Abstract: At the 1998 M.E. /CFS conference in Australia, both Myalgic Encephalomyelitis and Chronic Fatigue Syndrome were used to describe a chronic illness. This paper is a discussion on the similarities and differences in these two terms that may lead to scientific difficulties. The author suggests that the definitional criteria and epidemic history of Myalgic Encephalomyelitis (M.E.) and the inclusion criteria are significantly different from the CDC definitions and history. The three typical phases of M.E. are discussed. A brief review of some of the known deaths in phase 2 of M.E. are also mentioned.

 

Probably the best descriptive definition of M.E. is found in Ramsay's book mentioned earlierⁱ or in the Doctoral Thesis of Dr. Andrew Wallace,^vii a Scottish physician who immigrated to Adelaide, Australia. 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. The Akureyri epidemic involved at least 7 prepubertal children in Friedrikshavn who developed M.E. followed by Parkinson-like illness and died. ^x Documented deaths in sporadic cases of M.E. are known, but it is my experience that treating physicians often become vitriolic when the deaths are attributed to M.E by the families of the deceased. M.E. and CFS may be the only illnesses in history from which some physicians believe the patient is invulnerable to death.

 

Phase #2: Principal Illness: The acute phase of the principal illness then appeared in these patients. They complained of limb, back and neck pain, paraesthesiae and blurring vision. Muscle cramps, spasms and twitching and deep muscle tenderness were common but the dominant feature was muscle and brain fatigability and irritability even after a minimal degree of physical or intellectual exertion. Evidence of autonomic nervous system involvement was present in many cases. Another major component was cerebral involvement, which usually took the form of impairment of memory, concentration and emotional response. Seizure-like phenomena are not unusual. Many of these Royal Free patients had abnormal EEGs during the phase #2 period. The illness was considered consistent with an encephalomyelitis. The patients often complain of (a) abnormal cardiac rhythm, or (b) unusual cardiac movement. However, when examined by routine ECG, pathological features are rarely observed. In some cases the cardiac symptoms actually represent pectoral or other muscle spasm. In others, orthostatic cardiac irregularities that are not necessarily observed in supine ECG examination may be the cause. Diaphragmatic or counter-peristaltic abnormalities may also cause these sometimes pseudo-cardiac symptoms. During this phase the patient often appears quite ill. This phase can persist for weeks, months, or, in severe cases, one or two years. In a rare small percentage of individuals, phase #2 can persist for years or even permanently. This is unusual. In general, the severity of the complaints, particularly the abnormal muscle movements, seizure phenomena and severe headaches tend to taper off. Autonomic dysfunction, when it is of significant importance, rarely improves. As noted, infrequently phase #2 can become chronic. Very infrequent deaths have been known to occur in this phase and usually are represented by two different pathophysiologies. . Dr. John Richardson of Newcastle upon Tyne, U.K. has noted deaths in professional athletes who return to active professional sports, "to work off the flu". Cause of death has been attributed to orthostatic cardiac irregularity. It is also during this phase that CNS deaths occurred in the Cumberland Epidemic, in the Akureyri epidemic, and in one of the Mediterranean epidemics.

*O* 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.

We are grateful for the help of William Young, who began the list and who compiled a great number of names on this list.  Many of these people died of secondary illnesses attributed to CFIDS/ME. Medical doctors have pointed out that excruciating pain is the foremost reason that others have chosen to take their own lives.  The majority of these patients did not have the medical care they needed; they suffered unremitting pain with little hope of relief or comfort. We acknowledge their suffering and hope that they have not died in vain.

There is a full spectrum of disease severity, with some patients being mildly affected while others are in wheelchairs or completely bedridden. The clinical outcome of CFS usually takes one of the three courses: recovery/improvement, relapsing/remitting course, and permanent incapacity or progressive deterioration of symptoms. Studies have shown that recovery is uncommon, with only 4% of patients recovering and 39% showing some symptom improvement after four years.

The quality of life may be particularly and uniquely disrupted in CFS and patients have related profound and multiple losses, including loss of jobs, income, relationships, careers, financial security. Activity is reduced to basic survival needs for some patients. Australian researchers found that patients with CFS had more dysfunction than those with multiple sclerosis, and that the degree of impairment is more extreme than in end-stage renal disease and heart disease, and that only in terminally ill cancer and stroke patients was the sickness impact profile (SIP) greater than in CFS. CFS usually affects people in the prime of their life and, consequently, has a significant impact on the nation's productivity. Studies on the burden of disease and cost to society have shown a staggering social and economic impact, based on cost of treatment, loss of earnings and tax revenue and the cost of federal and state benefits.

This kind of heart murmur occurs when one of the valves in the heart (the mitral valve, which is on the left side of the heart) collapses to a certain degree (which varies from person to person). In minor cases, mitral valve prolapse can cause little more than a distinctive clicking sound heard when listening through a stethoscope. But in severe cases, mitral valve prolapse can cause chest pain, fatigue, heart arrhythmias -- typically, causing the heart to beat too fast -- or even sudden death.

