The Royal Society Meeting on CFS
(28th April 2008)
A summary by Charles Shepherd
As previously announced, the ME
Association was allowed to set up a display
stand at the meeting on Chronic Fatigue Syndrome (NB: no mention of
ME in the
official title) for health professionals (only) that was held that
at the Royal
Society of Medicine (RSM) on Monday 28 April.
During the day, myself and Tony Britton were able to talk to a
number of those attending about the key issues concerning people
with ME/CFS -
in particular the scandalous lack of MRC funding for biomedical
challenges to the NICE guideline; and problems with new guidance on
(from the Department of Work and Pensions) and occupational health
Plus). We were also able to distribute quite a lot of MEA literature
these concerns, as well as providing information from the Tymes
details of the forthcoming biomedical conference organised by Invest
The meeting was opened by Dr John Scadding, Dean of the RSM. During
opening address Dr Scadding referred to the fact that there was a
going on outside and that this reflected the fact that there were
coming from the patient community about the content of this
was no criticism of the demonstration and I understand that RSM
refreshments out to those involved later in the day. So a well
demonstration appears to have been effective in bringing these
concerns to the
attention of the Medical Establishment.
I spoke to Dr Scadding before the meeting started and it looks as
though the RSM
is keen to put on a meeting in the next academic year for both
doctors as part of their programme that brings patients and doctors
We have agreed to discuss this proposal in more detail at a later
I had originally intended to stay for the full day and attend all
presentations. Unfortunately, I was unable to do so as I also had to
important family funeral in the afternoon.
My report is therefore confined to the first presentation given by
Peter White. I had to leave half way through questions - so there
additional points of interest that are not included in this summary.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
PROFESSOR PETER WHITE: Professor of Medicine at Bart's and the
London School of
PRESENTATION TITLE: What is Chronic Fatigue Syndrome? And What is
What is CFS?
Peter White started off by summarising the five ways in which he
chronic fatigue and chronic fatigue syndrome, the name preferred by
physicians, can be classified using ICD10:
a.. F48: neurasthenia
a.. F45.3 somatoform autonomic dysfunction
b.. F45.9 somatoform disorder, unspecified
a.. R53 malaise and fatigue
b.. R54 senile asthenia
[CS note: The only place that ME appears in ICD10 is in the
under G93:3; CFS is also indexed to G93:3]
He then summarised the 6 different research criteria that have been
for CFS in adults and children:
a.. CDC Holmes
c.. Oxford [produced for ME]
e.. CDC 1994
f.. CDC Revised 2003
However, as there is no evidence of a CDC defined CFS out there in
population, this is not a useful criteria to use for clinical
Peter White also pointed out how research (eg the Witchita
study) indicates that for every patient with CDC diagnosed CFS there
more people in the population with chronic disabling fatigue.
He then considered the three different clinical definitions that can
a.. Canadian Criteria
b.. NICE criteria (ie fatigue plus one symptom from the NICE list)
c.. Royal College of Paediatricians and Child Health criteria
and what he felt were their relative value in clinical practice,
regard to their use of lists of symptoms in addition to fatigue.
Peter White pointed out that as more symptoms are used to define a
the more likely it is that people with a psychiatric illness will be
into the definition.
[CS note: Most members of the public probably don't realise that as
rule of thumb many doctors work on roughly the same basis - the more
' non red
flag' symptoms someone has above 5 in number, the more likely they
are to have a
Peter White considered that the Canadian Criteria had too many
symptoms (8 in
all) from long lists of grouped symptoms - some of which (eg ataxia)
uncertain relationship to CFS. As a result he could not recommend
the use of
the Canadian Criteria for the clinical diagnosis of CFS.
The new NICE criteria, which only require fatigue plus one other
a diagnosis to be made around four months and are, he felt, useful.
The RCPCH criteria were his 'Gold Star' choice when it came to
making a clinical
diagnosis of CFS.
What is ME?
Peter White gave a brief summary of events at the Royal Free
Hospital back in
1955, the editorial in the Lancet introducing the term ME/myalgic
encephalomyelitis, and pointed out that some of the clinical
features of ME (eg
cranial nerve palsies) were not seen in individual cases today.
ME implied an incurable organic neurological illness that was
on the basis of symptoms and signs found in outbreaks/epidemics.
conference at the RSM in 1978 had helped to legitimise a move from
ME being an
illness that occurred in epidemics to an endemic one.
To back this up, part of the presentation on ME was accompanied by a
the front cover of the January issue of ME Essential magazine with a
photo of a
severely affected lady in a wheelchair.
Peter White believed (on the basis of a piece of research) that
having a label
of ME carried a worse prognosis than having a label of CFS.
ME is, therefore, a name/diagnosis that is not helpful for doctors
Lumpers and Splitters
The final part of this presentation looked at the issue of lumping
- in other words do conditions such as CFS form part of a spectrum
overlapping disorders or are they more distinct clinical entities?
Peter White's conclusion is that CFS is likely to be heterogeneous (ie
of diverse elements) in nature when it comes to
whereas it is more useful to regard CFS as homogeneous (ie of the
when considering treatments.
'The reality is that mind and body cannot be divided and illnesses
CFS/ME involve "both", like most chronic diseases. The ME-CFS debate
remembered in future more as one of the tipping point for the
Cartesian dualism than for diseases that lie within'.
What conclusion would be a doctor with no prior interest in ME/CFS
Had I been a doctor attending this meeting with no prior or
in ME/CFS I would have come away with the conclusion that:
a.. CFS is by far the best name for this illness
b.. CFS affects both mind and body
c.. Research criteria for CFS aren't helpful for making a clinical
d.. The best diagnostic criteria to use for making a diagnosis of
those produced by NICE and the RCPCH
e.. Canadian Criteria are not helpful for making a diagnosis of CFS
f.. There is a safe and effective treatment for people with CFS:
a.. The term ME is best avoided as it refers to an illness with
signs that occurred in outbreaks some time ago - such as the one at
b.. Giving people a label of ME, implying a serious and possibly
neurological disease, is likely to lead to a less favourable