all the days and months just blurred together into one long period of time.  During my long crash I still was not aware of any illness called ME.  I had been told I had Fibromyalgia, or maybe Chronic Fatigue Syndrome, or maybe both.  I didn’t fully “fit” the diagnostic criteria for either, but that’s what I was told.  I was informed that exercise, “getting out more” and staying as active as possible was the best thing to do.  One doctor even told me that it was very rare for someone my age, who had been so vibrant, to be so sick – maybe I was just depressed, besides, he said, I looked fine.

I was eventually sent to a cardiologist for some testing, as I was having issues with passing out after getting too warm, after being on my feet too long, after sitting upright too long, after over-exertion or after any kind of emotional/mental stress.  I failed my tilt table test miserably, and was diagnosed with POTS and orthostatic hypotension at that time.  The cardiologist said this disorder was no big deal.  He said he had seen many patients with hypotension, and it wasn’t anything that slowed any of them down.  He was very unconcerned with the fact that I had experienced fainting episodes in the shower, while driving and in various other locations.  The treatment he put me on first was an anti-depressant.  I created a real fuss over that, so was changed to a beta blocker, was told to up my water intake (though I was already drinking at least 8 full glasses per day), and was instructed to do an exercise which consisted of standing up straight with my back against a wall for extended periods of time multiple times a day.  This treatment was completely unhelpful, and the standing exercise further exacerbated my symptoms.  I eventually had to stop the exercise, even though the cardiologist had told me not too, as I just couldn’t handle the worsening of all my symptoms, since I was already housebound and largely bedbound.  That stupid exercise I was told to engage in made my orthostatic intolerance much, much worse.

A neurologist I later saw gave me a referral to a family practice doctor.  The neurologist refused to give me a diagnosis or a name for what I had, even though I asked her.  All she said was “I send all my patients with symptoms like yours to this doctor”, and the appointment with her was over.  While waiting for my appointment with the new doctor, I acquired a laptop, and started using my days in bed to research as much as I could.  I eventually stumbled upon the Hummingbird website, and finally started to realize that what I had was not a mystery – it was a true, neurological issue, and it had a real name that really meant something.  Myalgic Encephalomyelitis.  It was life altering to know that.  When my appointment with the new family practice doctor finally came, he told me that the term “CFS” doesn’t mean anything; it doesn’t refer to an illness, and is just a phony, wastebasket label.  I totally agree with him, and finally, I had found a doctor who could help me manage some of my symptoms a little.

All throughout that time, I was without health insurance.  That means I had to pay all the fees for the specialists, the different tests and medications out of my own pocket.  I was also severely disabled and unable to work, so I had no income (and hadn’t been able to work for a couple of years already, so had already been living on my limited savings).  I applied for health insurance, but was denied due to a pre-existing condition that no one had diagnosed me with.  Seems according to the insurance company I was sick, but according to the medical professionals I was fine.  I applied for financial aid in paying those medical bills too, but according to those agencies, I wasn’t sick either.  All those bills completely emptied out all my bank accounts, and I counted on family members to keep a roof over my head and food on my table. Read on...


Name: Darrell and Jane

Country: UK/Ireland

I am not a sufferer directly but a carer. I am 55 and my wife, Jane, 53. We moved 3 years ago from the UK to Ireland. She has had M.E. for over 19 years now. We have 3 children, the youngest was around 4 and the eldest 10 when she contracted the illness.

So as you can imagine, things were very worrying and tough at the beginning. I wont go into all the problems/ symptoms because you all know them already. I will say that 20 years ago we had some really bad advice from various doctors. Despite the fact she was working as the doctors secretary in a medical practise at the time ! One telling my wife to get up, get on with your life, exercise etc etc! She was prescribed some anti-depressants early on, not for depression, but for the side affect which greatly eased the muscle aches. But really since Jane was diagnosed, and that took 2 years, we have really managed the illness ourselves. The doc who gave us the diagnosis told Jane to go home and have total rest, do nothing for at least 6 months. We have a saying - 'if it's an effort...... dont!'

Eventually after years of being almost bedriden and wheelchair bound she has got gradually better. Not and nowwhere near 100% fit, but at least able to work in the garden, go sailing and live an almost 'normal' if not careful life. I think we have just accepted the illness as part of our lives now. She is now coeliac, wheat, oat and alcohol intollerant It seems, in her case, that if she does 'over do it' physically, after a day or twos complete rest, she is able to get going again. Emmotional stress however is different thing. In the past year we have had some problems with one of our children and it has really had an disasterous effect on Jane. Read on...


