Dr Dowsett, a genuine hero for M.E. patients, died on June 14 in a nursing home in Cambridge at the age of 91.
Dr Dowsett was born in Newport and studied medicine at Edinburgh University, working first as a GP and then as a microbiologist. She began to focus on M.E. in the 1960s and went on to work with leading M.E. experts then and now, Dr Ramsay and Dr Richardson, and to see thousands of patients with M.E.
Dr Dowsett’s high quality work saw her became one of the most experienced and knowledgeable M.E. experts in the world. Her papers on M.E. are still relevant and essential reading today for patients and doctors.
In a field rife with sickening self-promotion, greed and corruption of basic science and facts - all at the patients’ expense - Dr Dowsett’s work was and is a shining beacon of hope and sanity.
Dr Dowsett is one of those very rare caring and intelligent doctors that has put truth and patients first and really done all she can to try and help the M.E. patient and the M.E. cause. If only we had hundreds more doctors like her the world for the person with M.E. may be very different today.
Dr Dowsett fought so hard to have the distinct neurological and enteroviral disease M.E. separated out from 'CFS' and various vague fatigue subgroups and wastebasket diagnoses. This fight is just as necessary today, sadly. The facts have not changed and nor have the political hurdles we face (except that there are far more of them as so many 'advocacy' groups have now sold out to the 'ME/CFS' concept they were created to fight against, yet still bafflingly enjoy widespread patient support).
M.E. patients everywhere owe Dr Dowsett a huge debt of gratitude. Words can’t express how grateful we are (and I am) for Dr Dowsett’s work, caring, selflessness, integrity and insights. She is a genuine hero. Sincere best wishes to the Dowsett family.
'M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile.' Dr Dowsett
'To suggest that M.E. is merely one subgroup amongst this heterogenous collection of physiological and pathological states, makes thus making any attempt at differential diagnosis between them impossibly expensive to pursue; to suggest that diagnosis must be delayed for 6 months, vitiates any real attempt at virus investigation, especially among the young.' Redefinitions of M.E. - a 20th Century Phenomenon by Dr Elizabeth Dowsett
'The term "Myalgic encephalomyelitis" (M.E.) was henceforth used in the UK, Canada and Australasia to define an illness which, following a virus infection, leads to multisystem involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs but which is primarily due to central nervous system dysfunction and subsequent breakdown in bodily homoeostasis. Confirmation of this hypothesis was supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays.' Research into M.E. 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett
'There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised.' Time to put the exercise cure to rest? by Dr Elizabeth Dowsett
Brain problems in ME – is there a simple explanation? by Dr Elizabeth Dowsett
"A good memory demands normal functioning of almost all areas of the cerebral cortex, the basal nerve centres of the mid brain (eg the thalamus and hippocampus) and their interconnecting pathways through the brain stem. Fluctuations of metabolic activity in these areas (often made worse by physical and mental exhaustion) have been reported in SPECT scans of patients with ME,(2) the vast majority of whom complain of difficulty with short-term memory."
Thyroid Function In ME: Is There A Major Diagnostic Problem? by Dr Elizabeth Dowsett
"It as been suggested that 'scandalous medical ignorance leading to an epidemic of undiagnosed thyroid deficiency, underlies the increasing prevalence of ME in modem times"(1) Can such a challenge be ignored? Does it stand up to my own experience of clinical and laboratory medicine in the NHS (including the years of epidemic and pandemic ME between 1965 and 1990)? Of course not! - but first we have to define the thyroid problems under discussion."
A Rose by Any Other Name by Dr Elizabeth Dowsett
Both the earliest definition (HOLMES et al, 1988) and its revision (FUKUDA, 1994) elevated tonsillitis, glandular enlargement and fatigue to unreal importance while overlooking the characteristic encephalitic features of the genuine illness. These mistakes also inflated the possibility of a psychiatric diagnosis, leading to the incorporation of such a heterogeneous population of psychiatric and non-psychiatric causes later on, that research groups of different persuasions were unable to compare results or evaluate treatment.
The tools we can use today to study the brain offer possibilities which were unimaginable 50 years ago2. These include Molecular Biology: for example PCR – a microbiological technique capable of amplifying and identifying minute fragments of viral genes, hidden away in internal organs (such as brain, heart or muscle 3) while a test for rapid diagnosis (within five hours) is currently available. These tests indicate that viruses from the polio group, or related to it, are involved both in the late effects of ME and the Post Polio Syndrome 4. Brain Imaging: the use of CT, MRI, SPECT and PET scans clearly indicates that metabolic dysfunction in the brain stem and the spinal nerve radiations which transverse it, are initially associated with viral (inflammatory) damage and are the major cause of the cardinal symptoms of ME – central fatigue, stress induced weakness, autonomic nervous dysfunction and the breakdown of homoeostasis over hormonal and other vital functions5.
