It's a Funny Old World

Another interpretation of ME

A study was recently published (although some might claim it was a large clinical trial of treatments) called the PACE trial) for the condition known as chronic fatigue syndrome (CFS).

This study suggested that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) were more effective supplements to specialist medical care than adaptive pacing therapy (APT).

Both CBT and GET are marketed as non-drug therapies based on the theory that the illness can be improved by appropriately supported changes in behaviour. Such a proposition has for decades been discounted by people who actually have this illness and by the families of patients who have to live with this illness, and by those who have actually tried some of these “treatments”.

But no matter for now.

The trial's publicity spin heralded PACE as the largest ever done of treatments for CFS, included 640 patients and took eight years to complete.

Several major patient organizations dismissed the trial findings – one could not say they dismissed this immediately upon publication as they had been saying the same thing for many years and warning of the biased results which they believed would eventually be published.

The trial methods and indeed the authors of the paper received a lot of valid criticism – on the internet, and elsewhere. For years similar criticisms of psychiatrists having manipulated the illness have been made but the media and the medical journals rarely publish any of these criticisms. Instead patients and patient groups have to experience a torrent of misinformation about the illness.

To the bystander, who has no knowledge of the way that ME has been portrayed as a somatoform illness by vested interests supported by the insurance industry and others, this may seem a curious response to the publication of a study which suggests a positive treatment. The establishment media, supported by the Science Media Centre which has for years presented only the somatoform view of ME (look at who is on the SMC board) quickly and continually provided a gush of responses stating the study produced evidence that these particular treatments were helpful for the condition.

Of course, the media and other figures from medical journals and the psychiatric lobby suggested that patients were angry because they didn't want that treatment to be helpful.

It really is a funny old world – when patients who have nothing to gain from being ill, whose condition is described as worse than cancer or HIV/AIDS and who are regularly ridiculed by psychiatrists, media and healthcare staff, when these same patients do not want to be made well.
What a funny old world – what ungrateful patients.
Why can’t they just believe these people who are saying it is all down to behaviour?

So why this response?

The answer may lie in the different ways that we understand and label the illness.

While most research literature uses the term CFS, patient organizations prefer the term Myalgic Encephalomyelitis (ME).
This is due to the overwhelming biomedical research which has shown ME to be an organic illness yet which receives no funding from the Medical Research Council (previous high-quality biomedical research has been rejected because of a veto by known proponents of the somatoform lobby).

As a consequence CFS and ME are now often used almost interchangeably or combined as CFS/ME – this is mainly maintained by the psychiatrists of the somatoform lobby. These terms indicate different views of the illness despite the fact that ME is clearly identified in the WHO classification ICD-10 G93.3 as a neurological illness. However, this isn’t good enough for those of the somatoform lobby who would really rather prefer the disease to be under the mental health conditions.

The main criticism of the trial from patient organizations is not that a neurological condition would not get better with ‘psychological’ treatments such as CBT or GET – most patient organisations who really represent patients with ME know this is either ridiculous or very, very dangerous.

The reason that patients criticise the PACE study is that the patient cohort was already made up of a heterogeneous group, that the goal posts were changed in the study midway through it. The PACE trial result was predictable from the start and it seems that everything was done to make it fit what was wanted rather than what materialised.

Does any ME patient not believe that the results of the trial were not only misreported to make them look credible but also included mainly patients who did not have ME?

The use of the Oxford diagnostic criteria for CFS to select patients into the trial was criticized as excluding people with neurological illness such as ME. Quite rightly.

None of the recruitment for this trial would really stand up to close scrutiny. The trial did not represent a homogenous group of people with ME but instead a rag-bag group of anyone with fatigue. The Oxford criteria were made by psychiatrists for psychiatrists and really have no role to play in diagnosing or selecting ME patients.

The vexed question then might be whether CFS is a ‘neurological’ or a ‘mental’ condition? Given the classificatory confusion which has been propagated by known advocates from the somatoform lobby a practical approach might be to abide by the World Health Organisation classification – which the UK government has and does accept - i.e. that ME is a neurological illness.

As the somatoform lobby aided by big money and a compromised Medical Research Council has been smothering all the media outlets with misinformation for years then why would anyone expect healthcare staff to take any view other than believing that ME is not a neurological condition, in the usual sense of ‘neurological?

