RSM Conference - "Medicine and Me: ME and CFS Hearing the Patient Voice".

Hearing the patient voice’

July 11^th 2009 Royal Society of Medicine (RSM)

The background to this conference is that in April 2008 the Royal Society of Medicine (RSM) organised a full day conference for doctors entitled ‘Chronic fatigue syndrome’.  The speakers were mainly psychiatrists or medical doctors who have been following the psychiatric doctrine.  This angered people with ME so much that it prompted a letter writing campaign, articles by Margaret Williams, a flyer was handed to delegates as they entered the building[i] and there was a demonstration at the entrance of the RSM on the day of the conference.  A YouTube video was made of the demonstration[ii].

The then Dean said that the RSM have accepted the criticisms of the April 2008 conference, admitted that the bias was wrong and subsequently arranged this conference for patients.  It is part of their ‘Medicine and Me’ series of conferences.  The RSM opened out the planning of this conference to include the 25% ME Group, the The Young ME Sufferers (TYMES) Trust, patient representatives as well as ME Association (MEA), Action for ME (AfME) and Association for Young People with ME (AYME).  The patient representatives and the charities fought hard to get suitable speakers and to change the title of the conference from ‘CFS’ to ‘CFS/ME’ and to the final ‘ME and CFS’. (This recognises that CFS is a separate entity from ME and that the terms are not synonymous). 

My strongest impressions of the conference from numerous speakers, that includes doctors, researchers and patients was that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are doing nothing to help people with ME (PWME), that people are dying from ME and that there is a tremendous need for  ‘big money’ for bio-medical research.  My account of this conference is taken from personal notes written on the day.  Apologies if there are any inaccuracies.

Dr Abhijit Chaudhuri spoke about diagnosis.  He is against the term CFS and referred to it as a construct (something made up).  He said that the neurological symptoms of ME are clearly visible early on. That formal medical assessment is essential.  That it is important to medically review patients even if their blood results are normal.  That it is necessary to separate out those with anxiety, post-traumatic stress and somatoform disorders (hysteria) from people with ME and to send them to the psychiatrists for appropriate psychiatric treatment.  He said that there are newer diagnostic tools including biomarkers, genemarkers, novel brain imaging and tissue biopsy.   He would prefer there to be a referral pathway for subgroups and voiced the need for a national centre for research and treatment.  He used the example of Creutzfeldt-Jakob Disease which is very rare compared to ME but received a lot of funding and the cause was rapidly discovered.  CJD has a national centre in Edinburgh.  He showed a series of slides from autopsy studies of the dorsal root ganglia, (the part of the nervous system which controls sensory messages going up to the brain) of several young ME patients who have died recently.  These showed ganglionitis (inflammation of the ganglia).  This was a very poignant moment for me when I realised that two women considerably younger than myself had died in their early thirties of ME.

Shannen Dabson spoke of her experience of having ME as a child and an adolescent, see AfME Interaction[iii].  Mr Hardip Begol  of the Department for Children, Schools and Families also spoke.

Catriona Courtier of West London Network ME Self Help Group (MESH) was asked to speak about the treatment available to people with ME.   She has been ill for 20 years and cares for her daughter who is severely affected.  Catriona’s speech was very well received and gained the longest and most enthusiastic applause of the day.   I felt that there was much relief amongst the audience that someone was finally telling it as it is, that there is no treatment.   The speech has also received much comment and praise across the country from those there on the day and those who have read the speech since on the MEA website[iv]. 

Professor Anthony Pinching also spoke about treatment.  He showed a series of art slides and said ‘the most important thing we can do is to listen to our patients’.  He quoted Arthur Frank a lot ‘telling your story is therapeutic’  ‘make journeys to re-evaluate who you are’.  He said he does write letters in support of Department of Works and Pensions (DWP) claims.  He supports the National Institute for Clinical Excellence (NICE) guideline.  As he is head of the Clinical Network Coordinating Centres (CNCC) collaborative, the NHS service for CFS, I would have hoped to hear more medical or scientific content in his talk.

Like others, Dr Neil Abbot, Operations Director at the research charity ME Research UK (MERUK) was only allocated 15 minutes in which to speak.  An expanded version of his talk is available on MERUK’s website[v].  He outlined the main problems in ME research which are that during the last 15 years government funded research money has gone to psychiatric research and researching CBT/GET.  That we need parity with other medical conditions, he gave the example of the British Heart Foundation Cardiovascular Unit in Glasgow which cost £30m and has 140 researchers.  He said that small promising pilot studies have not been followed up.  All recent medical ME research in this country has been funded by the ME charities.  He compared what had been spent during 2008 by Cancer Research UK in this country - £476,559,000 - with what had been spent by MERUK research - £264,862.

The medical screening undertaken by the CNCC clinics is not working.  He gave the examples of audits of CFS patients in Dundee and Newcastle that have shown 40% of those referred with ME/CFS have other conditions, and treatable conditions such as sleep apnoea, connective and endocrine system disorders, depression, and anxiety.  Fischer at the Mayo Paediatric clinic in Minnesota[vi] similarly describes:

“Sometimes in our clinic, we feel as if we’re wandering through a herd of zebras… Not all the ‘stripes’ on the animals are the same, and not every animal in the herd is actually a zebra…"

On a positive note Dr Abbott was cheered by the number of medical presentations (as opposed to psychiatric) at the recent International Association for CFS/ME (IACFS)  conference in Reno Nevada in 2009.  In the absence of government funding he stressed the need to renew and increase our efforts to raise money for ME research ourselves.

Professor Stephen Holgate is the Medical Research Council’s (MRC) Clinical Professor of Immunopharmacology at the University of Southampton.  He has started an Interdisciplinary Expert Group, IEG to review where ME research has gone wrong in the past and to try to galvanise interest from scientists and funders.    Science and medicine have changed and with the development of the new technologies (the –omics: genomics, proteonomics and metabolomics). Add those to the current computing capacity, complex problems can now be solved.  This has happened with rheumatoid arthritis where 15-20 separate conditions have emerged.   Using cluster analysis in asthma 23 different phenotypes have been found.

He acknowledged that the history of research into ME and the treatment of patients had been appalling, that the historical link to neurasthenia and psychiatry was a major problem and referred to it as a ‘virtual decaying circle’ and that there is a need for some ‘truth and reconciliation’.  In his abstract he quotes Professor Luc Montagnier, French Nobel Prize winner,  ‘Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously.  It is about time this changes’.

Closing remarks were by Doris Jones on behalf of Simon Lawrence of the 25% ME Group.  Doris Jones said that the severely affected are unrepresented in research.  She then read out a list of people who have died from ME and requested one minute of silence for them.  

During the conference we had use of the Max Rayne Atrium next to the lecture theatre.  It was full of familiar faces to me from West London including Colin Parratt who was sporting his new T-shirt  ‘CBT NO THANKS’; this is one of a series!   I had organised a stall to sell copies of ‘Lost Voices’ [vii]on behalf of Invest in ME.   Apolonia Lobo had put on an exhibition of her art entitled ‘Positively M.E. – Making the Invisible Visible’.   This can be seen on her website[viii].   I met the families of PWME from Norfolk who have started ‘A Place for ME’ charity.   They are working towards providing housing for severely affected sufferers with a specialist care agency and ME respite care[ix].  

I feel that after the poor background to this conference this was a good start.  The conference was chaired by the new Dean, Dr David Misselbrook.   I agree with Dr Neil Abbott who started his speech by saying that it would be ‘great if the RSM could host a biomedical conference inviting experts from around the world’.  

Cath Ross