Medical Independent

Is it just ME or is this a real disease?

George Winter | 16 Oct 2017 | 15 Comment(s)

Print Friendly and PDF

George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME)

In 1926, TS Eliot, then editor of The Criterion, published Virginia Woolf’s essay On Being Ill, where she bemoans the “poverty of language” with which to describe illness: “Let a sufferer try to describe a pain in his head to a doctor and language at once runs dry… ”         

But Hilary Mantel, in the London Review of Books (4 November 2010), describes On Being Ill as “schoolgirl piffle”, noting that “Virginia only has decorous illnesses” and that “no-one’s pain is so special that the devil’s dictionary of anguish has not anticipated it”. Further, Woolf’s body fluids trouble Mantel: “Virginia never oozes… She may as well not have had bowels, for all the evidence of them in this book.”

Compared to Virginia’s “decorous illnesses”, the movement of bowels — and other effluvia — to the printed page in contemporary accounts of disease is a breath of fresh air. For example, Nasim Marie Jafry’s The State of Me (2008) is a moving novel, laced with much black humour, describing one woman’s 15-year struggle with myalgic encephalomyelitis (ME).

The State of Me prompted my effort to learn more about the competing biomedical and biopsychosocial models of the condition, and I’ve discovered that where ME is concerned, the world of so-called scientific truth is stranger than Jafry’s world of fiction.

Writing in the Journal of Clinical Pathology (2007, 60: 466−471), Prof Malcolm Hooper explained ‘Myalgic encephalomyelitis: A review with emphasis on key findings in biomedical research’. He notes that in 1969, ME was first included by the World Health Organisation in its International Classification of Diseases (ICD), and “in 1978, the Royal Society of Medicine accepted ME as a nosological organic entity”.

So how did the biopsychosocial model of ME arise? According to Hooper, McEvedy and Beard, writing in the BMJ (1970, 1: 7-11) on their reconsideration of an ME outbreak at London’s Royal Free Hospital in 1955, ascribed the outbreak to mass hysteria. Hooper, however, adduces evidence showing that “McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records”. And Dr Nigel D Compston, writing in the Postgraduate Medical Journal (1978, 54: 722-724) observes: “McEvedy’s [sic] and Beard’s conclusions ignore the objective findings of the staff of the hospital of fever, lymphadenopathy, cranial palsies and abnormal signs in the limbs”. Compston concludes that the Royal Free’s medical staff were dealing with “an organic disease complicated by encephalomyelitis in which myalgia was a dominant feature”.

Then something odd happened. On 2 July 2008, someone called Dr Marc-Alexander Fluks appeared online to point out that Prof Hooper’s paper had been retracted, which was the first the Professor had heard about it. The upshot was a letter in the Journal of Clinical Pathology (2008, 61: 1072) wishing “to inform readers that a series of technical errors resulted in the unjustified retraction of the article”, offering an apology to Prof Hooper and regretting “any confusion or distress that may have been caused”.

But as far as confusion or distress were concerned in the ME story — especially for ME sufferers — they hadn’t seen nuthin’ yet. The catalyst was White et al’s PACE study, published in The Lancet (2011, 377: 823−836). This randomised, controlled trial had 641 participants, cost almost £5 million and concluded that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) could safely be added to specialist medical care (SMC) to moderately improve outcomes for what had now been reframed as chronic fatigue syndrome (CFS).

Such was the stushie raised by the PACE trial — and I’m embarrassed to admit my ignorance of it until recently — that six years after its publication, a whole Special Issue: The PACE Trial was published on 9 August in the Journal of Health Psychology (2017, 22, No 9). In one paper, Keith Geraghty refers to the fact that in September 2016, a tribunal ordered the PACE trial’s lead author’s institution to release data following a Freedom of Information case brought by a patient with CFS. The released data, according to Geraghty, “showed that the effectiveness of CBT and GET, in comparison to SMC and adaptive pacing therapy (APT), fell by almost two-thirds”. This released, writes Geraghty, “a perfect storm of patient anger and professional defensiveness”.

