This is the second in a three part series of articles looking at related issues. The first article can be found here, and explores Dr Sykes’ reply to the ME Association regarding the Science Media Centre’s recently coverage of new biological evidence in ME/CFS.
This article is going to explore the broader topic of why it matters whether the disease is considered physical or psychological.
Dr Sykes believes that, “Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two.”
What an extraordinary statement. I would have to argue the opposite: Any organization serious about ME/CFS absolutely must care.
An example outside of ME/CFS
In 1980 the claim was still being made that incest occurred in fewer than one in a million women, and that its impact was not particularly damaging. (Bessel Van der Kolk, Traumatic stress, 1996 P61, quoting H Kaplan et al 1980 Comprehensive Textbook of Psychiatry – the leading U.S. textbook of psychiatry at the time).
It was the promotion of such attitudes that enabled child sexual abuse to continue to be hidden and denied, adding insult to injury to the victims, and we have only recently begun to see things how they really are, and to give it the serious attention it deserves. We still have some way to go even in 2015, with revelations of historic sex abuse, and cover ups printed almost daily in the UK press.
They were wrong about child sexual abuse, and they are wrong about ME/CFS.
Suppose we diverted at least half the money used to protect children against sexual abuse to investigating and treating why they believe they have been abused. Does any serious organization think that would be reasonable?
No, didn’t think so.
The lens of money can show that matters of cause and treatment are not matters of indifference and cannot be lightly dismissed as something not to be cared about.
As the first article in this series highlighted: a common tactic of those promoting psychological models of ME/CFS, is to avoid the subject of physical aetiology by changing the subject to the acceptance of psychological illness in general, portraying those who do not think ME/CFS is psychological as mental health bigots, believing mental health is inferior to, or less real than, physical health.
By pretending that this is the issue, it derails the original topic and puts all the focus and attention on this non-relevant issue, rather than where it should be – that ME/CFS, like other diseases with non-psychological aetiology and symptoms, such as cancer, ought to be researched and treated accordingly. And that core psychological treatments would be inappropriate for such a disease, in the same was as chemotherapy would not be an appropriate treatment for mental health illnesses such as depression.
The profession of psychiatry is usually the source of — and the perpetuator of — such destructive attitudes. But the problem is one of stated belief, not title, and there are a growing number of psychiatrists who are stating clearly that ME/CFS is a biological disease, and this number will grow as the psychological dogma about ME/CFS becomes increasingly untenable.
Why it matters
Maintaining the false view that ME/CFS is psychological has the following repercussions:
* The limited research funding there is will continue to be spent on mental health studies that will continue to prove fruitless (around 80% of research to date has been on mental health studies and they have failed to deliver: see Graham McPhee’s excellent analysis of this reality), while biological studies remain unfunded and thus, no progress is made.
* A further reason to care if the causes are physical, psychological or mixed should be apparent to everyone. If it is loudly declared that this may be a psychological and not a physical disease you will undoubtedly discourage research funding. Organisations are going to be reluctant to fund research into a disease that may have no physical origin.
* Harmful and ineffective treatments will continue to be promoted, their benefits being overstated.
* The public perception will continue to be that ME/CFS patients are malingerers, who would be back at work and off the taxpayers back if only they would take antidepressants, cognitive behaviour therapy or graded exercise therapy.
* General Practitioners believe they can diagnose as a psychosomatic condition and not have to investigate if anything else is wrong or if other symptoms need treatment.
* Appropriate existing medications for symptoms such as pain will continue to be difficult for patients to access, as doctors are led to believe that these symptoms are psychosomatic.
* Insurance companies will continue to deny payouts on the grounds that mental health illnesses are not covered.
* Government benefits agencies will continue to deny benefits.
* State services such as the police, schools and the national health service, will treat people according to whether the disease is labelled as physical or mental, with broad ranging implications. An example of this has come to light today, spotted by a member of the ME Association, in which the Home Office has told Chief Police Officers that, when assessing recruits for the service, they should regard Chronic Fatigue Syndrome as akin to somatoform, factitious and dissociative disorders. The illness is listed in the circular as among “Conditions affecting mental and psychiatric health”. The side-tracking of topics occurs so regularly that it is evident that it is not an isolated instance, nor an intellectual failure to grasp what the biological research shows, but rather an intentional effort to derail the whole process, the effect being that further biological research is sabotaged and the status quo is maintained, which favours some in the psychiatric profession to the detriment of patient’s health.
Plainly, the idea that it doesn’t matter, simply does not hold water.
I think some patients and advocates are too inclined to imagine the best intentions of people promoting a psychological view of ME/CFS; some believe that these psychiatrists, though they may be wrong, truly believe what they are saying. I disagree. In fact, I think this does a great disservice to them. These are people who have worked hard over many years to gain their qualifications; they had to complete college and then attend medical school, like other doctors. Then they had to do an additional four years residency in general psychiatry, and many that work in the field of ME/CFS then went on to complete additional specialized fellowship training after that. So we mustn’t disrespect such people by labelling them as being a bit slow on the uptake.
The reality is that the evidence suggests these people know full well that ME/CFS is not psychological in nature or disease process; but the other reality we also must recognise, is that they have invested a heck of a lot of their lives in the idea that it is.
As biological evidence for ME/CFS has increased in recent years, we have begun to see the psychological position shift gradually to emphasise the mixture of the psychological with the biological. This is their new default position (or is becoming so), designed to maintain their money and status as long as they can, against the onslaught of biological evidence which threatens to marginalize their relevance.
There is a need, I think, to recognise that we face disingenuous arguments here, and this type of argument needs to be managed differently to how you would if it was a genuine belief. And just as importantly, we must stick to task and topic; not allowing them to hijack our narrative.
These psychiatrists are not going to abandon their high status, their high income, and throw away years of hard work and admit that all the work with their name on it was wrong. Bye bye relevance, bye bye career, bye bye grants and salaries. No, we mustn’t pretend that ME/CFS exists in a vacuum without money, status and ego. It would be unrealistic to expect anyone with such vested interests to change their tune. The truth is that we are looking at self-preservation here.
So we are dealing with a profession with a track record of getting things dangerously wrong, with the promotion of falsehoods as fact, that in hindsight are obviously wrong, but which at the time prove very effective at kidnapping public perception, hiding the truth and hamstringing attempts toward progress.
As with the sexual abuse scandals, I think society will look back at the treatment of ME/CFS patients with the same sort of disgust – vulnerable people, many supremely sick, being neglected and abused – a substantial number of them being children. Many having suffered for decades, some dying of old age in the end, never being treated as they should be, and far too many taking their own lives because of it all. But right now, at this moment, it is still in the shadows, torches are coming switched on and beginning to expose some of it, but you can tell there is a lot more that remains in darkness. In time the light will expose it all.
Until then, when we are corresponding with anyone who promotes a psychological view of ME/CFS — whether by letter, email, on the phone, on the radio, on television, or in person — we must ensure there is no room to pervert and modify what we say about ME/CFS. We have ever increasing evidence of the biological nature of the disease, and we know they don’t feel comfortable focusing on that; so we must maintain a strict focus on the topic and not allow it to be moved to more comfortable — and non-relevant — territory.
The final article in this series will explore many of the traps that are set for us, and strategies for avoiding them