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.

The HFME memorial lists: Introduction

The Hummingbirds' Foundation for M.E. is setting up two new memorial pages. One for M.E. patients and one for all those patients misdiagnosed with 'CFS' who have diseases other than M.E.

 

Background information:

It has been known for many decades that M.E. is a neurological disease which can be fatal. Dr Elizabeth Dowsett estimates the death rate for M.E. to be roughly 3%. There are deaths due to cardiac failure, brain death, tumours, and liver failure. All kinds of deaths. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness.

Dr. Dowsett explains that although these deaths are due to M.E., they are disassociated from it, and are almost never recorded in statistics as deaths from M.E.

Most deaths from M.E. occur without the fact ever being officially recorded or acknowledged. It is also true that only a very small number of M.E. deaths are given any sort of media attention. Deaths from M.E. are largely hidden from the public awareness, and the public continues to be told that M.E. is a trivial and short-term illness involving fatigue, which is also correctly referred to as 'CFS' and is of course never fatal.

The misdiagnosis of ‘CFS’ can also cause death.

Every diagnosis of 'CFS' is a misdiagnosis. Many hundreds of thousands of patients have been misdiagnosed with 'CFS' and so denied an appropriate diagnosis and treatment. For some of these patients, this lack of appropriate care can lead to death. For example, cancer patients are sometimes misdiagnosed with 'CFS' instead of being given the cancer diagnosis and treatments they need, or these treatments are given far too late to save the persons' life. This fact is also only very rarely discussed, and never in the mainstream media.

The ‘CFS’ scam, the cover-up of the facts of M.E. and the widespread abuse of M.E. patients are ruining countless lives, and are also causing many needless deaths. It is important that the M.E. community (and the formerly 'CFS' misdiagnosed community) does what it can to highlight these deaths, in order to stop the same thing happening to others and so to make these often avoidable tragic deaths count for something.

We would also like to pay tribute to those who have died, and to make sure these individuals are not forgotten.  At the very least, not by us.

 

The Hummingbirds' Foundation for M.E. is setting up two new memorial pages. One for M.E. patients and one for all those patients misdiagnosed with 'CFS' who have diseases other than M.E.  If you are a friend or family member of someone who has died, please submit their story to us. Brief stories or detailed ones, it is up to you. Deaths may be very recent or have occurred long ago.

If you would like a friend or family member to be included in this memorial list, please email HFME with the appropriate details.

The memorial lists, when finalised, will be made public along with a new paper looking at the topic of deaths from M.E.

 

Notes:

1. If you are reading this thinking 'what if your life has been ruined by a 'CFS' misidgnosis or by having M.E. and being mistreated and abused, but it hasn't actually killed you?' or 'What about writing about the importance of a correct early diagnosis and treatment of M.E.?' then please still submit your story and it can be used on the "case studies' page instead. These stories are also very important. We need as many of them as possible to counter all those bogus status-quo-supporting 'ME/CFS' or 'CFS' 'miracle cure' stories out there!

2. Causes of death including euthanasia and suicide are not excluded. Almost always the appalling mistreatment of M.E. patients and those given a 'CFS' misdiagnosis has played a significant part in these deaths. Please send these tragic stories also.

3. Please note that the M.E. memorial list will be a M.E. list (not a 'CFIDS' or 'CFS' or 'ME/CFS' list).

4. Causes of death in patients misdiagnosed with 'CFS' may include cancer, severe vitamin deficiency, thyroid or adrenal diseases, brain tumours, renal or liver disease, depression, PTSD and other mental illnesses (suicide) and so on: a vast array of unrelated conditions. The story of any patient (mis)diagnosed with 'CFS' that died partly or wholly as a result of this lack of appropriate medical care may be submitted by their friends and family etc.

The HFME feels there is a real need for both of these lists.


Best wishes everyone,
Jodi Bassett
September 2009

--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis
www.hfme.org

I have some M.E. patients with a circulating red blood cell volume less than 50% of expected and a very large number with the range of 60% to 70%. What this test means is that blood is pooling somewhere in the body and that this blood is probably not available for the brain. When blood flow to the heart decreases sufficiently, the organism has an increased risk of death. Accordingly, the human body operates in part with pressoreceptors that protect and maintain heart blood supply. When blood flow decreases, pressoreceptors decrease blood flow to noncardiac organs and shunt blood to the heart to maintain life. This, of course, robs those areas of the body that are not essential for maintaining life and means the brain, muscles, and peripheral circulation are placed in physiological difficulty’
Dr Byron Hyde

