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 considerable
number of those attending about the key issues concerning people with ME/CFS -
in particular the scandalous lack of MRC funding for biomedical research; the
challenges to the NICE guideline; and problems with new guidance on benefits
(from the Department of Work and Pensions) and occupational health (from NHS
Plus). We were also able to distribute quite a lot of MEA literature covering
these concerns, as well as providing information from the Tymes Trust and
details of the forthcoming biomedical conference organised by Invest in ME.

The meeting was opened by Dr John Scadding, Dean of the RSM. During his short
opening address Dr Scadding referred to the fact that there was a demonstration
going on outside and that this reflected the fact that there were deep concerns
coming from the patient community about the content of this conference. There
was no criticism of the demonstration and I understand that RSM staff took
refreshments out to those involved later in the day. So a well conducted
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 patients and
doctors as part of their programme that brings patients and doctors together.
We have agreed to discuss this proposal in more detail at a later date.

I had originally intended to stay for the full day and attend all the
presentations. Unfortunately, I was unable to do so as I also had to attend an
important family funeral in the afternoon.

My report is therefore confined to the first presentation given by Professor
Peter White. I had to leave half way through questions - so there may be
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
Medicine

PRESENTATION TITLE: What is Chronic Fatigue Syndrome? And What is ME?

What is CFS?

Peter White started off by summarising the five ways in which he believed
chronic fatigue and chronic fatigue syndrome, the name preferred by most
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 neurology chapter
under G93:3; CFS is also indexed to G93:3]

He then summarised the 6 different research criteria that have been published
for CFS in adults and children:

a.. CDC Holmes
b.. Australian
c.. Oxford [produced for ME]
d.. London
e.. CDC 1994
f.. CDC Revised 2003

However, as there is no evidence of a CDC defined CFS out there in the general
population, this is not a useful criteria to use for clinical diagnosis.

Peter White also pointed out how research (eg the Witchita epidemiological
study) indicates that for every patient with CDC diagnosed CFS there are far
more people in the population with chronic disabling fatigue.

He then considered the three different clinical definitions that can be applied
to CFS:

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, especially in
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 core illness
the more likely it is that people with a psychiatric illness will be brought
into the definition.

[CS note: Most members of the public probably don't realise that as a rough
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
psychiatric illness.]

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) had an
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 symptom, allows
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 originally defined
on the basis of symptoms and signs found in outbreaks/epidemics. However, a
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 slide using
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 to use.


Lumpers and Splitters

The final part of this presentation looked at the issue of lumping or splitting
- in other words do conditions such as CFS form part of a spectrum of
overlapping disorders or are they more distinct clinical entities?

Peter White's conclusion is that CFS is likely to be heterogeneous (ie composed
of diverse elements) in nature when it comes to pathophysiology/causation
whereas it is more useful to regard CFS as homogeneous (ie of the same kind)
when considering treatments.


PW Conclusion:

'The reality is that mind and body cannot be divided and illnesses such as
CFS/ME involve "both", like most chronic diseases. The ME-CFS debate may be
remembered in future more as one of the tipping point for the rejection of
Cartesian dualism than for diseases that lie within'.


What conclusion would be a doctor with no prior interest in ME/CFS come away
with?

Had I been a doctor attending this meeting with no prior or specialist interest
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 diagnosis
d.. The best diagnostic criteria to use for making a diagnosis of CFS are
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: graded
exercise therapy

a.. The term ME is best avoided as it refers to an illness with neurological
signs that occurred in outbreaks some time ago - such as the one at the Royal
Free Hospital
b.. Giving people a label of ME, implying a serious and possibly incurable
neurological disease, is likely to lead to a less favourable prognosis