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. advocacy (in brief)

Certain groups and individuals are benefiting enormously from the fraudulent artificial ‘CFS’ construct and from hiding the reality of M.E.  This is NOT a misunderstanding or about the science being unclear. The problem is that the overwhelming evidence which exists is ignored by those in positions of power to further their own interests.

The ‘CFS’ construct is complete fiction, and exists purely because it is so financially and politically beneficial to a number of powerful groups. The same is true of the abuse of M.E. patients and the denial of the reality of M.E. We must not let this unethical scam continue.

M.E. advocacy

M.E. is denied and denigrated purely for the benefit of political and financial vested interest groups. This task is helped immeasurably by the creation of the bogus disease category of 'CFS.' Thus the questions need to be asked:

For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from the artificial ‘CFS’ construct? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

The short and simple answer to this question is: medical insurance companies.

Medical insurance companies were heavily involved in the creation of ‘CFS’ and they remain heavily involved in the promotion and dominance of the ‘CFS’ concept today. M.E. is a widespread problem, potentially exposing medical insurance companies to the financial risk of huge numbers of long-term disability claims. Through the creation of the bogus disease category of ‘CFS’ these companies have saved themselves many millions of dollars. They have been able to deny many thousands of legitimate claims. The ‘CFS’ concept has saved an incredible amount of money for these companies. This is why ‘CFS’ is proving so resistant to scientific reality, despite pressure from patient groups who are trying to stop the horrific abuse and needless deaths caused by the ‘CFS’ scam: because such enormous amounts of money are at stake these medical insurance companies will stop at nothing to protect their enormous financial gains. 

Other groups which benefit in various ways from the artificial ‘CFS’ construct include the following;

  • Governments
  • The vaccine industry
  • The chemical industry
  • Psychiatrists
  • ‘CFS’ doctors
  • Medical doctors
  • The media (including medical journals)
  • 'CFS’ or ‘ME/CFS’ (and other) groups that sell vitamins and other supplements to ‘CFS’ patients
  • 'CFS’ or ‘ME/CFS’ (etc.) so-called patient support and advocacy groups

The problem is not a lack of scientific evidence supporting M.E., but that the mountain of evidence which exists is continually ignored by those in positions of power who are abusing that power to further their own vested interests, helped immeasurably by the creation of 'CFS.'

Certain groups and individuals are benefiting enormously from the fraudulent artificial ‘CFS’ construct and from hiding the reality of M.E.

To say that these groups and individuals actually believe what they are saying and that is it based on science or reality is ridiculous. To say that it is merely a misunderstanding or a mistake is also ridiculous. The ‘CFS’ construct is complete fiction, and exists purely because it is so financially and politically beneficial to a number of powerful groups.

The artificial ‘CFS’ construct is no more a scientifically accurate description of M.E. than it is a scientifically accurate description of MS, Lupus or polio. This pretence of ignorance about M.E. and about the reality of ‘CFS’ (particularly by government) has had devastating consequences for people with M.E. – and all those with non-M.E. illnesses who are misdiagnosed as having ‘CFS’ –  and has also meant that the number of M.E. sufferers continues to rise unabated and largely unrecognised. The general public worldwide – including sufferers themselves – have been lied to repeatedly about the reality of Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis can be one of the most debilitating and devastating illness there is, yet many with M.E. are subject to repeated medical abuse and neglect and are also forced to deal with extremely severe illness without the support of friends, family or the wider community or medical or government services (and indeed often they suffer abuse at the hands of these as well) because of the way the illness has been dishonestly ‘marketed’ to the public as being psychological or ‘behavioural’ in nature or as being primarily a trivial problem of mere ‘fatigue.’ Professor Malcolm Hooper explains that ‘Wessely school’ psychiatrists, and those who follow them, have:

Built their careers and reputations on denying the physical nature of M.E., with the result that untold numbers of chronically and seriously ill patients are bullied, derided, threatened and driven to suicide by being told that they are not physically ill but are suffering from “aberrant illness beliefs”. WesselySchool psychiatrists have been described in the eBMJ (N Portman, 3rd December 2003) as “a small clique of undemocratic, unaccountable, self-serving psychiatrists who have managed to monopolise most of the research funding in this field and, thanks to their prejudices, have been its downfall ever since.” Without doubt, the influence of Simon Wessely has resulted in a cascade of horrors which most people do not know about and when they do, they find scarcely believable (2003a, [Online]).

M.E. and CFS are not the same. Concepts such as ‘ME/CFS,’ ‘CFS/ME,’ Myalgic ‘Encephalopathy’ and ‘CFIDS’ are also unhelpful and unscientific and only add to the obfuscation.

