How do we stop charities and influencers spreading bio-babble about ME/CFS?'

Jonathan Edwards said:
I think that should read:
Oxford or Fukuda or ICC = bad.
CCC, IOM (CDC) = Ok.
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The International(CDC) I am referring to is the CDC 1994 criteria aka Fukuda, (Sharpe helped with it) there is also the 1988 criteria.

The ICC (International Consensus Criteria) was based on the CCC and generally accepted as OK, not bad as you are saying(??)

Sometimes papers refer to the 'International' criteria and this turns out to actually be the Fukuda criteria.
eta https://en.wikipedia.org/wiki/Clinical_descriptions_of_ME/CFS
 
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This is an interesting post from Wendy Boutilier

GAME ME-ICC ·​

Wendy Boutilier
·
Admin
·1d ·

After the PACE trial was published in 2011, psychiatry groups claimed that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) could treat or even cure “CFS/ME.” Later independent analyses exposed serious flaws in the study’s design, data handling, and outcome reporting. Its claims were scientifically discredited, but many of the psychiatrists involved remained influential within medical institutions. Instead of acknowledging ME as a neuroimmune disease, they began promoting new diagnostic labels and reclassifying patients under other psychosomatic or “functional” labels, such as:
* MUS (Medically Unexplained Symptoms)
* FND (Functional Neurological Disorder)
* Somatic Symptom Disorder (SSD)
* Bodily Distress Syndrome (BDS)
New Psychiatric Classifications Applied to ME
Medically Unexplained Symptoms (MUS)
MUS is a broad term used when no obvious biomedical cause is found for a patient’s symptoms. Because ME patients often have normal standard test results, some clinicians reclassify them as having “MUS.” This label implies that the symptoms are exaggerated or stress-related rather than signs of underlying disease. It discourages further investigation, frames the illness as psychological, and frequently results in inappropriate referrals for CBT or “activity rehabilitation.”
Functional Neurological Disorder (FND)
FND is described as a problem in the way the brain “functions” rather than in its structure. It is sometimes used for symptoms such as paralysis, tremors, or seizures without visible lesions on scans. Some psychiatrists now describe ME neurological features—weakness, paralysis, cognitive crashes—as “functional. This interpretation ignores findings of neuroinflammation, cerebral blood-flow reduction, oxidative stress, and mitochondrial dysfunction that are documented in ME research.
Somatic Symptom Disorder (SSD)
Defined in the DSM-5, SSD is a psychiatric diagnosis given when physical symptoms cause distress and the clinician judges the person to be “excessively concerned” about health. In practice, it pathologizes legitimate suffering and advocacy for care. Many ME patients who persist in seeking help or documenting post-exertional relapses are labeled with SSD, implying that anxiety rather than biology drives their illness.
Bodily Distress Syndrome (BDS)
Developed mainly in Denmark, BDS groups conditions such as fibromyalgia, IBS, and ME/CFS under a single psychosomatic category. It claims that multiple body symptoms without “adequate explanation” represent a disorder of bodily distress. This directly contradicts the World Health Organization (WHO) classification of ME as a neurological disease and effectively erases its biomedical identity.
Why These Reclassifications Are Harmful
* They replace a neurological diagnosis with a psychiatric one, undermining the patient’s medical credibility.
* They deny access to appropriate biomedical care and testing.
* They justify psychological or behavioural interventions (CBT/GET) that have already been shown to harm many ME patients.
* They redirect research funding away from biological investigation.
* They institutionalize disbelief by framing legitimate pathology as maladaptive thinking.
Modern studies clearly demonstrate that ME involves measurable abnormalities:
* Neuroinflammation and microglial activation
* Reduced cerebral blood flow and oxygen extraction
* Mitochondrial and metabolic dysfunction
* Immune activation and autonomic dysregulation
* Post-exertional neuroimmune exhaustion (PENE)
These findings are not compatible with any “functional” or psychosomatic model.
International Recognition of ME as a Neurological Disease
World Health Organization (WHO)
* ICD-10 Code: G93.3 — Myalgic Encephalomyelitis / Post-viral Fatigue Syndrome, classified under Diseases of the Nervous System. WHO ICD-10 entry
* ICD-11 Code: 8E49 — Post-viral fatigue syndrome, remaining in the neurological chapter. WHO ICD-11 entry
WHO explicitly states that ME is a neurological condition and must not be reclassified under mental or behavioural disorders.
NICE (UK, 2021)
The NICE guideline NG206 recognises ME/CFS as a chronic, multisystem disease and specifically warns against graded exercise or any therapy presented as a cure.
“Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure.” NICE Guideline NG206
Canadian Consensus Criteria (CCC, 2003)
The CCC defines ME/CFS as a biological illness with dysfunctions in neurological, immune, endocrine, and energy systems.
“ME/CFS is not a primary psychiatric disorder. Psychiatric symptoms secondary to the illness should not result in a psychiatric primary diagnosis.” Canadian Consensus Criteria PDF
International Consensus Criteria (ICC, 2011)
Created by 26 international experts, the ICC uses the name Myalgic Encephalomyelitis to emphasize the neuroimmune nature of the disease.
