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.

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.

The severity of M.E.

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:

One of the main misconceptions is that while walking a few steps must of course require additional bodily resources and additional cardiac output, time spent thinking, looking, listening or experiencing other sensory stimuli does not. But this is not the case. Not only physical effort, but also cognitive effort, requires additional resources which an M.E. patient may not have. The brain contains some 100 billion neurons connected to some 10,000 relay stations and this enormous electrical activity creates a massive need for energy and other bodily resources. The brain uses up to 25% of the entire body's demand for glucose, 25% of the blood pumped from the heart goes to the brain and the brain also needs 25% of the body's oxygen supply. (Blood supplies nutrients like glucose, protein, trace elements, and oxygen to the brain.) So of course, every extra second of ‘electrical activity’ – every thought, every feeling, every noise heard or sight seen – requires additional cardiac output, makes additional oxygen and glucose demands, and so on, in just the same way as does a physical activity such as walking; if not more so. So in addition to physical activity, the list of things that can cause similar severe relapse in M.E. patients also includes cognitive exertion, sensory input and orthostatic stress. Anything that makes the body work harder or have to adjust in some way, in effect (Dowsett n.d. d, [Online]).

Again, that is why hospital trips (or any travelling out of the house) should be an absolute last resort for patients with severe M.E. and should be avoided wherever possible. Requiring patients with severe M.E. to go to hospital (etc.) is like making a person with two freshly broken legs walk for 5 hours to get medical help. It’s as counter-productive and cruel as it is agonisingly painful.

People with severe M.E. are some of the most vulnerable members of society and they deserve and desperately need appropriate care; care given in the home as much as possible. It is unreasonable that these already very severely ill patients have to be made so much more severely ill to get the basic care they need, most of which could easily be administered at home at an immensely reduced physical cost to the patient.


Excerpt 3:

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 4:

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.

Survey of the experiences of housebound/bed-bound ME/CFS patients MERGE,The Gateway, Perth; and the 25% Group for Severe ME/CFS Sufferers, Troon, Ayrshire

Aims: We report the results of a UK survey conducted by the ൡ% Group", a patient-led group of which MERGE is the research arm, which has highlighted the seriousness of the condition of these particular patients and their needs. Methods and Results: In July 2000, a custom-designed questionnaire was sent to all 400 members of the ൡ% ME Group", a self-help organisation in the UK whose membership is restricted to housebound or bedridden patients. The questionnaire contained 18 questions about their current medical condition and their illness experience. Question responses were analysed descriptively. The Table below shows that 55% of respondents had been ill for more than 10 years, and 50% of them had taken more than 2 years to obtain a formal diagnosis of ME/CFS. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than 6 years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms; that 38% (81/212) described themselves as totally dependent on others; and that 48% (104/215) reported no regular assessment or management of their condition. Conclusions: This survey shows that human cost of ME/CFS can be substantial, a fact that is generally under-reported in the medical literature and ignored by systematic reviews of clinical trials. We suggest that the impact, prevalence and the pathways to chronicity of this disease need urgent investigation.

[Note that this site does not support the use of the illogical and unhelpful concept of 'ME/CFS.']

Severely Overlooked by Science — An Overview of Research on Severely-ill People with ME by Dr Neil C Abbot, for MERGE and the 25% ME Group

"Severely ill are severely overlooked; just ignored and invisible." CMO report 2002, Section 2.3.1

Ignored and invisible! When the authors of the Chief Medical Officer's report of 2002 coined that phrase they were referring to the exclusion of the most severely ill people with ME from community and social care provision. However, the same description also holds true for mainstream scientific research.

A cursory glance at the existing scientific literature on ME (largely held in electronic databases — mainly MEDLINE — and specialist resources like the downloadable database of some 3000 abstracts at the MERGE website) reveals the virtual absence of information on the most severely affected people.

The Table below gives the number of articles (loosely defined) published for some randomly-chosen illnesses, and it shows two things. First, that ME is a Cinderella illness compared with other comparable chronic conditions in terms of volume of research publications; and second, that research on the severely ill is a rarity in most illnesses, including ME.

On the severity of M.E.: How severe is Myalgic Encephalomyelitis?

Although some people do have more moderate versions of the illness, symptoms are extremely severe for at least 25-30% of the people who have M.E.; significant numbers of whom are housebound and bedbound.