Name: Caroline

Country: UK

I remember a time eighteen months ago when I was so excited about my life and my future. I was six months away from graduating as a Mental Health Nurse, I had great friends, an active social life, and I loved walking and dancing and having fun. Then I got a throat infection and my world was turned upside down.
 
The date was March 9th 2008, I woke up with the worst headache I’d ever experienced, I was unable to tolerate any light and took to wearing a blindfold I’d got a few years earlier on a flight somewhere. Two days later I was in hospital undergoing a battery of tests with doctors wondering if I had meningitis or a bleed in my brain or maybe something else equally horrific and terrifying. In the end they sent me home telling me I was simply suffering from a migraine, albeit a migraine that none of the medications they gave me could eradicate.
 
In the UK where I live (as with most of the world) it is almost impossible to obtain a diagnosis of M.E. I have been labelled as having CFS/ME, a diagnosis that cannot be given until a person has been ill for at least four months and basically a diagnosis of exclusion. By this time I could barely walk, I felt so exhausted it felt like I’d run two or three marathons in a row. Every inch of my body hurt but none of that could compare to the pain in my head, any loud noise or light makes me feel like my brain is on fire and melting inside my head. It’s hard to explain but if I am suddenly exposed to either it’s like I go into shock. I can’t think of speak for a while and when I can it’s usually to say please can you stop that!
 
Since that fateful day in March last year I seem to have been developing more symptoms all the time. Apart from the pain which wracks my whole body I also have problems with my heart beating either too fast or irregularly and I have an abnormal ECG reading, I have trouble eating due to almost constant mouth ulcers, stomach pain, nausea and regular vomiting, I have periods when I am completely paralysed for anything between thirty minutes and a few hours, I have numbness and tingling in my extremities, my hands and feet are constantly freezing despite wearing three pairs of thick socks and a pair of gloves even in bed, I have problems with my memory and speech and have difficulty understanding others, particularly if there are noises in the background. Read on...


Name: Kate

Country: France

I am 62, have had (violent and sudden onset) M.E. since 1961. Has brought abuse, homelessness, unbelievable loss and suffering, as it has for so many.

I was sooo ill, for soo long. I was one of the very, very ill M.E. people. I mean really dreadful and for years and years and in terrible conditions and with a family who were even worse than the doctors - imagine how bad that is - and I was homeless, rescued by gyspies, you name it.... BUT I did get much better. That was what I wanted to tell you - it had been so many decades of struggle, but, on November 2nd last year, I suddenly got much better and continued to be better and better. So you see, it can happen.
 
I then ruined it afyer only a few mont7hs of betterness, buyt trusting that bloody doctor (drug dealer) and now I'm doubly ill, as it's made the M.E. worse again, plus all the other horrendo'us damage, and I don't think I can recover this t7ime, as am too old, am in a bad situation (stuck in back of old van on campsite and remaining family just waiting for me to die, so that they can inherit anything that's left.) Read on...


Name: Matthew*

Country: UK

Before becoming ill, I was extremely sporty. Initially, after not being able to rest when having a virus on a school trip at an adventure centre and made do all the activities and never recovering, I was only very mildly affected. This I put down to giving up sport because of the muscle problems I developed so for the early years, I was able to go to school and then college full-time although I had to make cut-backs in most other areas of my life and, as my brain didn't work as well, I struggled. Read on...


Name: Richard

Country: UK

A parent's view - When my eldest daughter was finally diagnosed with ME (after 3 months of doubts and tests) we were given an appointment for what was planned to be the first of many CBT sessions. I took my daughter along and we listened and the woman stared taking notes of my daughter's history - where she was born, what she did, what she liked, what her grandmother's name was, her grandfather etc. and started saying that she was looking also for any trauma which might have occurred. I listened and kept reasonably quiet, as I wanted my daughter (then 13) to explain. Read on...


Name: Owen*

Country: UK

Firstly, It took 8 months to be diagnosed. I was given counselling which I could barely attend and spent some of my sessions lying on the carpet of the psychologists floor. I had lots of blood tests etc. I was told that people with depression have high cortisol levels, that’s funny I said, I barely have any.

Anyway I had to attend just to get some sick pay from work. I was then reffered to Manchester and diagnosed with CFS, since then I have since I private doctor who says I have ME, not CFS, bloody confusing. Read on...


Name: Ruth

Country: Ireland

I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years. Read on...


Name: Johnno

Country: Australia

I allowed myself to be referred to and treated by the psychiatric lobby for three years, their diagnosis being post traumatic stress disorder, despite the absence of any specific trauma-worthy inducing factors in my life.

Consultations with psychiatrists turned regularly into discussions about my medication, usually SSRI's and the fact that they failed to address my symptoms at any dose, indeed often making me feel worse, in fact over-prescription causing seratonin syndrome at one stage.
Read on...


