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. and mistreatment (in brief)

As is logical and ethical, in diseases such as MS and diabetes, studies on patients with those diseases are used to determine correct treatments. What treatments M.E. patients will be given, however, is currently decided by research involving an entirely different and vaguely defined patient group made up of people with a wide variety of different non-M.E. diseases and conditions. As one might expect, the most commonly recommended 'treatments' for M.E. are entirely inappropriate and harmful, and have ZERO chance of success. Even worse, patients are often not given a choice about participating in such programs, and may be coerced or forced into participating in them. In many cases these 'treatments' are the reason patients have been severely affected for many years or decades and there have also been a number of deaths.

People with M.E. very often face medical abuse and neglect, abuse from the media and even from friends and family - thanks to misinformation disseminated by vested interest groups. What is happening to people with M.E. is a gross violation of basic human rights. It amounts to legalised medical torture and abuse of some of our most vulnerable members of society.

M.E. and mistreatment

Two of the most common interventions people with M.E. are recommended (or coerced or forced) to participate in are cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

No evidence exists which shows that CBT and GET are appropriate, useful or safe treatments for Myalgic Encephalomyelitis patients. Studies involving miscellaneous psychiatric and non-psychiatric ‘fatigue’ sufferers, and their positive response to these treatments, have no more relevance to M.E. sufferers than they do to diabetes patients, patients with multiple sclerosis or any other illness. Thus, patients with M.E. are routinely being prescribed these treatments on what amounts to a ‘random’ basis medically.

As (bad) luck would have it, graded exercise programs are probably the single most inappropriate ‘treatment’ that a M.E. sufferer could be recommended to undertake. This is because exercise or exertion intolerance is one of the many characteristics which separates Myalgic Encephalomyelitis so distinctly from various post-viral fatigue states or other illnesses involving 'chronic fatigue.’ People with M.E. do not improve with exercise. They cannot; exercise intolerance is a large and essential part of what M.E. is.

Overwhelming evidence exists to show that exercise can have extremely harmful effects on M.E. patients; permanent damage may be caused, as well as disease progression: recent research has shown that postural stress (as well as excessive physical or cognitive activity) exacerbates cardiac insufficiency in this disease. Patients with M.E. are in a form of heart failure and even minor or moderate levels of physical activity (etc.) can cause severe and prolonged relapse in M.E. Patient accounts of leaving exercise programs much more severely ill than when they began them; wheelchair-bound or bed-bound or needing intensive care or cardiac care units, are common. The damage caused is often very severe and may be either long-term or permanent. Thus some patients are still dealing with the severe physical effects of inappropriate advice to exercise (or formal GET programs) five, ten, fifteen or more YEARS afterward and for some patients this damage appears to be permanent.

In addition to the risk of relapse, sudden deaths have also been reported in a small percentage of M.E. patients following exercise. As Dr. Elizabeth Dowsett, explains; ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’

In 2004 a survey of severely affected M.E. sufferers found that graded exercise was by far the single most harmful treatment they had undertaken. A shocking 82% reported that it had made their condition worse. A significant number of those surveyed indicated that they were not severely affected before GET. Thus GET should not be considered safe for M.E. sufferers of any severity. Graded exercise cannot improve authentic M.E.; disabled patients who improve with exercise do not qualify for a diagnosis of authentic M.E.

The effect of cognitive behavioural therapy (CBT) on patients with M.E. varies depending on the type of CBT used, and the severity of the M.E. At best this intervention is useless, but CBT which aims to convince a physically ill person that he/she does not have a physical disorder is disrespectful, inappropriate and cruel. It places an additional (and bogus) psychological burden on a person already suffering with severe physical illness, and can cause significant psychological harm. This abusive form of CBT can undoubtedly cause significant psychological harm, but it is the additional associated burdens; severe and prolonged physical relapse, the withholding of basic medical care, the removal of children from their parents and parents being falsely charged with making their children ill themselves (etc.) which combine to make CBT so potentially harmful. Thus the negative effects of CBT can sometimes be equally as devastating as those of GET, or in some cases, even worse (for sufferers and their families).

CBT and GET are at best useless and at worst extremely harmful for Myalgic Encephalomyelitis patients.

Despite this, people with M.E. are routinely being recommended these ‘treatments’ while also being assured that they are completely safe. These interventions are also not just being offered to M.E. patients solely on a voluntary basis; many have been treated as psychiatric patients against their will (or against the will of the parents of children with M.E.). In some cases it is a condition of receiving medical insurance entitlements that M.E. patients first undergo ‘rehabilitation’ such as CBT and GET programs. This is also true of government welfare entitlements, particularly in the UK, as Professor Malcolm Hooper explains:

[In the UK] many patients are simply too sick to be forced to attend psychiatric units and to participate in compulsory "management strategies" which involve exercising, but if they fail to attend, they are deemed not to want to get better and their State benefits are withdrawn because of Wessely’s dogmatic advice to Government that M.E. is nothing more than an "aberrant illness belief". There are many such known cases, including those in which ME patients have been threatened with being sectioned (ie. compulsorily detained under the Mental Health Act) unless they comply with psychotherapy.

In a scientifically enlightened age such as this, how is it acceptable that the results of studies using one patient group can be used to determine the aetiology and appropriate treatments for a completely separate and unrelated patient group? How is this scientific? How is this ethical?