Dr. Paul Cheney stated before a US FDA Scientific Advisory Committee:

I have evaluated over 2,500 cases. At worst, it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. 80% 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])

Dr Dan Peterson found that: ‘M.E. patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.’ An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest. "In other words", said one M.E. expert in a radio interview, "this disease is actually more debilitating than just about any other medical problem in the world" (Munson 2000, p. 4).

For very severely affected M.E. sufferers there is virtually no ‘safe’ level of physical or mental activity, orthostatic stress or sensory input; no level which does not produce a worsening of symptoms, and perhaps also contribute to disease progression. Even the most basic actions – speaking a few words, being exposed to moderate light or noise for a few minutes, turning over in bed, having hair or body washed in bed by a carer or chewing and swallowing food – cause severe and extended symptom exacerbations in such patients. It is not uncommon to hear of very severely affected sufferers who are unable to bathe themselves (or even be bathed by a carer) more often than once a week, or even once every few weeks, or even less. Some sufferers cannot chew or swallow food any longer and need to be tube fed. Many patients with severe M.E. are no longer able to toilet themselves, and so on. Either sufferers are just too ill to do these things at all, or they cannot tolerate the very long and severe relapses that come after such activities.

For people with severe M.E. even the smallest movement, thought, touch, light, noise or period upright can make their already very severe symptoms far worse. Thus few illnesses demand such isolation and loss of quality of life as severe M.E. Very often people with very severe M.E. can barely communicate, or even tolerate the presence of another person. This is what makes M.E. such a cruel disease and such an isolating disease. The illness can cause an unrelenting level of disability, suffering and isolation that is just unimaginable to anyone not familiar with very severe M.E. (Bassett 2007, [Online]).

In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS and M.E. Clinic at Oregon Health Sciences University, found that M.E. patients whom he saw had far lower scores on the Karnofsky performance scale than his HIV patients even in the last week of their life. He testified that a M.E. patient, ‘feels effectively the same every day as an AIDS patient feels two weeks before death’ (Hooper & Marshall 2005a, [Online]). But in M.E., this extremely high level of illness is not short-term – it does not always lead to death – it can instead continue uninterrupted for decades.

  • It should also be noted that even those patients with moderate M.E. are far more severely affected than many patients with a variety of other illnesses. Of course severe M.E. is even worse, but moderate M.E. can also cause severe symptoms and a relatively high level of disability and suffering, compared to many other illnesses.


Recovery from Myalgic Encephalomyelitis

Myalgic Encephalomyelitis patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis. As M.E. expert Dr Melvin Ramsay. explains; ‘The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them’ (1986, [Online]).

M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. Some patients experience spontaneous remissions albeit most often at a greatly reduced level of functioning compared to pre-illness and such patients remain susceptible to relapses for the remainder of their lives – M.E. is a life-long disability where relapse is always possible. Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes M.E. is fatal. As Dr Elizabeth Dowsett explains:

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, stabilisation, 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 and rejection of welfare support… It is an additional and potentially avoidable factor (2001a, [Online]).

When asked on CNN how many of his M.E. patients had fully recovered in fifteen years, Dr Peterson equivocally and chillingly stated, "None" (Munson 2000, p. 5).

M.E. expert Dr Byron Hyde explains that the prognosis of M.E. also differs from patient to patient depending on the degree of damage to the brain:

If the patient’s illness is not measurable using a dedicated brain SPECT scan such as a Picker 3000 or equivalent, then the patient does not have M.E. For legal purposes these changes may be confirmed by PET brain scans with appropriate software and / or QEEG. These changes can be roughly characterized as to severity and probable chronicity using the following two scales: A: Extent of injury and B: degree of injury of CNS vascular function.

Extent of Injury

Type 1: One side of the cortex is involved. Those patients labeled as 1A have the best chance of recovery.

Type 2: Both sides of the cortex are involved. These patients have the least chance of spontaneous recovery.

Type 3: Both sides of the cortex, and either one or all of the following: posterior chamber organs, (the pons and cerebellum), limbic system, the subcortical and brainstem structures are involved. Type 3B are the most severely affected patients and the most likely to be progressive or demonstrate little or no improvement with time.

Degree of injury

Type A: Anatomical integrity is largely maintained in the brain SPECT scan.

Type B: Anatomical integrity is not visible in the CNS SPECT scan. Type 3B are some of the most severely and chronically injured patients (2007, [Online]).

