Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms).

[Eagles]

Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms).

http://www.oneagleswings.me.uk/dead-but-it-wont-lie-down/

(I did not write this article, but the author (who wishes to remain anonymous) has given me permission to put it on my website.)

How the myth began

Governments in the 1980s, confronted with numbers of people being diagnosed with ME, were concerned about the financial impact of the condition. The possibility that psychiatrists could offer treatments such as talking therapies, graded exercise or antidepressants, seemed a comparatively inexpensive way out. The idea of dealing with ME as a psychiatric rather than a physical condition was helped by an article in The Times which used the term “yuppie flu”, a term which somehow impressed itself on many minds. The use of the term “chronic fatigue” has also both trivialised and confused the situation. After all, chronic fatigue is a symptom of many conditions, and is hardly a description of the many serious symptoms of ME…

 

[Snowdrop]

It continues HERE

Serious question. Do we really have enough robust proof of physical pathology to undermine the GET/CBT premise?

 

[Amy101]

It continues HERE

Serious question. Do we really have enough robust proof of physical pathology to undermine the GET/CBT premise?

I think so considering that people have physically died from the condition and had this acknowledged, the consistent findings within post mortems, and the amount of serious harm GET has caused to sufferers and how such treatment has caused sufferers to become worse

 

[Simbindi]

It continues HERE

Serious question. Do we really have enough robust proof of physical pathology to undermine the GET/CBT premise?

Yes. There is plenty of proof in the clinical presentation itself, as well as the trajectory of the disease.

Patients have had decades of gaslighting, undermining this. A clinician that takes the time to actually listen and understand what ME patients are saying about their illness would understand it: that it is not 'chronic fatigue not explained by another condition', but much much more specific.

 

[Esther12]

Serious question. Do we really have enough robust proof of physical pathology to undermine the GET/CBT premise?

We don't even have a way of clearly identifying who has ME/CFS and who does not. At the moment I think that any attempt to argue that the evidence around possible physical causes undermines CBT/GET as a treatment will just strengthen the hand of Wessely/White/Sharpe.

 

[Simbindi]

We don't even have a way of clearly identifying who has ME/CFS and who does not. At the moment I think that any attempt to argue that the evidence around possible physical causes undermines CBT/GET as a treatment will just strengthen the hand of Wessely/White/Sharpe.

I dont think that is true. For example, currently autism is diagnosed based on symtoms and clinical judgment only - there is not a reliable biological marker or test for it and there always remains the possibility of misdiagnosis of individuals. Athough there are some specific genetically caused forms of autism, the majority of cases are of unknown cause.

None of the behavioural-psychological tests used as part of the diagnostic process in autism mean much on their own, they have to be considered along with other clinical observations, the individual's developmental history, past and current social and communication difficulties etc. Each autistic individual has a unique presentation.

But I don't think there is any doubt amongst researchers and clinicians that autism is a neurological (or more specifically, neurodevelopmental) condition or that anyone still seriously believes it is caused by psychological factors (including beliefs that influence behaviours) - even France is finally leaving behind it's 50 year belief that autism is a psychiatric condition:

https://www.theguardian.com/world/2...-plan-to-improve-rights-of-people-with-autism

Edited to add:

So, I don't understand why ME (or ME/CFS) has to have a biological marker or a way to clearly delineate who has and doesn't have the condition, in order to for it to be considered a physical (non-psychiatric) illness/disease.

 

[Esther12]

I dont think that is true. For example, currently autism is diagnosed based on symtoms and clinical judgment only - there is not a reliable biological marker or test for it and there always remains the possibility of misdiagnosis of individuals. Athough there are some specific genetically caused forms of autism, the majority of cases are of unknown cause.

None of the behavioural-psychological tests used as part of the diagnostic process in autism mean much on their own, they have to be considered along with other clinical observations, the individual's developmental history, past and current social and communication difficulties etc. Each autistic individual has a unique presentation.

