am -- the long established Sussex, SE-UK, and well beyond, self-help, medic=
al and political campaigne support group, and pages 18-19 of their current =
September 2011 Journal.=0A=A0=0AFarewell from Professor Pinching.=0A=A0=0AS=
o it is now time, as I retire, to bid you goodbye. By October, I shall have=
stopped clinical and academic work completely. The Beatles sang about my l=
ast birthday, so this is the usual time for transition, and being a clinica=
l academic, I am stopping after academic year end. My career has been very =
fulfilling, but also very demanding - with far too little time and energy f=
or my interests outside medicine and academic life. I encourage patients to=
look at work-life balance, so I thought I should check it out myself! I ha=
ve definitely done the work, but would like to do more "life" whist I am ab=
le.=0A=A0=0AOver the years, my work has included: studies on how the brain =
processes the sence of smell (my first scientific paper was published 42 ye=
ars ago!); studies on how myasthenia gravis - a different condition of weak=
ness and fatiguability - is caused through autoimmunity, and how that chang=
es the approach to treatment; understanding the nature and treatment of sys=
temic vasculitis, in which there is inflammation of blood vessels, with wid=
espread impact on body functions; understanding, diagnosing and treating di=
fferent sorts of immune deficiency, congenital and acuired, including that =
induced by treatments; responding to the emergence of HIV and AIDS, as a ne=
w and very challenging immune deficiency, from the earliest years, clinical=
ly and scientifically, but also in public policy and public understanding; =
and, of course, clinical, scientific and policy work on CFS/ME. These last =
two areas have been the main focus of my career for nearly thirty years.=0A=
=A0=0AAs a clinician and scientist, it has been an extraordinarily full and=
enriching career. I have learnt a lot about people, and about how things w=
ork (or don't!) There remain many frustrations about what we still don't kn=
ow or can't do. But I have tried to remain pragmatic and work with what we =
do know and can do, whilst trying to extend the boundaries.=A0 As a clinica=
l scientist, I have always been nurtured, informed and inspired by my patie=
nts and what they tell me. I have tried to do my best to help, but I have b=
een keenly aware in many respects how little that is for people facing the =
adversity of disease and its effect on their lives. I am sorry that I will =
at times have fallen short of people's reasonable expectaions. But for some=
, I hope I have been a useful "mountain guide" through the treacherous terr=
ain of illness.=0A=A0=0AWhat will I miss? Above all, I shall miss my patien=
ts and the oppotunity to work with them on their life's journey, helping th=
em to see how they can make sense of themselves and the world, as revealed =
by the unwelcome intrusion of disease. I shall miss that sense of extraordi=
nary resilience that people can show in the face of adversity and loss, gai=
ning fresh perspective and inner strength, whilst they make progress in wha=
tever way is feasible, often supported by very special family or friends as=
carers. I shall miss many fine colleagues, whose guidence and support, pro=
fessionally and personally, have made my work more effective and satisfying=
, not least because they are able to do many things that I can't do. I shal=
l also miss the many individuals and organisations - such as Janice Kent an=
d reMEmber - who make such a difference in supporting people affected by di=
sease, whether as patients, carers, family or friends. Above all, I shall m=
iss the whole
challenge of clinical medicine, professionally and personally - most espec=
ially the privilege and responsibility of getting to know and care for some=
one at a most difficult time in their lives.=0A=A0=0AWhat won't I miss? Sad=
ly, some of the social responces to illness and those affected - evident wi=
th both CFS/ME and HIV/AIDS - show some of the less appealing characteristi=
cs of humankind: wilful ignorance, prejudice, stigma, neglect and blame sti=
ll add to the personal burden of disease, as if that wasn't enough in itsel=
f. I also shall definately not miss the conflicts of the ME field - often b=
itter, misjudged and personalised.=A0 Whilst I do understand someting of wh=
y this terrible civil war is still being waged, I am profoundly disappointe=
d by the inability or unwillingness of some of the key protagonists to move=
on. Some seem locked into disputes that are about past hurts and misunders=
tandings. I have seen at first hand how one's views and statements can be d=
eliberately misrepresented.=0A=A0=0AI will definately not miss having to de=
al with the benefits system, with the terrible injustices and misrepresenta=
tions that I increasingly see visited upon the ill and disabled. The system=
s and some of the people who work in them have lost sight of why they are t=
here - to help support those people in society who are vulnerable through i=
llness. Sadly, as a result of political and media rhetoric, and misapplicat=
ions of poorly thought through processes, everyone seems to be regarded as =
if they are trying to cheat the system. Self-evidently erroneous (eg judgin=
g by success at appeal) and often perverse decisions - about DLA and especi=
ally ESA - are being made, in which the accounts by the patient, their care=
rs and clinicians are being ignored in favour of superficial, brief and for=
mulaic "medical" assessments that seem determined to ignore the evryday rea=
lities that patients know. These cause unnecessary upset, exacerbate the im=
poverishing effect of
illness, and often cause health setbacks. =0A=A0=0ASo what am I going to d=
o with my time and energy now? I plan to spend more time on music - playing=
(clarinet) and listening - and looking at ways in which music can enrich o=
ur lives, including continuing support for music therapy and starting some =
new projects with professional musicians. Having enjoyed a theatre company =
- Theatrescience (including plays on HIV/AIDS, CFS/ME and dementia), I shal=
l continue to offer my guidence while it has any utility. I want to read mo=
re and do some more creative writing. I shall enjoy pottering in the garden=
and getting into better order! I would like to travel too, as there are im=
portant places still to see.=0A=A0=0AMy children have all grown up into ver=
y interesting people, whom I want to be with some more, as well as three yo=
ung grandchildren and wider family. I do also wish to reflect on my extraor=
dinarily diverse career and experiences, and see if there is something new =
to say, and write, about medicine and about being a doctor. I will still be=
a doctor, I just won't be doing doctoring! I often remind patients "we are=
human beings, not human doings!" - we can still be ourselves, even if the =
way we act may have to change as a result of changed circumstances.=0A=A0=
=0A=A0=0AAs I bid you farewell, I am very conscious of the beautiful and he=
art-wrenching Farewell that Wotan sings to his favourite daughter Brunnhild=
e at the end of Wagner's Die Walkure (The Valkyries), which I heard a few d=
ays ago at the St Endellion Festival. This might not be your cup of tea, bu=
t just imagine! It is full of profound love and pain, as well as regret abo=
ut how some things came to be. As he is obliged to leave her on a rocky mou=
ntain-top, he surrounds her with a ring of fire - to protect her until the =
arrival of a true hero, who will rescue her. So I will say a fond farewell =
to you all, at least in a similar spirit, wishing that you and everyone aff=
ected by CFS/ME be surrounded by a metaphorical ring of fire that can prote=
ct you, until someone or somthing arrives to free you from the rocky place =
where you find yourself. Farewell!
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