Key concepts of the Professor Hooper ‘Engaging with M.E.’ DVD

Compiled by Jodi Bassett, May 2005

Professor Hooper is the Emeritus Professor of Medicinal Chemistry at the University of Sunderland, UK. He has been studying Gulf War Syndrome (GWS) extensively and this led him into the field of Myalgic Encephalomyelitis (M.E.). Professor Hooper also played a major role in defeating the scientifically unsupportable psychobabble used against GWS patients that continues to be used against those who have M.E.

• Myalgic Encephalomyelitis is an organic (physical) neurological disorder and has been classified as such with the code G93.3 by the World Health Organization (WHO) since 1969. The most recent WHO International Classification of Diseases, the ICD-10 also includes the terms Chronic Fatigue Syndrome (CFS) and Post-Viral Fatigue Syndrome (PVFS) as being synonymous with Myalgic Encephalomyelitis (M.E.).

• In contrast ‘fatigue’ is classified in the WHO’s ICD-10 as a mental and behavioural disorder with the code F.48. Fatigue is NOT the main feature of M.E., making it so in almost all of the definitions and descriptions of CFS has been a ploy by certain psychiatrists (and others with similar motivations) to underhandedly reclassify M.E. as a mental disorder along with ‘chronic fatigue.’ It is an attempt to turn a neurological illness into a psychiatric one through the misleading use of language. ‘Weasel words’ as Professor Hooper calls them.

• As well as focusing heavily on ‘fatigue’ all the definitions of CFS also exclude all of the cardinal symptoms and signs of M.E. which have been well documented for many decades. Instead these definitions are so vague and all encompassing that they select a ‘ragbag’ of patients with fatiguing illnesses of various aetiology’s (including the psychological) and some even specifically exclude those with legitimate observable signs of organic illness – such as ME/ICD-CFS patients! Patients with autoimmune features and neurological signs and symptoms are usually the most ill and as such they are excluded from studies of "CFS" or "chronic fatigue" undertaken by psychiatrists, so the results of many studies from which such patients are excluded are not representative of the true situation. Such studies will often not contain ANY patients with strictly defined ME/ICD-CFS and so the results of such flawed studies should not therefore be claimed to apply to ME/ICD-CFS patients as they so often are.

This is why the 2003 Canadian ME/CFS Criteria/Definition is so important for patients as it is a definition of the illness which describes the true neurological signs and symptoms of M.E and not just ‘chronic fatigue’ finally.

• The term ‘Myalgic Encephalopathy’ is also a very dangerous one for ME/ICD-CFS sufferers as it has no WHO listing at all, or any definition – when M.E. stands for ‘Myalgic Encephalopathy’ it doesn't actually mean anything. Myalgic ‘Encephalopathy’ is a trap being set for us and like the psychologiser view of the illness, it is not in our best interests. Despite assertions by certain psychiatrists (and others), it is also incorrect to deny the existence of CNS inflammation in ME/ICD-CFS – the supposed reason to use the term ‘Encephalopathy’. As with the use of the term ‘fatigue,’ the recent promotion of the term ‘Myalgic Encephalopathy’ is merely another attempt to strip patients of the protection contained in having an organic neurological WHO listing for their illness – one of the strongest and most valuable tools ME/ICD-CFS patients have and one which it would be disastrous to lose.

To support M.E. patients it would be extremely helpful if patients, doctors, politicians and the media were to be very careful to NEVER confuse ‘chronic fatigue,’ ‘fatigue’ or ‘fatigue syndrome’ with Chronic Fatigue Syndrome (CFS) as CFS is a completely separate and unrelated entity. These terms should NEVER be used interchangeably with CFS or ME.

The WHO neurological classification at G93.3 and the Canadian ME/CFS Criteria/Definition are the two strongest tools people with ME/ICD-CFS have and so it’s important that we protect them and use them as much as possible and that means, among other things, always using the correct terms. The correct terms according to the World Health Organization are Myalgic Encephalomyelitis, Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome.

• There are significant similarities in the symptomatology of a variety of ill-understood illnesses such as Gulf War Syndrome, Multiple Sclerosis, AIDS, Fibromyalgia Syndrome, Autism, Organosphosphate Poisoning and Multiple Chemical Sensitivity with those of Myalgic Encephalomyelitis BUT this does not mean that they all occur due to the same pathological or aetiological processes. It is important to note that these illnesses may be similar in some ways to M.E. but as with all of these illnesses, Myalgic Encephalomyelitis is also very much a separate, distinct and unique illness in its own right.

• In short, "OFFICIAL OBFUSCATIONS, DENIALS AND SOMETIMES DOWNRIGHT LIES." Industrial (financial) interests – including those of the Government – are actively influencing the course of what is ostensibly a scientific discussion. These readily proffered psychiatric explanations should not be accepted as if objective and based on sound scientific research.

• Certain psychiatrists (and others) claim that ME/ICD-CFS is caused by a combination of; perfectionist personalities, long term-stress, pressure at work, a history of trauma or abuse and/or laziness or inactivity as children and furthermore it is the patients continued laziness and ‘aberrant illness beliefs’ that are causing the continuation of symptoms. They also claim that a whole host of so-called medically unexplained illnesses (including IBS, FMS, MCS as well as ME/ICD-CFS) are all basically the same (mental illnesses) and will all respond to treatments of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).

• Despite considerable evidence showing such treatments are useless or even directly (and severely) harmful to ME/ICD-CFS patients, participation in such treatments is being tied to the receiving of benefits and support for people with ME/ICD-CFS in the UK. Sufferers will have a real fight on their hands to make sure they are not treated inappropriately as treatments are geared more and more towards CBT and GET. It is true that some patients from the ‘ragbag’ of patients diagnosed with loosely defined CFS some will be helped by such treatments but these are not M.E. patients. It is the manufacture of a mental disorder where none exists.

• The evidence is already there with regards to M.E., there is already ample evidence that it is an organic neurological disorder which occurs in both epidemic and sporadic forms, as well as of various treatments for the illness. Professor Hooper clearly shows that biomedical diagnostic testing is not only possible but should be done as a matter of course and that whilst there is no cure as yet, intelligent nutritional and other interventions can make a significant difference to a patient's life.

• Basic tests are NOT adequate for M.E. patients, more sophisticated tests however have shown a large variety of abnormal findings in ME/ICD-CFS patients in various bodily systems. Abnormalities are also visible on physical exam. The evidence is all there and has been there for some time, the problem is that it is not being looked at – not that it doesn’t exist (see the recommended books and articles list for more information). Not all doctors have fallen for the readily proffered psychiatric explanations of the illness however, and some have been working hard studying the illness for many years - indeed some doctors have been studying M.E. for over 50 years. There are a few real ‘M.E. Super Heroes’ out there!

• Professor Hooper states: "You are perfectly accurate both in medicine and in science, by saying to your GP, I have M.E., which is a neurological disorder, will you please assess me on those terms?" If he complains then tell him that the WHO backs up exactly what you are saying. The excellent Canadian ME/CFS Criteria/Definition then gives your doctor the tools to know how to deal with the illness.

• Professor Hooper explains that enteroviruses are a big factor in M.E., but are not the only organisms involved. These bugs open up the blood-brain-barrier in ME/ICD-CFS patients. This then allows neurotoxic damage to occur with additional damage coming from a 'leaky gut' process. A whole prolonged physical dysfunction is then set in place where complex molecular and immune responses cause physical damage to the sufferer.

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