edmesh Open Meeting – 19th October 2013

edmesh members were very pleased to welcome Dr Nigel Speight, now still busy in his retirement as Paediatric Medical Adviser to the ME Association, to the edmesh open meeting on the 19th of October, 2013, to speak about the work he did when Consultant Paediatrician at the University Hospital of North Durham.

Our speaker’s background

Early in his career Dr Speight saw his first ME patient, a teenage girl, and became convinced of the reality of ME as an organic illness. Gradually he became known as a doctor knowledgeable about, and sympathetic towards, the condition and its sufferers; to date he has seen 200 cases in Durham, and over 600 cases altogether from England, Scotland and Northern Ireland.

His main aim has been to provide an official diagnosis of ME for the children he examined who met the international ME criteria, and to offer understanding and sympathy to them, suggestions for treatment to their parents and GPs and referrals to other hospitals. He would often work with families to prevent the imposition of fines for non-attendance at school, or the refusal or withdrawal of state benefits, and to combat threats of Care Proceedings, leading to inappropriate or harmful treatments.

The role of viruses, and the mitochondria

Dr Speight referred to various pieces of work done by prominent ME researchers. Dr Betty Dowsett influenced him in the 1980s by giving a clear exposition of the clinical features of ME. As well as being a qualified doctor and surgeon, she held a Diploma in Bacteriology and acted as an Honorary Consultant Bacteriologist in the 1990s. Along with Jane Colby, former Head Teacher and ME sufferer, she published a study of ME in schools in 1995 in which they noted that ME/CFS case clusters were associated with virus infection, female predominance, and peak incidence in the early teens, and that there was a majority of case clusters in a district that had experienced suburban growth after much population influx recently from the building and expansion of new towns. Dr Dowsett explained the female predominance as being a hormonal influence, and the population influx as disturbing a “naturally acquired ‘herd immunity’”. Dr Dowsett also thought that there used to be much more exposure to germs in childhood, but that we now keep children so clean that they don’t have the same immunity to childhood illnesses.

It is one of Dr Speight’s beliefs that there is a genetic predisposition to ME, though we now know that there is often a stress or overload of some kind to switch the genes on. In one of Dr Speight’s own studies in North Durham, referred to later, he found that 38 out of 49 youngsters had a past history of migraine, and 28 of migraine in a first-degree relative.

He spoke of a study done in the UK in 2008 by Dr Sarah Myhill and Dr John McLaren-Howard on 71 ME patients diagnosed using the criteria of the Centers for Disease Control in the USA. The results showed a remarkable correlation between the degree of mitochondrial dysfunction and the severity of illness. The tests indicated which remedial actions, in the form of dietary supplements, drugs and detoxification, were most likely to be of benefit. The study concludes that mitochondrial dysfunction is strongly implicated as the immediate cause of CFS symptoms. It recommends that a properly planned and funded study should confirm the observations made here, with biochemical tests being done on CFS patients before and after remedial actions, and further work being done to establish whether the damage to mitochondrial function is a primary or a secondary effect.

Persistent microbes

Dr Speight explained that in some countries there are “clever tests for unusual germs”. In the USA, for example, Professor Garth Nicolson of the Institute for Molecular Medicine, California, specialises in diagnosing persistent chronic infections relating to arthritis, autistic spectrum disorders, CFS, fibromyalgia, Gulf War illness, Lyme disease, mycoplasmas, multiple persistent viruses (especially human herpes viruses) etc. The persistent microbes that are involved come in multiple stages or forms, and in various strains. They invade numerous tissue types and cell types, such as blood cells and immune cells.

Mycoplasmas are small bacterial organisms, not even taught about in many medical schools, which can cause chronic infections in neurobehavioural disorders (ASD, ADD etc.), fatiguing illnesses (CFS, FM etc.), autoimmune, rheumatic, and genito-urinary diseases etc. The bacteria damage lipids, important structural materials in living organisms, so that Lipid Replacement Therapy is needed, which involves taking some lipids in capsule form and antioxidants every day. Dr Nicolson believes that we are living in an increasingly toxic environment in the modern world, and that this is causing new infections to appear.

Dr Nicolson has examples of detailed practical treatments that are multi-anti-antibiotic, multi-factored and multi-staged, with nutritional supplements, antimicrobial foods, and mitochondria-energy-enhancing supplements, though he warns that patients should consult their own personal physicians for advice on exact dosing and schedules, which can vary among individuals. An example was given of a 60-year old Australian man who was given a transplant of abdominal bacteria and got completely better from ME, but was angry that he’d had to wait so long for a cure!

Good news from the Rituximab trials

Another treatment that Dr Speight regards as promising is the use of the drug Rituximab in Bergen, Norway, by Dr Øystein Fluge and Professor Olav Melle. This had been used on cancer patients, but an initial trial on three CFS patients produced significant improvement within three to nine months. Rituximab works on B cells of the immune system that are overactive, too numerous, or dysfunctional. The body’s stem cells then produce a new population of healthy B cells.

In a second study in 2011, thirty patients meeting the 1994 Fukuda definition of CFS, 80% of them female, were chosen. Half were treated with Rituximab and the other half with a placebo in a double-blind trial. The result was that 67% of the Rituximab-treated group made a lasting improvement within seven months. Drs Fluge and Mella state that the results support the concept of CFS as an autoimmune disease, and that the treatment seems to indicate “gradual elimination of an autoantibody”. One patient, a young woman of 20, who was confined to bed in a darkened room, was successfully treated and before long resumed skiing!

There has been a lot of international coverage of the results, and now Dr Fluge and Professor Mella are beginning a confirmatory trial in January 2014, part-funded by the Norwegian government. In the UK, the charity Invest in ME is actively fundraising for a Rituximab trial, with Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College, London, as adviser.

Immunoglobulin and vitamin B12

Dr Speight also spoke favourably of immunoglobulin as a treatment for ME. It is used as a modulating agent in an increasing number of immune and inflammatory disorders. Administered intravenously, it is regarded as a product with an excellent safety record. There are, however, many questions for the future about supply, cost, dose and mode of intake, for example, as it could be required for use in a wide range of conditions. In a study of 49 cases in North Durham by Dr Speight between 1988 and 1996, three of the six most severely affected patients who received immunoglobulin treatment made virtually complete recoveries during the follow-up period.

Another treatment found helpful by Dr Speight is Vitamin B12 therapy. Vitamin B12 deficiency is a syndrome in itself – not the cause of ME, but it can be a factor, affecting the working of the brain.

The future

Dr Speight concluded by explaining that a number of doctors are reluctant to diagnose ME nowadays because of the lack of a clear test to confirm it, and because of the controversies about treatment surrounding it. They may diagnose it as “Chronic Pain Syndrome” or a psychological condition, when they will be able to offer the treatments officially recognised, such as graded exercise therapy, physiotherapy or cognitive behavioural therapy.

In the near future, Dr Speight and his like-minded colleagues hope that all children with ME will be listened to, believed, and treated gently. He is convinced that ME is a physical illness, and that it will eventually be possible to identify more and more of the unfamiliar organisms that may cause it and to treat them in unusual ways.

Dr Speight has been consistent and courageous in pursuing his course of action and is continuing to do so, telling us that he has had recent and ongoing involvement as a paediatric adviser to family members of severely ill children. His informed reports, quoting, for example, the 2006 NICE Guidelines on no exercise benefiting severe cases, and the need for “informed consent” by the patients and their parents or guardians, have reversed Child Protection proceedings more than 20 times.

These are Dr Speight’s “little victories”, but they total up as a large contribution to the health and happiness of some very vulnerable youngsters.