After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other "end organs" such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilization, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure). It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects. It is an additional and potentially avoidable factor.
Dr Elizabeth Dowsett 

ME is a multi-system disorder of extraordinarily incapacitating dimensions from which complete recovery is unlikely. It can be a devastating condition, with some patients being unable to speak or swallow and needing to be tube-fed for years; at least 25% of sufferers are severely affected, yet patients are accused of malingering. On the advice of Wessely School psychiatrists, state benefits are refused or withdrawn, even in cases of ME where they have been awarded for life. Many with ME commit suicide: in the UK, figures are said to run at one ME suicide per month. This is not because patients are psychiatrically ill: it is because they are completely unable to look after themselves and are too sick to survive without the necessary support, both medical and financial.
Margaret Williams

 
Probably the best descriptive definition of M.E. is found in Ramsay's book mentioned earlier or in the Doctoral Thesis of Dr. Andrew Wallace. Wallace's thesis discusses an epidemic in Cumberland in Northern England. It is unfortunate that more M.E. physicians have not read it. This thesis is important since it not only represents one of the best descriptions of the epidemic M.E. disease but also documents deaths associated with this illness. The deaths although few in number are important since not only do they give us a useful pathological insight, they also underline the potential and usually unrecognized severity of M.E. Documented deaths have occurred in several M.E. epidemics, but are best documented in the Cumberland epidemic and were well known in the Akureyri epidemic. All of these deaths involved CNS injury.
Dr Byron Hyde

I am only able to briefly scan messages that come to my desk top and I have just picked up on the concern some people feel about publicizing ME suicides.  Two of the reasons given are the depressing effect on other sufferers,  and the medical profession saying, "Aha!  I told you so!  This PROVES the patient was clinically depressed." The trouble is, how can the severity of the disease be publicized unless events such as these are published?  For decades we have tiptoed about trying not to step on doctors' sensitive egos and where did it get us? It got us more of the same  -  abuse piled on top of abuse. The question that needs asking is:  Under normal circumstances, would this person have taken his/her own life?  In most instances the answer is, no. For the ME sufferer who is medically abused and no longer has the strength to battle for his or her right to exist, what options does s/he have?
     It can be likened to the planes flying into the twin towers in the States. People on the ground watched aghast as others, hundreds of metres above the street, jumped to certain death in order to escape an even worse death in a raging inferno.  I do not exaggerate when I say that the ME patient is in a similar situation; a large section of the medical profession stokes that raging inferno with every sneering misdiagnosis it pronounces.  In this instance, they are the terrorists and torturers, and when the few options available to the ME sufferer have been used up, s/he has nowhere else to go so s/he jumps to escape the inferno. Perhaps it is time to refer to ME suicides by another name.  For example, iatrogenic death (ID).  Or to make sure no one misunderstands, Doctor Induced Death (DID) . Or the most accurate description of all:  Death by Medical Murder (DbMM).
Gurli Bagnall

The HFME M.E. memorial list

Memorial for Gurli Bagnall - New Zealand

Gurli Bagnall, a long-term M.E. advocate and patient, died on Friday August 17th 2011.

Gurli Bagnall was a tireless campaigner for M.E. patients, non-M.E. patients misdiagnosed as 'CFS' and patients that had been harmed by 'benzo' drugs. She was also a talented writer, novelist and jewellery designer. She will be much missed by her family and also by many of those patients and fellow advocates that she was in contact with and whose lives she touched.

To read some of Gurli's brilliant articles or view or contribute to the full Gurli Bagnall Memorial page, please click here.

Jodi Bassett


Memorial for Aylwin (Jennifer) Catchpole - Canada

Aylwin Catchpole (also known as Jennifer Catchpole), a long-term M.E. patient, died suddenly on Friday August 6th 2010.

Aylwin was a very special person to many of us and will be greatly missed.

Part of my memorial to Aylwin: "Aylwin, you were a member of the two M.E. chat groups I run and you were to a large extent the soul of both of them... I don't know how we'll go on without you, it just wont be the same. You were also so wise and kind, and giving of yourself....and funny! You were also so wonderful about M.E. politics and really 'got it' but also presented your views in such a kind and matter-of-fact and patient way. I'm sure everyone who knew you would agree, you were one in a million and such an amazing and inspiring and wonderful person. You continue to inspire me."

