Below is the conference abstract for a presentation given by Dr Dominic O'Donovan (Consultant Neuropathologist, Addenbrooke's Hospital, Cambridge) to an international ME/CFS research meeting held at Bond University, Australia in December 2010:
http://www.bond.edu.au/research/research-at-bond/events/BD3_014159
Some of the co-authors of this paper – Abhiijit Chaudhuri, Dominic O'Donovan, Leslie Findley, Charles Shepherd – are involved in the UK initiative to set up a disease-specific post-mortem and tissue bank.
The aim is establish a donor register of people with well defined ME/CFS in conjunction with a permanent facility where tissue specimens can be sent, prepared, stored and made available to researchers who wish to examine nervous system and other tissue from people with ME/CFS.
The MEA is currently raising funds to continue to support all aspects of this initiative – including further research on existing post-mortem material – and a report on the post-mortem tissue bank feasibility study has recently been published in the Journal of Clinical Pathology:
http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032
Following the abstract is a report on the conference that has been prepared by our colleague Dr Ros Vallings from New Zealand, who attended the meeting.
Professor Hugh Perry from the University of Southampton, who also spoke at this meeting, is a member of the Medical Research Council (MRC) Expert Group on ME/CFS research. Professor Perry chaired the Expert Group prioritisation meeting, which drew up a list of research priorities that were sent to the MRC in 2010. We are currently awaiting the MRC response. Notes on this meeting can be found here:
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174
More information on the work of the MEA Ramsay Research Fund can be found on the MEA website at
https://meassociation.org.uk/?page_id=1086
Conference presentation on UK autopsy findings (pdf of Word doc)
Entire conference report by Dr Ros Vallings (pdf of Word doc)
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The following information was supplied by Mrs Criona Wilson, mother of Sophia Mirza, on 24 January 2011:
“The 2nd person, a woman aged 32, (Sophia Mirza) was reported to have refused to eat and drink. She was supposed to have refused to see a doctor.” Both of these statements are incorrect.
“The doctors had treated Sophia, who had severe ME, as being mentally ill, despite the fact that The World Health Organisation states that it is a physical disease. They forcibly sectioned her in a mental hospital. Having been released from there by a tribunal, her doctor removed her from that practice. The doctor in the second practice told me that ME was a mental illness and that she let patients ‘get on with it'. Sophia was terrified of calling on that doctor, as previously it had been made clear to her that she could, once again, be ‘sectioned’. Because of her severe symptoms she was unable to eat or drink, save for a minute amount. After she died the doctor refused to visit to confirm Sophia's death. Apparently they too had removed Sophia from their practice, four months previously and without our knowledge. There was no help for Sophia.
“Sophia had to suffer in unbearable agony and die alone. To infer that it was Sophia's ‘free choice' is not true. Being frightened of the doctor and being unable to eat or drink are totally different from refusing to see the doctor and refusing to eat.”
Críona Wilson (Sophia Mirza's mother) www.sophiaandme.org.uk
I would like to Say as a very severely affected sufferer, the tone & words in the original presentation re the person I believe to be Sophia Mirza is offensive. It is perfectly understandable she did not believe the care & rehabilitation offered by Queens would be suitable for her in her profoundly ill state. To say “refused” help makes her sound unreasonable & fundamentally treatable which is not at all certain. Hospital admissions are terribly stressful & potentially damaging. She needed expert outpatient care yes but the NHS did not provide this.
Please read the additional information at the end of the main story. It was supplied to us by Sophia Mirza’s mother, Mrs Criona Wilson, on 24 January 2010.