Name: Flora and Samantha

Country: UK

I am Flora, mum of Samantha aged almost 16 and poorly on and off since aged 6. It’s been horrendous with doctors saying, ‘pull yourself together’ ‘low pain threshold’ ‘school phobia’ etc. Read on...


Name: Monique Brennan

Country: UK

Firstly, I had never heard of such an illness when I frist became ill in July 2004. In fact, I rarely became physically ill and so such illnesses were of little interest to me being a healthy person and busy finctioning at a full capacity.

I remember the morning well. I had, had a bad nights sleep and had been having night sweats for a few weeks, so bad that I had to get up in the night to change my clothes and bedding. This particular morning I felt as though I had been fighting off a flu or something, it was winter and I had, had my flu injection but being around a lot of students I thought I may have caught something. Read on...


Name: Luke*

Country: UK

In the early days of being ill (when it was originally thought that I was suffering from acute stress), I was advised by my GP to take longer and longer walks each day. This I faithfully did, until one day my legs gave way suddenly and completely, pitching me onto the roadside.

Fortunately, living "in the sticks", with rarely a car passing by on the tiny backroads, I wasn't involved in an accident. It took a good fifteen minutes or so for enough strength to return for me to be able to stumble to the nearby post office, where I was immediately offered a chair and a glass of water. It was a further twenty minutes or more before I was able to struggle home. Read on...


Name: Erik*

Country: Switzerland

I am writing in behalf of my son (16), ill since december 2003 (almost 18 months now), just got a week ago a diagnosis from a brave pediatrician, not yet acquainted very much with ME/CFS and ready to read through all this documentations (canadian guidelines, etc. etc.). My son still being in danger of being harassed by schooldirector and child protection authorities and psychiatric clinic. Read on...


Name: Mark*

Country: UK

I became ill in February 1993, just a few days after receiving a tetanus booster. The original diagnosis (no one noticed the tetanus booster at the time, or if they did, they didn't mention it - and no one's mentioned it since) was "acute stress". To this was later added "anxiety" and "depression".

My GP recommended I take longer and longer walks every day. This I did - until I literally dropped. After a very worrying struggle to get home again I realised this was not such a good idea. I kept trying to exercise, however, and it made me worse and worse, till it got to the point where I had no choice in the matter any more: I was bedridden most of the time. When I *was* able to go out, I couldn't do so without using a walking stick. Read on...


Name: Rose*

Country: Australia

Many years ago, when I was only moderately ill I tried a series of graded exercise therapy at a highly regarded private hospital down here. The first time I was inpatient for 4 weeks and then an outpatient for about 6 months. Read on...


Name: Clair Coult

Country: UK

I was diagnosed with ME when I was 15 years old. I am now 30 years old. When I was 21 years old I saw a doctor at my local hospital's Pain Clinic. He did a brief examination and declared that I didn't have ME anymore and that I was unfit. The only way I was going to recover was if I did a course of physiotherapy. I knew he would label me a fraud if I didn't attempt it so against my better judgement I agreed. Read on...


Name: Lauren

Country: UK

I'm Sue, mum to Lauren 19. who has been ill for 8 years. Lauren isn't well enough to write herself so I hope you don't mind a second-hand account.

Lauren was disbelieved by the first paediatrician she was referred to at age 12. This woman told her to do as much as she could, to get up at her normal waking time for school and then to go to school as normal. The second consultation a year later saw us berated as a family for "giving in" to Lauren and the implication was that she was school phobic or being bullied.

We were told to increase the activities she was doing and she would soon get better. I guess this isn't classic GET but the effects were the same – a total and utter " crash" which means that Lauren is now mostly bed bound, housebound and has to be helped to bathe (and sometimes to eat). Read on...


Name: Vivien

Country: UK

I’m in contact with many people with M.E. both by e-mail & letter & it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching & lecturing in 1986/7. I was supposed to do an M.Ed. in Human Relations at Nottingham University from October 1990, but I had to give up my place due to ill health.  They kept my place open for me the next year, but I was never well enough to do it. Read on...


Name: Karen

Country: Australia

I was diagnosed in 1988 by someone who was studying CFS. He warned me back then already that exercise while the virus was active was not beneficial. I proved it to myself that if I did a little too much, even just once, I would get worse.

In 2001-2003, I saw a doctor who clearly knows nothing about CFS. I was assured that if I would exercise I would "feel better". I tried it for a couple days, and again, felt worse. This guy is now petulantly telling disability that I'm still sick because I won't follow doctor's orders -- he can't accept that I am following some OTHER doctor's orders, not his. Read on...


