A summary of the Royal Society of Medicine conference "Medicine and Me: ME and CFS – hearing the patient voice" which took place in London on 11 July 2009 has been provided by Mr John Sayer, from ME Support Norfolk. His notes appear below.
The half-day conference was organised jointly by the Royal Society of Medicine, the MEA, AfME, AYME, the 25% ME Group and TYMES Trust.
The promotional literature informed us that:
"’Medicine and me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support
groups, clinicians and researchers to discuss care and research issues in a particular condition…[and]…aim to provide a forum in which patients’ concerns about their illness are given top priority."
Unfortunately, the pattern of the day – two presentations at a time followed by a five-minute slot for questions – did not really provide for much in the way of patient-led questions and/or discussion. It was, however, an opportunity to see what the various bodies involved had to say for themselves (and encouraging to hear Jane Colby of TYMES Trust underline in her welcome address that the title of the proceedings was "Medicine and
me: ME *and* CFS").
(This write-up is based on notes taken at the time by myself and Gus Ryan.)
Session 1 was chaired by Dr Charles Shepherd (MEA), who reminded us that there had been two parliamentary meetings [i.e. the All-Party Parliamentary Group on ME and the Countess of Mar’s ForwardME Group] earlier in the week and that people still had a chance to submit written evidence to the APPGME’s NHS service provision inquiry.
Dr Abhijit Chaudhuri (of the Essex Centre for Neurosciences) spoke on "A rational, efficient and practical approach to diagnosis". He said that ‘CFS’ represents a wide group of patients and the term does not help matters; that there should be earlier diagnosis, perhaps three months into illness onset (six weeks where children are concerned). He does not think the NICE Guideline has helped. In his view, post-exertional malaise, muscle cramps and *well-preserved motivation and interest* (my emphasis) are key symptoms of M.E. and referral should be to a neurologist, since even psychiatrists admit that roughly 10% of ‘CFS’ sufferers have a neurological problem. He said that we need a national centre and funding for it (Romford being a treatment – not research – centre). His talk ended with a slide presentation of inflammation of the dorsal root ganglion, which he pointed out was "the gatekeeper of sensations".
In the question slot Ciaran Farrell asked how we could change the NHS – to much applause from the audience. Dr Chaudhuri repeated that we need a national research centre.
"M.E. in children and adolescents" was presented by Shannen Dabson, a teenager whose story struck a particular chord with me as a teacher (prior to M.E.). She has had M.E. for six years, and now has very little trust in adults, having received virtually no respect for herself and her diagnosis. She found herself "written off" by her school, who didn’t send her work, didn’t mark the work she managed to do, didn’t send her the school newsletters or keep her informed of such things as the school photographs (which was the part that had me closest to tears, as I’d suffered the same treatment from my last employer: I will never forgive them for my absence from the school photograph of my form pupils; for both Shannen and me, it was like being airbrushed out of history). Shannen had had to make her own arrangements for taking exams, as her school refused to enter her on the grounds of a poor attendance record. To her admirable credit, she got six GCSEs anyway! I’m hoping to reproduce her talk for "MES-N" members, as it should be inspirational, especially for youngsters. She came up with what I personally consider to be a very practical, appropriate and *scientifically sound* slogan: "Work smarter, not harder!"
Hardip Begol (of the Department for Children, Schools and Families) spoke on "Addressing the educational impact of ME", and said that Shannen’s situation is all too common from an educational point of view and that it
was difficult to make teachers believe in ME/CFS. No personal disrespect to Mr Begol, but it struck me that what he had to say in his presentation did not have all that much immediate relevance, being, as one might expect,
current government ‘fudge’. His comments were not actually specific to M.E., but here’s hoping that the conference gave him something to think about and take back to the DfCSF (though I’m not really holding my breath on that one).
In the question slot following these two talks Mary-Jane Willows (of AYME) said that the balance of power was with schools and Jane Colby pointed out that parents are too afraid to complain. (Personal note – no wonder, with the spectre of Social Services waiting in the wings, ready to pounce.)
Catriona Courtier (of the West London M.E. Self Help Group) spoke on "Treatment: the patient’s perspective". She has had M.E. for twenty six years and her daughter is also ill. She reminded us that an AfME survey
revealed that patients received very little proper treatment and that an MEA survey demonstrated that graded exercise therapy (GET) was the most dangerous form. She is ‘anti-NICE’. She said that staff at her local clinic
*want* to help – but are misinformed.
