MAY BE REPOSTED
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, The 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:
- F48: neurasthenia
- F45.3 somatoform autonomic dysfunction
- F45.9 somatoform disorder, unspecified
- R53 malaise and fatigue
- 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:
- CDC Holmes
- CDC 1994
- 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:
- Canadian Criteria
- NICE criteria (ie fatigue plus one symptom from the NICE list)
- 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.
‘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:
- CFS is by far the best name for this illness
- CFS affects both mind and body
- Research criteria for CFS aren't helpful for making a clinical diagnosis
- The best diagnostic criteria to use for making a diagnosis of CFS are those produced by NICE and the RCPCH
- Canadian Criteria are not helpful for making a diagnosis of CFS
- There is a safe and effective treatment for people with CFS: graded exercise therapy
- 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
- Giving people a label of ME, implying a serious and possibly incurable neurological disease, is likely to lead to a less favourable prognosis