Name: Karena N

Country: UK

I am truely blessed to have had a GP who knew enough about ME to have written me a sick note and directed me to go home and rest! In his experience people with symptoms like mine had not faired well in the UK system and patients had either got little or no benefit from CBT or had been harmed by GET. As these are the only two mainstream therapies currently available in the UK I am grateful he exercised the wisdom not to refer me to the 'specialists'.

Over the last 2 years I have had gradual but steady recovery, which continues. What started as damage to my CNS (with all kinds of neurological and clinically observable and testable symptoms) is now greatly healed. From not being able to stand in any comfort for any period of time, I am now able to walk all day. And from not being able to read or talk for more than a few brief moments I am now able to work and socialise again.

[HFME note: This is a wonderful example of what a big difference rest in the early stages can make! I hope this gives hope to the newly diagnosed and reinforces the mesaage about how important avoiding overexertion is in avoiding M.E. becoming very severe.]


Name: A mother of a child with M.E. (name withheld)

Country: Australia

Cancer and Myalgic Encephalomyelitis

An Australian mother* explains the difference between how her daughter was treated by medical staff when she had cancer and when she later developed Myalgic Encephalomyelitis - and the devastating additional burden the ignorance and psychological propaganda surrounding M.E. has caused her child to have to bear.


Name: Gurli Bagnall

Country: New Zealand

BEFORE THE LIGHT DIES By Gurli Bagnall, October 2005.

'Like a number of other ME sufferers, I have succumbed to heart failure, a complication of ME which I believe is directly related to years of medical nneglect and abuse. My condition is terminal but at this point, I have outlived the specialist's expectations by about a year. I am therefore conscious of the fact that, contrary to his belief, the "time-table" is not set in concrete and I need a contingency plan. '

PERSONALLY SPEAKING by Gurli Bagnall 

 Instead of the balanced individual of at least average intelligence who I believed myself to be, I have been deemed to be a pathetic, snivelling, neurotic, lazy, lying, devious, unintelligent person of poor character just waiting - even as I deny the need - to be taught how to think and behave; how much and when to exercise; and to swallow the psychiatric drugs the "therapist" is itching to put into my mouth. The trouble is, the people who make these judgements, are strangers. I have never met them. I have never seen them. I have never spoken to them on the telephone. For all I know, they could be a bunch of modern day Jack the Rippers.I take these judgements very personally. Just who, I have wondered, are these clairvoyants masquerading as psychiatrists? 

OPEN LETTER TO CONSULTANT, DR. JH by Gurli Bagnall, 17th February 2004

Your business is supposed to be health, but only on your terms -   irrespective of whether or not those terms are in the patient's best interests.  If someone does not respond or cannot tolerate your methods, tough! Correct me if my memory has let me down, but last time I looked, I believe  The Health and Disability Commission's Act stated that the patient should be given all the options and allowed to make the choice if that is his or her wish.



To read specifically about the M.E. case study of Jodi Bassett, of HFME, please see:

What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E. by Jodi Bassett. (This paper combines the available research on M.E. with a personal description of the illness to try to explain what it really feels like to have M.E. This is not just a second 'list' of symptoms - more than 50 individual symptoms (and other characteristics) of M.E. have been described in detail.)

A day in the life of severe M.E. by Jodi Bassett

M.E. vs MS: Similarities and differences by Jodi Bassett

A Million Stories Untold by Jodi Bassett

Hummingbirds by Jodi Bassett

My case study: I had a mild/moderate case of ME initially....if only I had known to rest instead of to being advised to exercise as much as possible that might still be the case. Or I might even have improved somewhat, or even be leading a somewhat normal healthy life. Read on...
 
See some of the many videos on M.E. created by Jodi Bassett (some of which also refer to her own case study in detail) on the Audio and Video page on the Hummingbirds' Foundation for M.E. website. This page also includes links to audio files by Jodi Bassett and radio interviews about M.E. by Jodi Bassett.
 
 

Many more comments from individual M.E. sufferers about their lives etc. are also available in the following sections:

To read case studies of patients that have died as a result of M.E. See: The HFME M.E. memorial list.

See also The HFME 'CFS' misdiagnosed memorial list


NOTE: An * denotes that a name has been changed by request for the protection of privacy.

