Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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ME Biobank (UK) opens for business…..

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 13, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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  2. medfeb

    medfeb Senior Member

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    @charles shepherd

    Thank you for posting this. This is really good to hear.

    Could you clarify one thing...

    The announcement states:
    The ME/CFS Biobank is now open for business and ready to start supplying blood samples, along with the anonymised clinical data from well characterised people with ME/CFS (who meet Canadian and/or CDC diagnostic criteria) that accompanies the samples to researchers anywhere in the world who want to make use of blood samples for lab-based research.​

    Will the UK biobank samples be tagged as to which of the two criteria they meet?
     
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  3. Gijs

    Gijs Senior Member

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    What if the cause of ME can' t be found in the blood? Maybe this is the wrong place to look.
     
  4. Sasha

    Sasha Fine, thank you

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    Interesting video:

     
  5. Comet

    Comet I'm Not Imaginary

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    Watching the video that @Sasha posted above actually brought tears to my eyes. This is wonderful news. :star:

    Researching looks fascinating. In my next life, maybe that's what I'll grow up to do.
     
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  6. Comet

    Comet I'm Not Imaginary

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  7. BurnA

    BurnA Senior Member

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    Even if its not in the blood, it doesn't mean its the wrong place to look ( for now). It's only with hindsight, when we know where the best place to look is, can we say where the right and wrong places are.
     
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  8. justy

    justy Donate Advocate Demonstrate

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    Fantastic news all round - thanks for all your efforts.
     
  9. ronddejambe

    ronddejambe

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    Really excited about this, so thank you!
     
  10. charles shepherd

    charles shepherd Senior Member

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    The researchers requesting blood samples will be able to identify which diagnostic criteria (Canadian and/or CDC) accompany the blood samples. And because we have a large amount of clinical data (i.e. symptoms, examination findings, blood tests on every single donor - and well in excess of what is required to make a diagnosis is ME/CFS) it will also be possible to look at which other diagnostic criteria (i.e. SEID) are also being met.
     
  11. medfeb

    medfeb Senior Member

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    This is good to hear. Thank you, Dr. Shepherd
     
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  12. Justin30

    Justin30 Senior Member

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    As per the ME definition from the WHO I would hope the brains and spinal cords of these individuals that are deceased are collected and analyzed...

    Thank Dr Shepard
     
  13. charles shepherd

    charles shepherd Senior Member

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    Justin

    As you are probably aware, 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)

    NB: The dorsal root ganglion (where inflammation has been found in some cases) form part of the peripheral nervous system

    DRG: http://www.laesieworks.com/spinal/images-spinal/SpinalCord.jpg

    [​IMG]

    We are continuing to carry out post-mortems when the opportunity arises

    But this work is not yet directly linked to the work of the ME Biobank - which 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

    Abstract:

    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.
     
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  14. Justin30

    Justin30 Senior Member

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    Thank you Dr Shepard. So with inflmation only seen in this area in some cases has is there any indication of Encephalopathy?
     
  15. Sasha

    Sasha Fine, thank you

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    Thanks, @charles shepherd.

    I might have got this wrong (I'm no biologist) but haven't some researchers been proposing "micro-inflammation" in the brain (Jarred Younger? Japanese work)?)? If so, are the tests being carried out on the post-mortem brain tissue capable of detecting this?
     
  16. charles shepherd

    charles shepherd Senior Member

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    It is probably more helpful if I describe why I prefer the term encephalopathy in our current state of knowledge.

    As noted below:

    Some doctors, including myself, have proposed that the term encephalopathy should replace encephalomyelitis (as the E in ME) on the grounds that encephalopathy is a far more appropriate description of the neurological symptoms, signs and investigative abnormalities (neuroimaging and neuroendocrine in particular) that have been described in the literature.

    Am happy to discuss M -itis vs -opathy - but I think this should be done elsewhere as this thread is supposed to be opening up the ME Biobank

    Incidentally, following the announcement we have received our first application for blood samples!


    Use of the term myalgic encephalopathy by the MEA

    Medical conditions of uncertain or unknown causation often accumulate a number of names which may or may not appear in WHO ICD10 (World Health Organisation International Classification of Diseases number 10). This is perfectly understandable given the fact that medical research is continually moving on and producing new information on disease causation and treatment which may, in turn, be relevant to the way in which the disease is named and classified.

    ME/CFS is no exception and has been called ‘a disease of many names’. In America, it is also known as CFIDS (chronic fatigue and immune dysfunction syndrome); in Japan low natural killer cell syndrome; and in France it is sometimes called Spasmophilie. The discovery of XMRV, and a possible link to ME/CFS, has also led to the recent proposal that a new name based on XMRV and the associated neuroimmune disorder (ie X-associated neuroimmune disease/XAMD) could/should now be used in those people with ME/CFS who are XMRV+ve..