I have just set up an informal memorial page for Aylwin. This page has been created for her many friends and loved ones to pay tribute to her and just generally explain to the world how wonderful and amazing she was. (Her Facebook page is already a tribute page, but as many M.E.ites are too ill for Facebook and wanted to see photos of Aylwin and so on, a non-FB page seemed a good idea.)

A Kiva memorial has also been set up in Aylwin's name (for more information see Aylwin's memorial page on HFME). To make a donation please see: 'Aylwin's Memorial M.E. fund'

Rest in peace Aylwin.

Jodi Bassett


Memorial for Sharon O'Day- Australia

Sharon O'Day, a long-term M.E. patient, died suddenly in May 2010.

Sharon was a very kind and wise and special person and will be greatly missed by her friends and family.

You can laugh or you can cry (and cry and cry) when you have severe M.E. and for the most part, as much as anyone could, Sharon faced it all with a wry grin and some very black humour - as well as a lot of wisdom, dignity, intelligence, strength and an enormous amount of compassion and kindness for others in the same situation.

For many years Sharon had to cope with a severely disabling neurological, cardiac and metabolic disease as well as a system set up to discriminate against those with this particular disease and to ignore, ridicule and abuse them. She did an amazing job at coping with so much, a medal worthy job. (Helped especially by Brendan, as well as her late father). But at the same time I would hate to minimise the extreme amount of suffering both of these problems caused for Sharon, and how hard was her constant fight just to keep her head above water and just to get through each day. Sharon deserved so much more...

To read tributes to Sharon from some of her closest friends etc. please see the Sharon O'Day memorial page.

A Kiva memorial has also been set up in Sharon's name (for more information see Sharon's memorial page on HFME). To make a donation please see: 'Sharon O'Day's Memorial M.E. fund'

Rest in peace Sharon

Jodi Bassett


Memorial for Robert Klamer

Submitted to HFME September 2009 by Julia

What a good idea to have a memorial list of those who have died because of M.E. I would like to add my friend, Robert Klamer, who died 5 years ago at the age of 48, of pneumonia as a complication of severe M.E.  He contracted M.E. on 13th October 1989 (2 weeks before I did, though we didn't know each other at that time.)

His illness was always severe, but it deteriorated over the years and for the last several years of his life he lived in a nursing home.  By the last decade of his life he was completely bedbound and unable to sit up or to tolerate sunlight.  He became unable to speak or listen to speech, communicating with tiny notes which he would write painstakingly slowly over several days, unable to swallow solid food, and unable to have normal bowel movements (he had to have enemas). 

He was an inpatient at Barts at one point, but came out worse than he went in, as they thought his digestive problems were anorexia...

Robert was a lovely and very brilliant man who amazingly managed to retain his sense of humour and his sanity despite the appalling circumstances of his illness.  I miss him a lot.

I first met him when I was in a better phase - he needed to be fed then (couldn't lift his hands to his mouth) and I volunteered.  I couldn't believe how cheery and appreciative of help he was in a situation I personally would have found deeply humiliating.  But that was Robert.

Later he moved into a wheelchair accessible house I was living in at that  time and we got to know eachother pretty well.    He was psychologically a very strong man to be able to remain sane in his circumstances, as even his  GP acknowledged.  Robert had endless battles with medics, psychiatrists and  the benefits authorities and was still fighting to get his Disability Living Allowance restored when  he died - can you imagine?!

After his death I got to see copies of some of  the letters he'd had to write to officialdom and they were beautifully argued - despite it taking him sooo long to write them.  As a former social worker he wrote to officials as peers, and with incredible restraint and reasonableness.

You could say that Robert died of M.E. but I sometimes think he was murdered by an unfair, unjust system which still so often treats people with ME with  a serious lack of care and compassion.


Memorial for Sophia Mirza

Website for Sophia by her mother Criona

Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis.I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail. I have written to two Attorney Generals, numerous MPs and solicitors - again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is accountable.

I have therefore decided to publish all letters and communications appertaining to my daughter's ordeal  at the hands of the authorities, in an effort to ensure  that this should never happen again to someone  suffering from ME. I hope that the doctors and social workers involved  in my daughter's care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn lessons from what I have published and that no other person with ME will be treated so callously.

To read more about Sophia Mirza and the advocacy work of Criona Wilson please see the HFME Criona Wilson (mother of Sophia Mirza) page.