“The pathophysiology is not due to deconditioning or psychiatric illness.” Carruthers et al., 2011, Journal of Internal Medicine
U.S. National Academy of Medicine (NAM, 2015)
The NAM (formerly the Institute of Medicine) concluded:
“This is not a psychiatric illness. The primary feature is an impaired ability to produce energy, with measurable abnormalities in immune and neurological systems.”NAM/IOM Report, 2015
European Concerns: Bodily Distress Syndrome (BDS)
In Denmark and parts of northern Europe, BDS continues to be promoted despite international objections. Experts such as Keith Geraghty and Frank Twisk have published analyses showing that BDS contradicts WHO coding and misclassifies neurological illness as psychosomatic.
Why the Reclassifications Are Spreading Again
Even though the scientific consensus has shifted toward a biomedical model, several forces keep the rebranding alive:
Institutional inertia. Many of the same psychiatrists behind PACE occupy senior academic and policy roles. When the evidence contradicted their theories, they rebranded them under “MUS” or “functional” terminology rather than abandoning them.
MUS and Functional Disorder Clinics. Hospitals in the UK, Denmark, and elsewhere have created clinics that combine ME, fibromyalgia, POTS, and Long Covid under the heading of “Functional Disorders.” Their goal is to reduce testing and focus on psychological management. This saves money but often leaves patients misdiagnosed and untreated.
Policy language about ‘mind–body integration.’ Health systems now emphasize “whole-person care” and “integrated pathways.” In theory that sounds positive, but in practice it often means replacing biomedical care with behavioural therapy.
Long Covid and repetition of history. Post-Covid syndromes share many biological features with ME. Some psychiatrists have tried to frame these as functional conditions, repeating the same mistakes that harmed ME patients for decades.
Patient and expert resistance. Are pressing health services to follow the WHO classifications. Biomedical researchers worldwide continue to publish findings on immune, vascular, and metabolic dysfunction that make the functional labels scientifically indefensible.
Why It Matters
Each time ME is relabeled under a psychiatric or “functional” term, patients lose credibility, medical care, and research progress. These reclassifications are not scientific advances - they are attempts to preserve outdated theories.
The modern evidence shows clearly that Myalgic Encephalomyelitis is a neuroimmune, post-infectious diseasecharacterized by metabolic and vascular abnormalities and post-exertional neuroimmune exhaustion. The World Health Organization, NICE, ICC, CCC, and the U.S. National Academy of Medicine all recognize it as a neurological illness, not a psychosomatic one.
Until medical systems fully align with that reality, advocacy, accurate coding (ICD-10 G93.3 or ICD-11 8E49), and insistence on biomedical investigation remain essential to protect patients from misclassification and harm.
Protecting Against Misclassification
Because some medical systems are still influenced by outdated psychosomatic frameworks, it’s important for both patients and clinicians to anchor ME in its correct diagnostic and legal classification. This helps prevent it from being replaced with MUS, FND, SSD, or BDS labels.
Use the Correct ICD Code
* ICD-10: G93.3 — Post-viral fatigue syndrome / Myalgic Encephalomyelitis
* ICD-11: 8E49 — Post-viral fatigue syndrome. Always ensure that this neurological code appears on your medical record, referral letters, and disability paperwork. This protects against being misfiled under psychiatric or “functional” categories.
Cite Official Guidelines and Statements
When questioned or challenged, reference authoritative sources such as:
* NICE Guideline NG206 (UK, 2021): recognises ME/CFS as a chronic, multisystem disease and warns against CBT/GET as curative.
* WHO ICD-10/11 classification: confirms ME is a neurological illness.
* International Consensus Criteria (ICC, 2011): defines ME as a neuroimmune disease with measurable biological dysfunction.
“Myalgic Encephalomyelitis is classified by the World Health Organization as a neurological disease (ICD-10 G93.3 / ICD-11 8E49). It should not be reclassified as MUS, FND, or any functional disorder. Management should follow biomedical guidelines such as the 2021 NICE recommendation for pacing and symptom support.”
Ask for Biomedical, Not Behavioural, Care
Request investigations that are relevant to ME’s known pathophysiology — such as autonomic testing, immune markers, or cerebral blood-flow studies — and decline programs based solely on psychological re-training or graded exercise.
Maintain Copies of All Documentation
Keep copies of test results, diagnostic letters, and any written confirmation of the G93.3 or 8E49 code. These records can be critical for appeals, disability reviews, or when transferring care.
In Summary
Protecting the neurological classification of ME safeguards both medical accuracy and patient rights. Using the correct ICD code, citing authoritative guidelines, and keeping records ensures that Myalgic Encephalomyelitis is treated as what it truly is: a serious, complex neuroimmune disease, not a psychosomatic or functional disorder.
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I haven't checked it for accuracy.
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Robert 1973 said:
I don’t know if ME/CFS is an option on GP systems now.
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Dx Revision Watch

