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.

M.E. seveity and deaths (in brief)

Symptoms are extremely severe for at least 25-30% of the people who have M.E.; significant numbers of whom are housebound and bedbound. Many of these patinets also have significant problems with basic tasks of daily living and basic communication. Severe M.E. is very disabling, but moderate M.E. is also more disabling than the most severe version of many other diseases and so also causes a high level of suffering.

The death rate for M.E. is roughly 3%. There are deaths due to cardiac failure, brain death, tumours, and liver failure. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. Many of these deaths are due to overexertion caused by mistreatment and so could have been avoided, if patients had been given basic appropriate medical care.

M.E. severity

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.

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.

In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS 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.’

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.

Patients with M.E. must be given access to the appropriate care and support as soon as possible after becoming ill. This only rarely occurs currently. Access to the appropriate care has an enormous impact on the course of the disease in M.E.; many and perhaps even MOST severely affected M.E. patients would not have become severely affected had they been given the basic correct care and support when they were first ill.

Today very few of those that are housebound by M.E. receive any appropriate medical care at all, and few patients are diagnosed very early on in the course of the disease and advised to avoid overexertion, as is appropriate. Thus the numbers of those with severe M.E. continue to rise, needlessly.

M.E. deaths

Around 30% of M.E. cases are progressive and degenerative and sometimes M.E. is fatal.

Dr Byron Hyde explained recently,

I have some M.E. patients with a circulating red blood cell volume less than 50% of expected and a very large number with the range of 60% to 70%. What this test means is that blood is pooling somewhere in the body and that this blood is probably not available for the brain. When blood flow to the heart decreases sufficiently, the organism has an increased risk of death. Accordingly, the human body operates in part with pressoreceptors that protect and maintain heart blood supply. When blood flow decreases, pressoreceptors decrease blood flow to noncardiac organs and shunt blood to the heart to maintain life. This, of course, robs those areas of the body that are not essential for maintaining life and means the brain, muscles, and peripheral circulation are placed in physiological difficulty.
Dr Elizabeth Dowsett estimates the death rate for M.E. to be roughly 3%. There are deaths due to cardiac failure, brain death, tumours, and liver failure. All kinds of deaths. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. Dr Dowsett states, '20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.' Dr Dowsett explains that although these deaths are due to M.E., they are disassociated from it, and are almost never recorded in statistics as deaths from M.E.

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

What is so tragic about deaths from M.E. is that many of these deaths could (along with much of the suffering and severity of M.E.) 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.

Deaths also sometimes occur in M.E. as a result of suicide.  As Dr Elizabeth Dowsett explains, '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.'

Very often those with M.E. who commit suicide do so NOT because they are depressed but out of desperation. Because they are so ill and disabled and have no access to even basic care, or the most minimal support from friends and family - thanks to the 'CFS' scam, the denial of M.E. and the false claim that M.E. is the same as 'CFS.' Thus deaths for suicide in M.E. could also have been prevented if only M.E. patients were given basic appropriate care.

More information

To read or download an extended and fully referenced version of the above text, please see the What is M.E.? page.

For an in-depth discussion of issues relating to disability and M.E. and risk of death see the Can severe M.E. patients really die just from being forced out of bed, or to leave the house etc.? section in: Why patients with severe M.E. are housebound and bedbound

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

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

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

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

Additional relevant links:

Extra information: Preventing death in M.E.

Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.

However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.

This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.

If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.

M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.