The result of the inquest into the death of Sophia Mirza  Unfortunately, it was decided by the pathologists that 'CFS is the modern name for M.E.' and so the term CFS was used for the inquest instead of the correct name of M.E. But despite that, this inquest shows very clearly that the name Myalgic Encephalomyelitis IS correct (as opposed to 'CFS' or Myalgic 'Encephalopathy') because there is clear evidence of inflammation of the spinal cord as well as that Myalgic Encephalomyelitis is a debilitating neurological illness which can sometimes be fatal, as it was for Sophia. Today, 13th June 2005, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England. The cause of death was stated as 'acute renal failure as a result of CFS' The pathologist also said - 'ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.'

Civilization: Another word for barbarism by Gurli Bagnall 17 June, 2006. At one time, sick people recuperated or convalesced.  Now according to a group of megalomaniacal brain-washers and self-elected "law-makers", they are expected to rehabilitate along with murderers, rapists and thieves.
    
Logically a sick person has to recover from his disease before he can "rehabilitate", but the above mentioned  gang have promoted the concept that certain illnesses are crimes. Commonly, the "offender" is sentenced to and  must engage in, graded exercise, and  adapt his thoughts and actions according to the  dictates of CBT.   If he cannot or will not do this, it is quite likely that the police will come to break down his front door so the men in white coats can take him away by force if necessary.
    
The law which states that a person can only be sectioned if he is a danger to himself and/or others, has been swept aside by the above mentioned self-serving monsters masquerading as doctors. Many will dismiss this as fanciful rubbish.  After all, we live in civilized societies where such things could never happen. Unfortunately, they can and they do. It happened to the recently deceased Sophia Mirza.'


Memorial for Carly by Shelia Barry

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

'You will have heard, or you will hear, from people who are very qualified to speak here - I regard myself as an ordinary mother but then nothing is ordinary if you have an ME sufferer in the family. So why have I travelled down from York to speak at this book launch. I am here to tell you of the devastating effect the situation outlined in this book, has on the lives of ME sufferers. Skewed clearly outlines the reasons why many of those suffering from ME feel alone, isolated and have little hope for the future.

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 chose to end her life.

Shortly after her death, I was told that she was the third ME sufferer in our area who had taken similar action. There seemed to be little information on this subject that many people prefer to ignore. I decided to attempt to set up a register of those ME sufferers in UK who had ended their life I also requested information from any sufferers who had felt suicidal.

The response, I am sorry to say was overwhelming. I was contacted by so many people who felt that they did not want to live for another 2 or 3 decades with such a terrible illness, and
with no hope of a cure. The reading was harrowing.

They talk of the isolation, the lack of understanding by the medical profession and the difficulty of applying for benefits. Those too severely affected to be able to leave their homes are left with no support and no treatment.

These people are in a state of despair. I do not believe that they are depressed - they are simply taking a realistic approach to their situation.'

[Note that in fact tests for M.E. do exist today, M.E. is no more difficult to confirm via testing than M.S. The problem is that most doctors are ignorant of these tests. Please see Testing for M.E.  for details.]


Memorial for Lynn Gilderdale

Information on Kay Gilderdale's fight for justice: Thankfully, Kay was found not guilty. A relief for all of us in the M.E. community, whose hearts have gone out to Kay form the first, and especially for those involved. Let us now hope the family can grieve for Lynn in private and in peace. If you'd like to read more about Kay and Lynn, a selection of the better articles is included below (in no particular order):


1. I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn, By Gill Swain, Last updated at 6:52 PM on 19th January 2010

See: http://www.dailymail.co.uk/health/article-1093016/Ive-seen-patients-paralysed-dying-Aids-victims-starving-children--Ive-seen-ill-Lynn.html


2. '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'

See: http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=393915&in_page_id=1774&in_a_source=


3. '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.

See: http://news.bbc.co.uk/1/hi/health/1234297.stm


4. 'I have never known anyone who exuded so much hope'

When Emily Levick developed ME, a blogging community of fellow sufferers became a lifeline. Her closest online friend was Lynn Gilderdale, whose mother was last week cleared of her attempted murder

http://www.guardian.co.uk/lifeandstyle/2010/feb/02/me-lynn-gilderdale-online


5. They told dying daughter she was lying, says ME mother Criona Wilson

See: http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece


6. Judge Mr Justice Bean said: "I do not normally comment on the verdicts of juries but in this case their decision, if I may say so, shows the common sense, decency and humanity which makes jury trials so important in a case of this kind. There is no dispute that you were a caring and loving mother and that you considered that you were acting in the best interests of your daughter. You had cared for her selflessly and with exemplary devotion for 17 years and never tired of that burden."