But I don't think there is any doubt amongst researchers and clinicians that autism is a neurological (or more specifically, neurodevelopmental) condition or that anyone still seriously believes it is caused by psychological factors (including beliefs that influence behaviours) - even France is finally leaving behind it's 50 year belief that autism is a psychiatric condition:

https://www.theguardian.com/world/2...-plan-to-improve-rights-of-people-with-autism

But no-one uses this classification of autism to argue that, therefore, behavioural interventions are not effective. Different diagnoses can be applied for different reasons, and with differing degrees of usefulness, so I can see how people can argue that (by the standards of much medicine) we can meaningfully identify who has ME/CFS and who does not, but I don't see any good argument from that to use against the way CBT/GET have been misleadingly promoted to patients.

 

[Simbindi]

But no-one uses this classification of autism to argue that, therefore, behavioural interventions are not effective.

Well, there are plenty in the autistic community who do make the argument against the effectiveness of behavioural interventions for a neurodivergent individual! However, that is a big topic which I can't do justice to on this forum.

 

[Simbindi]

Different diagnoses can be applied for different reasons, and with differing degrees of usefulness, so I can see how people can argue that (by the standards of much medicine) we can meaningfully identify who has ME/CFS and who does not, but I don't see any good argument from that to use against the way CBT/GET have been misleadingly promoted to patients.

But that is because those promoting CBT/GET for CFS/ME have ignored the actual clinical presentation of ME (or CFS/ME), ignored the post exetional malaise (and that PEM is much more than post exertional fatigue), have wrongly asserted that the condition is simply '6 months of fatigue that is not explained by another condition', ignored that there is rapid muscle fatiguability, ignored there there are severe cognitive impairments even in so called 'mild' sufferers, ignored that cognitive exertion alone can lead to severe PEM, ignored patients trying to explain that they are not deconditioned (many of us were active when our condition allowed us to be) etc., etc.

And, as @Amy101 has emphasised, they have even ignored the reality the patients have died from this disease.

Edit: Writing that last sentence brought tears to my eyes. It does everytime I think of Merryn.

 

[Esther12]

Well, there are plenty in the autistic community who do make the argument against the effectiveness of behavioural interventions for a neurodivergent individual! However, that is a big topic which I can't do justice to on this forum.

You keep rightly pointing out when I've been loose with my language (I really need to be more careful), but still, the arguments about the legitimacy of seeing autism as something that should be 'treated' are very different to concerns about CBT/GET as a treatment for CFS.

Actually, I suppose there are some similarities in relation to concern about the extent to which CBT/GET can be used to impose a particular conception of what a functional person should be. But there are almost no ME/CFS patients who do not want a genuinely effective treatment that could lead to them no longer being classed as having ME/CFS, and classing autism as a neurodivergent disorder hasn't led to the medical profession as a whole dismissing behavioural interventions.

 

[Simbindi]

You keep rightly pointing out when I've been loose with my language (I really need to be more careful), but still, the arguments about the legitimacy of seeing autism as something that should be 'treated' are very different to concerns about CBT/GET as a treatment for CFS.

I was actually using autism as an example of nosological classification and diagnostic difficulties, not to imply the the condition itself has similarities to ME or making comparisons between treatment limitations in these disparate conditions. I was responding to your statement that we do not 'even know enough to identify who has and does not have ME/CFS'. That was the reason for using autism as an example (one of many that I could have used) to highlight that these diagnostic difficulties are not a reason to be cautious about claiming that we have a physical (as opposed to psychiatric) condition.

Edit: But when I see a misunderstanding about autism I am obviously going to challenge it.

 

[DokaGirl]

I don't know if we have enough physical evidence to undermine the GET/CBT premise. I believe we do, but will the authorities. On the other hand, these erroneous theories will always be with us. People with other terrible physical illnesses are still told CBT and GET will improve their lives. We need enough physical evidence to move the dial towards biomedical treatment research. And, we need increased awareness for all pwME that BPS "therapies" are not going to cure them. In fact, may harm them.


@Simbindi

On the point of the BPS group ignoring many important symptoms of ME I agree:

@Tom Kindlon's article re the 2007 NICE guidelines communication with a BPSer, where many facets of ME were denied by this practitioner:
https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/

 

[Andy]

Serious question. Do we really have enough robust proof of physical pathology to undermine the GET/CBT premise?

