ME - The New Plague 2
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RECLAIMING THE PATIENT'S VOICE
STRIPEYSOCKS BLOG (not part of the book!)
Blog
BETTY PROVEN RIGHT
| Posted on May 30, 2015 at 5:49 PM |
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? For shame. Jane Colby STRIPEYSOCKS BLOG www.methenewplague.net |
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