Time to put the exercise cure to rest? by Dr Elizabeth Dowsett
There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion 1. And, on follow up over decades (rather than weeks or months), the average person so disabled is found to be functioning (as a student, employee or parent for example) dangerously near their energy limits. The prescription of increasing exercise is such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive.
[In other words - YES!]
The Late Effects of ME by Dr Elizabeth Dowsett
"The number likely to be affected by the post-polio syndrome has been calculated as between 200-270/100,000 currently, but no account has been taken of survivors from non-paralytic polio which could easily double that figure. Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.
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![11,12,13]"
Pleconaril - A New Drug For Enteroviral Infections by Dr Elizabeth Dowsett
If the American multicentre placebo controlled randomised trial of PLECONARIL in neonatal disease is successful, what a chance we have to treat, stop and prevent enteroviral illness now! Please talk to your MP as soon as possible about why similar studies are not being carried out within the UK despite large amounts of money being provided!!
Redefinitions of ME - a 20th Century Phenomenon by Dr Elizabeth Dowsett
"If the cause of a disease, the way in which it is acquired and the processes by which damage is caused are known, no definition is needed. To the very few physicians still practicing today who began seeing patients with this illness some 40 years ago and who have continued to record and publish their clinical findings throughout, the current enthusiasm for renaming and reassigning this serious disability to subgroups of putative and vague “fatigue” entities, must appear more of a marketing exercise than a rational basis for essential international research. It was not always so unnecessarily complicated!"
Is Stress more than a modern buzz word? by Dr Elizabeth Dowsett
"The major disadvantage of this illness is not a medical one but relates to a social climate of opinion in the media and medical press, which ascribes this serious neurological disability to some type of “personality disorder” rather than to underlying organic causes, of which we now have overwhelming research evidence. While this monstrous distortion of the facts blames the patient for deliberately causing and maintaining the illness, it conveniently absolves the statutory caring agencies from caring."
The Impact of Persistent Enteroviral Infection by Dr Elizabeth Dowsett
By 1972, a distinguished group of clinicians and scientists had set out to share information, form research groups and hold national and international conferences related to the problems of ME. Following successful vaccination against the three polio viruses during the early 1960s over 60 epidemics of atypical, non paralytic polio had been recorded in the UK alone. It was obvious that (since Nature abhors a vacuum) the non polio enteroviruses were naturally filling the gap(6), and demonstrating their potential for inducing a serious neurological disease of considerable chronicity, mainly affecting school children and middle aged adults in the most important and productive years of their lives. Most of the famous London teaching hospitals were involved, at that time in investigating epidemics and in subsequent research while links were forged with international institutions in USA, Canada, Europe and Australasia, facing the same problems.
Research first published in 1975(7) indicated that the enteroviruses (which triggered the illness) belonged to a vast group of viruses (many of them at that time yet to be discovered) which were able to survive persistently in the human body as an uncoated form of intracellular genetic material, thus avoiding direct challenge from the immune system. Simple (indirect) laboratory confirmation of their presence based on blood tests, was available in most NHS laboratories without let or hindrance, while the European enterovirus reference centre at Ruchill Hospital in Glasgow, provided expert identification. It was clear from their work that epidemics occurred at 10 year intervals and pandemics (world wide spread) were approximately 20 years apart. By 1987, famous research workers, including Drs Ramsay, Richardson and (from Canada and the USA) Byron Hyde and David Bell, Professors Mowbray and Banatvala and scientists of the status of Len Archard and (from the USA) Roger Loria and Richard Bruno and Nancy Frick, were able to enlighten and to back up the hundreds of GPs and NHS consultants dealing with an ever increasing number of seriously disabled patients. The potential of this disease to disable children and interrupt their education was realised(8) and (in the early 1980’s) the late effects of polio were rediscovered (earlier reports dated from the late 19th century).
Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE! by Dr Elizabeth Dowsett
WHAT IS RESEARCH? It is simply an attempt to discover the truth. However, even in 1999, this search may still concentrate on one of 2 alternate pathways:
a) The METAPHYSICAL (or philosophical) route which seeks to establish truth purely by reason and argument. b) The PHYSICAL (or scientific) path which sets out to determine facts by systematic investigation of material events and by experiment.
The metaphysical approach bears much the same relationship to the scientific as ASTROLOGY (which involves the influence of the stars on human affairs) does to ASTROPHYSICS (which determines the chemical and physical composition of astral bodies).
...1988 The metaphysical approach ousts science once again. Although research funding for the study of ME is minimal in the UK, the major sources (totalling some £5 million in recent years) are non governmental agencies such as the Pharmaceutical and other industries. The major beneficiaries are, without doubt, members of the psychiatric profession who have exhumed ancient terms such as “hysteria” and invented new ones such as “somatisation” to explain that patients suffering from ME perpetuate their own illness. Previously reputable medical journals concur with this strange philosophy(11.)
