‘Disease of the brain, not the mind, has no stigma’, Prof Colin Blakemore in ‘The Times’, 2 August 2011

August 2, 2011


From The Times: today's columnists, 2 August 2011

Reunite neurology and psychiatry and chronic fatigue extremists will stop their attacks

One of the many delights in being chief executive of the Medical Research Council (as I was) is that you make a lot of friends when you hand out public money for research. One of the downsides is the speed with which the bonhomie dissipates for some of those who do not get grants for their pet projects.

For scientists, this process of judgment by a jury of faceless colleagues and competitors was the least worst form of rejection. More difficult to handle were medical charities and patient groups pleading for more to be spent on their areas of disease, particularly those concerned with poorly understood and untreatable conditions.

To my amazement, by far the most vocal, dare I say energetic, lobbying came from some sufferers of chronic fatigue syndrome (CFS). They complained that the MRC was not spending much on research into this condition (quite right) and that what was being done was the wrong kind of research. The pleas and, from some, the anger, were directed at what these patients saw as the failure to dignify them with the recognition of the severity of their illness.

Let me say that I have witnessed the devastating impact of CFS (sometimes called myalgic encephalomyelitis or ME) first-hand. A young lodger in my home in Oxford in the 1980s was struck down and transformed from an out-all-night-clubbing, studying-all- day teenager into a limp body, wiped out for months. Those were the days when CFS was often pejoratively called yuppie flu. But this girl was no yuppie; and what she had was no flu.

The problem is that we still do not know what CFS is — what exactly causes the exhaustion, muscle pain and headaches. Indeed, unlike real flu, it almost certainly is not a single medical condition. It is probably due to a variety of causes masquerading under superficially similar symptoms. Infections, including flu, can lead to persistent fatigue that outlasts the other signs of the bug. But many cases of CFS do not seem to be precipitated by an infection.

According to the NHS, a quarter of a million people in the UK at any one time have CFS. This is three times the number with multiple sclerosis. The cost to the NHS is substantial. The impact on the economy is enormous; the suffering of all those with CFS is staggering.

It is understandable, then, that groups representing CFS sufferers should be concerned that public expenditure on their condition does not match its prevalence or cost. But what is harder to accept is the attempt to dictate what sort of research should be done. Some researchers have been the victims of extreme intimidation for doing “the wrong kind of research”.

Professor Simon Wessely, of King’s College London, has been a particular target — not so much for what he did as where he did it: in a department of psychiatry. Professor Wessely gave up research on CFS ten years ago because of the abuse and concentrates on the problems of war veterans. “I now go to Iraq and Afghanistan, where I feel a lot safer,” he has said.

In a petition delivered to 10 Downing Street in 2008, 8,000 people declared: “We the undersigned petition the Prime Minister to get the health service and medical profession to accept the World Health Organisation classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.”

I can understand the frustration of patients whose lives have been ruined by a condition for which they are offered no real explanation and little prospect of treatment. But what I cannot understand is that they would vilify and even threaten those researchers who have devoted their time and skills to trying to help.

There is a deeper message here. Nearly 30 years after the Mental Health Act the stigma attached to sickness of the mind has not been overcome. Entrenched prejudice and shame surround victims. In an NHS survey this year 16 per cent of respondents believed that one of the main causes of mental illness was lack of self-discipline and willpower.

Seventeen million people in the UK have poor mental health and this accounts for a quarter of the entire economic burden of disease in this country — twice the cost of cancer.

For 2,000 years physicians did not distinguish what we would nowadays call neurology from psychiatry. It was only in the first part of the 20th century that these two disciplines separated. But much of what has been learnt of the origin of brain disease in the past 50 years points to the similarity of underlying causes. Parkinson’s disease, a classical neurological condition, is due to a reduction in one particular chemical transmitter in the brain, dopamine. Schizophrenia, classical madness, is partly characterised by over-activity of nerve pathways that employ dopamine. Public sympathy is massive for victims of Parkinson’s; those with schizophrenia are, by comparison, ostracised, neglected and feared.

Perhaps, as disorders of the mind are increasingly seen to be illnesses of the brain, the stigma will retreat. The medical profession needs to give a lead: reunion of neurology and psychiatry would be a good start. But patient groups, so often the inspiration for new attitudes to disease and handicap, also have an obligation not to reinforce the stereotypes.

Colin Blakemore is Professor of Neuroscience at Oxford University

10 thoughts on “‘Disease of the brain, not the mind, has no stigma’, Prof Colin Blakemore in ‘The Times’, 2 August 2011”

  1. Very interesting article. And one I largely agree with.

    The idea of reclassifying ‘mental illnesses’ that are presently categorised as ‘psychiatric’ ones as the more modern ‘neurological’ is something worth pondering.

    Are we now in terms of neuroscience at the point where we can provide organic explanations for mental illness?

