I am a member of the UK post-mortem research group and the results on some of the post mortems that have been carried out so far here in the UK have been published - see below
However, none of the post-mortems carried out so far have found the sort of widespread and significant neuroinflammation that would be consistent with an encephalomyelitis (ie inflammation of brain and spinal cord)
The dorsal root ganglion (where inflammation has been found) forms part of the peripheral nervous system
We are continuing to carry out post-mortems when the opportunity arises
If you live in the UK you can use our 'Statement of Intent' form on the MEA website to register your permission for body parts and tissues to be used for post mortem research into ME/CFS:
http://www.meassociation.org.uk/wp-content/uploads/MEA-RRF-Statement-of-Intent-2015.pdf
I am not aware of any ME/CFs charities outside the UK who are doing this kind of research
This work is not yet directly linked to the work of the ME/CFS Biobank that we fund at the Royal Free Hospital in London. The ME/CFS Biobank is currently only dealing with collection, storage and distribution of blood samples with the anonymised clinical data attached
Dr Charles Shepherd
Hon Medical Adviser, MEA
Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
1Addenbrooke’s Hospital Cambridge UK
2Queen’s Hospital Romford Essex UK
3Royal Devon & Exeter Hospitals UK
4Honorary Medical Advisor to ME Association UK
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.
We report the post mortem pathology of four cases of CFS diagnosed by specialists.
The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.
Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.
The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.
One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.
This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.
Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.
The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.
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.
A specific CFS / ME brain and tissue bank in the UK is proposed.
Dorsal root ganglion anatomy: