‘A delusion is a belief held with strong conviction despite superior evidence to the contrary.’ i
Given the overwhelming abundance of physiological, medical and patient evidence that M.E is clearly a chronic, physiological-neurological disorder caused by a distinct change in the integrated function of the brain, nervous, immune, endocrine, vascular, internal organ and muscular systems collectively, the biased misinformation spread by large segments of the mass media and certain psychologists here in the UK for decades, can only be ascribed as delusions based on the above definition of the word. Many of these delusions are listed below in red. They have been projected at me during the last 10 years or so by the very people I sought care and guidance from whilst acutely ill. These are not listed to ‘name and shame’ rather to shine light on these shadows currently unfolding in M.E; shadows that have caused the abuse and deaths of acutely ill people for too long.
1) ‘The situation for people here in the UK with M.E is getting better’ Media article.
This is perhaps one of the greatest delusions held about M.E. Particularly in the last 20 years, the situation facing people who develop M.E has been made worse because of the confusion of M.E and ‘fatigue’ syndromes; psychologists introducing ‘Cognitive Behavioural Therapy’ and ‘Graded Exercise’ regimes that are proven to severely regress M.E patients rapidly; psychologists changing M.E from a neurological classification to a psychological one in the medical practitioner guide handbook; this has led to many M.E sufferers not being able to access the medical care and social support systems they desperately require to survive. This is not reflective of ‘things getting better’ for people who develop M.E; things have been made significantly worse by vested interest groups pursuing personal careers and Govt funding (Psychiatrist Simon Wessely as an example).
2) ‘M.E is simply a story of struggling and suffering.’ A psychologist at a ‘specialist clinic for Chronic Fatigue/ME’ after viewing the Canadian Consensus doc.
As if M.E sufferers are not actually seriously physically ill, but simply repeating ‘a story’ whereby they only claim to be ill due to a mental fixation. The reality is that people who develop acute M.E are some of the most seriously ill and disabled people imaginable. Acute M.E is an illness ‘once seen never forgotten’.
3) ‘M.E patients simply have a strong psychological pull to physical suffering.’ A psychologist at a ‘specialist clinic for Chronic Fatigue/ME’.
The intensive, prolonged and persistent nature of the physical suffering seen in M.E is a direct and proven result of the intensity of the multi-systemic dysfunction they are experiencing in a relentless manner, operating outside of what is normally ever experienced at any level in day-to-day life. It is not simply of ‘psychological origin’; i.e patients believing they are in more pain than they really are. The secondary psychological suffering of patients with M.E is caused by the very real intensity and acute nature of the condition and the breakdown of their lives at every level, exacerbated by social/medical scepticism/abuse.
4) ‘Chronic Fatigue/M.E, whatever we want to call it…’ A flippant psychologist at a ‘specialist clinic for Chronic Fatigue/ME’.
As if we can call a clearly defined neurological condition by any other term we like! The term M.E was carefully chosen by medical doctors for important and particular reasons, clearly defining the presenting pathology/neurology of patients affected. M.E was classified in 1969 as a distinct neurological condition substantiated by a clear criteria of patho-physiological/neurological symptoms.
5) ‘M.E is a mysterious and rather glamorous illness, in which sufferers attain attention and sympathy from friends and family’ A professor of psychiatry. ii
M.E is not mysterious at all. The term exactly describes an acquired/chronic physiological-neurological disorder. The function of the brain and nervous system is adversely affected/changed and because of this many other systems in the body breakdown and falter (multi-systemic). M.E is made worse by all forced and voluntary physical and mental activity because the brain/nervous system/body is damaged so no longer respond in a healthy manner to ANY demands placed upon it. Chronic/acute illness, the breakdown of individuals’ lives at every level, medical/social abuse, facing years of isolation, medical/social scepticism/denial/ignorance and more, is not glamorous in any way. People who develop M.E receive little (if any) ‘attention and sympathy from friends and family’; on the contrary, they are often subject to abuse and neglect, years of isolation/denigration, accusations of ‘all in your mind’ ‘just a story your clinging too’ and more bullshit as this very website page proves.
6) ‘M.E doesn’t exist.’ A General Practitioner at a local surgery and a newly trained doctor ‘friend’ of my in-laws.
M.E was listed as a neurological disease in 1969 and the evidence shows that it has been identified and studied for nearly 100 years in various forms. iii
7) ‘M.E is simply a psychological problem.’ A GP at a local surgery.
Such ludicrous opinions completely overlook the abundant swathe of presenting medical evidence, the direct experiences of patients and the distinct change and deterioration in their health at every level. Nobody who witnesses how a person with M.E presents would ever entertain such notions. Facing such dangerous misinformation at the hands of the alleged ‘profession’ put in place to assist the severely-ill is concerning to say the very least and can only be ascribed to the unlawful intervention of psychologists in M.E. Why have medical doctors allowed themselves to be so blindly, but wrongly led?