‘CFS’ is merely a scam invented by insurance companies motivated by profit without regard for truth or ethics. These groups are acting without any regard for the (extreme) suffering and the additional avoidable deaths they are causing. These groups are acting criminally. This scam is tissue thin and very easily discovered if one merely takes a small amount of time to look at all of the evidence.

Why is almost nobody doing this? Why is the world letting these groups get away with such a heinous scam and such appalling abuse on a massive scale? Why isn’t the world caring enough or smart enough or gutsy enough to see through these slick and well-funded misinformation campaigns, and to act? How can this be, when the lies are so flimsy and scientifically laughable? Have we learned nothing from the devastating corporate cover-ups of the truth about tobacco and asbestos in our recent past? Where is the World Health Organisation? Where are our human rights groups? Where is our media? Where are our uncompromising investigative journalists?

Will it take another 20 years? How much more extreme do the suffering and abuse have to be? How many more hundreds of thousands of children and adults worldwide have to be affected? How many more patients will have to die needlessly before something is finally done? How much longer will we leave the fox in charge of the hen house? It’s beyond sick.

 

Is subgrouping or renaming 'CFS' the way forward?

Sub-grouping different types of ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. would achieve nothing and only create yet more confusion (which the corporations involved would no doubt continue to take advantage of, to the continued detriment of patients).

The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. CFS is made up of people with depression (and various other psychological illnesses), multiple sclerosis, athletes over-training syndrome, Fibromyalgia, various post-viral fatigue syndromes, candida, chronic Lyme disease, burnout, cancer and many more entirely unrelated and already well-defined conditions. To say that these conditions are all subgroups of ‘CFS’ is just absurd. Sub-grouping ‘CFS’ would only waste another 20 years or more. There is no such distinct disease/s as ‘CFS’ – that is the entire issue, and the vast majority of patients misdiagnosed with CFS DO NOT have M.E. and so have no more right to that term (or a variation of it) than to ‘cancer’ ‘diabetes’ or ‘multiple sclerosis.’

The distinction must be made between terminology and definitions. Changing the name of the bogus disease construct of ‘CFS’ to some variation on the term M.E. is not at all a step in the right direction. This move will actually be a huge step BACKWARD for everyone with M.E. and all those patients misdiagnosed with CFS. It will make it harder than ever for anyone to distinguish between ‘CFS’ and authentic M.E., and for those misdiagnosed with CFS to be able to receive a correct diagnosis and treatment finally. It must not be allowed to succeed. The groups proposing this action do NOT speak for, or represent, the M.E. community.

 

So how do we stop this abuse of science? Where do we go from here?

The only way forward, for the benefit of society and every patient group involved, is that:

1. The bogus disease category of ‘CFS’ must be abandoned completely.

Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda ‘CFS’ misdiagnosis. Some of the conditions commonly misdiagnosed as ‘CFS’ are very well defined and well-known illnesses and very treatable – but ONLY once they have been correctly diagnosed. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis. (It is not uncommon for people with cancer – which causes significant fatigue – to be misdiagnosed with CFS and to die needlessly due to a lack of appropriate treatment, for example.) Each of the patient groups involved must again be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group.

Physicians who diagnose ‘CFS’ in any patient experiencing new onset fatigue without looking and testing for the true cause of the symptoms do their patients – and themselves – a great disservice. Dr Byron Hyde explains that doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation.

 

2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. must be accepted and adhered to in all official documentations and government policy.

There were sound medical reasons for the creation of the name in 1956, and for the classification of the illness by the WHO in 1969; neither of which has changed in the interim . As Professor Malcolm Hooper explains:

The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The currently version ICD-10 lists M.E. under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. (2006, [Online])

Despite misleading claims made to the contrary by vested interest groups, there is well-documented evidence of inflammation of the brain and spinal cord in M.E. spanning over 50 years, but it is true that there is no evidence of inflammation of the brain or spinal cord in states of ‘chronic fatigue’ or ‘tiredness’ and other non-M.E. illnesses which may be commonly misdiagnosed as ‘CFS.’

M.E. is a distinct recognisable entity, with several unique features, which can be diagnosed relatively early in the course of the disease providing the physician has some experience with the illness. M.E. can easily be distinguished from various chronic fatigue states, and other unrelated ‘fatiguing’ illnesses. People with M.E. must be diagnosed with M.E. and treated for M.E., based on research which also involves M.E. patients again, finally. The M.E. community does not need to wait for official ‘permission’ to renew the name and scientifically and historically correct definition of M.E. These rights exist today (as they have since 1969) under the WHO ICD.

 

3. People with M.E. must immediately stop being treated as if they are mentally ill, or suffer with a behavioural illness, or as if their physical symptoms do not exist or can be improved with ‘positive thinking’ and exercise – or mixed in with various ‘fatigue’ sufferers in any way or patients with any other illness than authentic Myalgic Encephalomyelitis.