M.E. case studies in print

The following books all contain a large number of detailed case studies, and are also some of the very best books on M.E. available and so are highly recommended. See the book reviews section for more information.
  • The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Byron Hyde, M.D
  • Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson
  • Shattered: Life with ME by Lynn Michell
  • CFS: A Treatment Guide by Verillo and Gellman
  • Osler's Web by Hillary Johnson
  • In the Shadow of Memory and The Night Side: CFS and the Illness Experience by Floyd Skloot (which discuss the author's personal experiences of M.E. at length.)
  • The Doctor's Guide to CFS and Faces of CFS and A Parents Guide to CFIDS by David S. Bell MD. (Limited recommendation)
  • Lost Voices - The stories of families living with myalgic encephalomyelitis from IiME

Before reading this research/advocacy information given in the above links, as well as the links BELOW, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The
A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.

Case studies on other sites

These are links to further case studies from external websites:


Name: Ciara MacLaverty

Country: UK

Sick, Not Tired by Ciara MacLaverty

If the medical administrative staff are anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff have said to me: "I don’t really know very much about ME. You get tired a lot, don’t you?" No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.'

"No Total Rest" prescription is irrelevant to acute ME  by Ciara MacLaverty

It's been almost 20 years since I was first diagnosed with ME. The controversies surrounding causes and management of ME have raged through the decades but one fact remains constant: I took a virus in 1987 and I have never had a day's full health since then. My health appears to be permanently damaged. Ditto hundreds of thousands of sufferers.

I want to express my concerns over the widely touted dictate that "Total and/or Prolonged Rest is counter-productive in ME."  Even some of the moderates, who are firmly in the "ME is a serious physical illness" camp, can advocate this position. The "No Total Rest" (NTR) approach simply does not apply to my experience of severe ME.


Name: Sophia Mirza

Country: UK

The Story of Sophia and M.E. (from the Invest in M.E. website)

This is the heartbreaking story of Sophia, who through medical maltreatment and neglect, died of M.E. in 2005. This story illustrates all too tragically that M.E. is a serious neurological illness which is too often dismissed out of hand by doctors; sometimes with devastating consequences. An excerpt:


In  July the professionals returned  - as promised by the psychiatrist.  The police ‘smashed the door down’ and Sophia was forcibly removed and taken to a locked room within a ’secure’ ward of the mental hospital.  Despite the fact that she was bed-bound,  she did not have even basic nursing care; her temperature, pulse and blood pressure (which had been 80/60), were never taken, her bed was never made, she was never washed, her pressure areas were never attended to and her room and bathroom were never cleaned.  The nurse asked me to cook for her as the processed hospital food made her more ill.  Sophia also had to deal with many nurses constantly going into her room and talking to her.


The psychiatrist made it quite clear to Sophia’s solicitor that he would not release Sophia. However, two weeks later, after a tribunal lasting 8 hours, she was released. It was too late; the damage had been done.  Sophia relapsed, not to where she had been before, in spring 2003, but to a hell hole to which she had never been.  She never recovered from their maltreatment. She never stood a chance.

The result of the inquest into the death of Sophia Mirza (on Invest in ME)

Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006 [On the inquest into the death or Sophia Mirza.]

'General Medical Council’s “duties of a doctor” (2001) state that doctors must make the care of the patient their first concern and they must not ‘give or recommend to patients any investigation or treatment which (they) know is not in their best interests, nor withhold appropriate treatments’.  This was acknowledged on 15th June 2006 by Dr Susan Benbow of The Royal College of Psychiatrists in the Daily Telegraph. The GMC stipulations are clear enough, so why then are sufferers from ME/CFS excluded from such protection?

There can be few people in the UK ME community who have not by now heard the results of the inquest into the tragic death from ME/CFS of 32 year-old Sophia Mirza, the beloved daughter of Criona Wilson from Brighton.  Although severely sick with medically diagnosed ME/CFS, Sophia was abused by the doctors charged with her care by being wrongly sectioned under the Mental Health Act. '

Civilization: Another word for barbarism by Gurli Bagnall 17 June, 2006 [On the inquest into the death or Sophia Mirza.]


Name: Lynn Gilderdale

Country: UK

'ME has taken over my daughter's life' Kay Gilderdale, whose 23-year-old daughter Lynn is severely ill with ME tells BBC News Online how the illness has affected her family over the last nine years.

"We get very very mad if we see anyone who doesn't believe ME is an illness, and if people just think its a very minor illness. "If I could bring people here each day and make them see what Lynn has put up with... It's taken over her whole life." When she came home, Lynn could do nothing for herself. She could not even speak.

Trapped in bed for 14 years

'Kay Gilderdale tells GILL SWAIN the heartrending story of her daughter, Lynn, 28, who was struck down by the illness 14 years ago... '

I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn By Gill Swain

Please note: These articles are very good, and describe severe ME very well. It really is a very heartrending story and your heart will go out to Lynn and her family.... Unfortunately however, all these articles are not good sources of facts about M.E. despite good intentions.