See: http://news.bbc.co.uk/2/hi/uk_news/england/sussex/8479211.stm


7. Lynn Gilderdale's moving account of why she decided to end her life (The Times, 26 January 2010): See:
http://www.timesonline.co.uk/tol/life_and_style/health/article7002306.ece


8. Devoted mother Kay Gilderdale should never have been prosecuted, says judge (The Times, 26 January 2010).

See: http://www.timesonline.co.uk/tol/news/uk/crime/article7002405.ece


9. Panorama

See: http://www.bbc.co.uk/iplayer/episode/b00qs930/Panorama_I_Helped_My_Daughter_Die/


Best wishes to all the Gilderdale family.

(Note that Lynn became paralysed after forced exercise therapy in hospital.

Please also note that these articles are very good overall. Unfortunately however, all these articles are not good sources of facts about M.E., despite very good intentions. The terms CFS and cf and M.E. are used interchangeably, one article 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. Readers should ignore any suggestions that M.E. is caused by glandular fever or cannot be tested for, in the article or in the comments included by readers below an article. Ignore these issues and these are some very solid articles.

Thanks to Dr John Greensmith for compliling/posting some of these links. Dr Greensmith has also commented that anyone wanting to send messages of support to the family can send them to him and he will pass them on.)

Note that Lynn was known to some in the online ME sufferers' community as Jessie Oliver


Memorial for Brynmor John

According to reports, UK MP Brynmor John had M.E. and was advised to ‘exercise himself back to fitness.' As a result of complying with this advice collapsed and died coming out of the House of Commons gym.

[If you have any further information on this case please submit it to HFME]

The HFME 'CFS' misdiagnosed memorial list

Memorial for Rachel Naclerio

Source: Sheffield Star newspaper, September 2009

A newlywed Sheffield woman tragically committed suicide, an inquest heard. Rachel Ann Naclerio, aged 30, had suffered from ill health since her late teens. But after getting married in Italy last August she had seemed to be coping well, the court heard, and she was planning a family with new husband Angelo. But in May her mum, Valerie Coulthard, discovered Rachel's body hanging in the young couple's Woodseats home.

Mrs Coulthard told the Sheffield inquest Rachel was often upset and frustrated by her illnesses which included chronic fatigue syndrome and anxiety and had to have regular physiotherapy sessions to reduce the pain from a misaligned spine.

Rachel often complained of "an anxious exam feeling", Mrs Coulthard explained, particularly after losing her job, but said organising her wedding last year had given her a sense of purpose, and she had seemed much better in recent months.

Rachel's husband Angelo told the court that although some days Rachel could not get out of bed, in the time before her death she had "not seemed particularly depressed at all". "She was looking forward to the future, to a normal happy life," he said. "Rachel and I wanted a baby but she had to be well enough first."

Tragically, Rachel had made appointments in London and Liverpool to receive treatment for her anxiety but never got to see the specialists. On the night before her death she told her mum on the phone she was "fed up".

The court heard that the next day, on May 12, while Angelo was at work, Mrs Coulthard visited the house on Haughton Road and found her daughter's hanged body, with a note telling her to call the police. Paramedics pronounced Rachel dead at the scene.

Deputy coroner Judith Naylor recorded a verdict that Rachel took her own life. "Rachel was part of a very loving relationship and a very supportive family," she said. "The tragedy for those who are left behind is no-one really understands why she took her life."

The contents of Rachel's suicide note were not disclosed. Rachel leaves husband Angelo, parents Michael and Valerie of Derriman Glen, Ecclesall, and sister Helen.

[If you have any further information on this case please submit it to HFME]

The HFME additional memorial list

Some cases are difficult to categorise reliably as either M.E., or non-M.E. illnesses misdiagnosed as 'CFS,' for various reasons. (These include lack of basic information, conflicting information on symptoms and/or terminology, and so on.)

Rather than risk classification errors, these memorials will be featured here in this third unclassified memorials section.


Memorial for Pamela Weston

Source: Times Online newspaper, September 2009

Personal account by Pamela Weston of her reasons for assisted suicide written before she died at the Dignitas clinic in Switzerland:

I'm writing this in September 2009. I have decided to go to the Dignitas Clinic in Switzerland to commit assisted suicide.

My story starts in August 1991. I was at a concert in the Albert Hall when a friend kissed me. Afterwards, she said she thought she might be going down with a cold. In fact, it was flu. She got better. I didn’t - perhaps because of my age. I was 70.