Post in thread 'Updates on status of ICD-11 and changes to other classification and terminology systems'

Update on Proposals for the ICD-11 code: 8E49 Postviral fatigue syndrome:

On August 26, 2025 a proposal to add additional terms under Synonyms was submitted via the ICD-11 Proposals platform by Dr Islam Ibrahim, WHO-FIC CC (World Health Organization Family of International Classifications Collaborating Center). National Center for Health Information Ministry of Health, Kuwait.

The proposal requested addition of the terms:

myalgic encephalomyelitis/chronic fatigue syndrome​
​
ME/CFS – [myalgic encephalomyelitis/chronic fatigue syndrome]​

This proposal was marked as...
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Sly Saint said:
The International(CDC) I am referring to is the CDC 1994 criteria aka Fukuda, (Sharpe helped with it) there is also the 1988 criteria.

The ICC (International Consensus Criteria) was based on the CCC and generally accepted as OK, not bad as you are saying(??)
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OK, the CDC updated so I guess 1994 criteria are out of date.

The ICC might seem to have been based on CCC but were clearly an attempt to row back to "ME" and to claim a neuroimmunological basis for which there was no evidence. I don't think it is acceptable to most researchers and as far as I know it is not used.

Going back fifty years there were a number of sets of 'diagnostic criteria' for syndromes like rheumatic fever that made some sort of sense as ways to make pragmatic clinical diagnoses. There have also been criteria that may have been useful for research for things like lupus, but once you get beyond a very simple structure of necessary and alternative elements sets of criteria become hard to justify in any logical way. The ICC set seems to have been invented out of thin air by people with no idea why they chose individual criteria other than they sounded as if they fit with their theories. That is the worst of clinical and scientific medicine.
 
Sly Saint said:
This is an interesting post from Wendy Boutilier
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That seems a fairly typical muddle of factual history and misinformation.

It is pernicious to imply that somehow 'physical' diagnoses deserve more respect than psychiatric ones. This is not what people should be arguing about. The problem has been that the BPS people have placed ME/CFS in a category that is neither physical nor psychiatric but 'functional' where functional basically means it is just your own fault for thinking stupid things.

ME/CFS may be best described as a neuropsychiatric disorder, in the sense that this name is given to many neurological disorders that affect thinking where no structural changes have yet been found. I wouldn't use that term and I think when we understand ME/CFS we will see that these categories aren't very helpful, but this is the wrong thing to bang on about.

It is unhelpful when people who do not actually understand the medical basis of things start claiming to be providing authoritative information.
 
Jonathan Edwards said:
The ICC might seem to have been based on CCC but were clearly an attempt to row back to "ME" and to claim a neuroimmunological basis for which there was no evidence. I don't think it is acceptable to most researchers and as far as I know it is not used.
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yes and no
adambeyoncelowe

Thread 'Myalgic Encephalomyelitis or What? The International Consensus Criteria (Frank Twisk, 2019)'

Abstract published today:
Abstract
Myalgic encephalomyelitis (ME) is a neuromuscular disease with two distinctive types of symptoms (muscle fatigability or prolonged muscle weakness after minor exertion and symptoms related to neurological disturbance, especially of sensory, cognitive, and autonomic functions) and variable involvement of other bodily systems.

Chronic fatigue syndrome (CFS), introduced in 1988 and re-specified in 1994, is defined as (unexplained) chronic fatigue accompanied by at least four out of eight listed (ill-defined) symptoms.

Although ME and CFS are...
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It might no longer be used in research, but it has been, and as other posts have pointed out is used by several groups as the 'definitive ME diagnostic criteria'.
Some tried to get it to replace the IOM in the US https://www.s4me.info/threads/petition-to-ask-government-agencies-adopt-icc.5138/
and in India it's being translated into Hindi (2023)
Andy

Thread 'The Hindi Version of International Consensus Criteria: A Cross-cultural Adaptation and Validation Study for... 2023 Shah et al'

Full title: The Hindi Version of International Consensus Criteria: A Cross-cultural Adaptation and Validation Study for Myalgic Encephalomyelitis in Post-COVID Patients

