Simon Wessley and Maddox prize "controversy"

By Keir Liddle

Simon Wessley, alongside Fang Shi-Min was awarded the  inaugural John Maddox Prize from Sense About Science. A prize award to individuals for standing up for science rewards an individual who has promoted sound science and evidence on a matter of public interest. Its emphasis is on those who have faced difficulty or hostility in doing so.

Many bloggers reported on the awarding of this prize and it quickly became apparent why Wessley deserved it. Comments defaming and dismissing Wessley have appeared across the web. One such example is in the comment thread of this blog where Wessley himself has taken time to respond to allegations and join the discussion. You can see similar examples of attacks on his character and the behaviour of a small minority of CFS sufferers here, here and here.

Suffering as I do from my own mental health condition I despair at the attitude that seems prevalent in promoting the extreme ends of the CFS community to engage in such tactics and to feel the need to loudly denounce people who attempt to research the condition and develop treatments to assist them. It seems utterly born out of the idea that mental health issues are not real. That somehow saying someones problem is psychological means it is “all in their head” or that they are malingering.

This is roundly and resolutely bollocks.

I can understand how such attitudes develop. There is still a huge amount of stigma about mental illness within society. People fear telling their loved ones, colleagues and friends that they have a mental health problem. They fear they may lose their employment or become ostracised. But they don’t, by and large, devote large swathes of time to lobbying and bullying those who are trying to help them based upon the misguided, stigma led, notion that it is a bad thing to have a psychological illness or problem.

However I feel that for some it’s time to grow up. I feel it is time for people to accept that having a psychological problem does not mean “it’s all in your head”. We are are not living in some odd Cartesian world where a mind/body false dichotomy holds. We are made of meat: Mental illnesses are ultimately physical complaints. They can be disorders of thoughts located within our heads but not in our imaginations rather in our brains. They exist within a complex interplay of neurotransmitters, synapses and our physical environment.

Something being “all in your head” does not make it any less real, any less damaging or any less terrible.

I have a mental health problem. I feel no need to declare this is because of some physical defect or due to contracting some virus. I am not ashamed because my illness is very real: Almost viscerally so on occasion.

If you wish to hold to the ideal that your CFS is caused by some virus or similar than fair enough. But don’t trawl the internet to harass, bully, dismiss and defame those scientists, medical researchers and clinicians who disagree with you. Pour your energies into funding your own research. There will be scientists more than happy to take the money off your hands and undertake the research. They might not be world renowned, the more extreme of you may have poisoned the well in that regard, and they might not be able to tell you what you want to hear (reality tends not to conform to our personal desires and biases after all) but they would do the research for you.

But drop the stigmatising idea that there is some problem with an illness being mainly psychological in origin. All that means is that a different organ in your body is malfunctioning to the one you would like to think is.

And is that really so bad?

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9 Responses to Simon Wessley and Maddox prize "controversy"

  1. clouty says:

    I am one of the commentators on the noodlemaz blog [1] praising the John Maddox award for Prof. Wessely and I would urge your readers to go over and have a look at the many thoughtful, well-referenced explanations of why Prof. Wessely is so wrong about ME, and why his input has been damaging to the care of many thousands of ill people.

    [1] https://noodlemaz.wordpress.com/2012/11/07/john-maddox-prize-2012/

  2. Skepticat_UK says:

    Thanks for the heads up, clouty. I followed the link with the best of intentions and had a quick look but I’m not prepared to wade through a tide of unadulterated nastiness to try and find any of what you might consider “thoughtful, well-referenced explanations”. Your own ridiculous suggestion that Simon Wessley awarded himself the prize doesn’t exactly fill me with confidence that you’re any more capable of thoughtful and well-referenced explanations than any of his other critics.

  3. David says:

    Fair points, but again based on a number of false assumptions.

    Firstly I have yet to meet anyone with M.E who has an issue with people with mental health problems. In fact they more often than not empathise with their shoddy treatment by both society and the medical establishment.

    Secondly, the argument is not about whether or not this condition has a psychiatric or ‘mental’ component – in many ways because the effects seam to be on the nervous system as well as the immune system – psychological symptoms are strong – as they are in Alzheimer’s, or other neuro degenerative diseases.
    It is the type of condition it is that is being argued. Schizophrenia is a psychiatric condition – yet lots of research is poured into looking at the physical problems in the brain, and developing drugs for a ‘cure’. None of this is recommended or advocated for M.E. because it is seen as a process of deconditioning and habit.