    Historically, I took the view that following publication of the 1996 Royal Colleges Report into ME/CFS, which resulted in a determined effort by some doctors to completely remove the term myalgic encephalomyelitis from UK medical language (and this had already largely occurred at the time as far as international medical publications and research was concerned) that it was time to put forward a new name that would keep the initials ME but could not be criticised as being pathologically inaccurate by doctors – as was/is frequently the case with the encephalomyelitis part of ME. Hence the introduction of the term myalgic encephalopathy..

    Since then, the term myalgic encephalopathy has become accepted by many doctors, as well as the Department of Health and other official bodies in both the UK and overseas. This initiative has therefore had a degree of success in taking the heat out of the intense medical arguments surrounding the name encephalomyelitis and helped to ensure that ME is still being used, but without hostility, by at least some doctors.

    The decision by The ME Association to use the term myalgic encephalopathy in their title and company documents dates back almost ten years . The decision was fully discussed by our Scientific and Medical Advisory Panel at the time. It was also discussed, debated and voted on by MEA members at an EGM (Extraordinary General Meeting) that was held in London on 14 July 2001. 1274 MEA members voted in favour of using the term myalgic encephalopathy. 43 voted against.

    The MEA has not consulted with, or written to the WHO on this proposal and myalgic encephalopathy is not listed in WHO ICD10. But this does not prevent doctors, people with ME/CFS, or official/government bodies using the term if and wherever they want to . The MEA and myself use both encephalomyelitis and encephalopathy. For example, I normally use encephalomyelitis when doing media work and in joint initiatives with other ME/CFS charities but tend to use encephalopathy when speaking to doctors. There is no intention to try and force people or organisations to use this alternative name. It has just been put forward as a proposal for discussion and a way of allowing doctors to use the term ME when they would otherwise refuse to do so because of the term encephalomyelitis.. But everyone is free to make up their mind on whether and when it would be more helpful to use either option.

    I remain open-minded about what may be happening in the central and peripheral nervous system in ME/CFS. However, I do not believe that there is any robust research evidence, at present, to confirm the use of the term encephalomyelitis – inferring significant and active inflammation involving the brain and spinal cord. I believe that encephalopathy, meaning a significant abnormality in various aspects of normal brain function, is a more appropriate name to use in our current state of knowledge regarding the neuroscience of ME/CFS..

    I am one of a very small number of doctors who is actively trying to resolve the mystery of what is happening to the central and peripheral nervous system in ME/CFS through the use of post-mortem tissue research. To do this I am involved in various aspects of post-mortem tissue research and the MEA is currently raising funds, funding post-mortem research activity, and carrying out a feasibility study – all with the intention of setting up a UK based post-mortem tissue and brain bank. This is now the subject of a paper that is currently being prepared for publication. Some preliminary results from recent post-mortems are also due to be presented at an international research conference later this year. And while the already reported finding of dorsal root ganglionitis (which can also occur in Sjogren’s syndrome and varicella zoster infection) in one ME/CFS post-mortem case is very interesting, it does not equal encephalomyelitis.

    If it does turn out that this type of research demonstrates the presence of encephalomyelitis in the brain and spinal cords of people with ME/CFS there will be no need to consider any other name for this illness.

    More information on the post-mortem research that is being funded and carried out by the MEA Ramsay Research Fund can be found on the MEA website: http://www.meassociation.org.uk/?page_id=1086

    More information on the use of the term encephalopathy:

    The reason why so many clinicians and researchers now either refuse, or are extremely reluctant to use the term ME – as myalgic encephalomyelitis – is due to the continuing lack of sound research evidence to demonstrate that the principle pathological feature in ME/CFS is a widespread inflammatory change taking place within the brain (ie encephalitis) and the spinal cord (ie myelitis). And while there is undoubtedly some evidence of past or present inflammatory changes (+/- immune system dysregulation) within the central nervous system taking place in some people with ME/CFS (mainly in research defined CFS cases) this is not the sort of evidence that would confirm a clinical or pathological diagnosis of encephalomyelitis to a neurologist.

    Evidence of past or present inflammation within the CNS can have a number of explanations and care needs to be taken to avoid drawing conclusions from existing research studies (the results of neuroimaging studies in people with research defined CFS in particular) that cannot be justified on scientific grounds. Adopting this approach is also likely to be counter-productive when it comes to challenging medical opinion on the issue of nomenclature.

