Post Mortem Tissue Sampling and The UK ME/CFS Post Mortem Tissue Bank
The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and our aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research.
In 2010, ME/CFS experts including those from The London School of Hygiene and Tropical Medicine, who currently run the ME/CFS Biobank, published a feasibility study that concluded: “the establishment of the post mortem ME/CFS tissue bank is both desirable and feasible, and would be acceptable to the possible tissue donors”.
Plans to set up a formal ‘bricks and mortar’ post mortem facility are currently on hold. This is due to the enormous cost such a project would incur and the continuing cost of launching and maintaining the UK ME/CFS Biobank.
In the meantime, we are continuing to work with a consultant neuropathologist at Addenbrooke’s Hospital in Cambridge in arranging post mortems on an individual basis when we are notified that someone has died and the person has made it clear that they want to donate their body to ME/CFS research (see below).
A number of post mortems have now taken place in the UK and some interesting findings have been formally reported. These include the presence of dorsal root ganglionitis or inflammation in bundles of nerve cells in the nerve roots that transmit sensory information back to the brain via the spinal cord.
In 2010 we presented these preliminary findings at a research conference in Australia – Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases – that concluded:
“Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis that CFS is a disease process and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS [peripheral nervous system].”
Further information relating to the pilot study can be read here. A related newspaper article from 2010 which includes comment from Mrs Criona Wilson – mother to Sophia Mirza whose autopsy was part of the study – can be read, here.
Additional research on post mortem tissue samples is expected with funding having recently been approved for a small genetic study. All such studies are subject to availability of samples and, as ever, to funding restraints.
However, we regard post-mortem research to be one of the more neglected areas of ME/CFS research and are very keen to support the establishment of a dedicated ME/CFS Post Mortem Tissue Bank along similar lines to those tissue banks currently available to other forms of chronic disease.
Donating Post Mortem Tissue
If you would like to donate post mortem tissue for ME/CFS research then you need to make this clear in writing in a Statement of Intent (see below) which can be kept with your Will or in a Codicil to your Will.
Your next of kin will also need to know about this instruction and where they can locate it.
One of the most important practical aspects in the whole process of post mortem tissue collection is for someone (i.e. next of kin or solicitor) to notify The ME Association as soon as possible after a death has occurred.
This is because the sort of research that is being done at present requires removal and fixation of very specific tissues as soon as possible, preferably within 24 hours – and this obviously requires consent and co-operation from relatives, coroners, and pathologists at a very sensitive time.
What does donating your body tissues to medical research involve?
This would normally consist of removing very small samples of brain, nerve and muscle tissue at the time a post mortem takes place and normally at a local hospital. Afterward the post mortem the body will be returned for burial or cremation.
The extracted tissue samples are then fixed and transported by courier to a neuropathologist in Cambridge who arranges for their examination and storage.
If we manage to establish The ME/CFS Post mortem Tissue Bank, the type of tissue samples being removed may be extended to include other body organs.
Statement of Intent
You can download the necessary Statement of Intent and further information: here.
Different procedures may apply once the ME/CFS Post mortem Tissue Bank has been established.