    Some mental illness or all?

    Btw I am talking beyond the debate about CFS/ME.

    1. I would agree that there is no such thing as mental illness as any disease that occurs in the brain is biological. What is not scientific is when they ignore the other signs and symptoms not occuring or derived from the brain, the classification that already exists, and the existing literature. We know about the heart problems, the abnormal muscles, the abnormal cytokines, the immune profile that looks like a retroviral infection, etc. Why do they continue to deny this?

      Governments and the insurance industry also tend to use that category to reduce costs, which is why they haven’t put funding into biomedical research for over 10 years.

      Sorry, but it looks to me like this person, who will have been responsible for blocking biomedical research funding during those ten years and driving the real scientists away, is attempting to find another way to cut the budget.

  2. Blakemore should have checked his facts before submitting this letter.

    Again, no proof is given that any attacks have been made and legitimate complaints about the abuse ME patients are suffering under this health regime are justified.

    No biomedical research into ME has been funded for more than 10 years in this country. Every penny has gone on psychosocial research. Namely study after repeated study of Cognitive Behavioural Therapy (CBT) and Graded exercise Therapy (GET). The latest being the PACE trial which again proven those treatments don’t work. CBT was used to correct aberrant illness beliefs, in defiance of the published evidence they say patients are not sick. GET was to stop exercise avoidance, in defiance of the published evidence they say patients are not sick. Yet the scientific evidence says they are!

    CFS is not ME or ME/cfs. CFS is a catch all for one symptom that not every patient with ME has and which can also be found in those with cancer, HIV/AIDS, MS, etc. The cardinal symptom of ME is PEM, a global worsening of symptoms after exertion.

    Simon Wessely has had is name on a 31 CFS papers since 2001. http://www.ncbi.nlm.nih.gov/pubmed?term=Wessely%20cfs. All I hear is when will Wessely leave?

    I wonder how the MS and Parkinson’s patients will react to the suggestion of making a political category for their diseases with this proposal to combine neurology and psychiatry. It is to save money? And what of all the other signs and symptoms that are not in the brain? Will they continue to be ignored because we don’t do science under this health regime?

    Is it not time that this small group of powerful doctors/researchers stopped their campaign of denial and were moved away from the patients they are harming with their pseudoscience?

    When will they stop their campaign of pretending that the 4000 plus published papers on the underlying biology of ME exist. When will they stop denying the outbreaks? When will they stop pretending people are not dying as a direct result of the disease destroying a persons body? When will they stop denying that it has always looked like an infective agent? When will they stop ignoring the neurological classification that the UK has signed up to? When do patients get to have their wish that these doctors were not in charge of this disease and give the funding and control to the scientists? The real scientists who rely on objective data and not subjective labels.

    These people are getting in the way of scientific progress, so when will the Government stop turning to their pseudoscience to prevent the ever increasing cost of dealing with this epidemic?

  3. I wonder why I even bother commenting on any of this anymore, it would be less stressful to stay away, but this illness has stolen almost 28 years of my life and I cannot sit back and let half-truths be circulated in the media by journalists and medics, over and over and over again.

    Prof Blakemore appears to be sympathetic to ME sufferers, at first, but he is really just – predictably – closing ranks, defending Prof Wessely, without scrutinising what he has actually done:

    ‘I can understand the frustration of patients whose lives have been ruined by a condition for which they are offered no real explanation and little prospect of treatment. But what I cannot understand is that they would vilify and even threaten those researchers who have devoted their time and skills to trying to help.’

    Trying to help? Is this the same Prof Wessely who was quoted as saying we ‘catastrophise the illness’ in the Independent in 2009 by health editor Jeremy Laurance? Jeremy tells us that diagnosis of some illnesses can depend on where you live (NB. ‘encephalitis’ is Jeremy’s error.):

    http://tinyurl.com/3ct447a

    ‘French doctors do not recognise the condition known as ME (myalgic encephalitis) or Chronic Fatigue Syndrome (CFS), which is widely known and frequently diagnosed in Britain. Often the condition is triggered by a viral illness, such as glandular fever. Most people get over it but some become trapped in monitoring their symptoms, restricting their activities beyond what is necessary and getting demoralised.

    Professor Wessely, a specialist in the problem, said: “In Britain, people with chronic fatigue think that if they do too much the virus that caused it is still there and will come back and make them worse. That is catastrophising the illness. They don’t think like that in France and they don’t have the same outcomes. It is how you respond to symptoms that determines the outcome.”

    Yes, we are catastrophising the illness. Of course we are. Never mind that post-exertional neuroimmune exhaustion (described in the recent International Consensus Criteria http://www.flimecfsforum.com/wiki/index.php?title=Post-Exertional_Neuroimmune_Exhaustion_%28PENE%29 ) is the hallmark of ME, due to the inflammatory processes implicated in the disease.

