"Medical Gaslighting" Matters > Use of the term "Myalgic Encephalopathy" on the new MEA website
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 (false) to use in our current state of knowledge regarding the neuroscience of ME/CFS.
I am one of a very small number of doctors (He thinks he's elite. An elite gaslighter) 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. (you have literally done next to nothing to resolve anything, you utter scumbag, literally ZERO progress has come from you. Shepherd has contributed to regress, gaslighting, maladministration and failure). 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 Sjögren’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 (The arrogance and narcissism and denial of this 'utterly useless' scumbag. He actually believes patients, who are affected by a neurological disease he doesn't even suffer from himself, needs his permission to call their illness Myalgic Encephalomyelitis (He has acted and behaved like a "Gatekeeper" since Melvin Ramsay died), and also that it's down to M.E. Patients to prove their own illness, to the medical profession) 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
The reason why so many clinicians and researchers now either refuse, or are extremely reluctant to use the term M.E. - as Epidemic 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. (Research-defined CFS criterias (e.g. 1988 Holmes CFS, 1991 Oxford CFS, 1994 Fukuda CFS, 2003 Canadian Consensus Criteria, 2005 Reeves CFS, and the 2015 SEID Algorithm) do not define M.E. because they don't define Enteroviral Encephalomyelitis)
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. (Is he suggesting that he knows CFS cohorts, are not the same as a Ramsay M.E. cohort?) Adopting this approach is also likely to be counter-productive when it comes to challenging medical opinion on the issue of nomenclature. (Is he denying neuroimaging evidence?)
Consequently, some doctors, including myself, have proposed that the term encephalopathy should replace encephalomyelitis (as the E in M.E.) 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. (Shepherd has been ignoring, disbelieving or omitting the medical literature, on M.E. from the MEA website, and this pretty self-evident, and replacing it with SEID (CFS) based criteria, in which do not define M.E.)
Encephalopathy is also a term that doctors cannot simply dismiss on the grounds that it is pathologically inaccurate in relation to M.E. (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. (More gaslighting to justify an indefensible position as an advisor to what once was called the 'Myalgic Encephalomyelitis Association', in order to validate his own projected disbelief on to an M.E. Patient)
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: (M.E./Research-defined CFS, what does that even mean? It is literally a contradiction)
1 A significant and sometimes "diffuse" CNS disorder of the brain that can involve both changes to structure and function. (CNS Brain and Spinal Cord Dysfunction NOT Fatigue?)
2 A permanent or reversible neurological disorder than can be caused by infections (viral, bacterial, prion), metabolic or mitochondrial dysfunction, exposure to toxins (e.g. 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 orthostatic hypotension. (The mental gymnastics here are quite incredible. M.E. is an acute encephalomyelitis, you disgusting piece of shit)
5 More serious neurological symptoms, as described in section 4.2.1.2 of the Chief Medical Officer's report into ME/CFS (e.g. seizures), can also be found in encephalopathies. (Wouldnt that be the encephalitic component, you gaslighting piece of pond life?)
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. (What like an encephalitic illness?)
8 Some encephalopathies are fatal.
Examples of some well recognised encephalopathies include:
Bovine spongiform encephalopathy (‘mad cow disease')
Coxsackie virus encephalopathy (Kinda tells you, he is doing it on purpose?)
Diabetic encephalopathy
Enteroviral encephalopathy (Kinda tells you, he is doing it on purpose?)
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. (This guy is an arsehole and entirely dislikeable)
Dr. Charles Shepherd
Hon Medical Adviser, ME Association
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