The ME Association announces new post-mortem research partnership with Manchester Brain Bank

The ME Association (MEA) believes that post-mortem research is a vital part of the research portfolio that we fund through the Ramsay Research Fund. This is in addition to the support we give to the UK ME/CFS Biobank (where blood samples and anonymised clinical information are stored and released to researchers around the world) and to other biomedical studies that aim to increase understanding of ME/CFS, develop diagnostic tests and effective treatments.

Following the earlier statement about the charity’s involvement with – and funding for – post-mortem tissue research and the very generous donations we have received in memory of Kara Jane Spencer and Jack Phillips, we are pleased to report that funding for a new post-mortem tissue research programme at the Manchester Brain Bank has been agreed.

The MEA Ramsay Research Fund will be funding detailed examinations of the brain, spinal cord and dorsal root ganglion in at least 5 people with a firm diagnosis ME/CFS who are aged between 18 and 50 at the time of death. We will then review the results and decide whether to proceed with funding further examinations.

• The upper age limit of 50 is in place to try and ensure that any abnormalities that are found in the brain and spinal cord are not age-related and are more likely to be relevant to ME/CFS.

The Manchester Brain Bank (MBB) is a licensed tissue bank sponsored by the University of Manchester and is based at Salford Royal NHS Foundation Trust. It has approval from the NHS Research Ethics Committee and operates to standards set by the Human Tissue Authority. The MBB is a highly respected institution that is already involved with research into dementia and brain tumours, and the research team is keen to help with research into ME/CFS.

This new arrangement means that we will be able to obtain pathological information about very specific parts of the brain (such as the hypothalamus and brain stem), spinal cord and dorsal root ganglia where symptoms and abnormalities from investigations and neuroimaging studies have already indicated that they could be involved in causing or perpetuating ME/CFS.

The MBB will be storing tissue from the brain and spinal cord of people with ME/CFS. The tissue will then be made available to researchers who want to use it – in the same way that the UK ME/CFS Biobank stores and releases blood samples to researchers from people with ME/CFS along with anonymised clinical information. 

Donating your body to medical research

If you wish to donate your brain and spinal cord to post-mortem medical research into ME/CFS you must have had a firm diagnosis of ME/CFS from a doctor and understand that we can only proceed if you are aged 18 to 50 at the time of death.

If you wish to register your interest:

1. Complete the MEA Statement of Intent and make sure that your next of kin and solicitor (if you have one) is aware of it.
2. Include this information if you are making a Power of Attorney for Health and Welfare.
3. Send a copy of the completed MEA Statement of Intent by email to the Manchester Brain Bank – contact details are on the Statement of Intent

Please note: If you have completed an earlier version of the MEA Statement of Intent, there is no need to do so again.

Questions and answers

What will my family have to do when I die?

• When a potential brain donor dies the next of kin, a family member, or a person nominated by the deceased, should contact the MEA by phone (01280 731575) or email (admin@meassociation.org.uk) as soon as possible. The MEA will then contact the Manchester Brain Bank to discuss whether it is possible to proceed with a research post-mortem.
• If it is decided to proceed on the information provided, a member of the team at the Manchester Brain Bank will then make all the necessary arrangements with the coroner, local hospital pathology department etc for the donation to take place.
• The family of the donor will need to complete a consultee consent form from the Manchester Brain Bank at the time of death for donation to take place.
• In the sad situation where a death is expected to take place a family member or representative can also get in touch with the MEA beforehand to discuss the situation.

What about funeral arrangements?

• Brain and spinal cord donation do not interfere with or delay normal funeral arrangements and should not cause any additional expense. The MBB will provide detailed information at the time, and the MEA or MBB will cover any additional costs that may be involved.

How does tissue removal take place?

• Removal of the brain and spinal cord takes place in a suitable post-mortem facility as soon as possible after death – preferably within 72 hours.
• The whole of the brain and spinal cord is then retained for examination at the MBB and for possible future research there or elsewhere. 
• Genetic material (DNA) may also be analysed for abnormalities. Specific consent is required for this. The MBB consultee consent form has a section dedicated to genetic analysis.

Where is the tissue stored?

• Storage takes place in secure purpose built facilities at the University of Manchester and the Clinical Sciences Building at Salford NHS Foundation Trust.  Some of the tissue is frozen at a very low temperature so it can be retained and used for a long period of time. 

What happens when other researchers request tissue samples?

• Samples can be provided to researchers here in the UK and abroad. As with the UK ME/CFS Biobank, these samples can be linked to anonymised personal and medical information. The name of the donor is not therefore made known to any of the researchers who make use of tissue.
• Tissue sample requests are carefully vetted by the Manchester Brain Bank Committee – which consists of scientific and lay members and an independent chair. Their approval is required before any tissue can be released to an outside research group.

More information

1. Findings from a 2010 conference presentation: A Pilot Study of Four Autopsy Cases.
2. The MEA Statement of Intent | October 2023.
3. The MEA Ramsay Research Fund.
4. Medical Matters: Post-Mortem Research.
5. The Manchester Brain Bank was established in 1986 by Professor David Mann. It has underpinned much of the basic and clinical research into the spectrum of fronto-temporal dementia that Manchester has pioneered over 30 years. It is now under the expert leadership of Professor Federico Roncaroli, Dr Anna Richardson, Dr Andy Robinson and Philip Tinkler. It is also part of the UK Brain Banks Network and uses dissection protocols established by the BrainNet Europe consortium. The MBB has around 1,000 brains, has supported 133 research projects since 2009 and has distributed over 28,000 tissue samples since 2011.