For example, the second article listed inapropriately refers to the illness as 'chronic fatigue' in the title, inaccurately refers to Sophia Mirza's death as being the first from ME, and also promotes AfME and Dr Macintyre (who are well known supporters of the psychiatric lobby) as being legitimate and credible authorities and advocates for ME sufferers - which they are NOT. Ignore these inaccuracies and this is a great article.

The third article is also very very good, but readers should ignore any suggestions that M.E. is caused by glandular fever or cannot be tested for, in the artucle or in the comments included by readers below. These problems aside this is one of the most amazing and compassionate and shocking M.E. articles ever written, and Gill Swain is to be commended highly for it.

Also note that Lynn Gilderdale died in 2009. See the 25% M.E. Group site for details.


Name: Suzy

Country: UK

Suzy's story (on Invest in M.E.)

'Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.

The months dragged by.  For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement. By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.'


Name: Shannon

Country: UK

Shannon's Story (on Invest in ME)

I'm 24 years old, with skin milk-white from staying indoors. I've been house bound and mostly bedridden for six years.

Even my dad doesn't believe me at times that I'm really sick. Or he latches on to some far-fetched explanation of things, or wacky new treatments. If a doctor tells him it's psychological, he's believed the doctor over me. I hate that. Always I have to defend myself.

My mother died, and there is no one to take care of me. I am very weak, and it's difficult to get food, and I can't eat processed food because of my sensitivities. I was wishing today that someone would walk into the room where I was lying on the floor, helpless and out of it, and bring me a warm bowl of chicken soup. It was five hours before I could get up and open a can of tuna. At last count, I had gone 16 days without bathing.


Name: Stephen Paganetti

Country: UK

Sara Bass's testimony to the CFS Coordinating Committee on Stephen Paganetti's bedridden case.  


Name: Emma

Country: UK

[from Invest in ME]

‘This was the second paediatrician I had spoken to, the first wanted to repeat all the blood tests from a few weeks before, and was suggesting anti-depressants and a hospital stay before he'd even seen her. Emma was now so noise sensitive that I couldn't listen to the radio at home and the thrice-daily playtime at the nearby school would reduce her to tears. She was also very light sensitive and had the curtains permanently drawn. Bright lights or sunshine made her to weep with pain. Hospital would be agonising....'


Name: Ean Proctor

Country: UK

The Ean Proctor Story

In this “care”, the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool. The terrified child was also dragged out of the hospital ward and taken on a ghost train because psychiatrists were determined to prove that he could speak and they believed he would cry out in fear and panic and this would prove them right. Another part of this “care” included keeping the boy alone in a side-ward and leaving him intentionally unattended for over seven hours at a time with no means of communication because the call bell had been deliberately disconnected.

Ean's Story by Barbara Proctor, Ean's mother

An excerpt: 'On Monday 23rd May, two social workers arrived on our doorstep and took Ean away under a "Place of Safety Order". We were not even allowed to go with Ean in the ambulance. Ean was to be in the joint care of Dr C, a psychiatrist, and Dr B, a paediatrician, at the local hospital.

During the whole time Ean was in care, we were allowed to see him for only half an hour a day. He was alone in a ward, could not move, could not speak, and had no way of getting help if he needed it. He had been told that he had been taken away from us because he was dying. Ean had to endure the most horrific mental torture. One day the psychiatrist told him "There is nothing wrong with you.... if you don't talk next week, you will be better off in Ballamona [the mental home]". Ean was so scared, he wet himself as he sat in his wheelchair. The Staff nurse would say to him that if he didn't speak or walk "He would grow old in his wheelchair, stay in the hospital for ever, and never go home again". One night, Rob and I found him very distressed in his wheelchair, all alone. He had wet himself, as no-one had asked him if he wanted to go to the toilet, at lunchtime... It was now 7.40 pm. Friday was the day Ean lived in dread of. This was the day the physiotherapists would take him off to the remedial pool.

(Note that this site is not recommended in any way by the HFME.)

Ean's case is also mentioned in:

To set the record straight about Ean Proctor from the Isle of Man By Eileen Marshall and Margaret Williams, 20th July, 2005

Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment by Professor Malcolm Hooper & Horace Reid, January 2006

Another Meadow? by Eileen Marshall and Margaret Williams, 16th July 2005

Considerations of some issues relating to the published views of Psychiatrists of the Wessely School in relation to their beliefs about the nature, cause and treatment of myalgic encephalomyelitis (ME) by Margaret Williams et al. 16th January 2003


Name: Laura Hillenbrand

Country: USA

Illness made Laura Hillenbrand a long shot to finish the acclaimed book Seabiscuit By Sally Jacobs

A Sudden Illness -- How My Life Changed by Laura Hillenbrand

Laura Hillenbrand Surmounted Illness To Cross the Finish Line With 'Seabiscuit'


Name: Ingeborg

Country: The Netherlands

Ingeborg has very severe Myalgic Encephalomyelitis. Read her story.