Personally I would rephrase the question to "After 30 years of GET/CBT research, is there any reliable evidence that GET and/or CBT actually works for pwME?". We don't need proof to undermine something that hasn't been proven, we just need to highlight the unproven state, despite many trials having been done in an attempt to prove the efficacy.

 

[Mithriel]

ME was described from epidemics which means that it is the description of an infectious disease. That can only be a physical illness. We may suspect now that it can be caused by other physical insults but if there is a physical subset it cannot be a psychological disease.

Now the psychiatrists tried to dismiss the epidemics by calling it mass hysteria using as their evidence that women easily suffer from mass hysteria. This is no proof of anything. To show that these epidemics were different from all other epidemics by being psychological you need strong exceptional evidence. A statement about women is not that sort of evidence especially since one was in a male army barrack!

Since those days they have continually distorted the symptoms that patients have to make it fit a psychological or behavioural etiology by the use of invalid questionnaires which were not meant to be used in the case of physical illness and by elevating fatigue, a particularly wide spread symptom and not a particularly important one in ME, to the only symptom worth considering.

They kept insisting ME was a new type of disease which sat between the physical and psychological but have never given any good evidence for such a thing existing.

The onus should have been on them to prove it was not a physical disease, but they have used cronyism, control of the media and manipulated science to push their agenda.

They ignore physical signs such as the 2 day CPET which disprove what they say.

 

[Simbindi]

I don't know if we have enough physical evidence to undermine the GET/CBT premise.

But what evidence does the 'GET/CBT premise' actually have? The deconditioning theory is just that, an unevidenced theory. That has been highlighted in many threads across the forum.

What we are facing isn't a GET/CBT premise based on robust scientific evidence, what we are facing is gaslighting, political manoevering by a small but powerful group of psychiatrists who have dominated the 'CFS' field, eminence based medicine, lazy GPs who have abdicted their duty of care towards their very sick and disabled patients, consultants who lack the humility to say 'I don't know what is causing your symptoms - medical science is incomplete', government benefit departments and health insurers who want to save money on disability payments and can see we are are easy targets, etc etc.

Because of the internet we now know there are millions of CFS/ME sufferers across the globe, most of whom have not been able to be 'reconditioned' into a healthy state by increasing their activity levels. Millions of clinical presentations showing PEM! Millions showing rapid muscle fatiguability as a symptom! Millions showing severe cognitive problems even with so called 'mild' ME. Millions of patients who have tried to get themselves well, are not depressed (with the exception of the reactive depression that comes with living with chronic illness), patients who have had ME for decades and demonstrate this is a long term, severe illness. Etc., etc.

All these patients are actual clinical evidence that this is not a psychiatric disease, not a disease of deconditioning caused by faulty illness beliefs. I don't think we should underestimate this resource. Back in the late 1980's when the BPS crowd took over ME and turned it into 'CFS', this global evidence wasn't so evident.

As the author of the article writes [bolding mine]:

'Over the years there have been those who have dedicated their time and their medical knowledge to understanding this illness. Able by their medical experience to recognise a serious physical condition, they have also been able to understand some of the physical causes which must lie behind the many symptoms. Their belief in what patients were telling them and their persistence in seeking answers has been the one ray of light in a very dark tunnel for those who have been ill for years or decades, without help and support.'

Prehaps back in the late 80's and early 90's when the Weasel-led school hijacked ME and turned it into '6 months of unexplained fatigue', doctors may have been naive in their complicity because they would not have had ready access to a broader knowledge base about the condition. Now, 3 decades later, with the impact of this condition on patients' lives well documented globally and readily available electonically, I don't think they have any excuse for ignorance.

We should be confidently calling out medical, professional and scientific laziness, neglect and gas-lighting for what it is - not allow ourselves to be side-tracked into thinking we have to disprove unevidenced theories. Where is all the robust, high-quality scientific evidence showing that ME is caused by 'deconditioning due to fear of activity' or that 'it is a psychiatric illness' or 'has a pscyhological component maintaining it'? Three decades is a lot of time for the required evidence to be amassed if the BPS theories have any reality underlying them, after all this is the area where the vast majority of the research funding has been spent!

