Supporting People with Medically Unexplained Syndromes

RonaMM_squareRona Moss-Morris is Professor of Psychology as Applied to Medicine at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UK. She is a keynote speaker at this year's SAPC conference in Oxford.

 

I am delighted to be presenting a keynote talk to the upcoming SAPC conference on a topic very dear to my heart. My interests in this area began as long ago as 1988 when I moved from South Africa to take up a post in a small East Coast town in New Zealand. One of the first patients referred to me, let’s call him Mr X, had a mysterious illness called Tapanui Flue. A previous high level athlete and school teacher, he was experiencing overwhelming and disabling fatigue. So there I was, new kid on the block in a strange country, faced with a condition I had never heard off and a very distressed patient. Still to this day I regret the fact that I wasn’t much help to Mr X. I subsequently learned that he more than likely had CFS/ME and so began my research career. 25 years later I am confident that if I knew then what I know now – I could have made a difference to this patient. However, many of these patients are still failed by our current system, and I hope to elucidate in my talk on Thursday as to why this might be.

CFS/ME is one of many conditions falling under the broader umbrella term 'Medically Unexplained Syndromes' or MUS. These conditions are characterised by persistent symptoms, suffering, and disability which cannot be explained by disease specific, measurable abnormalities.   If you are a practising GP in the UK, recent estimates suggests that these patients are around 18% of your caseload.   They cost the national health system in Britain £3.1 billion per year. They also have immense personal costs including sickness absence amounting to around £14 billion annually. It shouldn’t cost this much either to the patients or the health system – so where are we going wrong?

Perhaps the starting point is in the term. Patients come to us because they want a positive description of symptoms i.e. an explanation of what the illness is rather than what is isn’t. MUS are defined by what they are not: i.e. the term implies no organic cause. It also provides no direction for future treatment. We need a better label to move forward in this area.   We also need positive descriptions of why people have these symptoms. In my talk I will provide examples of these and how they might be incorporated into everyday primary care.

I will also argue that the practice of medicine is still embedded in the biomedical rather than the biopsychosocial model proposed by George Engel almost 30 years ago. Patients without a clear biomedical explanation of their symptoms are often left feeling misunderstood and legitimised by the heath service. I will present data from some our work showing how MUS are best understood in terms of biopsychosocial models.   I will also show why conceptualising MUS as somatised depression or anxiety is often inaccurate and unhelpful.

Finally, I will provide a brief overview of the current evidence of best treatment for this group of patients. I will present a matched care model of treatment we have developed for the NHS England Improving Access to Psychological Therapies (IAPT) programme. As part of this programme we have also recently published specified clinical competence in this area. The next step is specified training programmes. Watch this space.

SAPCASM2015The 44th #sapcasm runs from Wednesday 8th to Friday 10th July 2015

 

5 thoughts on “Supporting People with Medically Unexplained Syndromes

  1. JamBob

    If you are going to be using CFS/ME as an example to present to your audience (of MUS) as you have done in this blog, I trust that you are also going to present up to date biomedical research which shows that CFS/ME is most likely an autoimmune disease that responds well to B-cell depletion using the monoclonal anti-CD20 antibody rituximab.

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898

    http://www.biomedcentral.com/1471-2377/9/28

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026358

    By presenting CFS/ME as an MUS without organic pathology, you are doing a disservice to patients by not keeping up to date with all of the current research on the known organic pathology in CFS/ME.

    Is the duty of a doctor not to keep up to date with their subject? Is it right and fair to patients who are suffering to present a limited and biased view of the evidence to other doctors?

    Thanks for your consideration.

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  2. Anne

    Is Ms Moss-Morris aware of the Rituximab trials held in Norway?
    These trials suggest that ME/CFS is a not yet fully explained organic disease, as once were MS, peptic ulcers and numerous others.

    Did Ms Moss-Morris read the IOM report that clearly states that ME/CFS is a severe organic disease, whose major objectivable symptom is post exertional malaise?

    I would be really pleased if Ms Moss-Morris addressed these issues during her talk.

    If ME/CFS appears to be the organic disease that more and more think it is, the “treatment” recommended by Ms Moss-Morris (convince people to think they are not sick, that they should ignore their symptoms, that they have a responsibility in their illness) will appear in its crude brutality.

