Sonia Poulton 21 September at 06:30
Woke to find a long e-mail from Professor Simon Wessley…for those who don’t know, he is the big State cheese when it comes to ME…for many people his name represents years of their personal misery.
My recent article on ME, effectively, opposes his stance on the illness and I have been repeatedly warned that I can expect a communication from him…well it came…he says I ‘may be surprised to discover’ that he agrees with most of my article and then he goes on to detail how much of it he actually didn’t like at all.
He didn’t like me blaming psychiatry for standing in the way of research and treatment…he didn’t like that I didn’t give him credit for his ‘contribution to the debate’ and he most definitely did not like the idea that I say graded exercise is detrimental to the patient…oh no! That did not impress him at all.
The truth is this…I have done my research, and he knows it, and while as a journalist I should always be prepared to hear the other side of the story (I am) there comes a point when you know what you know and no amount of sharp words can change that…
Sonia Poulton’s Blog
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, 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.
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 the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment. 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.
11 thoughts on “‘ME is no more ‘in the mind’ than MS’ ~ Professor Simon Wessely responds to journalist Sonia Poulton’s article”
I really respect the way you handled Wessley’s response. Yes, you need to hear both sides, but that doesn’t mean both sides are worthy of equal ‘air time’. Some people like to talk debunked nonsense and we need to know and acknowledge they’re there, but that’s not the same as treating what they have to say as if it’s equal to the actual science that’s been done.
According to a recent(ish) study, GET can help a minority of people with ‘Chronic Fatigue Syndrome’, but hurts just as many. CFS is an umbrella term for lots of things. ME isn’t diagnosed separately these days which is very frustrating and bad for science, but it doesn’t make sense that graded exercise would work for swelling of the brain and spinal cord (features of ME). It’s like saying you can make meningitis better with graded exercise. It’s nonsense.
Since Dr Wessely recieved his award from the journal ‘nature’ yesterday, I have been following the endless stream of vitriol being fired towards him on multiple websites. I can’t find even one comment in his defence or support.
As a 15 year sufferer of M.E, who fought a long and ultimately successful battle with the disease, I find this very discouraging.
The quotes and positions attributed to him are usually out of context and often outright false. He seems to be villified purely because he is a psychologist.
He is not of the position that M.E. is depression, not inclined to throw children in to swimming pools in quasi witch tests, does not state that M.E. is a mental disease and even on his own website, writes that it is usually triggered by a virus. He goes on to state several measurable physical chemical markers found in most sufferers.
He is simply doing his best to apply his skills to help sufferers such as myself. He states that the disease has a physical cause, but with no vaccination or proven medicine available, the best way to treat it is with a combination of theraputic interventions.
As a successful recoverer from this nasty and difficult to deal with disease, I’m not at all offended by his views or practices. He doesn’t even claim to have the key to the riddle, just one approach to helping sufferers.
Writers, please research his true positions and get some balance to your perspectives. And fellow sufferers, please avoid anger towards a guy trying to help us. He’s not the enemy, and besides, anger will exacerbate M.E. exponentially.
It makes you wonder about the Victorian ladies that were incapacitated with fatigue symptoms and wrongly labelled by Freud as Hysterics.
Thank you Sonia. Your deep understanding of the subject of ME and your willingness to stand up and be counted is so refreshing. We need an uncorrupted voice in traditional media to root out the grubby little minds that have held sway in perpetuating the myths and quack science surrounding ME for far to long. Expose these charlatans for what they are – feeding off the misery of very ill people. As for Trolls, they just show themselves up for the weak fools that they are.
Many thanks to Sonia Poulton for her excellent blogs and the very clear way she has written about the scandalous way in which people with ME have been failed by governments and many in the medical profession. It’s no surprise that Simon Wessely is feeling uncomfortable. Sonia is well aware of the DWP/private medical insurance/psychiatry and “disability denial” links. Writing for the Daily Mail (though she is in fact an independent journalist) she can potentially reach a very wide public.
From what I have read about Freud methinks he could have done with sectioning along with Wessely!!
Thank you for continuing your fight on my behalf and those of other fellow MEites. I have been abandoned by the UK benefits system and have to endure a course of CBT which allegedly will cure me…er…after nearly a year I actually mentally and physically feel worse! I am a happy little soul with a stable, supportive family life and resent totally this condition is ‘in my head’ I am NOT depressed! My frustration/anger springs entirelly from the ignorance surrounding ME. Thank you for reading x
Those of us with MS need to watch this one – it might mean “MS is just as much a BPS disease as ME” – or “You’re about to be targeted as people who could work if they would stop imagining themselves to be really disabled.”
Not, of course, that he believes in real disablement.
Sonia, thank you! I’ve had M.E. for 7 years and if getting better was all down to attitude, I would’ve been well within an hour. I have an amazing support system of family and friends, without whom I can’t imagine how awful my life would be, but I know there are so many other M.E. patients out there without any support at all, even from the medical profession. The more people who speak up and tell the truth, the better.
Thank you vey much Sonya. You are so correct and we so seldom see this in the press. Thanks for your courage. I have just been reading and posting to Max Pemberton. Where do you start? A vexing experience! you are a great counterweight!
Thank you so much Sonia poulton for speaking up the truth for ME warrior,s .. High five you & your team. We know you care for ME.. Much love & hugs to you & your,s.. You have a heart of gold. You have just put a smile back on ME face 🙂 .. X