Prof Anthony Pinching of the Peninsula Medical School, Plymouth, spoke on "Treatment – evidence-based and pragmatic approaches" and thinks that things are changing for the better. In his view, M.E. is a physical illness
with psychological consequences and that people should work together and "not lob bricks at each other". He said that the Cornwall service does make home visits. He advocates a ‘symptom-control’ approach: which symptoms does a patient want most help with? I found him to be a bit vague and general, really, and he seemed to be saying that every individual needs different treatment (including psychological approaches), to be negotiated between patient and physician, and seemed to imply that success depended on the doctor-client relationship (which I personally find a bit too New-Agey: "permission to be ill and permission to have fun whilst you’re ill"). He did, however, say that there is a need for "building M.E. into the medical curriculum" (note – although it depends on exactly *what* is built in!). In response to a question about CBT from Dr Charles Shepherd, he indicated that such treatment should be ‘individualised’.
In the question slot Dr Chaudhuri expressed disagreement with Prof Pinching, saying that patients are *not* listened to and that the NICE Guideline is aimed at a *broad* group – these points being applauded by the
audience. Prof Pinching responded that the NICE Guideline is not perfect, but should be used "to best effect".
After a short (very short!) break, Sir Peter Spencer (Chief Executive Officer, AfME) chaired Session 2.
Dr Neil Abbott (ME Research UK) spoke on "Research: what do patients want and why isn’t it happening?" He suggested that the RSM host a biomedical conference on M.E. (Applause!) He said that the psychosocial model is predominant in the UK, although not quite so much in the US. He quoted Prof Simon Wessely with reference to psychosocial interventions: "certainly, those interventions are not the answer to CFS". MERUK survey reveals that research on mitochondria, RBCs, immune cells, muscles, blood vessels, genes and brain are wanted; that this is not a "sexy" illness. ‘ME/CFS’ label is a problem: it is a process of elimination and that leads to a dustbin
diagnosis. He is critical of the psychosocial approach, which is applicable to *all* illnesses (used to manage symptoms) and not specific to M.E. The real problem, in his view, is lack of funding.
Prof Stephen Holgate (University of Southampton) spoke on "ME: a research orphan for too long". He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health
approach, it being perceived as having evolved from neurasthenia [‘nervous debility’]. He said, "It’s a system disorder" and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a "condition or conditions (25 or more)"; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres. [Personal note: it all seemed to me a bit like reinventing the wheel and I have my misgivings about not only which ‘charities’ will be invited to participate but also the calibre of patients from the clinics/services.]
Dr David Misselbrook (Dean of the RSM) then invited questions to the panel of speakers. An elderly neuroscientist and his grandson tried to deliver a plug for the Lightning Process, the grandson claiming we had "wasted all this time talking when a cure has already been found" [sic], but Dan [from "M.E. Support-Norfolk"] pointed out that we hadn’t come all this way to hear a sales pitch for LP and Jane Colby expressed serious misgivings about success claims, citing an example of further harm caused to a patient; she also pointed out that no one can legally claim recompense if LP doesn’t cure a patient as it is not offered as a treatment, but a ‘training’.
Ciaran Farrell challenged Prof Holgate’s ‘history’ of M.E. but Prof Holgate said he had been misunderstood, that it wasn’t his own belief that M.E. was a form of neurasthenia and that he agreed with Ciaran, adding that he
wanted to get rid of the terms "CFS" and "M.E." [whatever that implies!].
In "Closing remarks", Mary-Jane Willows said that there should be quick diagnosis, raising of awareness and no "one-size-fits-all" approach. Doris Jones (of the 25% ME Group) read out a list of M.E. sufferers who have died
and requested a minute’s silence in their memory, which was dutifully observed.
All in all, in my own opinion? A worthwhile day in order to find out what is going on in various quarters, but throughout the proceedings I did wonder who the ‘target audience’ was supposed to be, and for whose benefit
this had all been arranged. Was it a ‘box-ticking’, ‘patient consultation’ exercise? The subtitle of the event, "Hearing the patient voice", was a bit misleading, since we were mostly being talked at, not listened to; there
certainly wasn’t enough time, as I said at the beginning, for much questioning or discussion. But maybe some of what was said will pay dividends. Fingers crossed.