Name: Douglas

Country: UK

[from Invest in ME]

'I thought I'd give you an interesting update about what's been going on when I've visited the local ME centre. Last time I was at the centre the doctor was concerned about my heart rate, and thought I may have an underlying condition. He referred me back to my GP, and wrote a letter to ask the GP do some tests to rule out any heart condition. He said I would be seen again in three months for treatment for ME.'


Name: Casey Fero

Country: USA

Testimony about Casey to CFSAC

On July 4, 2005, sometime between 2:30 am when his mother kissed him good night, and 6:30 am when his father came downstairs, Casey Fero died in his sleep.  His heart simply stopped. Casey Fero was 23...

From Pat Fero on her son Casey

It has been 12 weeks since my son Casey died. Notes and e mails continue to arrive at my home and at the office of the WI CFS ASSN. The support from many diverse people and groups has helped me and my family work through these difficult times.


Name: Hillary Johnson

Country: USA

HILLARY JOHNSON TALKS ABOUT CHRONIC FATIGUE SYNDROME AND HER NEW BOOK, OSLER'S WEB


A Personal Story - Sheila Barry (on Invest in M.E.)

'I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions. Psychiatrists classify a condition when a number of them are able to agree a criteria. They have no diagnostic tests. It is simply a matter of opinion.

I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter [a ME sufferer,] chose to end her life.'


Name: [Name withheld]

Country: UK

[Online]

'During his time in hospital all the other young people on the ward were continually told that my son could speak, and could move, but was choosing not to. They would frequently ask me why he chose not to speak. The nurses would say, "It's a lovely day, what a pity you're not out there", as though he could be if he wished. Day after day he was treated this way.

He was admitted to the hospital on 14 December 2000, initially for a three-month assessment. At the family meeting on 25 January 2001 it was stated that the final review would be on March 15 2001 and if there was no progress towards free communication a discharge plan would be agreed with the family. My son's lack of speech was clearly seen as the most serious of his disabilities.

An action plan, such as the one attached, is not respectful of the patient, could not be discussed with the patient, or carried out in partnership. It is not good practice to cause patients "a lot of pain", I question whether it is ethical, indeed it may be unlawful.....'


From the 25% Group, A carer's story by Greg Crowhurst (Commenting on the MRC report.)

'I have got about an hour. It’s an early Thursday morning and a world away people are going to work, grabbing breakfast, starting a new day. My wife Linda is asleep. In about an hour I will do my best to help ease her agony. For if the last eleven years are anything to go by she will awaken in a darkened room paralysed and totally in pain. Her face will be drawn and palsied down the left side. She will shake and gasp in awful thirst. Very gently, in whispers - for any noise is devastating, I will try to help her. I will probably get it wrong because even now, after eleven years of it, I don’t really understand the full extent of her suffering; how even the softest, most loving touch hurts.

Did I say eleven years? That’s a lot of mornings. That’s a lot of time with no treatment, no relief. That’s a big chunk out of a career. That’s a quite a bit of time surviving on benefits, living in isolation, fighting for just to be acknowledged for God’s sake. Somewhere out there a whole bunch of psychiatrists are probably climbing into their BMW Series 5’s as they too begin this new day. Me and Linda, we’ve spent the last eleven years surviving; because that’s the best you can do with Severe ME at the moment.

Professor This and That meanwhile have spent the time building a nice little career thank you very much...'


Name: S.M.

Country: UK

(from letters to RiME)

'Over 13 years ago my brother contracted an unknown illness rendering him bed bound and hospitalised at the age of 18. In hospital he underwent tests and was put on a program of graded exercise which left him flat out, bedridden, hardly able to speak or feed himself and unbelievably in the geriatric ward, a totally unsatisfactory and inhumane treatment...' 


Name: J.W.

Country: UK

(from the RiME website)

I am writing in great despair. 1 have been a M.E sufferer (Myalgic Encephalomyelitis) now for 14 years. I have had this since the age of 16, I am now 30 and have had my life ruined and taken away by this very misunderstood illness. I live day to day trying to cope with an array of symptoms and as there are no doctors who really know how to help or even all the symptoms you can suffer from.