    Biomedical research – and only biomedical research – will get to the bottom of why we are ill. This is what Prof Wessely – and his supporters – have failed so spectacularly – and harmfully – to understand or accept.

  4. Another superficially reasonable article.

    1. Surely Colin Blakemore knows that Aitcheson and Ramsey described M.E. in 1955; they did not call it cfs (or synonym). It is NOT “sometimes called myalgic encephalomyelitis or ME” – it IS ME.

    2. “..research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology.” Carruthers, et al; International Consensus Criteria.

    Will some-one tell CB?

  5. Prof Blakemore whilst seemingly recognising ME as a serious illness & empathising with PWME ends up supporting the status quo regarding current research & has offered nothing new to the debate.

    I am currently in the midst of an application for early payment of my occupational pension (local governent – LGPS) on the grounds of ill-health ie ME. Believe me, pensions in the LGPS are nothing like as generous as the politicians & the mass media portray them to be but it would be a help.

    The qualifying criteria for a full pension is:

    ‘Those permanently incapable of their current local government employment, where there is no reasonable prospect of them obtaining gainful employment before normal retirement age’.
    The LGPS regulations define:
    ‘permanently incapable’ as – the member will, more likely than not, be incapable until, at the earliest, their 65th birthday; & ‘gainful employment’ is defined as paid employment for not less than 30 hours in each week for a period of not less than 12 months’.

    Even though I have had ME for 6 years, unable to work for the past 3 years & now in the Support Group for ESA I am expecting to have a long & hard battle to be awarded my pension as ME is not even listed as an illness in the LGPS guidance for approved doctors. Unsurprisingly, the closest illness listed is CFS.

    I an including the text from the Guidance Manual to illustrate just how difficult it is to have CFS accepted as a qualifying illness let alone ME. Type the title below in the search engine & it will bring up the full pdf document.

    A Guidance Manual for Approved Doctors • West Midlands Pension Fund

    Pages 13 – 14

    Specific Guidance

    Chronic Fatigue Syndrome
    This is the term currently given to fatigue lasting for more than six months sufficient to interfere with the patient’s normal physical and mental functioning, and for which there is no conventional medical cause.
    In practice, the diagnosis is frequently given to a heterogeneous group of patients with conditions that include chronic depression, chronic anxiety, psychological distress, poor motivation to return to work, as well as to conscientious perfectionists who find it difficult to set limits for work, and possibly to others with an, as yet, unidentified disorder of the central fatigue mechanism. Fatigue is a symptom commonly encountered in primary care settings and is recognised to last for weeks or months after infectious mononucleosis or polio but not after other infections.26 Examination should include exploring psychosocial factors such as life events, home and workplace stresses, as well as symptoms of anxiety and depression. Investigations should exclude anaemia, diabetes, hypothyroidism, occult carcinoma a collagen disease and infectious mononucleosis. Other conditions that might need to be excluded are sleep apnoea, the acquired immune deficiency syndrome and coeliac disease.

    Most longitudinal studies of prognosis have been in secondary care and show that the majority of patients make a progressive functional recovery, although a significant minority remain symptomatic but at no increased risk of mortality. A community based study of 65 patients with a three-year follow-up found that the majority (57%) of subjects experienced a partial or total remission, with 23% receiving alternative diagnoses of which a sleep disorder was the most common. At the three-year follow-up point only five patients still fulfilled the
    criteria for CFS.27

    Treatment with graded activities and cognitive behavioural therapy to address unhelpful thoughts, such as fixed physical illness beliefs or unhelpful behaviours, such as avoiding activity or sleeping during the day, have been shown to be effective and in those few studies that have included return to work as an outcome, to improve the likelihood of a successful return to work.28 Prolonged rest, antidepressants in the absence of depression corticosteroids or immunotherapy are unlikely to be beneficial.13,29 Factors associated with a poor prognosis are a belief by the patient that an undiagnosed physical illness is responsible for their symptoms, a concurrent or previous psychiatric diagnosis, avoidance of physical activity, a perceived lack of control over symptoms (ie, an external locus of control), concurrent somatoform symptoms, dissatisfaction with work, concurrent litigation against employer or severe symptoms lasting for more than four years.30-32

    The identification and remedying of any workplace factors which may be contributing to the fatigue, part-time working and restricted duties may be helpful in the occupational rehabilitation of these patients. A decision about early retirement should not be made until appropriate investigations and treatment have been undertaken. Because most patients are relatively young at diagnosis and, therefore, many years from their normal age of retirement,
    permanency of incapacity for early retirement is unlikely to be met in the majority of cases.

    26. Wessely S, Chalder T, Hirsch S, Pawlikowska T, Wallace P, Wright DJM. Post infectious fatigue: prospective cohort study in primary care. The Lancet 1995; 345: 1333-1338.