Abstract

Context: Fatigue is the most prominent feature of long COVID. With the increasing burden of long COVID cases post-acute phase of illness after recurrent waves of the pandemic, understanding its pathophysiology is of paramount importance. Such fatigue and post-viral illness could be associated with features of neuroimmune exhaustion and thus be a part of a larger syndrome such as myalgic...
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Jonathan Edwards said:
ME/CFS may be best described as a neuropsychiatric disorder, in the sense that this name is given to many neurological disorders that affect thinking where no structural changes have yet been found. I wouldn't use that term
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No one associated with ME/CFS should. It could be catastrophic at the patient level. We should stick to neurological if only because of the ramifications of bowing to embedded medical biases. Protocol has its utility but it also can be counterproductive and even harmful. The patients should come before convention when the consequences could be dire - and being denied disability allowance, among other things, when you are disabled is dire.
 
duncan said:
It could be catastrophic at the patient level.
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But why? Neuropsychiatric disease is recognised as a source of disability and deserves just as much care and research as any other.

What I think the ICC people have to explain is a simple contradiction in their claims. They claim:

1. That ME is different because it is a neuroinflammatory disease
2. That ME is different because it is not a psychiatric disease

But neuro-inflammation presents clinically as neuropsychiatric disease.
Any medical student knows that. So which is it? You cannot argue both.

The answer is almost certainly that ME/CFS is not a neuroinflammatory disease. But then there is no justification for the ICC.
 
Jonathan Edwards said:
Neuropsychiatric disease is recognised as a source of disability
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In many cases it is not.

Jonathan Edwards said:
That ME is different because it is a neuroinflammatory disease
2. That ME is different because it is not a psychiatric disease
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1) I tend to agree that it is not neuroinflammatory but remain open to it being so.
2) It is not what has traditionally been labeled as a psychiatric disease.

There are some boundaries that we should not cede, concessions we should not embrace. These are not academic issues at the patient level.

Jonathan Edwards said:
he answer is almost certainly that ME/CFS is not a neuroinflammatory disease. But then there is no justification for the ICC.
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I recall when the ICC came out. I gave a copy to my GP which I'm confident he deep-sixed. But in the context of when it came out, and the import to the patient community, it was meaningful. Did it make mistakes? Maybe so.
 
Jonathan Edwards said:
But why? Neuropsychiatric disease is recognised as a source of disability
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That is unfortunately not the case many places, or it’s perceived as a lesser worthy disability that results in less benefits or higher requirements to get benefits.
Jonathan Edwards said:
and deserves just as much care and research as any other.
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True, but it often does not happen, or the funding is given to the BPS researchers that have wasted pretty much every penny.
 
Utsikt said:
True, but it often does not happen, or the funding is given to the BPS researchers that have wasted pretty much every penny.
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But the ICC enthusiasts are effectively claiming that ME is a neuropsychiatirc disease. Maybe they should stop and think about that.

Neuropsychiatric diseases are things like:
Parkinson's disease
Huntingdon's disease
Progressive supranuclar palsy
Cerebral MS
Alzheimer's disease
Niemann Pick disease
Autoimmune encephalitis
Cerebral lupus

ICC surely suggests that "ME" is akin to these.

The categories are unhelpful but I don't see how ICC claims can be understood as making any sense in these terms. If 'import' to the patient community is a medical contradiction is it a good thing?
 
To be clear: I’m not defending the ICC or any current efforts to classify ME/CFS as X.
Jonathan Edwards said:
Neuropsychiatric diseases are things like:
Parkinson's disease
Huntingdon's disease
Progressive supranuclar palsy
Cerebral MS
Alzheimer's disease
Niemann Pick disease
Autoimmune encephalitis
Cerebral lupus
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Sure, but when you google the term, you often get lots of lists with anxiety, depression, addiction, migraine headaches, seizures, eating disorders, uncontrolled anger and so on.

Not PD, HD, AD etc. At least in my experience, those are spoken about as neurodegenerative diseases, or simply neurological or even autoimmune when appropriate (e.g. MS).

I think to many people, as soon as you include neuropsychiatry, it will be associated with the psychosomatic BPS view of things. Both among pwME/CFS and the general public. Even if that clearly isn’t what it means.
 
Utsikt said:
Sure, but when you google the term, you often get lots of lists with anxiety, depression, addiction, migraine headaches, seizures, eating disorders, uncontrolled anger and so on.
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Maybe the point is that doctors wouldn't understand that by the term 'neuropsychiatric'. And we're talking about the gap between what patients and doctors understand things to mean, for which drivel perpetuated via the internet is in no small way responsible.
 
Kitty said:
And we're talking about the gap between what patients and doctors understand things to mean, for which drivel perpetuated via the internet is in no small way responsible.
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How do you imagine doctors get most of their information these days?

ETA: In the realm of contested diseases, patients frequently know more than doctors as it pertains to their disease. The internet is in large part responsible.
 
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