The Leeds ME/CFS Clinic
Drops Immunology Cover
Margaret Williams 30h April 2012
It is noted
that the Leeds clinic for CFS and ME intends to make financial savings
by changing what is offered at its “specialist” clinic at Seacroft
Hospital, one such change being that patients with ME/CFS will no longer
have direct access to an immunologist (Yorkshire Evening Post, 28th
The Leeds and Yorkshire Partnership NHS Trust reportedly
“As more is now known about chronic fatigue
conditions…employing an immunologist directly is no longer necessary”.
It is relevant
that the forthcoming Invest in ME conference to be held on 1st
June 2012 at Birdcage Walk in London (“Building a future for research
into ME – Clinical and Research Update in Myalgic Encephalomyelitis”)
will focus on the disrupted immunology found in ME and to this end, a 73
page document entitled “The Immunological Basis of ME/CFS: what is
already known? A compilation of documented immune system abnormalities
in ME/CFS from 1983 – 2011” will be published in the conference Journal
on or about 1st June and will be available online at
clinician in charge of the Leeds clinic is Dr David Protheroe, a liaison
psychiatrist who specialises in functional disorders (“medically
unexplained symptoms”); he claims that only three percent of the
clinic’s 600 patients a year engage with an immunologist.
interesting to recall that one of the authors of a paper published in
2010 was an immunologist and that the authors found that 40% of patients
referred to a medically run specialist ME/CFS clinic were found not to
have ME/CFS when appropriately investigated (JL Newton, G Spickett et
al; J R Coll Physicians Edinb 2010:40:304-307).
extent of the documented immune abnormalities known to exist in ME/CFS,
it is a regressive step for the Leeds clinic to withdraw the services of
an immunologist at its “specialist” clinic. In the light of the
findings of Newton et al, how can this possibly be in the best interests
of patients with ME/CFS?
It is worth
recalling that as early as 1992, the Medical Research Council was aware
of disordered immune function in ME/CFS: in a file of documents on
ME/CFS held at the National Archives at Kew, the MRC’s own summary of
the CIBA Symposium held on 12-14th May 1992 reported the
“Lloyd (Frederick, MD) presented
data showing disordered immune responses in CFS patients”.
This file (S
1528/1), previously redacted under FOI Exemption 40 (2) was stated to be
closed until 2071.
Chairman, Dr Arthur Kleinman, a prominent psychiatrist from Boston,
offered a prescient summary of the future status of ME/CFS research:
“In future, there should be
integration of the approach…thus eliminating the need to define CFS as
either a medical or psychiatric condition….in 10 years’ time…the central
issues in the CFS field would be social rather than medical or
scientific, partly driven by economics and funding of the disability
systems in various countries”.
It was at this
CIBA Symposium that, under the section entitled “The Treatment Process”,
clinicians were instructed that:
“The first duty of the doctor is
to…avoid the legitimisation of symptoms and reinforcement of disability”.
as a functional disorder and denying patients access to immunological
testing that would demonstrate underlying physical disease as will now
be occurring at the Leeds “specialist” clinic effectively and
conveniently avoids the legitimisation of symptoms.
proposed for the Leeds ME/CFS clinic can be seen as a manifestation of
the ideas presented at the CIBA Symposium in 1992, leaving patients
trapped by a particular kind of circular logic: denied the appropriate
medical tests to show they are physically ill, their symptoms will
remain forever “medically unexplained” and thus their “treatment” will
fall within the purview of liaison psychiatry which, in practice, means
CBT and GET.
The PACE and
FINE trials demonstrated that such approaches do not work (70% of PACE
participants did not fall within the Investigators’ “normal range” after
therapy), and patient surveys confirm the unpopularity of treatments
predicated on the psychosocial model. When offered the choice of care by
a psychiatrist or care by an immunologist, how many patients would
choose the former?
The answer is
most probably none, and therefore it can be seen that the pathways of
care to be offered by the Leeds clinic is dictated by the exigencies of
the market and not the clinical needs of people with ME/CFS.