Clearly, many people with M.E. are significantly or severely disabled. But what is so tragic about this high level of suffering is that so much of it is needless and fairly easily avoidable. So many people with M.E. are severely affected because of inappropriate medical advice or because of a lack of support. Because of the way even minor overexertion can have such a negative effect on long term prognosis M.E. really is an illness where in terms of support and care ‘a stitch in time saves nine.’ The correct type of support (financial, medical and practical) can do much to prevent the physical, occupational and other deterioration in the quality of life for M.E. patients and can stabilise the illness. People with M.E. desperately need to be given the same access to basic care as those with comparable illnesses, no more and no less (Dowsett 2002b, [Online]).

It is also true that many of the deaths from M.E. could have been prevented if only those patients had been given the basic level of support and care made available to patients with illnesses with comparable care needs such as multiple sclerosis and motor neurone disease. Patients with M.E. have literally died from neglect, and continue to die from neglect (in ‘first world’ countries such as the UK, Australia and the USA) because of the political propaganda surrounding ‘CFS’ and the confusion between M.E. and CFS.

People with M.E. must – as soon as possible – be given a correct diagnosis and the appropriate advice and support to ensure that they are given a chance at achieving their best possible prognosis.

Taken from What is M.E.?  

Daily Telegraph, U.K. 1992

"My illness began so mildly and innocently more than ten years ago—as the years have passed I've developed more and more complications and faced several life-threatening episodes. I've been hospitalised five times for a total of over 13 weeks and now have chronic gastroparesis and paralytic ileus. I have been nil by mouth for 18 months; I've had three PICC lines lost due to rejection infection and phlebitis. I've had three central lines." Female with ME

Severe Symptoms

  • severely limited cognitive function
  • intractable headache often associated with facial swelling particularly around eyes
  • atypical seizures
  • grand mal
  • paresis
  • paralysis
  • spasticity
  • dysphagia
  • gastroparesis, dismotility
  • paralytic ileus, reverse peristalsis
  • severe angina
  • marked weight loss or gain (up to 40% of body weight)

Features of chronicity in ME/CFS: a case series in the UK. Gibbons R, Macintyre A, Richards C. Journal of Chronic Fatigue Syndrome 1996; 2(2/3): 111-112.

Abstract: The objectives of the research were to identify the group of patients in the UK who have been rendered so chronically disabled by myalgic encephalomyelitis/chronic fatigue syndrome that they cannot leave home unassisted and to assess aspects of their physical and cognitive levels of disability at the onset of the illness and at present. METHODS. Participants were sought through patient organizations and individual physicians; data, in the form of detailed case histories, were collected by means of self-report questionnaires. All patients fulfilled the CDC criteria and had received a diagnosis of myalgic encephalomyelitis (ME) post-viral syndrome (PVS)/chronic fatigue syndrome (CFS) from a general practitioner or a hospital consultant. The following further criteria were also applied: (i) chronicity (duration of illness of not less than two years); (ii) a specified level of disability (inability to leave home without assistance). RESULTS. Patients identified: 147 to date (and steadily accumulating). Duration of illness: ɱ years: 81%; ᡂ years: 38%; death: 2 (the first after a 15 year illness, the second after 7 years). CONCLUSION. These preliminary results suggest that, in a percentage of cases of ME/CFS, chronicity of a scale not previously documented is a significant feature of the disease. They also suggest that certain physical and cognitive disabilities increase with increasing chronicity.

[Note that this site does not support the use of the illogical and unhelpful concept of 'ME/CFS.']

The quality of life of persons with chronic fatigue syndrome. Anderson JS, Ferrans CE. University of Illinois at Chicago Medical Center, Department of Psychiatry 60612, USA.

This descriptive study used a between-methods triangulation design to analyze the multiple dimensions of quality of life in persons with chronic fatigue syndrome (CFS). This method, which refers to the combination of both quantitative and qualitative methods in the same study, allowed the authors to obtain more comprehensive and robust data than could be obtained by either method alone. A convenience sample of 110 persons with CFS completed the quality of life index and CFS questionnaire, and a subset of 22 persons were interviewed regarding their lived experience with CFS. Overall scores on the quality of life index were significantly lower in CFS than for other chronic illness groups. Subjects reported the lowest quality of life scores in health and functioning domain. Indepth interviews provided a more complete understanding of the quality of life in CFS and further explained the low ratings that were found on the quality of life index. The findings suggest that quality of life is particularly and uniquely disrupted in CFS.  

