Reprinted with the kind permission of ME Research UK.
The Royal Society of Medicine in London hosted a meeting on ‘ME/CFS: Frontiers‘ on March 18th 2015. The aim was to give delegates, all members of the Royal Society of Medicine, “a rare opportunity to learn about ME/CFS from a clinical, scientific and political perspective.” Speakers included Dr Charles Shepherd of the ME Association; Anna Gregorowski, a Nurse Consultant at Great Ormond Street Hospital; Dr Luis Nacul of the London School of Hygiene and Tropical Medicine; and Dr Gabrielle Murphy from the ME/CFS Service at the Royal Free London.
Speaking on “The politics of ME/CFS“ in the afternoon was ME Research UK’s stalwart Patron The Countess of Mar, an Independent Cross-Bench Peer in the House of Lords, who gave a robust presentation of her views on the illness. The Countess is a member of the All Party Parliamentary Group on ME, and chairs Forward-ME, the group formed in 2008 as a forum for the consideration of ME-related issues. Forward-ME has met with a range of professional bodies from health, social care and education in the past, including Prof Steven Holgate, Lord Freud, Edward Timpson MP and representatives from ATOS.
In her presentation, which can be downloaded in full here (pdf), the Countess explained that she had been a member of the House of Lords for forty years, and that for more than twenty years she has been engaged in trying to persuade government that ME/CFS – together with organophosphate sheep dip poisoning, Gulf War Illnesses, Aerotoxic Syndrome and other medically unexplained physical symptoms, known as MUPS – are not figments of patients’ imaginations, nor nocebo effects, but are very real conditions. As she continued, “In so far as ME/CFS is concerned I have had some support from Members of Parliament who have constituents with the illness, but have been ploughing rather a long and lonely furrow in the Lords. For the sake of brevity, I will call the condition ME, which is what most patients prefer, except where accuracy demands otherwise.”
She pointed out that once a person, child or adult, has the ME label, all support and assistance from the medical profession and social services seems to vanish into thin air. Far too many of professionals treating and caring for people with ME have not received the message about the seriousness of the condition, despite the World Health Organisation classification of CFS/ME as a neurological condition under ICD 10 G93.3 and despite major reports, such as the CMO report on CFS/ME in 2002 (available here) and two All Party Parliamentary Group on ME reports. All these reports recognise the severe impact that this disease can have on many patients’ lives, but, she continued, despite all the fine words of Ministers and report writers, I repeatedly ask myself why it is that the recognition and treatment of this illness has remained in the doldrums for so long?
When we think of politics we tend to think of party politics – what goes on in the Westminster village, in local government or at the parish pump. But the Countess pointed out that it was a while before she recognised that in other settings there are ‘medical politics’. “Until the 1980s, when the press picked up on the ‘Yuppie flu’ diagnosis, there seems to have been tacit acceptance that ME was a real physical condition even though the cause was then, as it is now, unknown. There were a number on notable British doctors, amongst them Dr A. Melvin Ramsay, who flew the flag for Myalgic Encephalomyelitis from the 1950s onwards, Dr Elizabeth Dowsett, Dr Alan Franklin and Dr John Richardson who, from their observations of ME patients over decades, were convinced that ME was caused by persistent viral infections”. A recent paper by Dr Mady Hornig and Prof Ian Lipkin at Columbia University’s Mailman School of Public Health seems to confirm the persistence of an infection, through the observation of distinct immune changes in ME/CFS patients.
In the Countess’ view, it was when a small group psychiatrists renamed ME as CFS in the mid-1980s that the real problems began. “They insisted that it was a psychosocial behavioural problem that could be readily overcome with a course of cognitive behavioural therapy and graded exercise. From their earliest beginnings, they managed to attract the attention of the media and of their medical colleagues with their assertions….The cause and solution were at hand. No need for doctors to do too many investigations; no need to perform anything but psychological research; no need for social security payments by finding that claimants are really fit for work.” And she points out that as recently as last year, CFS was described as “a culturally driven disorder with no known organic cause” in the BMJ, despite the fact that more than 6,000 peer reviewed papers, including experimental studies which demonstrate a range of biological findings associated with people with ME. While charities have funded excellent pilot and seedcorn studies on a shoestring, a significant number of biomedical research applications have not been funded by the MRC in the past 20 years, including some targeted at pathophysiology. “It is hard to believe that all were written so badly that they could be rejected, particularly as some came from established researchers with a track record in this and other fields.”
The Countess went on to tell the assembled professionals that it is extraordinary to her that men and women who are trained to ‘first do no harm’ and to ‘listen to the patient’ cannot but be aware of the enormous damage they are doing to a very large number of patients with this condition – more than 200,000 in the UK . By recommending that too many investigations should not be conducted because they encourage illness behaviour, they are risking missing vital findings of treatable conditions such as endocrine dysfunction, rarer medical conditions or even cancers that present with chronic fatigue. How, with all the publicity, can they not be aware of the misery, neglect and, too often, abusive treatment that I can only describe as barbaric that is meted out to patients with a diagnosis of ME? Today, we have a compendium of purely subjective conditions with ‘labels’ such as conversion syndrome, pervasive refusal syndrome, and neurasthenia (to name but a few); though there is no biological explanation for these, the labels do make the uninitiated believe that these conditions are psychological when they could very well be physical and biochemical.
In her peroration, the Countess asks how the situation can be changed, and quoted Frantz Fanon, the French psychiatrist, philosopher and revolutionary from the middle of the 20th century who wrote that sometimes people hold a core belief that is very strong, and will rationalise, ignore and even deny anything that doesn’t fit that core belief.
“Ladies and gentlemen, I know how very difficult it is to say ‘Sorry, I got it wrong’, especially when your whole career has been based on a particular belief. I have been told that, in medicine, nothing will change until the old guard moves on. The history of medicine is littered with instances of this phenomenon. It is my very sincere wish that the situation will change radically long before the changing of the guard.”
The Forward-ME website has a full text version of this talk, ‘The politics of ME/CFS‘.
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ME Research UK is a Scottish Charitable Incorporated Organisation funding biomedical research into ME/CFS and related illnesses. Our principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS, but we also have a mission to "Energise ME Research." http://www.meresearch.org.uk/