'When there is a group of people being treated with
unkindness and injustice, their suffering either ignored or disbelieved, then
it is likely that some Quakers will intervene to try to do something about
it. And so it is with the disease
popularly known as ME although scientists prefer to call it Chronic Fatigue
Syndrome (CFS).' Anne Faulkner wrote last year.
'When in the 1980s I was diagnosed with the illness I was
appalled to find the situation where sufferers were enduing pain and distress
but their doctors were either ignoring their problems or abusing them,
insisting their illness was imaginary.
Fortunately, there was a group of doctors and scientists who were
alarmed at the increasing prevalence of the illness and were anxious that a
research body should be formed and this is where Quakers stepped in.
My husband, Hugh Faulkner, and I, both members of Jordans
Meeting and both experienced in running a charity, offered to undertake the
establishment of a research foundation if we had the backing of these doctors
and scientists. This was
enthusiastically welcomed and so the organisation was formed. We had no money, so all had to be done on a
voluntary basis. We turned to Jordans
Meeting and soon the majority of the part time staff were members of our
Meeting. We needed Trustees to oversee
the organisation and again we turned to Quakers and soon we had a board of
Trustees of whom four were members of the Society of Friends. In 1997 Hugh died and I took over the
directorship alone.
There was one other contribution made by Jordans
Meeting. Ian James, an attender who was
a consultant physician at the Royal Free Hospital, was conducting a research
study into CFS/ME, but more importantly, he ran a CFS/ME clinic which produced
outstanding results. Sadly he died
before the study was completed leaving despairing patients behind.
In the twenty one years since its inception the research
organisation, which was named the CFS Research Foundation has made an important
mark on research worldwide. We have an
impressive portfolio of papers published in distinguished scientific journals
covering the studies funded by the Foundation but, perhaps more importantly, a
distinguished scientist wrote: “The Foundation may be proud of what it has
achieved, not only from the work funded directly but also in helping bring
about recognition that CFS is a genuine disorder that merits significant
research spending nationally and globally” and another scientist wrote: “We
recognise the pioneering work of the Foundation. You have a very important mission and one
that deserves full support.”
I have often wondered to what extent the Quaker attitude to
business has influenced this organisation.
I can’t remember ever having a vote in either Research Committee
meetings or Trustees’ meetings.
Decisions are always consensual.
In an area where bitter arguments and strife were paramount the
Foundation remained aloof and concentrated entirely on research.
When we came into being in 1993 there was little research
into CFS/ME and what there was, was of poor quality. It was imperative that this should be
changed. We formed a Research Committee
of scientists pre-eminent in their fields.
Over the years four Fellows of the Royal Society have joined us. It was decided that the Foundation should
only fund research of the gold standard.
We knew this was bound to impress scientists and the Trusts we were
approaching for funds.
The most difficult problem we had facing us was the attitude
of many sufferers to scientists, doctors and to each other. At the same time doctors and scientists had
entrenched ideas and CFS/ME became a very contentious issue. We might have looked to journalists to show
the suffering being caused by the illness, but on the whole journalists decided
to give the subject a wide berth because whenever they wrote anything on the
subject they received loads of what could only be regarded as hate mail. The most damaging effect of this was that
scientists turned their backs on research into the disease, they could not
afford to become involved in such muddy waters.
Naturally the Foundation received despairing letters from
patients, but we refused to become embroiled in the arguments. Was this again the Quaker approach? We pointed out that only research could find
the true answers and we were pulling out all the stops to take this forward but
we were not going to be involved in arguments.
For several years the Foundation has funded studies
examining the basis of the disease by concentrating on comparing the genes of
CFS/ME sufferers with those of normal healthy people and gene research is still
at the top of our agenda. But we realise
that this is likely to be long term research so we are funding a study
examining the reasons for the devastating pain endured by the majority of
sufferers so that therapies may be found to alleviate or eliminate this pain.
Friends do not usually become involved in medical research
or attempting to change attitudes to an illness with the notable exception of
the establishment and work of The Retreat.
I have often wondered why Friends were so determined to do something
about this illness. It may have been
knowing that there are 600,000 people so affected with little being done for
them. It may have been the knowledge
that 25% of these people were virtually prisoners in their homes, many bedbound
for months or years. Whatever the reasons
it must be acknowledged that Friends, through the CFS Research Foundation, made
an important contribution in changing the attitude to the disease in the
general population, but more importantly among doctors and scientists. Research has gone ahead in a way it had never
done so before.
Sadly, the influence of Friends has almost disappeared. Over the years our Quaker voluntary helpers
have grown too old or moved away and I am the only Quaker Trustees left. Because of my ME, while I work from the office
in my home, I am unable to go to Meeting . So I have not been able to talk to Friends about our work and so find
new Friends to join us, but the real need is for Quaker Trustees and I would
hope that some Friend may feel able to join us and help to keep going the
Foundation’s belief that while research must go ahead there is no room for
bitterness and fighting between sufferers and doctors and scientists. The Foundation still needs Friends to keep
this vision alive.'
Anne Faulkner - 29 April 2013.
Sadly, Anne died not long after sending me this article. I know she wanted it published.
Sadly, Anne died not long after sending me this article. I know she wanted it published.