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.

Severe and Very Severe Patients with Chronic Fatigue Syndrome: Perceived Outcome Following an Inpatient Programme Diane L. Cox, PhD, MSc, Dip COT; Leslie J. Findley, OLJ, TD, MD, FRCP, FACP Journal of Chronic Fatigue Syndrome, Vol. 7(3) 2000, pp. 33-47

Affiliations: Diane L. Cox, Senior Lecturer in Occupational Therapy, Faculty of Health, South Bank University, Southwark, London SEI 0AA, UK. Dr. Cox was Head Occupational Therapist and Coordinator of the CFS Team at Essex Centre for Neurological Sciences.

Current address of Diane L. Cox: Department of Occupational Therapy Education, St. Martin’s College, Lancaster, LA1 3JD, UK.

Leslie J. Findley is Consultant Neurologist, CFS Diagnostic & Management Service, Essex Centre for Neurological Sciences, Oldchurch Hospital, Romford, Essex, RM7 0BE, UK.

Most studies on CFS do not include the more severe expressions of the disease...

However, although the definition states that, ". . . CFS is characterised by severe disabling fatigue . . .," and identifies the subgroups discussed previously, it does not discuss the range of disability and reduced functioning seen within the syndrome (1). In addition, most studies on CFS do not include the more severe presentation of the disease (4-8). In addition, health agencies often do not appear to appreciate the differing level of dysfunction seen within the illness and the consequent impact on daily life (9). This descriptive paper therefore aims to illustrate the perceived outcome of these more severely affected patients following the inpatient programme.

[Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: Website: ]

Usefulness of the Fukuda and Holmes definition in the diagnosis of CFS P De Becker [1], J Nijs [1], N McGregor [2], K De Meirleir [1] Dept. of Human Physiology, Vrije Universiteit Brussel, Belgium Collaborative Pain Research Unit Department of Biological Sciences Faculty of Science University of Newcastle Callaghan, New South Wales Australia

The Holmes and Fukuda criteria are widely used criteria all over the world, yet a specific European study regarding CFS patient symptomatology has not been conducted so far. This study was performed in an outpatient tertiary care setting fatigue clinic in Brussels. 2073 consecutive patients with major complaints of prolonged fatigue participated in the study. Multi-variate analyses were performed to assess the symptom presentation within a fatigued population and the differences between the Fukuda and Holmes definitions compared with an excluded chronic fatigued group in a large cohort of fatigued patients. Of the 2073 patients complaining of chronic fatigue, 1578 CFS patients fulfilling the Fukuda criteria (100% of CFS group) and 951 (60.3% of the CFS group) fulfilled the Holmes criteria. Discriminantfunction analysis revealed that the Fukuda and Holmes definitions can be differentiated by symptom severity and prevalence. The Holmes definition was more strongly associated than the Fukuda definition with the symptoms that differentiated the CFS patients from the patients that did not comply with the CFS definitions. The inclusion of ten additional symptoms was found to improve the sensitivity/ specificity and accuracy for selection of CFS patients. The CFS patients fulfilling the Holmes criteria have an increased symptom prevalence and severity of many of the symptoms that determine the difference between CFS and CF patients. Patients fulfilling the Fukuda criteria were less severely affected patients which leads to an increase in clinical heterogeneity. We can conclude that the use of the Holmes criteria defining symptoms of fatigue, swollen/tender lymph nodes, sore throat, muscle weakness, recurrent flu-like symptoms, postexertional fatgigue, myalgia, memory disturbance, nonrestorative sleep with addition of certain symptoms (hot flushes instead of low-grade fever, attention deficit, paralysis, new sensitivities to food/drugs, difficulties with words, urinary frequency, cold extremities, photophobia, muscle fasciculations, lightheadedness, exertional dyspnea and gastrointestinal distrurbance) to the Holmes definition and removal of others (arthralgia and low-grade fever) would strengthen the ability to select CFS patients, also the incorporation of a severity index would be beneficial for subcategorization of patients.

