"I know," wrote Zamiatin, "that
I have the very uncomfortable habit of saying not what is
advantageous at a given moment but whatever I believe to be the
truth. I never concealed what I think of literary servility,
toadyism, and coat changing. "
-- from: Introduction to
I keep being unwell and as I also have the same unfortunate habits as
Yevgeny Zamyatin, of whom more in the above link, that is to a
pdf (11 MB) of his best known book, a classic description of the
and mindset, of which more in yesterday's
Nederlog, I do maintain the quotation of his and my habits, but I
have today only a quotation of a British newspaper article with a brief comment.
The quotation is of an article by Sarah Hall in something a bit
quaintly called - for this non-Brit - "EDP24
Britain's National Newspaper of the year" (*). I
quote all, because I like it and because it supports my bitterly ironical
title, but I indented her quotations of others, and supplied some bolding
and a link:
centre for ME sufferers planned
Hope was last night offered to thousands of people with ME after it
emerged crucial talks were under way to establish a world class research
and treatment centre in Norwich.
Campaigners have spent years trying to improve the lives of people with
the debilitating condition, for which there is currently no cure and
affects 10,000 people in the eastern region alone.
Now talks between Dr Ian Gibson, the national
Invest in ME
charity, the UEA and NHS Norfolk have taken place with the view of
setting up a centre to properly research, diagnose and treat the illness.
If it goes ahead, it will be the first centre of excellence in the
country and firmly put Norwich on the map of advancing medicine and
encephalomyelitis), also known as chronic fatigue syndrome, is a
contentious illness because for years clinicians and other medical
professionals refused to recognise it and it was often dismissed as
“yuppie flu”, despite causing years of complex problems such as
overwhelming tiredness, swollen glands, painful muscles and joints, and
severe sleep difficulties.
However, years of campaigning and hard hitting inquiries in the condition
- one of which was held by former Norwich North MP Dr Ian Gibson - has
raised further awareness and understanding of the condition.
Dr Gibson said:
“This centre could totally change the lives of people with ME. At the
moment there is no proper diagnosis for ME and treatment is patchy. We
would do research here and, as this develops, we can treat patients from
all over the country and the rest of Europe.
“This is a great opportunity to treat chronically ill patients who
have maybe not had proper treatment in the past.
“There are 250,000 people [nationally] with ME and this could finally
make a difference to all of them.”
There are preliminary discussions to establish at the research centre
at the UEA - because the equipment and research facilities are already
there - with services commissioned by NHS Norfolk.
The service would offer early diagnosis, examination and treatment of the
illness, with diagnosis commissioned by NHS Norfolk and referals made
In Norfolk and Suffolk there are an estimated 4,000 people with ME from
the age of six and above.
Richard Simpson is the founder of Invest in ME which campaigns for
research and funding to establish causes and an understanding of the
illness. The independent charity will carry out the official campaigning
for funding for the centre once a formal agreement is made.
He said the research being proposed would be the
“most advanced possible”.
“ME is not often diagnosed properly because doctors often eliminate other
illnesses and then conclude it could be ME without proper tests. The
patients do not get treated properly,” he said. “Early diagnosis is so
important and this centre would help establish that happens.
“It will start smaller and just get bigger. At the moment nobody is
getting better. It is a hideous illness and people suffer a lot and some
die from it.
“There is no other illness which affects so many people yet is so
unrecognised and so underfunded. It is not right that people have to
travel abroad to get the right treatment. It would be so fantastic to
carry out all these functions in Norwich and the next few months are
crucial in terms of pressing ahead with this. We won't give up the fight
until we are treating ME properly.”
Mr Simpson, from Norwich, and his wife Pia set up the charity after
both their daughters developed ME. Annika Simpson, 24, has had it for 11
years and Jennifer, 20, for seven years.
They are basing the new centre on an American clinic called
Whittmore Peterson, an
institute for neuro-immune disease in Nevada which helps thousands of
people with ME through research, scientific developments and subsequent
The charity already has support from other charitable organisations and
Discussions will be going on over the next few months and once a decision
has been made, funding will begin to the tune of £150,000 a year.
A spokeswoman from the UEA said:
“Preliminary discussions have taken place, but no decisions have been
made at this stage.
“Whenever any new centre is proposed at the University, there has to be
very detailed exploration of logistics and implications for the
department concerned before any commitment is made.”
Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich
University Hospital would be become involved by setting up clinics, but
bosses have said they have no plans to see patients there so they are
looking at suitable services across the county.
In 2006, a parliamentary group headed by Dr Gibson spent a year looking
into ME, taking evidence from sufferers, carers and experts, and he
argued for massive investment, which has yet to materialise.
The reason why I quote and link is not that I know dr. Ian Gibson, for
that I do not (which illustrates nothing about dr. Gibson, other than my
relative ignorance), but because of this:
Richard Simpson is the founder of
Invest in ME which
campaigns for research and funding to establish causes and an
understanding of the illness. The independent charity will carry out the
official campaigning for funding for the centre once a formal agreement
Again I knew nothing about Mr. Simpson other than is in the article,
but I do know about
Invest in ME, which has
a fine website and
seems to be run by sensible people, who do sensible things, like
organizing yearly conferences on ME and
producing videos of these, while they also supply
a very helpful ME
What is also true is that £150,000 is very much money for me, but is
not much money for research - but then this seems to be meant to be real
bio-medical research, and that would be a great advance in Great Britain,
of which this then constitutes the first step.
So I do think this is good news, mostly because of what I know of
Invest in ME, which has
an interesting and useful site, that is also well designed.
Also, indeed the parallel with the
Whittmore Peterson Institute is
striking - with this bitter aside, that both the British state and
parliamentarians, and the American state, senators and representatives,
have each and all failed, and failed in major ways and for several decades, to
support proper bio-medical research into ME/CFS, and indeed had it blocked actively for over twenty years by the leading officials in institutions
they supported, financed or ruled, and have likewise failed to support
and failed to protect the human and civil rights
of very many persons with ME, who have uniformly received neither the
support nor the help people with other neurological diseases as listed by
the World Health Organization do get, and that persons with ME are and should be legally
entitled to receive as well.
P.S. Otherwise, I am today not fit for much:
It's the old dysfunctional belief system playing up, y'know.