It is not known why heart problems develop in some CFS patients, and many U.S. researchers doubt that they are connected to CFS. But Dr. Byron Hyde, who studies CFS in Toronto, commented at a 1991 research conference that the heart problems associated with CFS are "major." Dr. Hyde also pointed out that no one in North America is studying this potentially life-threatening aspect of the disease, a statement which is still true today.

Handbook of Chronic Fatigue Syndrome" by Leonard Jason, Patricia Fennel and Renee Taylor

Viral Isolation from Brain in Myalgic Encephalomyelitis (A Case Report) J. Richardson J of Chronic Fatigue Syndrome, Vol. 9(3/4) 2001, pp. 15-19 J. Richardson is affiliated with Newcastle Research Group, Belle Vue, Grange Road, Ryton, Tyne & Wear, NE40 3LU, England.

Much has been written and debated about this condition, but this is a report on a case which sadly came to autopsy.

Click here to read on.

[Copies of the article are available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: mailto:getinfo@haworthpressinc.com Website: http://www.HaworthPress.com ] © 2001 by The Haworth Press, Inc. All rights reserved.

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*O* 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 doctors, social workers, chief executives, courts and others  were well informed in writing, by me, of all the events that were about to unfold in early 2003, and yet, they knowingly colluded in sectioning Sophia, simply because she exercised her right not to go into a particular ME Clinic. This is being done all the time to young people behind the closed doors of Family Courts; blaming families and then tearing them apart.  The children and their families have no redress*.

I have never in my life known a braver or more courageous person than Sophia.  She was an inspiration to us all.  I do believe that every parent would say exactly the same about their child who is suffering from ME.  It was Sophia’s wish that her living and suffering should not be in vain, but that it would help others.  Only time will tell.

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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.'

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*O* Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006

'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. '

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

'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.'

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*O* 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 [a ME sufferer,] chose to end her life.' [Click on the link in the title to read the entire article]

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Issues related to severe ME and the involvement of the UK Psychiatric lobby By Greg Crowhurst, September 3rd 2005

'There are an estimated 62,500 people with severe ME /CFS in the UK receiving "seriously inadequate health care" according to the Chief Medical Officer (DH 2002) [3]. Quality of life tests indicate that people with severe ME/CFS feel similar to patients with AIDS two months before death in their ability to do things. Australian researchers found that patients with severe ME/CFS experience more dysfunction than those with Multiple Sclerosis, that in severe ME/CFS the degree of impairment is more extreme than in end-stage renal disease and heart disease and that only in terminally ill cancer and stroke patients is the sickness impact profile greater than in severe ME/CFS. [4]

Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/CFS is fatal [5].

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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.

I think providing updates on the Universal Access ME-CFS specimen bank might be something I can do. A number of people have contacted me about how to get blood/tissues/ whole bodies into this bank. With this CRUD illness, some days feel like it could not possibly get any worse and so one thinks of a body useless except if donated to "science."

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Brochure for the Casey Fero ME/CFS Tissue and Blood Bank (PDF)

As of September 8th, 2005, this additional information was confirmed by the Fero's:

The University of Wisconsin forensic pathologist found that our son Casey died of myocarditis, that is, he had heart damage, inflammation and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset. The pathologist was "shocked" at this finding.  I am not shocked considering Casey's long standing CFS and the research in this area.

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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...

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The Alison Hunter Memorial Foundation

The Alison Hunter Memorial Foundation was established in 1998 through the initiative of the Public Interest Advocacy Centre, and The Public Interest  Law  Clearing House as a project of the law firm Minter Ellison.

The Foundation is an enduring memorial to Alison Hunter and all those whose  lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from  complications arising from ME/CFS which included seizures, paralysis, gastrointestinal paresis and overwhelming infection resembling Behcets Disease.   Alison courageously fought ME/CFS for ten years and was an unstinting  advocate for young people.

Alison was the founding president of ME Young Adults (MEYA), established in 1992 at Royal North Shore Hospital, Sydney.

The Alison Hunter Memorial Foundation is a non-profit institution. The Foundation works independently in a spirit of support and cooperation with all researchers, institutions and ME/CFS societies to advance scientific knowledge and medical care.

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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.

 

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BEFORE THE LIGHT DIES By Gurli Bagnall, October 2005.

 

With the production of more and more psychiatric drugs, each supposedly better than the last, mental disorders should now only be found in the history books. But they are not. Far from it. We now have an epidemic of psychiatric illnesses such as we have never seen before. And what about ME? What about the Gulf War Syndrome? Given that the mountain of evidence pointing to these being organic diseases is ignored, and given that the victims of them are swept under the psychiatric carpet to be stomped on, you do not need to be a rocket scientist to realize that there is a massive cover-up afoot. It boils down to the fact that, despite the billions thrown at research every year, medical science has barely scratched the surface of disease. So who benefits from those billions?