Jane Colby/ Polio/Enteroviruses/ /Me/CFS

[Guest guest]

{Testimony to the Gibson (Parliamentary) Inquiry in the UK}

From Jane Colby :

STATEMENT BY THE YOUNG ME SUFFERERS TRUST

May be forwarded.

The Trust's Presentation to the UK Parliamentary Group on Scientific

Research into Myalgic Encephalomyelitis (ME) will shortly appear at

www.tymestrust.org The complete text follows, and may be used for

newsletters.

Oral Hearing 1

Tuesday 18th April 2006-05-09

Chair: Dr Ian Gibson MP

by

Jane Colby

Executive Director

The Young ME Sufferers Trust

Introduction

I am here both as Executive Director of The Young ME Sufferers Trust,

but also on my own behalf as a former severe ME sufferer.

The Trust has just funded, with MERGE and a contribution from Search ME,

the first biomedical research in children at Ninewells Hospital at the

University of Dundee, looking at whether previous findings of

abnormalities in the blood vessels of adults with ME/CFS are also

present in children. We are a purely voluntary charity; everyone at the

Trust gives their time free of charge.

We have very specific recommendations to make regarding research into

ME.

Presentation

In 1985, I was Head Teacher of an Essex school when I developed ME from

a sackie B viral infection, one of the enterovirus family and a

relation of poliomyelitis.

The day it began is etched in my memory. The late Housing Minister, Ian

Gow, was due to arrive for a luncheon at the school; I was waiting for

him with the welcome party when I was suddenly struck by terrible pains

in my back. I thought I was getting 'flu, but it wasn't the 'flu.

Do not let anyone tell you that this is like having 'ordinary' flu. I

have never been so ill in my life. I thought I was dying. I was in

terrible pain, could not walk, could not think or talk properly, lost

much of my vocabulary, and I could not look after myself, nor even chew

food without taking a rest during each mouthful. For years, I was

bedridden and then in a wheelchair, relapsing each time I started to

improve and tried to get back to work. This was a chronic and very

severe illness.

Eventually I left my profession in order to try and regain my health.

During my years of illness I was asked by a consultant microbiologist to

help support children with ME, and thus I realised what was happening to

children with ME.

In 1996 my first book 'ME - The New Plague' was published, tracing the

link between ME and polio. It included much about children and young

people with ME and is the source of many of the ME statistics still in

widespread use today. This book is in the House of Commons Library and

the House of Lords Library. By coincidence, that year another book was

published with a similar title - 'A Summer Plague' - describing what

polio did to children.

ME is a parallel with polio. With the aid of historical documents and

accounts of epidemics of polio and ME, my book demonstrated how ME has

taken over as vaccination against polio eliminated competitor viruses to

those that are known to be implicated in ME.

In 1997, my five year study of the pattern of ME in UK schools, carried

out with Dr Dowsett, was published in the Journal of Chronic

Fatigue Syndrome. This is the biggest study ever carried out into ME. We

studied a school roll of 333,024 children and 27,327 staff. We

discovered that ME is the biggest cause of Long Term Sickness Absence in

schools, in staff as well as pupils, something since confirmed by other

smaller studies. Indeed, around 90% of enquiries to the Trust's Advice

Line have concerned relapses and other difficulties caused by

educational demands.

Not only did we show that ME is disabling and chronic in children, but

the disease also showed an infectious pattern - a clustering pattern.

Both I, and the Trust, believe that children are the epicentre of this

illness. We are confirmed in this view both by evidence and by a

consultant microbiologist. There were then, and continue to be now,

mini-epidemics in many schools.

In 2005, JKS Chia reviewed the evidence on enteroviruses. After

explaining the coining of the term Chronic Fatigue Syndrome two and a

half decades ago, he states:

'Initial reports of chronic enteroviral infections causing debilitating

symptoms in patients with CFS were met with scepticism, and had been

largely forgotten for the past decade. Observations from in vitro

experiments and from animal models [have] clearly established a state of

chronic persistence through the formation of double stranded RNA,

similar to findings reported in muscle biopsies of patients with CFS.

Recent evidence [has] not only confirmed the earlier studies, but also

clarified the pathogenic role of viral RNA through antiviral treatment.'

Dr Chia's review summarises the available experimental and clinical

evidence that supports the role of enterovirus - the virus family that

includes the polioviruses.

He quotes tests demonstrating that antibody concentrations against

enteroviruses in patients with CFS were still raised more than 48months

- two years - after initially showing such raised antibody

concentrations. Pointing out methodological flaws with studies that once

threw doubt on the enteroviral connection, he concludes:

'Thus, renewed interest is needed to study further the role of

enterovirus as the causative agent of CFS. [.] A well designed,

randomised, controlled trial of antiviral treatment will ultimately

provide crucial information on the pathogenic role of enterovirus in

patients with CFS and other chronic diseases.'

We are presenting the Group with a marked up copy of Dr Chia's Review

and a copy of the evidence we gave to the Parliamentary Select Committee

on Special Educational Needs, as we believe that this may be relevant to

your work.

The Trust's Recommendations

* That an enteroviral study be set up as suggested by JKS chia in his

review The role of enterovirus in chronic fatigue syndrome, J.Clin.

Pathol. 2005;58;1126-1132

* That ME/CFS be made notifiable in schools - staff as well as pupils -

in order to demonstrate the pattern in schools; there are mini-epidemics

and clusters.

* That all previous work on ME epidemics over the decades, eg during

the whole of the twentieth century, be revisited; it has been sidelined

in the adoption of the unsatisfactory name Chronic Fatigue Syndrome.

* That there be further study of cognitive impairments caused by ME/CFS

* That the Group should appoint, in some capacity, an experienced

microbiologist to assist it in its work.

Jane Colby

Executive Director

The Young ME Sufferers Trust

PO Box 4347

Stock Ingatestone

Essex CM4 9TE

Tel 01245 401080

www.tymestrust.org

END OF STATEMENT

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