"News Reports" on Myalgic Encephalomyelitis (M.E.) & Chronic Fatigue Syndrome (CFS)

Original YouTube Video: https://youtu.be/3Byb98A9hLo?si=89o4K4aVbM5qGgMJ The Center for Disease Control is warning parents to be on the lookout for a rise in a Polio-like virus that is paralyzing children.

Original Link: https://youtu.be/pobf0RPlJuw?si=S0Fw-bDeBj0ShP3j

YouTube Link : https://youtu.be/YsNOhknxo1w?si=gAxVrBw5rxQ6iUIz

ITV News Website: https://www.itv.com/news/westcountry/2024-08-09/woman-died-from-malnutrition-due-to-me-coroner-finds

Website: https://www-bbc-com.cdn.ampproject.org/v/s/www.bbc.com/news/articles/czrgmdv4z0go.amp?amp_gsa=1&amp_js_v=a9&usqp=mq331AQIUAKwASCAAgM%3D#amp_tf=From%20%251%24s&aoh=17233345679802&csi=1&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fwww.bbc.com%2Fnews%2Farticles%2Fczrgmdv4z0go Discrimination: your rights https://www.gov.uk/discrimination-your-rights/how-you-can-be-discriminated-against#:~:text=direct%20discrimination%20%2D%20treating%20someone%20with,characteristic%20at%20an%20unfair%20disadvantage Direct Discrimination - treating someone with a protected characteristic less favourably than others (Yes, this is a common theme from the medical profession - atmosphere of disbelief & denial, dismissive attitudes, preconceived views fueled by prejudices because of previous conflation with mental illness and the term "functional disorder" spread by misinformation & disinformation coming from psychiatry & neurology) Indirect Discrimination - putting rules or arrangements in place that apply to everyone, but that put someone with a protected characteristic at an unfair disadvantage (Yes, using flawed protocols designed for something else and not M.E.. They changed protocols for Alice Barrett another M.E. Patient at Devon & Exeter Hospital afterwards; which is an acknowledgement, that the previous protocols being used, were incorrect for M.E. Patients) Gross Negligence Manslaughter (GNM) https://www.cps.gov.uk/legal-guidance/gross-negligence-manslaughter#:~:text=The%20offence%20of%20gross%20negligence,The%20offence%20is%20indictable%20only. In order to prove the offence, the prosecution must therefore establish the following elements: a) The defendant owed a duty of care to the deceased; b) By a negligent act or omission the defendant was in breach of the duty which he owed to the deceased; c) The negligent act or omission was a cause of the death; and d) The negligence, which was a cause of the death, amounts to gross negligence and is therefore a crime; (Yes, you should know you shouldn't starve people to death and they acknowledged this by attempting nasal gastric feeding at first) Record number of workers resigned from their posts at Royal Devon and Exeter NHS Foundation Trust https://www.teignmouth-today.co.uk/news/record-number-of-workers-resigned-from-their-posts-at-royal-devon-and-exeter-nhs-foundation-trust-626248 NHS boss quits over 'unachievable' funding plan https://www-bbc-com.cdn.ampproject.org/v/s/www.bbc.com/news/articles/c6pprpx3l1po.amp?amp_gsa=1&amp_js_v=a9&usqp=mq331AQIUAKwASCAAgM%3D#amp_ct=1723337239791&amp_tf=From%20%251%24s&aoh=17233370434753&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fwww.bbc.com%2Fnews%2Farticles%2Fc6pprpx3l1po Suzanne Tracey announces decision to step down as CEO of the Royal Devon https://www.royaldevon.nhs.uk/news/suzanne-tracey-announces-decision-to-step-down-as-ceo-of-the-royal-devon/

YouTube Link: https://youtu.be/ibTCzXcKhpk?si=Txdgf_QRzIKvg-lu The mother of 27-year-old Maeve Boothby O’Neill, who died from malnutrition due to severe ME, says that her death was 'wholly preventable' and is calling for 'institutional change' in the care of ME patients. Broadcast on 14/08/24 Join Susanna Reid, Ed Balls, Kate Garraway, Richard Madeley, Charlotte Hawkins and Sean Fletcher every weekday on ITV from 6am until 9 every weekday!

