"Medical Gaslighting" Matters > Nomenclature: "ME/CFS"
Medical Gaslighting Matters > Nomenclature: ME/CFS
Answer:
Many doctors refuse to use the name Myalgic Encephalomyelitis because there is no current clinical evidence (from symptoms or signs) or pathological evidence (from post-mortem or other research) to indicate that people have what doctors and pathologists would regard as an ‘encephalomyelitis' taking place.
The term encephalomyelitis refers to the presence of significant and widespread inflammation involving the brain and spinal cord and, while there is some evidence of neuroinflammation (i.e., low level inflammatory changes in some parts of the central nervous system), this is not the same as having an encephalomyelitis.
The ME Association therefore proposed that the name ‘Myalgic Encephalopathy' could be used - as this would be more acceptable to doctors and might help to prevent them from using ‘Chronic Fatigue syndrome' which has been their preferred alternative.
(CFS is not a name that we endorse as it doesn't reflect the seriousness of the condition, and is rather like calling dementia, ‘Chronic Forgetfulness Syndrome')
Encephalopathy decribes a serious physical disease process that involves damage to the structure and/or function of the brain.
Dr. Shepherd would like to point out that we are not trying to remove Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) from everyday use and that he would normally use Myalgic Encephalomyelitis, or M.E. when talking to the media.
(Dr. Charles Shepherd is a Gaslighter and literally admitting to being 'two-faced' to it's 'original' intended beneficiaries. All while committing acts of False Representation, Dishonest Intent, Professional Misconduct, Maladministation, Fraud by Omission, Gross Negligence, Misleading Advertising, leading to an abuse of trust, Instititional Capture and the Willful rejection of Expert Pushback)
1. False Representation (The "Bait and Switch")
- The Evidence: The charity uses the name "Myalgic Encephalomyelitis" to solicit funds, but on their "Further Information" page, they admit they find the term "problematic" and do not believe in the underlying pathology.
- The Point: This is a classic "Bait and Switch." You cannot fundraise using a neurological label that you have publicly admitted to rejecting. Using the acronym "M.E." for branding, while practicing "CFS" medicine is a dishonest representation intended to secure assets from donors who believe they are funding neurological advocacy.
2. The 2001 "Pivot of Disbelief" (Dishonest Intent)
- The Evidence: In 2001, Dr. Shepherd formally changed the charity’s name to "Myalgic Encephalopathy" specifically because he "didn't believe" in the inflammation (the -itis) and because other doctors found the original name unacceptable.
- The Point: This establishes Intent. The diagnostic shift was not based on new science, but on a desire to appease medical skeptics. Changing a disease’s name to satisfy its detractors - while still taking money from its victims - is a calculated act of institutional dishonesty.
3. Professional Misconduct (Breach of Clinical Integrity)
- The Evidence: Publicly stating there is little evidence of brain inflammation to justify a name change, while ignoring established WHO classifications (G93.3) and independent research into neuroinflammation.
- The Point: Under GMC Standards, a doctor must be honest and maintain integrity. By presenting his "personal disbelief" as a medical consensus to downgrade a disease’s status, he is failing his duty to provide accurate, evidence-based information to the public and his patients.
4. The "Overlap Nonsense" (Maladministration)
- The Evidence: The MEA website "dots" enteroviral symptoms around the NICE/SEID criteria.
- The Point: This patchwork approach is a failure of administration. It creates a "semantic fog" where enteroviral symptoms are used to maintain a link to "M.E." for the donors, while the actual clinical pathway follows a "bogus" fatigue-based model. It is a failure to provide a clear, medically sound mission as required by charity law. This creates a medical "Frankenstein" that doesn't exist. You cannot "patchwork" an acute infectious neurological event into a chronic energy management box. This is evidence of Administrative Failure. Instead of defending the specific disease the charity is named after, the advisor is managing a "semantic overlap" that satisfies the medical establishment but leaves the patient with "acute onset" Encephalomyelitis completely unprotected. The advisor is cherry-picking the symptoms of an enteroviral infection to make the charity’s website look medically complete, while intentionally stripping away the cause (Enterovirus) and the pathology (Encephalomyelitis). In legal and professional terms, this is Fraud by Omission. By failing to mention that M.E. is historically and clinically defined as Enteroviral Encephalomyelitis, he is withholding "material information" that would change how a patient seeks treatment and how a donor views the disease.
