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 M.E. memorial list

The HFME is starting its own memorial list for those that have died from M.E.

This will be a M.E. list (not a 'CFIDS' or 'CFS' or 'ME/CFS' list). There is a real need for such a list.

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

(Causes of death including euthanasia and suicide are not exclusions. Please send these tragic stories also.)

For more information please see the The HFME M.E. memorial list page.

The HFME 'CFS' misdiagnosed memorial list

The HFME is starting its own memorial list for those that have died from illnesses misdiagnosed as 'CFS.'

Causes of death 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.

There is a real need for such a list.

Anyone who was misdiagnosed/diagnosed with 'CFS' instead of being given a correct diagnosis and who died partly or wholly as a result of this lack of appropriate medical care is eligible

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

For more information please see the The HFME M.E. memorial list page.

An important note:

Before reading the research/advocacy information given in 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.

M.E. fatalities

The HFME M.E. memorial list



The Late Effects Of M.E. - Can they be distinguished from the Post-Polio Syndrome?
by Dr Elizabeth Dowsett

FINAL STAGE (1,2) 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.


What is M.E.? Summary now includes a new one page 'M.E.: The basics facts' section added onto the end, which sums up 10 basic facts about M.E. in simple language, using bullet points. An excerpt:

"To keep you alive, just at the most basic level, your heart has to pump a certain amount of blood. Every time you want to do something (other than lie completely still), the amount of blood your heart needs to pump is increased. Every noise you hear, every word you speak, every second you move or sit upright, and every word you read and every thought you think... every little thing you do requires more blood to be pumped.
      The problem is that the hearts of people with M.E. only pump just enough for them to stay alive, with very little left over. This is why people with M.E. are so severely limited with physical, cognitive and orthostatic activity and sensory input.
      This cardiac insufficiency is why every conversation, light or noise, every brief walk or sit can affect M.E. patients so much, and make them so much more severely ill and disabled and cause such extreme extra suffering for so long afterward.
      If activity levels exceed cardiac output by even 1%, death occurs. So the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output, just for them to stay alive."


Why patients with severe M.E. are housebound and bedbound an excerpt:

So why are some severely affected M.E. patients housebound?

This is a question that severe M.E. patients are sometimes asked. The short answer to this question is:

  1. They are simply too ill and disabled to leave the house. This task is physically impossible for them due to the severity of their illness, or:
  2. They are physically able to leave the house, but it would be unwise for them to do so. In the short term this type of overexertion causes even more severe suffering than is already experienced daily (and may already be at an unbearable level). Even worse, this extreme additional loss of quality of life and ability can and does persist for a long time afterward.

    It is very common for severely affected patients to spend 2 months, 6 months, 12 months or even several YEARS or longer recovering from a hospital trip (etc.). For example, some patients still have not regained their previous very low-level of health 2 or 4 years after a trip to hospital. Some never do recover, and for some patients the overexertion is so severe as to be fatal.

Severe overexertion also ruins a patient’s chances for significant (or any) future recovery, and can cause permanent physical damage.

Severely affected M.E. patients may also sometimes be asked questions such as:

  • ‘Why are you bedbound, or wheelchair-bound?
  • ‘Why are you almost completely housebound or bedbound?’
  • ‘Why have you had to stop studying or working?’
  • ‘Why can’t you do all the tasks of daily living for yourself?’
  • ‘Why can’t you use the phone, or watch TV?

The answer to each of these questions is the same, it’s just a difference of degree. Some tasks are physically impossible for some sufferers, and others are possible but unwise. Sometimes tasks can be done in a controlled way, and limited as to frequency and/or duration. In other words, the activities need to be carefully ‘rationed.’

That is really all there is to it. A person with M.E. doesn’t do certain things they would like to do (or are desperate to do), because they are either too ill to do them, or because they would loose a big chunk of what little quality of life and ability to do things they have left for months or years or longer afterward, or lose any chance at significant recovery if they did them....or because they don’t want to be in agonising pain and then die because they pushed themselves to do something that their severely damaged bodies couldn’t cope with.

That is the short answer. If you’d like more detail on all of these points, and some more M.E.-specific medical information and treatment and management guidelines however, then please read on....

 

Excerpt 2:

Can severe M.E. patients really die just from being forced out of bed, or to leave the house etc.?

Of course I cannot show you a double blind controlled study where 25 severe M.E. patients were taken out of the house, and 25 were left at home to rest and show you how many of those moved from home died and how many didn’t. This subject is a difficult one to research (even if anyone in government hadn’t sold us out to the ‘CFS’ insurance scam and wasn’t obsessed with avoiding funding all new genuine M.E. research) as it involves making patients very much more ill or killing them, which is obviously something no ethical and knowledgeable researcher would want any involvement with. However, we can look at the facts of M.E., research, the experience of moderately ill patients and M.E. fatalities and draw some conclusions.