    Reply
  3. UK/US/NO/AU

    In June 2014, Professor Mark Baker, the Director of the NICE Centre for Clinical Practice, said that NICE guidelines for ME/CFS are limited in their scope; they do not meet patients’ needs; and they do not meet NICE’s needs. Baker said too that the guidelines fail to address the real issues in ME/CFS. He said the guidelines (including CBT/GET) are based on little evidence, and they have had a disappointing impact.
    http://web.archive.org/web/20150624205258/http://www.forward-me.org.uk/25th%20June%202014.htm

    US gov. FDA (2012): “We consider your condition [ME/CFS] to be in the category of serious or life threatening diseases… This is a serious condition and I just want to make that clear. We consider it in the same category because there are no approved treatments for this condition and we understand how seriously and severely peoples’ lives are impacted by this disease…” http://web.archive.org/web/20150707061143/http://www.fda.gov/downloads/Drugs/NewsEvents/UCM320310.pdf

    Professor Ola Didrik Saugstad, an internationally recognized and internationally honored Norwegian physician who also specializes in medical ethics (2011):

    (Summary translation from Norwegian:) Saugstad said that the only therapies offered to ME patients are those (CBT/GET) which have been developed by individuals who do not believe that ME is a physical illness. Saugstad said he was very much against cognitive behavioral therapy and graded exercise therapy and that there are studies that show that these therapies make ME patients worse.

    Saugstad added that those who advocate CBT/GET have often never even met those who are most ill, and that he (Saugstad) believes it is a violation of medical ethics to prescribe treatments/therapies to patients whom one has never examined.

    Saugstad said too that it is a serious abuse and violation to force psychiatric treatment (CBT) for ME and that ME patients are treated as badly as individuals in the 1950s and ’60’s whom the medical community lobotomized.

    In response to such criticisms, Assistant Health Director Bjørn Guldvog apologized and said that ME patients do not have adequate healthcare.
    http://web.archive.org/web/20150624211709/http://www.tv2.no/a/3609260

    Hallmann et al. (2014): “Relationships of power, politics, policies, practices and social relations were revealed to play an important role in the experience of ME/CFS. Trauma appeared to occur across every facet of the participant’s lives, particularly in dealings with the medical profession, insurance companies, educators, employment, family, friends and the media.”

    “Insurance companies were identified as particularly intrusive and onerous and often questioned or denied the validity of the diagnosis.”

    “When interacting with social institutions, persons with ME/CFS are subject to attitudes, beliefs, policies and behaviours (including bullying)… These experiences have an adverse impact upon the person – both physically and emotionally.”

    Dealings with social institutions “of this type and duration has been shown to impact individuals and cause long term trauma.”

    In dealing with social institutions, individuals with ME/CFS commonly report “experiences of dishonesty, misstatement, threats, trauma, bullying and harassment… Such experiences were emotionally stressful and upsetting, whilst also causing exacerbation of the symptoms of the condition. The more stressful the event, the greater the potential severity of the symptom exacerbation.”

    Hallmann et al. identify further difficulties experienced by individuals with ME/CFS as: “assessments by persons with little knowledge of ME/CFS or preconceived and adverse beliefs about the condition, [and] inappropriate methods of assessing disability/impairment…”

    Hallmann et al. state too that social institutions are ignorant of or ignore disabilities/impairments common to individuals with ME/CFS; for example, a significantly lowered threshold to light and/or sound and a limited threshold to standing and/or sitting. Exposing individuals with ME/CFS to “persons with communicable airborne ailments” was also considered unacceptable.

    Hallmann et al. further state that such environments negatively affect individuals with ME/CFS and exacerbate cognitive issues, which in turn impacts individuals’ ability to interact effectively with social institutions. And because of widespread ignorance and prejudice, individuals with ME/CFS generally don’t have access to individuals to advocate for them and help them navigate social institutions. Further findings suggest parallels between individuals with ME/CFS and other disadvantaged/discredited social groups.

    http://web.archive.org/web/20140912083541/http://www.iacfsme.org/DesktopModules/DigitalDownload/2014Syllabus25.pdf

    Reply
  4. jimells

    If exercise were the cure I would’ve never gotten sick.

    Mr X is fortunate that Ms Moss-Morris did not subject him to the harmful Graded Exercise “Therapy”. Numerous patient surveys by ME advocacy organizations are very clear that CBT and especially GET frequently harm patients.

    It is hard for patients to understand how psychologists and psychiatrists can continue to incite physicians to abuse patients with their dismissive attitudes, harmful treatments, and refusal to rule out other diseases with similar symptoms. In most professions this would be unacceptable behavior. In the mental health field, this is business as usual.

    I expect that Ms Moss-Morris is aware that Science requires evidence. So far, there is no evidence to support the theory of Mind Magic, that one’s wrong thoughts creates disease. On the other hand, there are hundreds of published research papers demonstrating biochemical anomalies in the ME patient population. I suggest Ms Moss-Morris start reading them.

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  5. Kate

    Since when did the term ‘unexplained’ mean not present? Taking the unethical and frankly incorrect leap of thought from ‘medically unexplained’ to ‘no organic’ should be the domain of the unintelligent or brainwashed only.

    To then disseminate beliefs based on this illogical and completely unproven leap of faith to medical practitioners goes against the Hipocratic Oath of ensuring that they first do no harm.

    CBT should be a helpful tool for people who actually have problematic thoughts not presented as a fix-all for anything you can’t explain.

    Reply

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