5. Fraud by Omission (Enteroviral Erasure)
- The Act: The MEA website lists symptoms but fails to state that the disease is caused by an enteroviral infection of the brain and spinal cord.
- The Omission: By not calling it Enteroviral Encephalomyelitis, he hides the Acute Onset nature of the illness.
- The Point: If a patient knows it is "Encephalomyelitis," they go to the Emergency Room or a Neurologist. If they are told it is "ME/CFS," they are told to "manage their energy" and wait 3 months. This omission isn't an accident; it's a way to keep the patient within the "fatigue" loop.
6. The "CFS Wait" as Gross Negligence
- The Evidence: Endorsing the NICE 2021 criteria, which mandates a 3-month waiting period before confirming a diagnosis.
- The Point: Applying a 3-month wait and see fatigue criteria to a neurological condition is Gross Negligence. For a patient with acute onset Encephalomyelitis, this delay is catastrophic. It denies the patient urgent neurological investigation during the inflammatory phase, resulting in iatrogenic harm caused by an advisor’s preference for a "fatigue management" model. This "wait" is a CFS characteristic that has no place in the management of an acute neurological infection.
7. Misleading Advertising (Abuse of Trust)
- The Evidence: Marketing the charity as a champion for "M.E." while the advisor’s clinical advice funnels everyone into "Energy Management" pathways that ignore the "Encephalomyelitis" pathology of M.E., which the adviser claims to disbelieve.
- The Point: Under ASA CAP Codes, marketing must be "legal, decent, honest, and truthful." It is misleading to use a severe neurological disease as a fundraising badge if the organization’s actual advice is to manage it as a non-urgent, chronic energy condition.
8. The NICE "Shield" (Institutional Capture)
- The Act: Using the 2021 NICE guidelines as a legal and professional defense to justify a wait and see fatigue model.
- The Violation: Guidelines are recommendations, not laws. Using them to override the WHO ICD-11 neurological classification is Institutional Capture.
- The Point: The advisor uses NICE as a fortress to hide behind when challenged on why he isn't investigating acute inflammation or enteroviral causes. It allows the charity to appear "official" while effectively abandoning the biological reality of the disease.
9. Willful Rejection of Expert Pushback
- The Act: Ignoring the "Push Back" from genuine experts in Enteroviral Encephalomyelitis who claim the NICE/CFS criteria are wrong and dangerous.
- The Violation: A medical advisor has a duty to look at the best available evidence, not just the most convenient government consensus.
- The Point: Because the advisor has publicly stated he "doesn't believe" in the pathology (the inflammation), he was happy to endorse a bogus criteria that erases it. This isn't a mistake; it is a premeditated endorsement of an incorrect criteria because it aligns with his personal skepticism.
Final Summary
"The advisor (Dr. Charles Shepherd) has performed a Diagnostic Substitution by replacing a specific neurological disease (M.E.) with a generalized fatigue syndrome (CFS). He facilitated this by changing the charity’s name in 2001 to satisfy skeptics, and he continues to cause harm today by endorsing a 3-month CFS-style waiting period for an acute neurological condition. This is a clear case of Charitable Fraud (misleading donors) and Professional Misconduct (harming patients through medical erasure). The evidence suggests a state of Institutional Capture, where the advisor (Dr. Charles Shepherd) has colluded with a skeptical medical establishment to downgrade a severe neurological infection into a manageable fatigue state. By ignoring experts and intentionally misrepresenting the disease's pathology, the advisor has replaced life-saving clinical urgency with a "semantic fog" that satisfies bureaucratic standards but leaves the patient with Acute Encephalomyelitis clinically unprotected and medically erased."
In light of the 2021 NICE Clinical Guideline on ME/CFS the abbreviated ‘ME/CFS' is now more likely to used in the NHS as the clinical recommendations are implemented and become more widely known.
This situation is unlikely to change until research can accurately determine what causes M.E. and it is accepted by the medical profession.