    Consequently, some doctors, including myself, have proposed that the term encephalopathy should replace encephalomyelitis (as the E in ME) on the grounds that encephalopathy is a far more appropriate description of the neurological symptoms, signs and investigative abnormalities (neuroimaging and neuroendocrine in particular) that have been described in the literature.

    Encephalopathy is also a term that doctors cannot simply dismiss on the grounds that it is pathologically inaccurate in relation to ME (or research defined cases of CFS).

    There does, however, continue to be considerable confusion over what an encephalopathy is with some people claiming, quite wrongly, that it is a relatively benign psychiatric diagnosis rather than a serious medical diagnosis with neurological symptoms and complications.

    To provide some clarification, some of the key features of an encephalopathy (all of which are consistent with ME/research defined CFS) are listed below:

    1 A significant and sometimes diffuse disorder of the brain that can involve both changes to structure and function.

    2 A permanent or reversible neurological disorder than can be caused by infections (viral, bacterial, prion), metabolic or mitochondrial dysfunction, exposure to toxins (eg drugs, chemicals, pesticides), lack of oxygen or blood supply to the brain.

    3 A disorder that commonly produces serious disturbances in cognitive function – involving memory, concentration etc.

    4 Other neurological symptoms that can be found in an encephalopathy include myoclonus (twitching of muscles or muscle groups), poor co-ordination of limb movements, nystagmus (involuntary eye movements), tremor, muscle atrophy and weakness, dysequilibrium and unsteady gait, paraesthesiae (sensory disturbances), hypothalamic dysfunction and heat intolerance, orthostatic intolerance and postural hypotension.

    5 More serious neurological symptoms, as described in section 4.2.1.2 of the Chief Medical Officer’s report into ME/CFS (eg seizures), can also be found in encephalopathies.

    6 Mood disturbances can occur – as they sometimes do in ME/CFS.

    7 Objective abnormalities can be found on neuroimaging, spinal fluid examination and electroencephalograms – depending on the cause of the encephalopathy.

    8 Some encephalopathies are fatal.

    Examples of some well recognised encephalopathies include:

    Bovine spongiform encephalopathy (‘mad cow disease’)

    Coxsackie virus encephalopathy

    Diabetic encephalopathy

    Enteroviral encephalopathy

    Glycine encephalopathy – a paediatric metabolic encephalopathy

    Hashimoto’s encephalopathy – associated with Hashimoto’s thyroiditis

    HIV encephalopathy (and AIDS dementia complex)

    Hepatitis C encephalopathy

    HHV-6 encephalopathy

    HTLV encephalopathy

    Hypoxic ischaemic encephalopathy – from decreased oxygenation to the brain

    Liver (cirrhotic) encephalopathy – from advanced cirrhosis of the liver

    Lyme disease encephalopathy

    Mitochondrial encephalopathy (and MELAS) – involving damage to mitochondrial DNA

    Mycoplasma encephalopathy

    Sarcoid encephalopathy

    Toxic encephalopathy – often leading to permanent brain damage

    Uraemic encephalopathy – build up of toxins in renal failure

    Wernicke’s (thiamine deficiency) encephalopathy

    These are all very serious medical conditions with neurological complications and symptoms. They are not psychiatric conditions and they are not treated with psychiatric interventions.

    This is an important debate and I am pleased that it is now taking place in America as well as here in the UK.

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
     
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  17. charles shepherd

    charles shepherd Senior Member

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    Yes, there is growing evidence of a sequence of events involving infection >> immune system activation >> low level neuroiflammation - as happens in a number of other medical conditions (some of which are not classified as neurological)

    But this is not the same as the clinical or pathological description that doctors or pathologists would apply to someone who was suffering from encephalomyelitis
     
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  18. charles shepherd

    charles shepherd Senior Member

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    HIV associated neuroinflammation:

    http://www.ncbi.nlm.nih.gov/pubmed/25449672

    Some interesting overlaps here with ME/CFS……

    CS
     
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  19. Cheshire

    Cheshire Senior Member

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    Just FYI, ME/CFS is very often considered as depression in France, but it is not at all called "spasmophilie". I think this started with a statement from Simon Wessely who said something like, "they don't have CFS in France, they instead have something called spasmophilia"

    It was in support of his theory that CFS is culturally driven and that every country has its own expression of somatisation, with a specific set of symptoms.

    The term spasmophiplie was very used in France 20 years ago, it's slowly disappearing to align with international classifications. I'm not particularly knowledgeable about all this stuff, but I think spasmophilia is now considered to equate in part with hyperventilation and panic attack.
     
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  20. Sasha

    Sasha Fine, thank you

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    Thanks! But regardless of how it's classified, are the tests being used for the biobank capable of detecting it?
     

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