    Finally, people are not harassing anyone on the internet, they are taking part in a serious scientific debate. There are many scientists who think that he is wrong about this, but they never get the spotlight in this country – or any medals or awards.

    This is a scientific issue that has NOT been resolved yet, yet someone with more power than most is acting as if it has, at the same time as making out that his own patient group is mad and deluded for thinking otherwise.

    This has nothing whatsoever to do with one patient group stigmatising another. Thats a cheap shot – especially towards a group as empathetic to suffering and neglect as it is possibly to be.

    What do you think this internet furore is about? It may get personal, but it is about science and the nature of disease – nothing more. Its odd how that most thinking people can find more sympathy with the Palestinian cause for instance – despite people actually been blown to bits – than they can with this cause, despite no harm ever coming to individuals.

  4. Keir, You have obviously not read any of the comments on the thread you refer to, including my own! Instead, you are allowing your own experience of mental health to colour your judgment. No one is stigmatising mental illness, and it is ludicrous to suggest so. We are simply resisting a label of mental illness for an illness that is physical. This is the only way we will get effective treatments. (Graded exercise, promoted by Simon, is harmful to PWME. And CBT does not address underlying neuroimmune illness. I’ve been ill since 1982, post-viral, diagnosed with ME by consultant neurologist, before Simon was even working in ‘CFS’, I kind of know what I’m talking about.)

    There are many doctors who do not hold Simon’s view, including WHO, but they do not get exposure in mainstream media so unless you actually have ME or are interested in the subject, you do not hear of them.

    Are these doctors stigmatising mental illness too? No, they are simply highlighting what a serious physical illness ME is. Why is this a problem? Why don’t you take some time to learn, and actually be curious about this illness! Here are some clips of eminent doctors involved in ME research worldwide:

    1. Professor Behan, consultant neurologist, who diagnosed me in early 80s in Glasgow. Extract from BBC documentary in January 2012. 35 mins in:

    ‘There is an ‘essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense’.

    Interestingly, Behan examined muscle tissue of some of the original Royal Free patients thirty years later (dismissed by psychiatrists as ‘hysterical’). He and his late wife, Professor of Pathology Dr Mina Behan, identified abnormal mitochondria in those patients.

    2. Professor Montoya of Stanford University: ‘In my view CFS is another form of death’ 5 mins in.

    http://www.meassociation.org.uk/?p=5632

    3. From Dr Peterson on ME, in Stockholm last month. He talks about how CFS was the wrong name in 80s (in USA), trivialising the illness. He talks about how post-exertional malaise, neurological and immunological abnormalities, and not ‘fatigue’, are now at the forefront of research .

    4. Ulster TV interview with Dr William Weir and Dr Derek Enlander: 4:59 mins in Dr Weir refers to ‘irrefutable evidence of immunological dysfunction’ in ME and at 5:48 Dr Enlander speaks of the urgent need for a multi-disciplinarian approach: ‘This is not a psychiatric disease.’ ‘Psychiatric ailment in this disease is *secondary* to primary physical disease. This *is* a physical disease’.

    5. Professor Malcolm Hooper: In 2009, in this documentary trailer, 1.10 mins in, speaks of ‘the 4000 papers on biomedical aspects of this illness that have not been read or addressed, or evaluated by NICE or by government or government advisors’.

    http://vimeo.com/10536172

    Now, you can actually watch these short clips and maybe learn something you didn’t already know – or you can keep your mind closed and stigmatise PWME who are standing up for truth.

  5. To paraphrase a popular catchphrase:

    “You brought a YouTube video to a scientific debate?” 😉

    Some links to peer reviewed literature would be more convincing.

    Here are some:

    Causes unknown:
    http://jnls.cup.org/abstract.do;jsessionid=7D879D6E839C0A756F7028C580B9D0CB?componentId=1890396&jid=%3CjournalId%3E

    CBT and GET show promise:
    http://occmed.oxfordjournals.org/content/55/1/20.full.pdf

  6. creamcrackereduk says:

    It seems rather ironic that you say that people shouldn’t resort to vitriol over Wessely
    yet the dismissive language that you’ve used in regards to the nature of illness these
    people have is somewhat inflammatory.