Readers can judge for themselves whether these and other documented criticisms are justified. However, switching from science to fiction — although some might allege that even in this age of evidence-based medicine, there’s sometimes little difference — when the protagonist Helen Fleet in The State of Me says there should be “a mass crucifixion of all the GPs, psychiatrists and journalists who don’t believe [ME] is a physical illness”, Jafry is using black humour to make a serious point.

And it’s a point that has the weight of accumulating evidence behind it. For example, Hornig et al, in Scientific Advances (27 February 2015), report robust immune signature study data supporting the assertion that ME is a biological illness, not a psychological disorder.

The debate over the cause of ME is generating much heat. But heat is the ultimate source of light, so let us hope that some gets shed on ME sooner rather than later.

  • Comments

  • John Peters | 20 Oct 2017 19:10

    Excellent column. Thanks for taking the time and trouble, George.

  • Catherine Hale | 19 Oct 2017 15:10

    Thank you for this article. It is a brave journalist who criticises the UK orthodoxy over PACE and the so-called biopsychosocial model. We patients really appreciate science writers who take time and effort to research the background to the debates on ME and to listen to patients and give weight to our testimony.

  • Slim | 17 Oct 2017 07:10

    Excellent article. Thanks. :) This story has a long way to run before it is fully told. A lot of powerful establishment figures, institutions, and practices are going to come out of it looking very shabby indeed.

  • Charles Turner | 17 Oct 2017 06:10

    Thank you so much for this piece. So few U.K. Journalists have had the courage or curiosity to question the BPS model of M.E, despite it having shaped NICE, as well as DWP guidelines for decades. PACE's failure to provide evidence for the hypotheses which underpins it will hopefully mean funding will now switch to biomedical approaches, as has happened in the USA. Nasim's novel is the perfect contrast. It paints a true picture of the illness I have had for thirty years, whereas the BPS model of sufferers as 'fear-avoidant and deconditioned' has always been a fiction. As a work of literary pathography I think it a worthy descendant to Charlotte Perkins Gilmore's 'the Yellow Wallpaper.' In that story, the sick heroine is driven to question her sanity by a paternalistic Dr. Nasim's novel recounts how a tiny close-knit group of powerful UK psychiatrists tried, for decades to do the same to approximately 25000 of us.

  • Fiona Murphy | 16 Oct 2017 23:10

    I got ME from shingles in 2006 and have never really recovered but managed to get back to work part time then full time but developed a severe attack of gastritis, and had a huge relapse after my dad passed away. I now struggle every day with pain, memory problems, exhaustion, muscle aches and brain fog and my daughter has it too. We are denied benefits now as we look ok ! ! When will the torture of this disease ever end ?

  • PC | 16 Oct 2017 21:10

    I am a doctor and I have suffered from a "fatigue/weakness that was chronic", however you want to label that. The PACE trial is simply shocking, a wholly corrupt and anti-scientific sham. Even if you were an advocate for the 'psych' model of ME, you could not stand over the shambolic and blatantly flawed PACE trial if you cared about science. It's simply weasel words for the author here to shy away from stating that. The fact is there are indeed patients whose symptoms are more likely psychiatric but there are many whose are not. As a doctor and as a patient I am deeply frustrated that we have no real idea what's going on in ME/CFS. As a doctor, I'm sorry to patients that we can't do more for them.

  • | 16 Oct 2017 15:10

  • Eddie L. | 16 Oct 2017 15:10

    Re: describing the symptoms of M.E: it took me a long time to describe them even to myself. Even if I say to you "it's like concussion" you may not have ever suffered a concussion* so you won't know what I mean. But I actually have had concussion, many years ago. Someone ran into me in the dark, banging my head. A severe headache followed for several days. The concussion-like headache of ME, however, doesn't go away. I've had it for over 10 years. The fact that I have been (metaphorically speaking) bashed over the head by ME rather than by a blunt instrument does mean that my brain has had a "hit" which accounts for all the other malfunctions in my body associated with ME. We do need to find words to describe ME otherwise people, doctors, everyone, will go on thinking it's about fatigue - a non-characteristic symptom constantly reinforced by the misnomer "CFS". *See also The Definitive Description of ME by A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]; Ramsey used the word "vertigo":- http://www.meactionuk.org.uk/ramsey.html