As most patients will know there is a lack of any speciality in the medical field with regard to ME – with people wanting to study ME being put off, with researchers interested in specialising ME losing their careers or being threatened. Most patients will not expect the local hospital neurologists to treat ME as a neurological illness as they have no interest in the condition and no knowledge of it. So we have the absurd situation where neurologists in a hospital do not treat a neurological illness.

Why would it matter if ME were not a neurological condition, at least according to patients?

Because if the examining clinician has no knowledge of the illness, is not acquainted with the biomedical research and is not seeing the symptoms in the correct way then misdiagnosis will be common – exactly what happens now thanks to the ignorance which has been allowed to fester as a result of the blatant bias from those seeing ME as a somatoform illness.

Most ME patients will not perceive a mental illness as a non-illness. They instead know that their condition has arisen due to one or more viruses which have not been identified or treated.

Meanwhile the psychiatrists who belong to the somatoform lobby can continue to dismiss the calls from patients and continue to imply and state that ME is a behavioural illness, feeding the ignorance which maintains that it is not a real illness.

Far from meriting any sympathy for the extreme pain caused by the disease instead patients are victimised and discriminated against due to the misinformation being peddled by people who have no conscience.

What does this mean for the patient suffering from longstanding disabling pain, misinformation, discrimination and forced isolation?

If they choose to pursue a neurological referral they are setting off down a route which is likely to lead to the neurologist they see not accepting that they have a ‘neurological’ condition and offering little in the way of evidence-based treatment – thanks to those who control the media and the funding of research.

If they seek a psychiatric referral they may get CBT which everyone knows to be a false path, but they also risk bringing upon themselves disbelief and the stigma of mental illness – none of which is deserved or has any scientific backing.

Patients often report experiencing frank disbelief from their encounters with physicians or neurologists – yet they also experience complete ignorance of the biomedical research which has taken place and overwhelmingly destroyed the arguments of the somatoform lobby. They experience the lack of any awareness of possible treatments which some trials have established can truly help the treat ME.

Patients with chronic fatigue are the real casualty of the convenient conceptual splitting of physical and mental illness, something which the somatoform lobby does not want to occur. It is in the psychiatrists’ interests to blend and merge less well-known diseases into this somatoform umbrella which encapsulates everything for which there is little funding and where they can manipulate a gullible and ignorant media. Patients with ME do not have their real symptoms treated and the people who are genuinely mentally ill are placed by the side of ME patients suffering from a recognised organic illness. Patients who have illnesses like ME which has been so corruptly portrayed by some organisations and individuals are clearly disowned by proper medical services.

One issue may be whether the question of an illness being neurological or mental makes any sense. The psychiatric = mental and neurological = physical dichotomy is under attack from research which is funded by questionable sources and which wants to pretend that underfunded biological conditions can be watered down and squashed into a one-size-fits-all paradigm which serves nobody – other than those who are employed by insurance companies to dismiss a disease like ME or who receive funding from other quarters which are intent on maintaining the somatoform lobby’s hold over proper science.

As George Bernard Shaw once said –

Beware of false knowledge; it is more dangerous than ignorance.

The logical case for funding proper biomedical research into ME and separating the nonsensical hold that the somatoform lobby currently have over conditions such as ME will be opposed by political inertia, medical ignorance, and fear of losing status and by vested interests who clearly have so much to be concerned about when their gravy-train is derailed.

But progress is being made – and those who portrayed ME in the past are aware that their rich carousel of rewards is about to come to an ignominious end.

And we will know it has succeeded

  • when patients who currently receive a diagnosis of ME no longer have to face a dilemma of whether their illness is neurological or mental because biomedical research will have been given a chance to prove what all patients know already – that ME is an organic illness requiring proper science to explain it and provide treatments for it;
  • when the media and other scientists can accept corrupted and biased non-evidence-based psychological and behavioural treatments for what they are;
  • and when trials of behavioural treatments for these conditions can finally be discarded to the waste bin along with their proponents – something that is long overdue.

Adapted from Chronic fatigue syndrome: Neurological, mental or both - published in Journal of Psychosomatic Research - Article in Press. Author: Professor Michael Sharpe - for which we give grateful thanks and acknowledgement.

Last Update September 2011