From our quarterly ME Essential magazine, Spring 2010
The ME Association is to co-fund the second stage of the ME/CFS brain and tissue bank feasibility study, together with Action for ME.
The study will collect information and look at the practicalities of setting up a UK brain and tissue bank, where post-mortem specimens from people with ME/CFS can be collected, stored and used for research.
This facility could also be used as an archive for blood and samples from tissues such as muscle that could be collected from living volunteers during surgical procedures.
The MEA and AfME will each contribute about £13,800 to the cost of this six-month phase of the work, which started in January.
MEA members will already be well aware of the various initiatives to raise funds that are currently taking place – in particular the epic walk along the River Amazon being undertaken by Ed Stafford. Further fundraising events will be announced in due course.
The management of the second phase will be overseen by a Steering Group, which will have lay members appointed by the MEA and AfME, as well as doctors and charity officials. A full list of members of the Steering Group will be announced on the MEA website when it has been finalised.
FIRST PHASE COMPLETED
The work completed during phase one of this study has been carried out by Dr Luis Nacul and colleagues at the London School of Hygiene and Tropical Medicine. This consisted of examining the acceptability, desirability and feasibility of setting up an ME/CFS post-mortem brain and tissue bank. A comprehensive report on the first phase will be published shortly by the LSHTM and will be made available via a link on the MEA website.
The first phases involved consultation with patients, clinicians, and researchers – working through both individual interviews and two focus group workshops for people with ME/CFS.
A workshop was also held involving medical experts, tissue bank managers, and a lawyer with expertise in Human Tissue legislation. Among the topics that have been examined by the experts are eligibility criteria for joining the proposed donor register; procedures for rapid identification of deaths and procedures for retrieval of tissues after death.
Visits were arranged to a number of existing brain banks including those for multiple sclerosis and Parkinson's disease (at Imperial College, London), Addenbrooke's Hospital in Cambridge, the University of Edinburgh, and the Sun Research Institute in the USA.
WORK ON THE FINAL PHASE
The first stage has produced a great deal of encouraging feedback and support from doctors – together with a clear indication that a brain and tissue bank would be welcomed by most people with ME/CFS. However, a number of financial, practical and technical problems have, not surprisingly, been identified.
There are also legal and ethical concerns to consider. These include, for example, whether the facility should accept tissue from children and people who have committed suicide?
Given the likely cost involved in establishing and running a brain and tissue bank, it looks as though a link with an existing brain bank will be more realistic rather than trying to set up an entirely new unit.
The second phase of the feasibility study will be looking at how all these issues can be resolved.
We would like to hear your views on the practicalities and ethical issues surrounding post-mortem research and the possibility of donating your body to ME/CFS research. Please email using this link.
How can people set about donating their body to ME research?
Our aim is to also set up a comprehensive patient/donor register that will contain basic and on-going clinical information – as happens with the multiple sclerosis and Parkinson's disease brain banks.
This will run in parallel with a brain bank research unit that can cope with post-mortem tissue whenever the opportunity arises.
The brain bank itself will obviously require a building, staff and on-going funding, which is why the quite detailed feasibility studies are taking place.
The donor register may contain some restrictions on age, co-morbidity (ie having other diseases) etc but this will depend on the recommendations from the feasibility study. No such restrictions apply at present.
In the meantime, the process of dealing with post-mortem requests is a rather hit and miss procedure and there is no guarantee that we can always find a neuropathologist who is willing to look at post-mortem tissue when we are notified about possible availability.
Therefore the best we can do at present is to suggest that people who wish to donate their body to medical research into ME/CFS should place a short and very clear statement of intent with their Will – like the one you can download using the link below.