8) Upon presenting 10 years of direct evidence of the effects of M.E and the continued physical symptoms, a GP at a local surgery replied: ‘All hearsay’.
Patient evidence used to be a fundamental and important part of conventional medicine; today the situation sadly seems very different. Patients who have M.E often honestly directly record a body of written evidence about the condition based in their direct experience. Many of the related writing corresponds in the manifest symptoms and the overall profile of M.E amongst individuals worldwide who have never even met before. Such evidence cannot be dismissed as ‘all hearsay,’ it should play an important role in developing a clear profile of M.E.
9) Upon requesting PECT and SPECT scans at a local surgery to ascertain the cause of the continued neurological symptoms, the GP replied: ‘No, they don’t always show something’.
It’s proven that both PECT AND SPECT scans often reveal clear abnormalities in the brainstems of patients who have genuine M.E. So to deny a patient/patients access to such investigation who are long-term affected with M.E and want to get better, seems disgraceful and only condemns individuals to further unnecessary suffering. Psychologists are implicit in these practices by wrongly suggesting that ‘medical investigations in ‘fatigue/M.E’ patients only makes them worse because they have increased ‘incorrect illness belief ‘in proven physical symptoms that feed they’re neurosis’; duh.
10) When explaining symptoms of severe abdominal congestion and constant pain in my nervous system, the local GP replied: ‘Abdominal congestion means nothing to me as a symptom and you can’t have pain in your nervous system.’
A significant part of the symptom profile and experience of M.E is a significant and continued type and intensity of pain in the brain and nervous system previously not present. Indeed, particularly the nerve endings terminating in the skin across the legs are literally ‘on fire’ 24/7 and this pain is increased by all physical and mental activity. This disseminated type and intensity of pain is NOT the same as normal muscle pain experienced as a result of lactic acid after exercise. A main symptom of serious Liver congestion/dysfunction is often severe abdominal congestion.
11) ‘People with M.E are just depressed; M.E is undiagnosed depression’ various sources: media, ‘friends’ family, ‘complementary practitioner’.
Many patients with M.E may experience bouts of reactive depression due to the illness they are experiencing, but they are not necessarily clinically depressed. A clear indication of the difference between M.E and depression is that M.E is made significantly worse by exercise whereas depression is often improved by exercising, due to the release of adrenalin and endorphins. PECT AND SPECT scans show that M.E sufferers have damage/dysfunction to the brain stem, infection of the spinal chord and serious cardiac/blood flow abnormalities; people with depression don’t.
12) ‘The doctors claim there’s nothing wrong with your brain.’ Family member relating the opinions of GP’s who did no neurological test on me at all.
People who develop M.E often complain of and present with a wide and marked set of adverse neurological symptoms previously absent that soon become acute and overwhelming (particularly if they are coerced or forced to keep exercising as the condition develops). Alongside the clear evidence of PECT and SPECT scans showing dysfunction at many levels simultaneously in M.E, ENT tests often confirm marked balance dysfunction, problems with the inner-ear canals and abnormal eye movements/dysfunction in sensory organs which are extensions of the nervous system. The spinal chords of people with M.E who die often show marked damage and severe infection in autopsies. Clearly, the evidence indicates there is something seriously wrong with M.E sufferer’s brains and the symptoms are NOT ‘imaginary’ as we have been mislead to believe.
13) ‘M.E seems to be a collective experience.’ ‘M.E is epidemic.’ Complementary practitioner/writer on herbalism.
Prior to the change to the term ‘Chronic Fatigue’ in the early-mid 1990’s, M.E affected only an estimated 0.5% of the population; hardly a ‘collective experience’. Rather, it was an experience of a small patient group that had the same condition. Although isolated epidemics of M.E have been recorded in the past, true M.E is not epidemic at all. Rather, the confusion of ‘Chronic Fatigue’ and M.E has created a much larger group of patients under this banner even though people who are ‘fatigued’ don’t necessarily have the neurological condition M.E. The number of patients with genuine M.E is much smaller in reality.
14) ‘M.E is just a case of ‘feeling tired’ or ‘being fatigued’ isn’t it?’ neighbour.
People who develop M.E DO NOT simply ‘feel tired’ or are ‘fatigued’. Rather, because they have a multi-systemic physical/neurological illness many of the internal systems, internal organs and brain go into survival mode and thereby people with M.E have little (if any) available energy to do anything; they are bed/housebound because they are acutely physically/neurologically ill. ALL symptoms are not refreshed by any amount of sleep in M.E, they remain constant and acute for years on end. They ARE NOT simply ‘sleeping due to feeling tired or fatigue’. Healthy people get ‘fatigued’ but they do not have M.E.