All forms of GET, and the abusive and unscientific form of CBT, must be banned for all M.E. patients. It is illogical and unethical (and a gross violation of basic human rights) that patients be routinely subjected to treatments which have zero chance of providing any benefit and such a high risk of serious and long-term harm, or death. People with M.E. must also be given access to basic medical care, financial support and other appropriate services (including funding for legitimate M.E. research) on an equal level to what is available for those with comparable illnesses (eg. multiple sclerosis or Lupus).

Currently many physicians and most consultants (for example, cardiologists, neurologists, chest physicians, rheumatologists, immunologists) have virtually no accurate knowledge about M.E. and therefore underestimate both its seriousness and the multi-system dysfunction it causes, so patients are simply dismissed and abandoned without support. This must change. The facts about M.E. must again be taught to medical students, and included in mainstream medical journals and already practicing physicians must be brought up to speed about M.E. It must be as unacceptable for physicians to be ignorant about M.E. as it would be if doctors were ignorant of the basic facts of multiple sclerosis, diabetes or any other common and serious disease. M.E. expert Dr Elizabeth Dowsett explains that:

M.E. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously! (2001a, [Online])

Myalgic Encephalomyelitis is a distinct infectious neurological disease of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of medically unexplained ‘fatigue.’ Patients with M.E. must be treated based on the scientific facts, rather than political and financial considerations.

 

What can you do to help?

Unlike people with HIV/AIDS, people with M.E. do not have an initial period of their illness where they are only mildly affected. M.E. is severely disabling even in the first week of illness. People with M.E. are almost all far too ill to stage huge protests, rallies and marches. Many with M.E. cannot even read enough to be able to understand what is happening, or they aren’t even aware that high quality scientific information on M.E. exists. Almost all so-called patient advocacy groups worldwide have sold patients out to the highest bidder and are now actively collaborating with our abusers. These groups are no longer advocates for patients with M.E. – indeed they are working directly AGAINST the interest of people with M.E. (These groups also do not help all those misdiagnosed with ‘CFS’ who do not have M.E.) The media has also sold-out and betrayed M.E. patients. The list goes on.

People with M.E. have only a tiny minority of the medical, scientific, legal and other potentially supporting professions (or the public) on their side. As Dr Elizabeth Dowsett explains:

As we approach the Millennium, it has to be acknowledged that the struggle for recognition of M.E. as a serious disabling organic disease with significant requirements for medical social, educational, and financial support has (due to media manipulation of public opinion) entered the realm of politics rather than the more desirable one of basic science.

As the Committee for Justice and Recognition of Myalgic Encephalomyelitis explain:

There is no immunity to M.E. The next victim of this horrible disease could be your sister, your friend, your brother, your grandchildren, your neighbour [or] your co-worker. M.E. is an infectious disease that has become a widespread epidemic that is not going away. We must join together, alert the public and demand action.

That is what is needed, for people from all over the world to stand up for Myalgic Encephalomyelitis.

We must all stand up for the truth, individual physicians, journalists, politicians, human rights campaigners, patients, families and friends of patients and the public – whether they are affected yet by M.E. or not. That is the only way change will occur, through education and people simply refusing to accept what is happening any more.

Yes there are powerful and immensely wealthy vested interest groups out there which will fight the truth every step of the way, but we have science, reality and ethics completely on our side and that is also very powerful. However, for this to be of any use to us, we must first make ourselves aware of the facts and then use them.

So what you can do to help is to PLEASE help to spread the truth about Myalgic Encephalomyelitis and try to expose the lie of ‘CFS.’

You can also help by NOT supporting the bogus concepts of ‘CFS,’ ‘ME/CFS,’ ‘subgroups of ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ and Myalgic ‘Encephalopathy.’ Do not support groups which promote these concepts. Do not give public or financial help to our abusers.

This appalling abuse and neglect of so many severely ill people on such an industrial scale is truly inhuman and has already gone on for far too long.

People with M.E. desperately need your help.

More information

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

To read more about how to help with the HFME's genuine M.E. advocacy campaign, and their campaign to help all those misdiagnosed with 'CFS' (that do not have M.E.) be given a correct diagnosis and treatment, please see the About HFME page.

Please also see: Why care about M.E.? This paper looks at issues such as: If you aren't personally affected as yet, why should you care about Myalgic Encephalomyelitis and want to help patients achieve the same basic rights as those with similar neurological diseases such as Multiple Sclerosis? Why should you care about whether or not the fictional disease category of 'CFS' is abandoned?


Additional relevant links:

Subscribe to the HFME newsletter!

To subscribe just click here

Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95