Do the 1988 and 1994 CFS case definitions identify the same illness complex? Lana A. Tierskv, Stacy Weisberg, John DeLuca, and Benjamin H. Natelson

Objective: The decision to modify the original CFS case definition was based more on a perceived need to do so than on empirical data to support the proposition that the 1988 CFS case definition did not identify a distinct group of cases. If it is true that the 1988 criteria do not delineate a distinct group of cases, patients fulfilling these criteria should have the same symptom complexes as those fulfilling the relaxed 1994 case definition. Conversely, if patients fulfilling the 1988 case definition are a distinct group, their symptom pattern should differ from the profile of individuals fulfilling the 1994 CFS case definition. One purpose of this study was to evaluate these possibilities by comparing the symptom presentation of subjects diagnosed according to the 1988 CFS diagnostic criteria to the symptom complexes of subjects diagnosed according to the 1994 CFS diagnostic criteria. Differences in activity reduction and symptom onset were also investigated. Methods: Sixty-two subjects completed a questionnaire that obtained information pertaining to CFS symptomatology as well as illness course. The data collection format of the list allowed subjects to respond if a CFS symptom was present as well as at what severity the symptom was experienced. Based on responses to the questionnaire CFS subjects were divided into two groups:

1) Subjects meeting the 1988 criteria for CFS, and
2) Subjects meeting the 1994 criteria.

Patients meeting the 1988 criteria also all met the 1994 criteria; however none of the patients meeting the 1994 criteria also met the 1988 standards. Thus, we were able to delineate two groups. Results: When subjects who met the 1988 case criteria (n=45) were compared to those who met only the 1994 criteria (n=17), subjects in the 1988 group were found to suffer from a more severe form of the illness. Specifically, subjects in the 1988 group demonstrated more severe symptoms as well as a greater reduction in activity. The latter group also more frequently reported infectious-type symptoms as well as a sudden illness onset. Conclusions: The 1988 and 1994 CFS case definition criteria appear to identify distinct patient groups. Given that the subjects in the 1988 group more frequently endorsed infectious symptoms as well as more frequently reported a sudden flu-like illness onset, an infectious etiology for this group is hypothesized.

Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution Bart Stouten Published 13 May 2005 ©

Background A recent article by Reeves et al. on the identification and resolution of ambiguities in the 1994 chronic fatigue syndrome (CFS) research case definition recommended the Checklist Individual Strength, the Chalder Fatigue Scale, and the Krupp Fatigue Severity Scale for evaluating fatigue in CFS studies. To be able to discriminate between various levels of severe fatigue, extreme scoring on the individual items of these questionnaires must not occur too often. Methods We derived an expression that allows us to compute a lower bound for the number of items with the maximum item score for a given study from the reported mean scale score, the number of reported subjects, and the properties of the fatigue rating scale. Several CFS studies that used the recommended fatigue rating scales were selected from literature and analyzed to verify whether abundant extreme scoring had occurred. Results Extreme scoring occurred on a large number of the items for all three recommended fatigue rating scales across several studies. The percentage of items with the maximum score exceeded 40% in several cases. The amount of extreme scoring for a certain scale varied from one study to another, which suggests heterogeneity in the selected subjects across studies. Conclusions Because all three instruments easily reach the extreme ends of their scales on a large number of the individual items, they do not accurately represent the severe fatigue that is characteristic for CFS. This should lead to serious questions about the validity and suitability of the Checklist Individual Strength, the Chalder Fatigue Scale, and the Krupp Fatigue Severity Scale for evaluating fatigue in CFS research.

A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome. De Becker P, McGregor N, De Meirleir K.VUB, Vakgroep Interne Geneeskunde, KRO gebouw niv.-1, Laarbeeklaan 101, 1090 Brussels, Belgium.