Does this mean that research conducted using patients with diabetes (for example) can now also be applied to all those who have cancer, nut allergies, broken legs or any number of other unrelated problems; merely because the researchers involved have decided that they would like it to, and that doing so would suit their own vested interests?

If a prescription drug had anything like the appalling track record exercise has with people with M.E. (or even a small fraction of it; even 2%) it would be an enormous worldwide scandal. The drug would be immediately banned, there would be some form of inquiry and serious criminal charges may well be laid. Yet the rate of people with M.E. recommended or even forced to exercise continues to rise, and with the full support of government etc. This is despite the fact that legitimate research clearly shows that it has a ZERO percent chance of providing any benefit to people with authentic M.E. Patients with M.E. regularly undertake a huge level of risk, including significant risk of death or severe long-term disablement, for zero chance of any gain. That this can be allowed to go on in such a supposedly enlightened day and age as ours defies belief.

It is also of great concern that so many M.E. patients are ONLY offered ‘treatments’ such as CBT and GET – while access to even basic appropriate medical care is withheld. Of the 25% of patients who are severely affected by the illness (and are bed-bound and housebound) around the majority have no contact with the health service at all as they are seldom able to obtain housecalls, for example. Many sufferers are also refused the basic welfare support to which they are entitled. Thus a significant percentage of very physically ill and vulnerable M.E. patients are simply left to suffer and die at home without any medical care or welfare or social support. From Professor Malcolm Hooper:

Patients with myalgic encephalomyelitis, particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of certain psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder. These psychiatrists are shown to be clearly in breach of the first tenet of medicine --- first do no harm--- in that by their words and deeds they have wreaked havoc in the lives of M.E. patients and their families by their arrogant pursuit of a psychiatric construct of the disorder which ignores the abundant clinical and scientific evidence (widely presented in the international medical and scientific literature) of the organic nature of M.E.

This problem with forced participation in CBT and GET for patients with M.E. is undoubtedly at its worst in the UK and the Netherlands, and to a lesser extent Australia. These treatments are not so commonly recommended in other countries, such as the US, at present. However, the latest information produced on ‘CFS’ by the CDC in the US makes it clear that this seems very likely to change in the near future. US M.E. patients are increasingly concerned, and with good reason, that the US will soon follow the abusive UK model of forced CBT and GET and so on. This abuse must be stopped, and most importantly, not allowed to spread further and claim untold numbers of new victims.

What is happening to people with Myalgic Encephalomyelitis is a gross violation of basic human rights.

M.E. and abuse

M.E. patients are routinely abused by our medical system, government, the media and often also by friends and family members.

Patients are often denied basic medical care and welfare support. Medical abuse is a serious problem, with the most commonly recommended 'treatments' for M.E. being entirely inappropriate and harmful, and having ZERO chance of success. Even worse, patients are often not given a choice about participating in such (terrifying) programs, and may be coerced or forced into participating in them. In many cases patients have been left far more ill for years or decades afterwards and there have been deaths.

Some M.E. patients have been inappropriately sectioned as mental patients against their will, and despite suffering no mental illness. Children with M.E. have been taken from their parents and denied access to food, water or parental contact - or thrown in swimming pools - in an attempt to try to force the child to 'stop pretending to be ill.'

What is happening to people with M.E. is a gross violation of basic human rights. It amounts to legalised medical torture and abuse of some of our most vulnerable members of society. The damage perpetrated on those with M.E. by Wessely School adherents cannot be quantified.

The problem is not merely that M.E. patients are inappropriately treated as if they were mentally ill. It is so much more than that. The 'CFS' government spiel encourages the idea that patients given this misdiagnosis are lazy, selfish, manipulative, dishonest and deluded people that are 'enjoying the sick role' and so deserve to be treated with scorn, contempt and outright ridicule. Patients are persecuted by everyone around them in many different ways, continually.

Requests for further testing are always to be denied lest they perpetrate the 'mistaken belief'the patient has that they are ill. Doctors are told that this testing is also a waste of money because of course 'you won't find anything.' Thus it is almost impossible for those thrown into the 'CFS' wastebasket - probably the majority of whom are physically ill and would have abnormalities on testing - to be given a correct diagnosis and correct treatment.

This is the aim of the 'CFS' scam, to enable companies to get out of paying for any type of proper medical care for all these patients, saving them many millions of dollars. The abuse of M.E. patients part of a money making venture by big business, helped along by government. The abuse is not accidental, it is PLANNED, and these groups are working hard to make sure it continues so that their financial and political rewards also continue.

Humans rights groups and the media could not be less interesting in helping M.E. patients and seem to have fallen for all the 'CFS' propaganda fully, as tissue thin and scientifically laughable as it is. Thus things continue to get worse for M.E. patients and the abuse continues to escalate as each year passes.

To claim that there is 'medical disagreement' over M.E. is simply not accurate. As Professor Malcolm Hooper explains:

People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.

More information

To read or download an extended and fully referenced version of the above text, please see the Smoke and Mirrors and The effects of CBT and GET on patients with M.E. pages.

See also: Comments on the 'Lightning Process' scam and other related scams aimed at M.E. patients

Additional relevant links: