‘Chronic consensus or controversy’, The British Psychological Society, 9 August 2011

From the news page of the British Psychological Society, 9 August 2011

Experts from five continents have agreed upon on a new set of ‘International Consensus Criteria’ for myalgic encephalomyelitis (ME; also referred to as chronic fatigue syndrome or CFS), which they hope will improve clinical diagnosis and research into the condition.

Writing in the Journal of Internal Medicine in July (www.meassociation.org.uk/?p=7173), the 25 co-authors said: ‘The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.’

The new criteria are the latest in a series of attempts to nail down the hallmarks of ME/CFS. For example, last year saw a revision to narrow down the Canadian Case Definition, originally published in 2003, which has proved popular with many researchers. Bruce Carruthers, a psychiatrist in private practice in Vancouver, who was lead author on those 2003 criteria is also co-editor of the new International Consensus Criteria.

A key departure from its forerunners by the new International Criteria is that symptoms and signs need not have been present for six months before a diagnosis can be made. ‘No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months,’ the authors said.

However, the cardinal symptom remains ‘Post-Exertional Neuroimmune Exhaustion’ – a profound loss of energy following exertion, and impaired recovery. Also, the patient must have at least one symptom in each of the following categories: neurocognitive impairments (e.g. pain); immune, gastro-intestinal and genito-urinary impairments (e.g. food sensitivities); and energy production/ transportation impairments (e.g. laboured breathing).

The new criteria also urge that the CFS label be dropped. ‘Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion,’ argue Carruthers and his colleagues. ‘Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days.’

Publication of the new diagnostic criteria coincided with reports by the BBC and elsewhere of a hate campaign being waged against scientists investigating the psychology of ME/CFS (tinyurl.com/43gdktg). Psychiatrist Simon Wessely at the Institute of Psychiatry said he’d been the target of intimidating letters, e-mails and phone calls. ‘Sadly some of the motivation seems to come from people who believe that any connection with psychiatry is tantamount to saying there is nothing wrong with you, go away, you’re not really ill,’ he told the BBC.

Chartered psychologist and BPS fellow Dr Ellen Goudsmit has ME and researches the condition. She had first-hand experience of the animosity that often confronts scientists working in the field – including two complaints made about her to the BPS and a court case, which she won. But she says it’s not just a reaction against a psychological interpretation of the illness. ‘All those who have harassed and threatened me during the past ten years have known that I was a patient and were well aware of my criticisms of psychiatric theories about ME,’ she says. ‘However, patients had become increasingly angry at the way the medical world had trivialised the illness and hyped the benefits of psychiatric interventions like CBT,’ she explained, ‘and that created a fertile ground for conspiracy theories and abusive e-mails.’

Goudsmit herself became a target after challenging factual errors in posts on the internet. ‘Those responsible are a small group, most don’t have ME themselves, but they’ve alienated a lot of experienced experts who didn’t want to risk being in the firing line and retired. In my view, the real victims of the conspiracy theorists have been people with ME.’

9 thoughts on “‘Chronic consensus or controversy’, The British Psychological Society, 9 August 2011”

  1. Why do people have a problem with answering people’s concerns. If I was so sure of the truth and had the facts and convinced that there was no agenda, I’d go out of my way to answer people and to tell them. A lot of people have a distorted view of what aggression and abuse is and the perception can change in different cultures. It’s the intent which is important NOT the perception of the person receiving what she thinks is abuse.

    The majority of people with ME wouldn’t mind psychological therapies if they were offered as a treatment after a diagnosis of neurological (CNS) ME that has a diagnostic test because there had been biomedical research on the pathology of their distinct illness using a specific criteria for ME. Also, if the CBT didn’t try to brainwash people by stating that there’s no underlying disease process in CFS (there isn’t in the psycho-social model, there is in ME though) and tell them that their own behaviour causes deconditioning.

    This affects many aspects of a person’s life outside the usual chronic illness limitations-public and professional perception and benefits/disability insurance claims. People have a right to be angy, it’s called righteous anger against social injustice.

    She argues that there is no conspiracy. People conveniently switch off and use it far too liberally but there are so many incidents where there has been injustice in the politics surrounding ME that they can’t be brushed under the carpet with a few glib statements.