First off, we know that M.E. can be fatal. Deaths from M.E. are well documented. For example, M.E. expert Dr. Elizabeth Dowsett states, ��% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise’ (Dowsett & Ramsay et al. 1990) (Dowsett 2000, [Online]) (Dowsett a, [Online]). Deaths from severe CNS abnormalities are also described, as well as deaths caused by multiple organ failure or pancreatic failure. The term Myalgic Encephalomyelitis itself was created in UK in 1956 after doctors saw evidence of these abnormalities during autopsy on brains of patients who had died from M.E.

M.E. expert Dr Byron Hyde explains, ‘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’ (Hyde 2003, [Online]). This physiological difficulty is exacerbated by physical and mental activity and orthostatic stress.

Dr. Paul Cheney explains that when M.E. patients stand up, they are on the edge of organ failure as their cardiac output has dropped to the extremely low level of 3.7 litres per minute, a 50% drop from the normal output of 7 litres per minute. Without exception, says Cheney, every M.E. patient ‘is in heart failure.’

Cardiac and vascular abnormalities have been documented from the earliest outbreaks of M.E. to the present day. Recent research shows that mitochondrial and other dysfunction leads to diastolic dysfunction and reduced stroke volume/low cardiac output in M.E. – and that certain levels of orthostatic stress and physical and mental activity etc. exacerbate this cardiac insufficiency. Dr Cheney explained recently that because it takes more metabolic energy for the heart to relax and fill with blood than it does for it to squeeze and pump blood, the hearts of people with M.E. don’t fill with the proper amount of blood before they pump which is what causes the reduced cardiac output and many of the symptoms of M.E. (and much of the disability of M.E.). So the tachycardia – fast heart rate – often seen in M.E. in response to orthostatic stress and so on is actually compensating for low stroke volume to help increase cardiac output. The heart doesn’t fill with enough blood before each beat of the heart so it is forced to beat faster to try to make up some of the shortfall, but people with M.E. are still left with reduced cardiac output which leaves them very ill and disabled. If this problem is severe enough it can result in death (Cheney 2006, [video recording]).

As one M.E. advocate explains: ‘Cardiac output is sometimes too low to meet the demands of movement, and any attempt to exert oneself beyond one's own capacity for cardiac output - that is when demand exceeds cardiac capacity - would indeed result in death. Studies on dogs have shown that when the demands of the body exceed cardiac output by even 1%, the organism dies. M.E. patients [must] reduce demand and reduce their exertion level to stay within the bounds of their low cardiac output to stay alive’ (MESA, 2008, [Online]).

Also documented in M.E. are severely reduced blood flow to the brain 72 hours post-exertion, blood pressure readings as low as 80/40 and pulses as high as 150 at rest or after a period of time being upright, and so on. It is also worth noting that these abnormalities found on testing of M.E. patients never involve the most severely affected patients, who are too ill to be subjected to such tests.

Research has also proven that how much physical and cognitive overexertion a person can tolerate without serious damage depends on the severity of their illness. For example, we know that moderately affected patients can die from exercise sessions. For example, there is the case of the UK MP Brynmor John who had M.E. and was advised to ‘exercise himself back to fitness’ and who as a result of complying with this advice collapsed and died coming out of the House of Commons gym. Then there is the case of Sophia Mirza, in the UK who died from M.E. after being forced into inappropriate and abusive psychiatric care. Sophia had severe M.E. and was of course not capable of any exercise. Nonetheless, she was inappropriately removed from her home and given inappropriate care. She was cruelly killed by being forced into what to most people would have been only very minor or trivial exertions

Also, consider the fact that trauma victims are sometimes stopped from being moved (to another better equipped hospital for example), due to the fact that they are in shock and in a fragile state due to severe blood loss. How is this different to what is happening with the severe M.E. patient who only has 50% or less of the expected circulating blood volume? It isn’t. (Also, the trauma victim at least has most of this blood loss replaced by blood transfusion as soon as possible, which of course does NOT happen for the M.E. patient who must put up with this extremely low circulating blood volume for many YEARS at a time!) It seems clear that those with severe illnesses or injuries can indeed be severely affected and are at serious risk by what would be only very minor bodily stresses to other patients. The same is true of severe M.E. patients.

It also seems clear that if those with only moderate M.E. can and do die from the illness, then those with far more severe pathology and severe disability are at increased risk. If patients exceed cardiac output by even 1%, they die. There are severe M.E. patients who are so ill and have such poor cardiac output that they must spend all day in a dark, quiet room, alone, unmoving and unthinking, and yet even this level of rest is not enough for their bodies to cope with normal bodily processes without difficulty. For these patients, even being at complete rest counts as ‘overexertion’ and is too great a burden for the body to manage. Clearly for these patients, a trip out of the house or a brief period upright could very easily constitute the fatal 1% worth of overexertion. This is just simple logic.