Report of the joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners https://me-pedia.org/wiki/Report_of_the_joint_working_group_of_the_Royal_Colleges_of_Physicians,_Psychiatrists_and_General_Practitioners Chronic Fatigue Syndrome. Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on chronic fatigue syndrome, or the Joint Royal Colleges' Report is a British report published in 1996. The report "aimed to provide the information necessary for knowledge-based care and indicate what facilities and services provisions were required for the management of CFS in primary health care." The report also provided a summary of research and stated that "well-defined research endeavours and clinical trials" were needed for Chronic Fatigue Syndrome. Chronic Fatigue Syndrome Summary of a Report of a Joint Committee of the Royal Colleges of Physicians, Psychiatrists and General Practitioners (1996) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5401495/ 2.6 Controversy has been heightened by the recent prominence of the diagnostic label ‘Myalgic Encephalomyelitis’ (M.E.) in the United Kingdom. This was originally used to refer to epidemic outbreaks of unexplained neurological symptoms and signs (Yes) but came to be applied to sporadic cases of severe and prolonged fatigue (Wrongly) Widely publicised claims arising from immunological and virological research gave medical credibility to the ‘new’ syndrome, but with further knowledge it became inevitable that the label of ‘M.E.’ could not be accepted by mainstream medical opinion. (Denial, Arrogance, Ignorance & Incompetence) The precise reasons for this disillusion will be outlined later, but the result has been a difference between popular and professional opinion on the subject, which has occasionally been intense. (Neurology & Psychiatry have contributed to causing this) 2.7 Widespread publicity appears to have led to over-diagnosis of M.E. by some doctors (Correct), allied to frequent self-diagnosis by some patients (Many a patient may have actually worked it out, that they suffer from the Neurological Disease) At present we believe that the label of M.E. is *being used inappropriately* to cover a variety of diverse conditions and situations. (Correct) 3.4 Some would prefer (Individuals who actually suffer from the *acute onset* Neurological Disease) to continue to use the term M.E.. (Correct) It has been suggested that ‘the merits of the term M.E. are that it emphasises the physical aspects of the condition’. (Indeed) However, "Encephalomyelitis" describes a distinct pathological process of inflammation of the brain and spinal cord. (Correct) The term M.E. thus erroneously endorses (No it legitimately describes the pathology involved with the *acute onset* enteroviral disease) the existence of a specific pathological process for which in the context there is no evidence. (There was evidence for this process in a 1970 paper within The Lancet but it was clearly ignored or overlooked) ENCEPHALOMYELITIS RESEMBLING BENIGN MYALGIC ENCEPHALOMYELITIS - Innes (1970) https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(70)91097-4/fulltext (Four cases of *encephalomyelitis* resembling benign myalgic encephalomyelitis are reported. A Coxsackie B2 virus was isolated from the cerebrospinal fluid in one case and an echovirus type 3 virus from the fæces and the cerebrospinal fluid in another. Serological tests indicated Coxsackie B2 and Coxsackie B5 infection in the other two cases) Patients may wish to keep a particular term (Yes patient's who actually suffer from M.E. might like to keep the term for the disease they suffer from) because only with that label are they eligible to call upon the welfare state for help. We agree with the recent Westcare Report that this is understandable (Indeed) but not satisfactory. We are unaware of any satisfactory definition of M.E., and doubt whether an operational definition of M.E. is either possible or appropriate. (Dr. Elizabeth Dowsett's original London Criteria, existed in 1994) Summary The term Chronic Fatigue Syndrome (CFS) can be operationally defined for clinical and research purposes. The term CFS also allows clinicians to communicate effectively with patients and to propose a management plan while admitting that our understanding of the syndrome is incomplete. The term M.E. and similar terms are used to cover a wide variety of clinical and other complaints. (Admitting that M.E. refers to something else; rather than Chronic Fatigue Syndrome) They cannot be used for systematic research and may mislead patients into believing they have a serious and specific pathological process affecting their muscles and brain. (Which is the case in M.E. but may not be in a patient with an *unexplained* Fatigue-defined illness?) The value of research into these syndromes will be enhanced if future studies use standardised criteria for CFS, including a measure of severity, for the purposes of comparison.