A new definition for ME. Following successful immunisation against poliomyelitis in the early 1960s and the removal of 3 strains of polio virus from general circulation in the countries concerned, the related non polio entero viruses rapidly filled the vacancy. By 1961, the prevalence of diseases (such as viral meningitis) caused by these agents soared to new heights. In the mid 1980’s, the incidence of ME had increased by some seven times in Canada and the UK, while in the USA a major outbreak at Lake Tahoe (wrongly ascribed at first to a herpes virus) led to calls for a new name and new definition for the disease, more descriptive of herpes infection. This definition based on “fatigue”(10.) (a symptom common to hundreds of diseases and to normal life, but not a distinguishing feature of myalgic encephalomyelitis) was designed to facilitate research funded by the manufacturers of new anti-herpes drugs. However, a “fatigue” definition (which also omits any reference to children) has proved disastrous for research in the current decade. Whether in its original form or in the 4 redefinitions which have followed, most research workers, led by the Americans are now calling for an urgent change (omitting “fatigue”) so that like can be compared with like in international ME research.
STEM CELLS IN THE ADULT HUMAN BRAIN - Good News for ME? by Dr Elizabeth Dowsett
During the week ending April 27th 2002, we were able to listed to two actors speaking on TV and radio about their recovery or hope of recovery, from formerly fatal illnesses. The first (an English actor) recalled his recent recovery from leukaemia and current return to a busy life on stage and film, while the second (a Canadian) called himself a “lucky man” to be still working full time in his chosen career despite having recently “come out” with a diagnosis of Parkinsons disease for the past 5 years. Their confidence will be well founded if we can convince our present Health Service Managers to support serious research into prevention (by the work described above) of a wide range of chronic neurological and other illnesses still shamefully neglected and deteriorating (3.)
ME in the UK School Population by Dr Elizabeth Dowsett
"Of all the symptoms associated with ME/CFS, disturbance of cognitive function is the most disabling and long lasting in both pupils and staff 3.. It induces prolonged difficulties in maintaining wakefulness and attention, in concentration and memory, in language and mathematical ability and in appreciation of shape and judgment of distance which, combined with motor dysfunction affecting balance and fine motor control interferes with practical tasks and independence. Funding for educational research 4. into the correct management and educational needs of those affected (such as that already received by individuals with other movement, speech or cognitive disorders) would be well repaid by preventing the repaid loss of educational potential in pupils at an age when brain development is at its peak."
Mobility problems in ME by Dr Elizabeth Dowsett
"The symptoms of this multi system disease are characterised by post encephalitic damage to the brain stem (1) (which contains major nerve centres controlling bodily homeostais) and through which many spinal nerve tracts connect with higher centres in the brain. Some individuals have, in addition, damage to skeletal and heart muscle."
Theres no smoke without fire! Some comments on the tendency to relapse in ME by Dr Elizabeth Dowsett [This text seems to be no longer available on the 25% Group website]
"HOW CAN A RELAPSE BE DISTINGUISHED FROM A MINOR VARIATION FROM "NORMAL"? Many patients have told me that this can be recognised by a sudden return of the very distinctive "malaise" accompanied by a generalised aching, nausea and dizziness (so similar to that of influenza) which ushered in the initial illness. Although, as the patient gets better, this sensation diminishes in further relapses it is obviously a reminder that the battle between virus and immune system has not yet completed died down."
Differences between ME & CFS by Dr Elizabeth Dowsett
"There are actually 30 well documented causes of ‘chronic fatigue’. To say that ME is a ‘subset’ of CFS is just as ridiculous as to say it is a ‘subset’ of diabetes or Japanese B encephalitis or one of the manifestly absurd psychiatric diagnosis, such as, ‘personality disorder’ or ‘somatisation’.
ME is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile"
Can hysteria be diagnosed with confidence? by Dr Elizabeth Dowsett
[A review of the latest research]
"This comprehensive review, mainly of the work done by Professor Behan’s team in Glasgow begins with EPIDEMIOLOGY which, it is pointed out, has become a numbers game depending upon which ever ‘CFS’ definition is in vogue, and that the disease, in endemic or epidemic form, presents with a ‘flu like respiratory or gastrointestinal illness in 80% of cases’. A very thorough and detailed account is then given of symptoms, laboratory and other investigations. Despite some minor inconsistencies with previous advise, the review is especially valuable for this section and for its 89 references to world literature."
MEDICAL RESEARCH COUNCIL (CFS/ME RESEARCH ADVISORY GROUP) DRAFT DOCUMENT FOR PUBLIC CONSULTATION, Dr Elizabeth Dowsett, DECEMBER 17th 2002
This interesting forty page paper is divided into nine sections and includes thirteen references, with Annex (1) relating to the composition and CVs of the research group and Annex (2) a summary of the previous public consultation questionnaire (November 2002) unrelated to the present paper. As much of the material overlaps between sections, I have chosen to concentrate on the very explicit "mission statement" (page 5 para 18). This focuses on seven strategic themes reflecting the headings used in the remainder of the document and the research recommendations of the CMO’s Working Party (1999 – 2002).