BETTY PROVEN RIGHT
Why am I not surprised to hear yet more evidence that the renowned microbiologist Dr Elizabeth Dowsett, who always insisted that ME is a persistent EnteroViral infection, was right?
It was June 2006, the last time I saw Dr Dowsett before age and ill health confined her to residential care. It was a Tymes Trust Open Day on a sunny summer's afternoon, hosted by Sally's nursery garden and tea rooms in Essex. Visitors of all sorts were there, including young members of the Trust and their parents. Already retired, Betty was happy to be with us. She was in good spirits, despite knowing that there was much still to be done before ME would be extricated from the “chronic fatigue” empire. It didn't belong there then and it doesn't belong there now. She was scathing about the matter!
Classic ME is so potentially severe and chronic that calling it fatigue is like calling a world catastrophe a mild inconvenience. For anyone who gets severe ME, it IS a great catastrophe. From my point of view, I think it was quite wicked to come up with such an inappropriate and demeaning name for a disease that in my case confined me to bed, destroyed my career as a head teacher, and taught me what a real test of pain and endurance can mean. Doctors encountering their first case of severe ME can't believe what they're seeing. Nothing they've been taught has prepared them for it. It's not surprising that so many families find themselves investigated by social services, suspected of causing it.
On that summer's day, I recall feeling none too good. Efforts have to be made at any public event, however enjoyable they may be, and we often pay the price for that, don't we? That's why I never attend any conference at which I am not speaking. My latest speaking engagement was an address at the Trust's 2015 ME Awareness event, when I presented our Statement on “Equality and ME”, which can be used to help obtain a child's rights. I explained how this work developed from last year's focus on injustice.
The biggest injustice of all is that ME was ever sucked into the fatigue empire. Dr Dowsett was right; those of us with classic ME are fighting a persistent virus, and the latest research by Dr John Chia, with whom the Trust has worked, is building up more of that picture. Live tweets by Phoenix Rising from this week's London conference reported that he told the audience how enteroviral RNA was found in the tissues of a suicide patient, and spoke of his personal connection with this disease, diagnosing his own son with an enteroviral infection in 1998. He described his research since then, searching for the virus in body tissues. He has of course been singularly successful in this, publishing papers along with his son, who has been working alongside him. He explained that the stomach is a primary site for viral replication. Some years ago he let Tymes Trust have his diagnostic protocol and some of our members were tested.
For years I had maintained that until a doctor came along whose close family was affected, and who would then begin to investigate, we were not likely to see the 20 century enteroviral studies of Len Archard and others validated and expanded upon. And so it has proven. Dr Chia is the one scientist to take up and carry forward the Dowsett Olympic torch. Long may he continue. Why are no other scientific bodies assisting, replicating, and funding this vital work?