Tuesday, 6 May 2014

QUAKERS IN FIGHT AGAINST ME


'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.