 

[alex3619]

ME was described from epidemics which means that it is the description of an infectious disease. That can only be a physical illness.

I agree that ME is a physical illness, but this reasoning has issues with it. ME from epidemics does not prove its an infectious disease, only raises it as a distinct probability. Its associated with infectious disease, and nearly certainly a consequence of infectious disease, but the disease and ME can be different. This is where the bipsers insert their arguement. Its a consequence of infectious disease, according to them, but its psychiatric in nature, not physical (ignoring for now the sophistry that psychiatric is both physical and mental).

It is not a proven point that ME is only a physical illness, unless you are convinced that mental disease is also entirely physical (which I currently am). However you wont convince those still stuck in the body-mind dichotomy. They need to modernise to the body-brain concept. Unfortunately that is still most psychiatrists and the majority of other doctors who need to ditch the concept of mental disease as its traditionally considered.

Without distinguishing between the concepts of mind and brain, most mental health adherents are likely to cite concentration and memory problems, altered sensory perception, brain fog, problems with math, word confusion and etc. as evidence of mental problems. Indeed I have all those symptoms. However to me they are far better explained by brain problems, which are in turn rooted in brain biochemistry. That chemistry is aberrant, not our "minds".

We will be unable to prove the extensive physical nature of ME until we have a diagnostic test and an explanation of the primary pathophysiology. Its only very, very likely. Their Achiles heel is that they have had well over a century of making these kinds of claims about physical illness, and have universally been wrong whenever we finally understood the disease in question. There is no exception. If they were a sports team in a national or international league they would have the unenviable position of being a team that, while scoring some points here and there, has never won a game ... in over a century.

I think its almost inevitable we wll completely win this debate. The questions are when, and how can we get there faster?

PS Using the sports team anology, they keep changing the name of the team in the hopes that people will forget or never learn about their unenviable losing streak.

 

[DokaGirl]

But what evidence does the 'GET/CBT premise' actually have? The deconditioning theory is just that, an unevidenced theory. That has been highlighted in many threads across the forum.

What we are facing isn't a GET/CBT premise based on robust scientific evidence, what we are facing is gaslighting, political manoevering by a small but powerful group of psychiatrists who have dominated the 'CFS' field, eminence based medicine, lazy GPs who have abdicted their duty of care towards their very sick and disabled patients, consultants who lack the humility to say 'I don't know what is causing your symptoms - medical science is incomplete', government benefit departments and health insurers who want to save money on disability payments and can see we are are easy targets, etc etc.

Because of the internet we now know there are millions of CFS/ME sufferers across the globe, most of whom have not been able to be 'reconditioned' into a healthy state by increasing their activity levels. Millions of clinical presentations showing PEM! Millions showing rapid muscle fatiguability as a symptom! Millions showing severe cognitive problems even with so called 'mild' ME. Millions of patients who have tried to get themselves well, are not depressed (with the exception of the reactive depression that comes with living with chronic illness), patients who have had ME for decades and demonstrate this is a long term, severe illness. Etc., etc.

All these patients are actual clinical evidence that this is not a psychiatric disease, not a disease of deconditioning caused by faulty illness beliefs. I don't think we should underestimate this resource. Back in the late 1980's when the BPS crowd took over ME and turned it into 'CFS', this global evidence wasn't so evident.

As the author of the article writes [bolding mine]:

'Over the years there have been those who have dedicated their time and their medical knowledge to understanding this illness. Able by their medical experience to recognise a serious physical condition, they have also been able to understand some of the physical causes which must lie behind the many symptoms. Their belief in what patients were telling them and their persistence in seeking answers has been the one ray of light in a very dark tunnel for those who have been ill for years or decades, without help and support.'

Prehaps back in the late 80's and early 90's when the Weasel-led school hijacked ME and turned it into '6 months of unexplained fatigue', doctors may have been naive in their complicity because they would not have had ready access to a broader knowledge base about the condition. Now, 3 decades later, with the impact of this condition on patients' lives well documented globally and readily available electonically, I don't think they have any excuse for ignorance.