Although death is a real possibility with a trip out of the house or other overexertion, most often death will not occur. A relapse is a certainty, however, if someone with severe M.E. is overexerted. This should be taken just as seriously as the possibility of death; the suffering caused by a relapse in severe M.E. patients can seem crueller than death.

While it maybe seem unkind to compare the experience of severe M.E. to death, can you imagine what it is like to be so ill and disabled, to be in what feels like 10/10 pain much of the time, and then to suddenly have your pain and suffering levels DOUBLE just because of one day’s or one week’s ‘activity.’

Can you imagine what it’s like to lose years of sacrifice and discipline, and slow improvement hard-won through intensive rest, in just one day or one week? To have all your ridiculously hard work suddenly count for absolutely nothing? To not only lose the small gains you made, but to end up even worse off than before you started?

Can you imagine being so severely ill and disabled that you had to spend 22 hours a day or more in a completely silent dark room, trying hard not to even think or move or feel very much lest you become far more ill. Imagine that all you had to look forward to, to focus on and cling to in your worst moments, was watching an hour of TV, listening to some quiet music occasionally, a half hour talking quietly to friends and family – or your own children – or using the computer (lying down) or a few minutes spent outside in the garden or playing with a beloved cat or dog.

Can you imagine losing the ability to do ANY of these things anymore suddenly, and having no respite or distraction from the agony-filled dark quiet room at all? Can you imagine this situation lasting months or even years, never knowing if things will ever even get back to how they used to be before the relapse, as bad as that was, let alone better?

M.E. can be more severe and disabling than almost any other disease there is. For those of us with severe M.E., the price that we pay for ‘activity’ is extreme and prolonged. Severe M.E. (which can be very severe indeed) can truly be a living death.

  • Of course this is only a brief sample of some of the M.E. research available and just some of the testable abnormalities that have been documented in M.E. This is in no way an exhaustive list. See What is Myalgic Encephalomyelitis? and Testing for M.E. for more information.

 

Excerpt 3:

What does 10/10 pain and suffering mean in this context?

A few years ago in The M.E. Ability Scale I wrote that 10/10 pain meant that ‘being eaten alive by a tiger wouldn’t hurt more than this does.’ I got a lot of (short) positive feedback on that comment from other very severe M.E. patients, saying that it was no exaggeration and they could relate very well to this description. I have experienced this on about a dozen occasions, which are burned into my memory. It is indescribable how severe the level of suffering and pain can be, at their worst. However it must be said that the more common 8/10 level pain is unbearable too, especially when it is very prolonged. I would also like to point out that I have severe M.E., but I am far from being the most severely affected.

The pain and suffering of M.E. have a number of different ‘flavours.’ The experience can be made up of severe nausea, vertigo and disequilibrium, cold and hot fevers or feeling both very cold and very hot at the same time, feeling ‘poisoned’ and very ill, pain in the glands and throat, muscle pain, twitching and uncontrollable spasms, difficulty breathing and breathlessness, cardiac pain and pressure and dysfunction that feels like a heart attack, a feeling of having a heart attack in every organ (caused by lack of blood flow to these organs), sensations of pain and terrible pressure in the brain and behind the eyes, stroke-like or coma-like episodes, abdominal pain and pain/discomfort following meals, seizures and ‘sensory storms’ (while conscious) and, lastly, an inability to remain conscious for more than a few minutes, or hours at a time or for more than a few hours each day in total. Any one of these problems can cause severe suffering. What makes severe M.E. so terrible is that the patient is almost always dealing with a large number of these horrific problems all at once.

More than 60 different symptoms of M.E. have been officially documented. Symptoms include:

Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness or paralysis, muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, and other visual and neurological disturbances, hyperacusis, tinnitus, , gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, paresthesias, polyneuropathy, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm and neurocognitive dysfunction including cognitive, motor and perceptual disturbances (Bassett, 2008, [Online]).

Dr Cheney writes, ��% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self’ (Hooper et al. 2001 [Online]). Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death. (Hooper & Marshall 2005a, [Online]). (See What is Myalgic Encephalomyelitis? for more information.) However, in M.E. this high level of suffering is not short term as it is for end-stage AIDS patients. The body has few limits on how bad pain and disability can be without actually killing the sufferer, and how long the sufferer can remain in this state. This high level of suffering can last uninterrupted for DECADES.


Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? by Byron Hyde MD  

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.


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.

[Note that this is not a pure M.E. list or website]


Chapter Twenty-eight by Neenyah Ostrom CFS Can Cause A Particular Type Of Heart Murmur

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.


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

See also the Criona Wilson (mother of Sophia Mirza) page

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.


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.'


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. '


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.'


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]


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].


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."


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.


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...


Causes of death among patients with chronic fatigue syndrome. Jason, L.A., Corradi, K., Gress, S., Williams, S., & Torres-Harding, S. (in
press). Health Care for Women International.


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.  


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?