    27. Nisenbaum R, Jones JF, Unger ER et al. A population-based study of the clinical course of chronic fatigue syndrome. Health and Quality of Life Outcomes 2003; 1: 49-57.

    30. Aylward M. Government’s expert group has reached consensus on prognosis of chronic fatigue syndrome. BMJ 1996; 313: 885.

    31. Pheley AM, Melby D, Schenck C, Mandel J, Peterson PK. Can we predict recovery in chronic fatigue syndrome? Minnesota Medicine 1999; 82: 52-56.

    32. Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S. Chronic fatigue syndrome: a step towards agreement. The Lancet 2002; 359: 97-98.

    This is just one example of why PWME & their carers are trying to get some balance in the research & why the continued campaign by the MEA & the All party group chaired by the Countess of Mar is so important.

  6. When ignorance in science (as it relates to ME/CFS patients) causes experiments on human subjects to occur such as the case with our son and the torture he was subjected to -www.bringingryanhome.com-the psychiatric establishments beliefs must be contained and regulated.Those professionals with no true ME/CFS knowledge and expertise who often treat patients worse than animals-those professionals need to be placed behind bars. We must advocating for proper biological research. We must stop the run away psychological money train that has lined the pockets of the mental health professionals. Clinicians who in the past have been paid for abusing ME/CFS patients. WE are tired of the abuse and for good reason. Lisa Baldwin, BSW USA

  7. It is NOT “sometimes called myalgic encephalomyelitis or ME” – it IS ME.

    Well said, Soloman.

    This is a seemingly never-ending tug of war between Wesselyites and PWME. We cannot win physically – obviously! – and it looks like we cannot win politically. The spin just keeps being spun and I am really so heartily tired of it all.

    Almost exactly 27 yrs ago I was a very sick 20-yr-old in hospital – in a neurological ward – having a plasma exchange, an experimental treatment for ME. I shared a ward with other very sick young women – MS and myasthenia gravis, I think. I wonder how they are now, how they have fared. I just hope that whatever else they are going through they are not being used as pawns by confused psychiatrists to be shifted around as it pleases them.

  8. Don’t be too disheartened nmj, I always value and enjoy reading your comments and I do think things are slowly changing.

    I’ve noticed that commenters are becoming much more educated and much more able to use citations as the facts about ME are beginning to disseminate to increasing numbers of people on the web.

    I think the only thing we lack now is one of the major press publications actually taking this story and casting a real magnifying glass over it.

    In the mean time, I honestly believe every well composed and well thought out comment makes a difference.

    Fighting the prejudice and misinformation can easily lead one to feel one’s action are futile, but as long as we keep fighting, we’ll never be able to regret not having tried to the last.

  9. I was disturbed when I read this article in The Times, on the day it was published. Two things particularly struck me. One: the only name that Colin Blakemore mentioned was Simon Wesseley. Two: an article supposedly dealing with the issue of duality of mental and physical illness concentrated specifically on ME/CFS or chronic fatigue. Clearly there was an agenda.

    This was followed some days later by an article by The Times columnist David Aaronovitch, using his stated ignorance of the subject as a justification for an attack on our patient group. It was clear that the agenda was being pushed.

    Now today there was an interview in The Times with who else but Simon Weseley. I think it would be fair to regard this a hagiography. Apparently the mild mannered Simon is universally adored by the medical profession and Simon has only had the interests of the cuddly ME patients at heart. Since when did he start calling it ME? Something is afoot. Why, after 10 years is Simon campaigning publicly on CFS?

    Now I’ve had ME for over 15 years now and I no longer follow all the ins and outs of the issues and I don’t find it worthwhile to spend the same hours reading up on the ME/CFS news as I used to. However something seems to me happening. I took a look on Co-Cure in an effort to catch up and see what news might me triggering this campaign.

    Very interesting, it was. Very interesting. There I found a recently posted pre-print of an upcoming paper “Myalgic Encephalomyelitis: International Consensus Criteria” to be published in the Journal of Internal Medicine. This is not a routine publication – look at the list of authors.

    This is a major paper. It is actually getting down to the real issues of our illness and among other things advocating that the illness diagnosed by there criteria should be known as ME and that those so diagnosed should be “excluded” from diagnosis with CFS by the CDC criteria and NICE.

    Back to our friend Simon. Effectively this paper is rubbishing all that he and his colleagues have advocated. I now regard the campaign in The Times as a rearguard action. Simon is getting his revenge in first, ahead of formal publication, I would suggest.

    I think this new paper is excellent news. Eventually the ideas it expresses must be taken up. Sadly the newspaper campaign shows that there is still a serious battle to be fought. The medical establishment won’t give in easily or gracefully and it will still be many years before my GP takes my condition seriously.

    The good news is that the psychiatrists are rattled.

    John Blundell

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