15) ‘You’re just clinging to an old story.’ Complementary practitioner after years of personally engaging in treatment without a resolution to M.E.
Of course, this is a projection of ignorance, blame and denial of responsibility in disguise here. To suggest that people with M.E are simply ‘clinging to an old story’ because their physical/neurological symptoms remain largely unchanged after investing a huge amount of personal effort, energy and money in a treatment modality in the hope of a cure and progress, is clearly delusional. M.E is not ‘just a story’ or ‘patients believing they’re ill when they’re not’. The term exactly describes a particular presenting set of symptoms in patients who develop/are affected by the condition, and for very important reasons.The careless use of such unsubstantiated psychobable has been (and is) extremely harmful to people who develop M.E and does nothing to help or assist them, whilst some ‘complementary’ and ‘conventional’ therapists take huge sums of money for doing so, and then wash their hands of the patient thereafter.
16) M.E patients and ‘Complementary’ Health-care practitioners collude to convince themselves that people with M.E are physically ill, when in-fact they are not.
People who develop M.E are often left with no choice but to pursue ‘complementary’ therapies in perseverance of improvement and cure, because ‘conventional’ medicine often denies them access to treatment or offers them little answers or support outside flawed and harmful psychology, and ‘reverse, repress and correct’ symptomatic drug relief for symptoms without serious inquiry into the actual underlying cause of M.E. Patients with M.E are often severely allergic to ‘conventional’ medicine and in some cases death is caused by severe allergic reactions to pharmaceutical drugs. It costs huge sums of money to pursue ‘complementary’ therapies and many with M.E sell all their possessions and borrow thousands on credit card in a determined effort to return to full-health. I know of people who have even sold their home to do so. Intelligence dictates that no patient group would do so whilst apparently simply ‘believing they are ill when they are not’; reason dictates that the organic severity of M.E drives their perseverance in ‘complementary’ therapy in desperation to be well, NOT maintain illness. Overwhelming physiological-neurological medical evidence irrefutably proves M.E is an organic-acquired-chronic-disabling illness. Therefore, in their own words, ‘Psychologists simply have an incorrect illness belief about M.E and require psychotherapy to correct their aberrant thinking/false beliefs.’
17) M.E patients require sectioning in order to protect them from ‘overly protective mothers’ maintaining their illness (Mauchausen’s syndrome) Psychologists.
People who develop M.E DO NOT require sectioning as they are of no harm to anyone. Many with M.E who are wrongly sectioned are made significantly worse and even die as a result of such unlawful actions. People with M.E are physically-neurologically acutely ill and simply require appropriate medical care; they ARE NOT insane. Many mothers who care for and seek to protect their children who develop M.E do so from genuine love for their child, NOT because they have ‘Munchausen’s syndrome by proxy’ as psychologists irrationally suggest. It’s psychological intervention and psychobable in M.E that’s abusive and very dangerous, NOT motherly love or people with M.E confined to a bed in bedrooms in total isolation.
18) M.E is simply a case of female neurosis. Psychologists.
M.E affects females and males alike; it makes no distinction between genders. A higher number of females are affected simply because of their more complex endocrine (hormonal) systems. The greater complexity inherent in any biological system, the higher the possibility of that system breaking down or being adversely affected or damaged by external factors such as viruses, toxins and more. Females also often work in occupations that indicate a high susceptibility to developing M.E due to exposure of many of the factors that cause M.E, like viruses/toxins etc. Hospital/caring work for example. All individuals who develop M.E are NOT simply ‘neurotic,’ they are severely physically/neurologically ill.
Currently, and as a direct consequence of the hijacking of M.E by psychologists, the public, media and medical practitioners alike are holding to, and acting upon, a clearly flawed set of delusions about M.E. This has and still is, leading to the unnecessary neglect, denigration, misrepresentation, abuse and deaths of people who develop M.E. Intelligence itself dictates this is unacceptable in an alleged ‘advanced society’.
We can choose to act from a different place and transform the lives of people with M.E for the better by understanding and treating M.E as the acquired, physiological-neurological illness it truly is.
We don’t always have all the answers to many medical conditions; we do have the choice of what we create in relation to those presenting conditions and how we treat those affected.
So, in relation to M.E, do we continue to choose (and act upon) intellectual arrogance or intellectual reasoning based on the overwhelming presenting evidence?
ii Dr Anne Macyintyre ‘M.E’ 1998.
iii World Health Organisation 1969 & ibid.
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