  • jimells | 16 Oct 2017 15:10

    The policy of "ME is a mental illness" is much easier to understand when one realizes that several PACE principle investigators have long-standing financial relationships with disability insurers. Of course it is purely co-incidental that insurers have saved billions by denying benefits under various "mental illness" exclusions. Any ME patient who suggests there is a criminal conspiracy to deny benefits and medical treatments is surely proving that ME is a "mental illness" that involves paranoia as well as "fear of exercise". By the way, those conflicts of interest were not revealed to the trial participants, which violates the participant's rights to informed consent. That alone is sufficient to demand retraction and damages for the trial participants who were harmed by Graded Exercise Therapy.

  • Tanya marlow | 16 Oct 2017 14:10

    I have ME and I am a patient advocate for better treatment of ME patients and research into ME. I really appreciated the succinct way you distilled the complex battle between those patients and doctors who know ME to be an organic (sometimes life-threatening) disease, versus the powerful voices in medicine (psychiatrists) who deny its existence. It's articles like this that will help us reach the tipping point of public awareness and therefore better treatment. Thank you

  • Marilyn Gavranovic | 16 Oct 2017 14:10

    Brilliant article

  • Aine | 16 Oct 2017 12:10

    It is intellectually embarrassing for Doctors in Ireland to say ME is psychological. It has been listed since 1969 with the WHO as a neurological illness. It is multi- systemic in nature causing profound dysfunction of the immune, neurological, metabolic, gastrointestinal, systems. Doctors are 50 years clinically out of date in Ireland and practicing unsafely with patients. You cannot deny what you see in your clinics and hospital rooms. Stop abusing your patients and start updating your clinical knowledge from the biomedical scientists at Stanford, Harvard, Colombia, Cornel, Norway and Australia. Try your ME patients with equality not abuse!!

  • helen oliver | 16 Oct 2017 08:10

    Nasim Jafry's book and articles like this are shots of light in this dark grey world of M.E, thank you. As I witness the slow degeneration of my wonderful 27 yr old daughters health, feeling at a complete loss for lack of medical attention, support, understanding and almost more importantly the almost deliberate unwillingness of british investigative journalism to seek out the truth regarding the horrific harm and neglect of PwME... your article offers hope.

  • Clare | 16 Oct 2017 07:10

    I have ME and stuggle to find the words to describe my symptoms. I resort to this: imagine you had just cycled 10 miles and your legs feel wobbly, shaky and ache, just from walking a few metres. On top of that you have a bad hangover, and on top of that you have bad flu. Every day for years, and the smallest exertion makes it worse. But that still doesnt describe it, words like dizzy, lightheaded, pain, ache, malaise arent precise enough. And never say tired, because someone will say "oh I feel tired all the time too" but they are well enough to leave their house everyday, and I can only leave mine once a fortnight, then spend 2 days in bed recovering. ME used to be known as atypical Polio, because outbreaks happened alongside polio, and the symptoms are similar.

  • Michael Allen, PhD | 16 Oct 2017 01:10

    I am a clinical psychologist who's suffered from M.E. for 20 plus years. There is absolutely no scientific evidence to support the biopsychosocial model of this disease. None. Nada. While there are 1000s of studies finding immune and neurological abnormalities in people with M.E. One mistake gets repeated over and over again: the failure to actually listen to patients carefully. The notion that it's any kind of hysteria is an attempt to force a turn of the 20th century Freudian concept developed from middle and upper class Viennese onto millions of people who are demonstrably sick. But Virginia Woolf was right. There is not an easy vernacular or medical language to describe many of the symptoms. The biopsychosocial people and Hillary Mantel are guilty of lazy thinking in the place of actual science and rigorous thought.

Have your say. Add a comment

Post your comment

Medical Independent Poll

Would you work as a healthcare professional at a supervised injecting facility for drug users?


Submit Poll
  • Search our Archives

  • Search