19 September 2012 9:03 PM
ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?
Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline, http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html I have been overwhelmed by the response from patients and their loved ones.
The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.
These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.
Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.
The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.
Here's why. For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.
They have been told that their illness doesn't really exist on the scale that they claim to experience it (due, in part, to it being labelled a 'chronic fatigue syndrome'. A highly controversial description because it creates an image of something substantially less than what ME actually is).
They have been told, repeatedly, to 'pull themselves together' and to 'G.E.T. A G.R.I.P.' (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).
In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.
What an injustice.
From the insight I have gained into the ME world, I cannot overstate the consequences of such a twilight-type existence. One in which your body responds a specific way but you are told that it isn't actually possible. That it's not really happening. That you are imagining it.
And that myth, of it 'being in the mind' has been perpetuated worldwide.
Millions of sufferers have been left in the dark to deal with their illness. Sometimes, if they are fortunate, they will be supported by their loved ones - who are also in need of support, too – but often they are left to deal with it alone.
For those reasons, certainly, many ME patients may suffer depression but it is not the other way around - and it is deplorable to suggest it is.
It may surprise you to learn that I have detractors or, as modern parlance would have it, haters. These people troll me on the internet as if their lives depended on it.
Around about now they will be making comments like 'get the violins out - here comes a sob story'. Well, ME is a sob story. And the way patients have been portrayed is grossly wrong and that injustice must be recognised as such.
In my experience, they are anything but cranks or victims but people who have simply waited too long to have the truth of their experience recognised.
And that, partly, arrived yesterday with the launch of the Lipkin Study, a significant multi-centre study into ME.
Chances are you may think otherwise for, as is common with any major ME announcements, there were a number of misleading reports prior to the press conference.
Subsequently, representatives from the ME society have announced their intention to pursue media outlets and seek rectification of some articles that have emerged.
In short, much of the media misunderstood the Lipkin study findings. Partly because some reports jumped-the-gun and took information from rumours and speculation rather than wait for the official announcement. But, it also occurred because the mis-information fed into already-established prejudices.
Many people, and for whatever reason, want to believe that ME is nothing more than feeling a little world-weary and tired.
It is nothing of the sort. It is a neurological condition that savages the body. People die from ME and millions across the world are being mistreated and misdiagnosed as a consequence of poor and hostile reporting.
Yesterday's announcement – that ME was not a result of the XMRV virus – seemed to herald, to some, the idea that ME is not the result of any virus but is, infact, a psychological condition.
Wrong. Wrong. Oh, and for good measure, wrong again.
Many highly-respected and learned people have compared the overall devastation of ME to illnesses including Multiple Sclerosis and even AIDS - and with good reason.
Dr. Charles Shepherd of the ME Association responded to the misleading idea that ME cannot be contracted by any virus by saying:
“There is, in fact, a great deal of robust anecdotal and research evidence to demonstrate that a number of specific infections - examples include enteroviruses, dengue fever, glandular fever, hepatitis, parvovirus, Q fever, Ross River virus - trigger ME/CFS.”
Many ME sufferers like Dr. Shepherd have little doubt that their illness was triggered by one of these viruses. The problem has been getting it recognised and appropriately treated.
This is poor response, certainly, and even more so when you factor in that the World Health Organisation acknowledged it as a neurological condition over 30 years ago, then it becomes more than a little alarming.
But there have been powerful forces at play that have served to maintain the status quo on ME thinking, and they have proven more than a challenge to be reckoned with.
For the past 60 years, the illness has been hijacked by the psychiatric community as one of 'theirs'. They have clutched ME to their collective bosom and have refused to release the iron-grasp on it.
This wholesale insistence of it being something that can be overcome with the right attitude has been highly detrimental to those who actually matter in this debate: the people who are suffering with it.
As a consequence, ME patients have been failed in terms of adequate treatment and significant funds are dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded Exercise – which has been shown to have a detrimental impact on the health of ME patients.
The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb.
What we are dealing with here is a systematic neglect of ME patients - and we should be under no illusion about that.
Equally, we must be sure to tackle it - medically and in the media - without hysteria or bile.
One of the reasons that ME patients are so vocal is because <b>the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment</b>. If that were you, would you be quiet about it? I certainly would not!
So yes, ME is a modern-day scandal. The way it has been portrayed is shocking. The Lipkin study, despite its detractors, will enable a deeper exploration of the illness and how it impacts and ravages bodies and lives.
And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.