We should be confidently calling out medical, professional and scientific laziness, neglect and gas-lighting for what it is - not allow ourselves to be side-tracked into thinking we have to disprove unevidenced theories. Where is all the robust, high-quality scientific evidence showing that ME is caused by 'deconditioning due to fear of activity' or that 'it is a psychiatric illness' or 'has a pscyhological component maintaining it'? Three decades is a lot of time for the required evidence to be amassed if the BPS theories have any reality underlying them, after all this is the area where the vast majority of the research funding has been spent!

I totally agree. I'm with you on this.

I should have separated my comment into two parts:

1) We do have enough evidence to prove ME is a serious, debilitating physical disease.

And 2): However, I don't know if we can undermine their campaigning to contain ME in the CBT/GET bailiwick, despite enormous amounts of evidence ME is a devastating physical disease.

They deny any biomedical findings, but have not proven ME is just imaginary, although they repeatedly say they have.

Their beliefs are very popular with governments, and the disability insurance industry. Dare I also say their views are popular with some in health fields who don't want to tackle such a complex disease.

The BPS against ME campaign is the same method used by the tobacco industry who said to those warning of the health hazards: "Prove it." Not the other way round.

Critical mass of evidence and awareness will hopefully win the day, and many are working hard to make this happen.

ETA: I want to add that I am not defeated by the BPS bunk! Much the opposite is true where my views and attitudes are concerned.

 

[Simbindi]

Without distinguishing between the concepts of mind and brain, most mental health adherents are likely to cite concentration and memory problems, altered sensory perception, brain fog, problems with math, word confusion and etc. as evidence of mental problems.

But even bracketing (leaving aside) the debate on mind, brain and body, we can make a useful distinction between a 'mental problem' and a 'mental health problem', within the context these terms are commonly used in everyday medical and health encounters.

For example, nobody considers the cognitive, sensory and perceptual processing difficulties in autism (which I am just using as an example because I am familiar with this particular neurodevelopmental condition) as being caused by mental health difficulties, even though they all involve mental (brain) processes. I can talk about my autistic difficulties in these areas without any reference to either my physical or mental health.

Furthermore, scientists do not need to consider the autistic people's beliefs and mental health states when investigating what is happening in areas like memory, attentional bias, sensory and perceptual processing, word recall and executive function difficulties in autism. So, researchers clearly understand the difference between mental processes happening in the brain, and the term mental health as used to describe a person's mental well-being and beliefs.

I really do feel the problem of needing to 'prove ME is a physical disease' is a trap we have been manipulated into. The BPS 'scientists' [sic] have not proved that there is a psychological component to ME/CFS that is perpetuating and maintaining the condition. They just asserted that to be the case 30 years ago - and then decades of gaslighting patients has ensued. This gaslighting has included making arguments about 'mind-body dualism' and portraying ME patients as resistant to accepting that mental health conditions are as 'real' as physical ones.

I really don't believe the average GP spends their spare moments in clinics wondering whether they need to rethink their dualistic beliefs! They know there are biological factors underlying both physical and mental illnessess, but (because they experience the human condition too) they are aware mental health and well-being can also be influenced by social and psychological factors. When considering the ME debate, I think we have to keep the focus on the language of 'mental health' as it is used every day in conversations between doctors and patients - not get side-tracked into a philosophical debate about the brain-mind-body (as interesting as that topic may be).

 

[Simbindi]

The BPS against ME campaign is the same method used by the tobacco industry who said to those warning of the health hazards: "Prove it." Not the other way round.

Critical mass of evidence and awareness will hopefully win the day, and many are working hard to make this happen.

Well, the tobacco industry were finally exposed!

 

[Wonko]

The tobacco industry may not be the most comforting example.

Millions may have died and yet more millions may still do so.

They may have had to curtail some activities, in some areas business may be more difficult, but they are still harming people freely, and charging them for the privilege.

So possibly not the way I want things with ME to go.