I was wretchedly ill for about a fortnight. I had a young doctor at the time who was very inexperienced and didn’t know what to do with me, so I changed to another at the Royal Free Hospital in London. He diagnosed Myalgic Encephalomyelitis (M.E.).

He prescribed injections once a month for six months. He said the drugs only suited some people and might not help. They didn’t.

My symptoms have been the same all along and have been getting worse all the time. I have very bad sneezing attacks every few days, which cause sinus problems and sore eyes. My head feels awful and I'm tired all the time. I feel dizzy when I stand. I have also had four heart attacks in the past two years.

I can no longer write professionally any more. There is nothing else I want to do. Nothing else I can do.

But I have had a happy life. I was born on 17 October 1921 in London and grew up loving music.

I did a two-year graduate course at the Royal Academy of Music before I managed to get a scholarship to the Guildhall School of Music. Thurston wasn’t on the staff but he lived in Barnes, in west London, and he agreed to teach me privately. Once he had to cut short a lesson to go to the Albert Hall to play in the BBC Symphony Orchestra for a Promenade Concert. He bundled me on to an open-top bus and gave me the rest of the lesson in the Artists’ room when we got there.

I loved the Proms. When I was a student I had a season ticket. We were living in Hampstead, north London, at the time. I used to cycle to the Albert Hall, stand through the concert then cycle all the way back. I began performing as a soloist, playing the Festival Hall several times before I finished my scholarship. I used to practice for six hours a day.

Two years after I left Guildhall, the Principal wrote and invited me to go back as a professor. I was a professor there for 17 years. From 1947, I performed as a soloist, playing concertos, broadcasting, especially on the BBC. I even played for the Prime Minister, Clement Attlee, in 10 Downing Street. I was very, very lucky.

The 10 years before I got M.E. were probably the most exciting time in my life. I found a new interest in research and writing books and articles about the clarinet. I had also developed my own teaching practice in a studio in my home.

I was traveling all over the world, researching my books, meeting great clarinet players, many of whom are still my friends today. I gave lectures and masterclasses, too. It went to Australasia, America, Italy, Germany, Russia, Iceland, Japan.

In 1984 I directed the only International Clarinet Congress ever held in England.

But M.E. put a stop to everything. In 1992, one year after I caught the virus, I was in Arizona doing a series of university lectures when my voice just gave out. I just couldn't get the words out.

I moved down to Hythe, in Kent, where I started a new course of drugs. But they did not help.

I wrote my last article - for the Clarinet and Saxophone Society of Great Britain - in January. It was up to my standards but I knew at that moment that I couldn’t go on.

Now, as I prepare to go to Switzerland, I know there is nothing else I want to do. I have started stumbling over my words and I am losing my appetite. I have to push myself to eat.

I don't have any family but I have some wonderful friends who support what I am doing.

If they could only get somebody to find a cure for M.E. I think a lot of people still see it as a psychological disease. In my case, it’s entirely physical. If I had had depression, I couldn’t have kept writing professionally for 18 years.

I'm happy to go to Dignitas, although it has been a terribly stressful process. There are a lot of legal and financial arrangements. Swiss law needs signed and witnessed affidavits to prove who I am and where I live. I need a letter from a doctor to say I am fit to fly. I’ve had four months of stress with all the things they require me to do, because they have to do it in stages.

I wouldn’t advise anyone to do what I am doing. But I'm certain that it is right for me.

I go to Zurich by air ambulance. Then I have to stay in a hotel for four days to make sure that I really do want to go ahead.

The Dignitas doctor has already said that I am a subject for euthanasia, so there’s no problem there. But Swiss law says the doctor has to see me personally on the first day, then I have to have a day by myself to be quite sure. Then the third day, she comes again and on the fourth day I receive the dose of barbiturates.

I hope assisted suicide will come to England. It could be abused but from my experience so far, it doesn’t seem to be abused in Switzerland. I’ve had a wonderful, happy life. Now it's over.

[Note that HFME very much DOES NOT support in any way the propaganda supporting and promoting 'chronic fatigue' charity AfME, unfortunately mentioned by Pamela in this article. AfME is not supported by the vast majority of the M.E. community. This group is not only not working in the best interests of patients, but is actually working directly against the best interests of patients. Note too that the symptoms listed here are not at all representative of the main/core symptoms caused by M.E., which is a primarily neurological disease. M.E. is not merely a fatiguing disorder.]

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Exciting book news!

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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