OBJECTIVE: The Holmes and Fukuda criteria are widely used criteria all over the world, yet a specific European study regarding chronic fatigue syndrome (CFS) patient symptomatology has not been conducted so far. This study was performed to answer the need to assess the homogeneity of a large CFS population in relationship to the Fukuda or Holmes definitions and to assess the importance of a symptom severity scale. DESIGN: Multivariate analyses were performed to assess the symptom presentation within a fatigued population and the differences between the Fukuda and Holmes definitions compared with an excluded chronic fatigued group in a large cohort of fatigued patients. SETTING: An outpatient tertiary care setting fatigue clinic in Brussels. MAIN OUTCOME MEASURES: Prevalence and severity of symptoms and signs in a CFS population and in a chronic fatigued population. SUBJECTS AND METHODS: A total of 2073 consecutive patients with major complaints of prolonged fatigue participated in this study. Multivariate analyses were performed to assess the symptom presentation and severity and the differences between the Fukuda and Holmes definitions. RESULTS: Of the 2073 patients complaining of chronic fatigue (CF), 1578 CFS patients fulfilled the Fukuda criteria (100% of CFS group) and 951 (60.3% of the CFS group) fulfilled the Holmes criteria. Discriminant function analysis revealed that the Fukuda and Holmes definitions can be differentiated by symptom severity and prevalence. The Holmes definition was more strongly associated than the Fukuda definition with the symptoms that differentiated the CFS patients from the patients that did not comply with the CFS definitions. The inclusion of 10 additional symptoms was found to improve the sensitivity/specificity and accuracy for selection of CFS patients. CONCLUSIONS: The CFS patients fulfilling the Holmes criteria have an increased symptom prevalence and severity of many symptoms. Patients fulfilling the Fukuda criteria were less severely affected patients which leads to an increase in clinical heterogeneity. Addition of certain symptoms and removal of others would strengthen the ability to select CFS patients.

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

A detailed personal account of what severe ME is like to live with on a daily basis.

Cancer and Myalgic Encephalomyelitis

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

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.

For more see the: Criona Wilson (mother of Sophia Mirza) page

The result of the inquest into the death of Sophia Mirza
Inquest Implications by Eileen Marshall and Margaret Williams, 16 June 2006

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

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

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

The months dragged by.  For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.

By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.' [Click on the link in the title to read the entire article]

Shannon's Story (on Invest in ME)

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

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

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

An excerpt from 'It's not personal' by Clytie, an Australian severe M.E. patient. This amazing piece speaks for so many of us with severe M.E. It gives our extreme isolation and suffering a voice. This is true very severe M.E., and nothing to do with mere 'fatigue' or tiredness.

….(Warning: temporarily disabling 'Brave and Cheerful™' mode)…

…. My family is perfectly willing to travel across the country to see me. They care, and they want to help. So they don't visit me.

Anyone who has had or dealt with a virulent chronic disease is probably getting the point by now: contact makes me sicker ... permanently. Early on, I would trade days or weeks of being much sicker, just to spend some time with friends or family, until I learnt that I never quite got back to my previous level of capability. As the disease "progresses", each time you lose more and more of your rapidly-vanishing capability. It's rather like borrowing money at very high interest, then not being able to repay it. However, this disease is even more extortionate than our banks: it doubles and triples the interest rate whenever you overdraw. You end up with nothing, which probably wouldn't be so bad if the process weren't so drawn-out and agonizing.

So, how do you feel if your much-loved relative asks you not to come and visit her? By the sound of my daughter's voice on the phone today, you feel disappointed, rejected and unappreciated. She tried very hard not to show it, but I know her. In the same way, she probably sees through my determined cheerfulness in other calls. The fact is, we're separated by this disease, and we both hate it. Do I feel abandoned by my family because they don't visit me? No, but I feel resentful and miserable that my condition prevents them from doing so. Who do I blame? I really wish I had something I could hammer or lambast. My grandchildren are toddlers, and I've never seen them, apart from photos. I couldn't be with my daughter when she gave birth, or help her afterwards. I'm really angry about that. Unfortunately, I have nowhere to direct my anger. I'm no longer able even to punch pillows or scream. I end up being a quiet victim, and in many ways that is the greatest humiliation.

My daughter had made a great effort. Even though she and her partner are very short of money, they planned to spend it on bringing the kids to see me, over thousands of kilometres, with all the difficulties of travelling with children on a strained budget. After that, they were going to move even further away, to improve their work opportunities and the environment for their children. But first they wanted me to have this chance.

God, I appreciate it so much. I am crying as I write this. It hurts so much to say "No". I wish, desperately, that there were some way we could do this. Actually to hug my daughter again, to meet her partner, to be in the same room with their beautiful kids ... why isn't there a way?

I want this article to stand as a public declaration to my daughter, that I love her so much and appreciate what she tried to do. I don't want her to doubt her self-worth, or feel unwanted in any way. I value her, and her efforts, more than I can possibly say….

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].

The terms 'fatigue' and 'chronic fatigue' were not associated with this illness at all until 1988 in the US [6]'

A survey of those most severely affected by ME/CFS (by the 25% ME Group)

The 25% M.E. Group sent out a questionnaire to its members to help it prepare a submission for an inquiry into M.E.