    Has it not occurred to you that it is precisely what you’ve said, and the style in which
    you’ve said it, that causes anger?

    Maybe you posted this on purpose?

    The definition of Chronic Fatigue Syndrome is so far removed from its ‘origins’ of Benign Myalgic Encephalomyelitis as to be a different entity. Have you researched the history of this or have you in your young life not bothered to go back terribly far?

    And yes, I did deliberately include that last sentence because I believe it is relevant.

    May I wish you luck in your quest in finding treatment for your mental health issues. Shortly after being diagnosed with ME, I was referred to to a psychiatrist because my then GP believed there was a mental health problem. My hour’s consultation with the psychiatrist ended after twenty minutes – he didn’t believe that I had a mental health issue and didn’t understand why I was referred.

    P.S. “Be nice” – does that include you or merely people replying to you?

  7. I linked to these short clips of different doctors discussing ME in the hope you might be interested in exploring a narrative rather than the very narrow one you have, no doubt, been repeatedly exposed to. I hoped as a – young – scientist you might be curious about learning.

    This whole sorry debacle is the result of the conflation of neuroimmune illness with ‘unexplained chronic fatigue’. This is what ME patients have been saying for years. I doubt you are aware of the International Consensus Criteria (ICC) for ME, published last year in Journal of Internal Medicine:

    Problem
    The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.

    Solution
    Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

    http://www.hetalternatief.org/ICC%20primer%202012.pdf

    And I posted links to research on Twitter, so will not repeat.

    This is also interesting: a neuro-immune model of Myalgic Encephalomyelitis/Chronic fatigue syndrome.
    Morris G, Maes M.
    Metab Brain Dis. 2012 Jun 21.
    http://www.ncbi.nlm.nih.gov/pubmed/22718491

    As creamcrackereduk points out, your blog post is rather cavalier, but I rose above that earlier as there is little point being rude back, it gets no one anywhere. And I honestly hoped you might be curious and willing to learn … Are you even aware of how biomedical funding has been repeatedly blocked by MRC, until this year?

    http://www.meresearch.org.uk/information/publications/casetoanswer.html

    You also seem dismissive of my experience of 30 years of this illness, diagnosed by consultant neurologist (the incidence of ME post-Coxsackie B4 in west of Scotland in early-mid 80s is well documented), but bizarrely you expect readers to respect *your* experience of illness, which you then use to bolster your rather ill-informed views about ME.

    I am sorry you have personally experienced mental health issues, but that is just not relevant here. Moreover, I would never presume to make pronouncements on your illness, about which I know nothing. But you seem happy to suggest PWME are ‘holding the ideal that CFS is caused by some virus’. I cannot begin to tell you how insulting that is to me.

    Finally: Exercise makes ME symptoms worse. Fact. I live with the illness. I know. Linking to Wesselyian papers about GET and CBT is pointless. If people respond to CBT and GET that is great for them, but it does not help the majority of people with ME (this is the criteria problem, who does Simon W actually treat/research?).

    The reality is people with ME are *not* recovering, no matter what the Wessely school asserts. In my experience, only time and resting, resting, resting can help, spontaneous improvements can occur, but exercise worsens symptoms every time. Post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE) is the hallmark feature of ME. It cannot be exercised away, unfortunately.

  8. Dogs says:

    I love how the same names pop up over, and. over, and over again.

    “Rabid denial of psychological. origin” should be listed as a cardinal symptom of ME-syndrome.

    Did you note the “We have no problem with PWMI” alongside claims of “We’re not mental/depressed we’re REALLY ill”?

    There are commenters on noodlemaz’s site that have been lying, hectoring, and enforcing stigma for YEARS. I particularly loved the implication that maz was lying about her PhD. There’s no depth to which they will not sink.

  9. Elyn says:

    ““Rabid denial of psychological. origin” should be listed as a cardinal symptom of ME-syndrome.”

    Sadly, it’s clear you have missed the point. Someone with a broken back would also argue against a psychiatric origin, does that make them rabid denialists, anti-psychiatry or dismissive of those suffering with depression? No, it simply means they seek appropriate treatment, so they can… you know, recover and get their life back. 25% of sufferers are so ill that they are bedbound, often surviving with tubes sticking out of every orifice. Show some heart and understanding. It’s not an easy life and certainly not one that should be made any harder by prejudice and willful ignorance.

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