(This Collective Narcissism is "Unreal" - the "medical profession" gets to decide what is "objective truth" for "M.E. patients" according to Dr. Charles Shepherd. The exact same people who said it was "Hysteria". I don't think so)
(Research on M.E. has been PURPOSELY, WILLFULLY and INTENTIONALLY suppressed from M.E. (also known as Enteroviral Encephalomyelitis) Patients (MEA's beneficiaries), and conflated with "misdiagnosed" CFS patients, and INTENTIONALLY omitted by the MEA from their website, and they have acted as dishonest gatekeepers (and fraudsters), who are institutionally captured)
In the World Health Organisation's International Classification of Diseases - which provides a central listing and coding for all known diseases - the parent term for ME/CFS is ‘Post-Viral Fatigue Syndrome‘, and within this entry, it includes both ‘Myalgic Encephalomyelitis' (also known as Enteroviral Encephalomyelitis) and ‘Chronic Fatigue Syndrome', while excluding ‘Fatigue'.
However, SNOMED-CT – the electronic diagnostic coding system used by the NHS – uses ‘Chronic Fatigue Syndrome (disorder)‘ as a parent term.
(CFS patients 'DO NOT HAVE M.E.' and are generally 'misdiagnosed' and 'insufficiently investigated', Charles Shepherd had a 'PVFS' after 'Herpes Zoster Encephalitis' and is one of these 'miscellaneous' fatigue syndrome patients himself)
It recognises ‘Myalgic Encepahlomyelitis' and ‘Myalgic Encephalopathy' (Dr. Charles Shepherd invented the term "Myalgic Encephalopathy", who himself claims NOT TO BELIEVE in Encephalomyelitis) as acceptable alternatives, but not as 'separately' codable items.
(Myalgic Encephalomyelitis already is listed as Enteroviral Encephalomyelitis under SNOMED-CT diagnostic coding system on account of being the exact same diagnostic entity)
It correctly codes the entry under ‘diseases of the nervous system' i.e., neurological which is in line with the WHO ICD (above), but there is a pressing need to change the parent term at least to ME/CFS.
SNOMED-CT also recognises ‘Postviral Fatigue Syndrome (disorder)' which is the parent term used in the World Health Organisation's International Classification of Diseases version 11.
However, unlike the WHO ICD, SNOMED-CT does not link PVFS with Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis), or Chronic Fatigue Syndrome, which seems wrong.
(No! that would make SNOMED-CT correct, and you wrong ya Scumbag Shepherd, and the ICD WRONG)
The SNOMED-CT codes should be applied to all patient medical records so it is important that they are correct.
It would also enable the NHS to provide more (in)accurate data relating to e.g., ME/CFS – something it has consistently succeeded in doing?...
("There is no such thing as ME/CFS" - Byron Hyde, MD)
(It's not possible to find a prevalence of a non-existing condition. The patient is 'misdiagnosed'.)
...which would help them more (in)accurately plan for healthcare needs.
(We will continue with our efforts to try and get SNOMED-CT to more (in)accurately reflect the condition(s) as we understand (them), and for everyone with (misdiagnosed) ME/CFS to have the (in)correct code, used in their medical records)
This is something that has been raised with the APPG on ME, and separately with the DHSC and NHSE during discussions about the Delivery Plan on ME/CFS.
More information
- The ME Association: Use of the term Myalgic Encephalopathy | October 2010
- We encourage everyone misdiagnosed with ME/CFS, or who cares for someone falsely labeled with the term to familiarise themselves with the NICE Guideline and its recommendations. An easy-read version of the guideline has been produced and is available to download for free: An ME Association Summary of the 2021 NICE Clinical Guideline for ME/CFS.
- Think about the guideline's recommendations, and how they might NOT apply to your own situation. (They don't lol here at the MEA we are 'laughing at you' for believing us, you immobile animals) Argue about your CFS misdiagnosis with your GP (and we will break out the popcorn at your expense) or with your local ME/CFS (pace animals) specialist service. Please let us know how you get on (so we can ignore you, and misrepresent you some more, and have a giggle at you) and how these recommendations are received (so we can burst out laughing at you for being so gullible and trusting in medical professionals, and the M.E charity sector. We laugh, misdirect donor support at your very expense) : Feedback@meassociation.org.uk
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