The whole submission is over 50 pages long (it also includes information from previous surveys they have done).
Read the Survey

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

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

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

On one occassion they just dropped Ean into the pool, hoping that he would use his arms to save himself. Ean couldn't, and just sank underwater. The swimming sessions went on. After just one week in the hospital, Ean's condition deteriorated; he looked exhausted each evening after physiotherapy; his mouth was full of ulcers again; his permanent headaches returned; his feeling of constant nausea was worse than ever; and his eyes hurt because
his dark glasses had been confiscated. Dr C said that Ean had never had M.E. - just "school phobia" and an "over-protective mother".

Ean was in care in the local hospital for nearly six months.'

Sick, Not Tired by Ciara MacLaverty

If the medical administrative staff are anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff have said to me: "I don’t really know very much about ME. You get tired a lot, don’t you?"

No. I’m 35 and haven’t been "tired" in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.

"No Total Rest" prescription is irrelevant to acute ME  From Ciara MacLaverty   It's been almost 20 years since I was first diagnosed with ME. The controversies surrounding causes and management of ME have raged through the decades but one fact remains constant: I took a virus in 1987 and I have never had a day's full health since then. My health appears to be permanently damaged. Ditto hundreds of thousands of sufferers.   I want to express my concerns over the widely touted dictate that "Total and/or Prolonged Rest is counter-productive in ME."  Even some of the moderates, who are firmly in the "ME is a serious physical illness" camp, can advocate this position. The "No Total Rest" (NTR) approach simply does not apply to my experience of severe ME.  

Ingeborg is from The Netherlands and has very severe Myalgic Encephalomyelitis. Read her story.  

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

Hospital or carer notes for M.E.  an excerpt:  

In short, if patients with M.E. exceed their individual post-illness physical, cognitive, orthostatic and other limits, they will experience some combination of the following:

  • A mild-severe (acute or delayed) worsening of one or more symptoms for hours, days or longer afterward
  • A mild-severe (acute or delayed) worsening of virtually every symptom for hours, days or longer afterward
  • A severe (acute or delayed) worsening of the base level of illness/disability for hours/ weeks/ months or even years afterward, or
  • A permanent worsening of the base level of illness/disability (i.e. permanent physical damage is caused and chances for significant recovery are adversely affected or taken entirely)

It is also important to be aware that repeated or severe overexertion can also result in the death of the M.E. patient. (Death in M.E. is most often caused by heart failure or multiple organ failure.)

So what are the top 10 most obvious things you need to be aware of in providing care to a M.E. patient?

  1. Reduce exposure to light
  2. Reduce exposure to noise
  3. Reduce/eliminate all non-essential visitors
  4. Do not encourage patients to be more physically active (or upright longer) than they can easily tolerate
  5. Try to schedule demanding tasks for the patient's best time of day as much as is possible
  6. Try to reduce the patient’s levels of cognitive exertion and sensory input
  7. Be aware of any special dietary requirements
  8. Be aware of the likelihood of negative drug reactions
  9. Be aware of the need for extensive rest and problems with sleep
  10. Be aware that these aforementioned relapses can be delayed, and that they can be very serious and prolonged

The Ean Proctor Story

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

The books: CFS: A Treatment Guide by Verillo and Gellman, Stricken: Voices from the Hidden Epidemic of CFIDS edited by Peggy Munson, Shattered: Life with ME by Lynn Michell and Osler's Web by Hillary Johnson all contain many excellent and detailed patient accounts of severe M.E.  

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

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

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


Ten things severe ME sufferers wish ME societies would do by Ricky Buchanan  

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?  

The Right to Die: The need to support and pass 'Right to Die' legislation in Australia and around the world. Written by an Australian person with severe Myalgic Encephalomyelitis, June 2006, (name withheld by request). An excerpt:   'I know this is a touchy subject, but it's a very important one for people with severe ME. Our quality of life can become so abysmal that we no longer have any choices at all: we can't move or do anything for ourselves. The right to die is a choice that we need to have, so that we can keep on fighting, in confidence that even when we become unable to move or function, we can still make that choice and have it carried out. I believe future generations will look back and be appalled at how we allowed such extremes of suffering in severe illness/disability. The children of the future will see us as savages, torturing our own kind.'  

PLEASE NOTE: The full text of this piece is very graphic and is a very non sugar-coated description of severe M.E. and so may be very upsetting to read. Those who would like to read the full text can do so on this page.