What is happening to post-mortem tissue research into ME/CFS at the moment? Is the ME Association still funding and carrying out any postmortem research? And have any significant abnormalities been found in the post-mortems that have been carried out so far?
When we were helping to set up the UK ME/CFS Biobank several years ago, the intention was to also create a research facility where tissue samples from people with ME/CFS who had died could be collected, examined and then stored for future use by researchers. This would be organised through a disease register where people could confirm in writing – through a Statement of Intent – their willingness to donate tissue at the time of death. These plans were very carefully thought through in the form of a feasibility study that a group of us published in the Journal of Clinical Pathology (see additional information, below).
The UK ME/CFS Biobank, where the ME Association Ramsay Research Fund continues to fund all the basic running costs, now forms part of the main University College London Biobank at the Royal Free Hospital. It is supplying blood samples to ME/CFS researchers all over the world. Due to the considerable cost of funding both the infrastructure and the staff that would be needed to set up an ME/CFS post-mortem tissue bank in parallel, we were unable to do so at the time the feasibility study was completed.
However, an informal post-mortem research group was established and we were fortunate in finding a very helpful neuropathologist – Dr Dominic O’Donovan at Addenbrooke’s Hospital in Cambridge – who was willing to incorporate ME/CFS post-mortems into his normal work. Over the past few years, we have worked with Dr O’Donovan his team in arranging a number of post-mortems from people with ME/CFS. The initial post-mortem would normally be carried out by a hospital pathologist in the locality where death occurred. The local pathologist would remove samples of tissue from the brain, spinal cord, skeletal muscle, adrenal glands and intestinal lining – under guidance from Dr O'Donovan. Tissue samples were fixed, frozen and couriered to Cambridge for examination. The body was then returned to the relatives for burial.
As far as results are concerned, none of the post-mortems that have been carried out so far in Cambridge have found the sort of widespread and significant inflammation that would be consistent with an encephalomyelitis (i.e., widespread and significant inflammation of brain and spinal cord) – the ‘E’ in ME.
However, a number of interesting abnormalities have been found – including inflammation of the dorsal root ganglia (dorsal root ganglionitis) in a small number of cases (Pathology of ME/CFS: A Pilot Study of 4 Autopsy Cases, below). The dorsal root ganglion is a bundle of nerves that lie outside the spinal cord and form part of the peripheral nervous system. It is interesting to note that this abnormality has been reported in other diseases, including an autoimmune disease called Sjögren’s syndrome – where it has been linked to causing sensory symptoms.
The neuropathology team at Addenbrooke’s Hospital is no longer able to complete this post-mortem work, so we explored other possibilities. We considered making use of one of the existing Medical Research Council ‘brain banks’ and paying for a small number of post-mortems for examination and storage of tissue for release to researchers who want to make use of these samples. However, there are negatives attached to this particular approach – in particular it is very costly (around £10,000 per case) and it would not include collection and examination of tissue from outside the brain and nervous system – which we believe is an important part of investigating the pathology of what is a complex multisystem disease.
New Post-mortem arrangement
In October 2023, we announced a new arrangement with the Manchester Brain Bank. 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… Read more.
- The ME Association announces new post-mortem research partnership with Manchester Brain Bank | 2023
- ME Association Statement re: ME/CFS Post-Mortem Tissue Bank & Kara’s Appeal | 2023
- Fatigue and basal ganglia | 2000
- Pathology of ME/CFS: A Pilot Study of 4 Autopsy Cases | 2010 Conference Presentation
- Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS | 2010
- Considerations in establishing a post-mortem brain and tissue bank for the study of ME/CFS: a proposed protocol | 2014
- Chronic Fatigue Syndrome
- Spinal Cord
- Long Term Condition
- Medical Research
- Central Nervous System
- Medical Records
- Medical Consent
- Chronic Fatigue
- Myalgic Encephalomyelitis
- Myalgic Encephalopathy
- Manchester Brain Bank
- Brain Bank
- Neurological Disease
- ME/CFS Biobank
- Nervous System
- Immune System
- Sjogren’s syndrome
- Blood Vessels
- Ramsay Research Fund
- Post Mortem
- Dorsal Root Ganglia
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.