1 know there are many people worse off than myself, but that does not give the Government the right to make no effort in funding any sort of medical research, to find a cure for M.E sufferers and for us to be treated like second class malingerers by the doctors We all need help to find a cure for this covered up illness now. Why should we have to suffer in silence alone'

Many M.E. sufferers have taken their own lives through sheer despair and I have the lost a wonderful friend to this and do not want to lose any more before you realise how awful this illness is. I suffer from breathing difficulties, heart irregularities, confusion, pain, muscle weakness, head pain, swollen lymph nodes, fevers, sickness, dizziness, severe unreality, shaking, have to use a wheelchair when I'm out and am pretty much housebound, This is some of the symptoms I suffer I want medical funding for research. It is my right and I want it before the next 15 years of my life are ruined.


Name: M.S.

Country: UK

(from letters to RiME)

When I contracted ME, I was a young student. Doctors were unable to diagnose or treat the illness but they maintained a professional interest, gave me (the patient) the benefit of the doubt, and were interested in learning more about ME.

The power and influence of the psychiatric lobby changed all this In recent times, I have either been treated as a psychiatric case who needs to be humoured or a difficult case that dues not fit into any medical category and which can be ignored. I have been put on Graded exercise and CBT Programs which have led to a deterioration in my health.

Psychiatric bias and manipulation of the facts has adversely-affected the way that I and others are treated by GP's, Consultants, employers and family, even.


Name: A H Fife

Country: UK

(from letters to RiME)

'Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.)...'


Name: [Name Supplied]

Country: UK

[Online]

"I was in the prime of my young life when I became ill. I had a successful career, relationship, active social and sporting life. It was all lost at a promising point in my life. Now over 14 years later I am still too ill to regain any of it.

I was referred to take part in the CFS clinical trial (they didn’t believe in the term ME, or that a distinct illness of ME existed) at Withington hospital in the early 1990’s after I had experienced almost two years of continuing ill health following a sudden viral illness.

[...]...their ‘treatment’ left me worse and more debilitated than I was before I entered the study! I felt there was no concern for me as a human being and there was no further contact with me to see how I was doing, except a request some years later for me to take part in further research, which as you can imagine I quickly declined!

After this I began to hear from others their experiences of this same research team and became increasingly alarmed about what was occurring. I began to see many flaws in their trial. People enrolled in the trial were allowed to continue to take other treatments and to have other therapies, such as acupuncture and homeopathy independently, during the trial period. The doctors knew about the patients having other treatments independently during the trial period and yet these patients still remained in and were part of the trial and its results.

This negates the whole purpose and the validity of a randomised, double-blind, placebo controlled trial and therefore the results. I am therefore astonished when I see that the results have been published in a reputable journal * and are frequently quoted in other work....'


Betrayal of the Severely Ill? Appendix 12: Letter from QLD ME/CFS Society to the RACP Working Group

‘A young woman who had been hospitalised due to the severity of her illness (she was having difficulty remaining upright due to her blood pressure collapsing) was removed to a psychiatric ward against the wishes of her treating physician. The physician was actually threatened with the loss of his visiting rights to the hospital if he did not consent to the move. The young woman had a copy of the draft placed in her face with the "exercise bits" highlighted. She was told by an infectious diseases physician that she could expect to faint several times, but it was only through exercising that she would get better.

The staff have been saying to her that she is just a "naughty girl" (she's 26 and a qualified physiotherapist) and "doesn't want to get better". Her mother is currently sleeping on the floor of her room to prevent psychiatric patients invading it at night, or staff members verbally criticising her or attempting to make her do physical tasks beyond her capacity.’


From the 25% Group, by an anonymous sufferer:

‘Governments, researchers and the medical profession in general need to realise that it is not just about saving lives but quality of life and that with severe ME, this quality is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years; sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it’s got to get better soon even after years of disappointments.

Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when I received 25% burns but with ME this form of "treatment" only results in deterioration rather than increasing your capacity! If only that was the answer I’d never have been in this hell. I’d have been well years ago enjoying the wonderful life I led before ME.’


Parents of sick child falsely accused of Munchausen Syndrome by Proxy (MSBP). 


Debra Potter Story

Debra Potter made a good living selling disability coverage. But like many working Americans, she learned the hard way that federal law now favors insurers.


The National CFIDS Association Memorial List for those who have died from the illness 

By compiling this list, we hope to make people more fully aware of the seriousness of CFIDS/ME. Medical communities, media and governments understand neither how debilitating this illness is nor how those with it suffer. The United States National Institutes of Heath are not keeping track of the morbidity and mortality rates, although many have died and many more will if more is not done. The Centers for Disease Control and Prevention claim there have not been deaths reported to them. If you know of a friend or family member who had CFIDS/ME and has passed on, please help us in our quest to document the seriousness of this illness.

(Note that this site is not supported by the HFME and that this is not a pure M.E memorial list.)

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Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95