    Check out the change between the Hansard Ann Keen statement on blood safety, the emails from the DoH to people enquiring about the blood ban policy which was on the MEA site and then the change in the actual blood donor policy right on cue for the press release about the date when the ban would be implemented.

    Note the difference in the reasons given and the more honest approaches of other countries blood donor policies.

    Just one of the many examples of how the government deal with ME.

  2. I don’t condone real abuse but the concerns of many who feel that genuine ME is not being given the correct standing, diagnosis and biomedical research has not been dealt with. People then get angry. We’re seeing this in the political arena where even the mainstream views are slowly accepting the corruption that some, frequently dismissed as conspiracy theorists, have been trying to expose for years.

    So why don’t the psychiatrists concentrate on CF and its psycho-social syndromes, if they do exist (I suspect most are just theories) and leave ME for the scientists and understand the frustrations when government health care chooses the psycho-social CFS over the neurological, multi-system ME and lumps them together with a weak diagnostic criteria that does a disservice to those who will continue to complain.

  3. How does one conflate a complaint with animosity? If one has reason to believe they have grounds to make a complaint, then surely a complaints service exists to evaluate the quality of that complaint.

    Who are these specialists that have retired? How many of them like Professor Wesseley claim retirement yet appear routinely in peer reviewed science about a subject they claim to have retired from? How many indistinct criticisms does she intend to levy upon indistinct, undefined elements of the ME community?

    What is the difference between an injustice in the politics surrounding ME and a conspiracy. An injustice requires someone to conspire at some point surely?

  4. People write and email to researchers and after article that they view as outrageous so note who’s starting this? Surely the researchers, policy makers and journalists have more responsibility to remain professional.

    More importantly, if some of the doctors and scientists didn’t listen to the patients and advocates, then we wouldn’t have got as far as we have i.e. the use of the CC in mainly US research, XMRV research and the ICC to name just a few.

    It might be time that the psychiatrists and researchers using the vague criterias actually listened to the criticisms, learnt from the patients and either stick with CF and its syndromes for those that have this vague entity/are happy with the treatment or use strict criteria, have some integrity and do the hard work of looking at the pathology of ME.

  5. Just because you may not know who has retired doesn’t mean that good people, like my doctors, didn’t. I’ve lost quite a few. Some didn’t like the abuse and said so. Who has problems answering questions? Isn’t this a bit of an urban myth? Wessely probably gets his name listed as an author because he is head of department and proofread the paper. Some journals still permit that. As for the conspiracies, Google and you’ll soon find a few: links to insurance companies (except never read anything linking a company with Andrew Dillon, Fiona Godlee, Richard Horton, whoever chose the members of the GDG) and even if Professor White is an advisor to one company, so what? You have to declare a conflict of interest so readers of your studies are going to be extra suspicious. No doctors are going to risk their career or reputation to promote a company’s views unless they can justify them. Remember the chap who writes for the Times and his links to BUPA? That was proven as a case of ‘his master’s voice’ and I certainly remember the criticisms that followed. I don’t read his columns anymore. Google and you’ll also find the one about Dr S and Healthwatch who were supposed to be anti-ME when they weren’t. Godlee has a medical degree but if she’s objective, then Gaddafi is a democrat. Is being a lousy editor a conspiracy? Yes, she should be objective and she isn’t. i’m sure she’ll get what she deserves in the end. The bit in the Psychologist was generally positive and debunked Wessely’s explanation that the conflict reflected anger at psychiatric theories and treatments. The BMJ used doctors as examples, including Dr Shepherd who is hardly known for his support of a psycho-social model, and the Psychologist used a psychologist who is also a patient. I’m sure Wessely was not pleased. Hoorah.

    1. When you don’t know who has supposedly retired for these reasons it becomes hearsay.

      I could offer the reverse argument that professionals retire from ME research because of abuse within the medical establishment rather than patients. That might sound like hearsay too.

      Except, I can link you to a lengthy testimony about it:-

      http://www.youtube.com/watch?v=KhB-701-BMU

      So whose to say patients and their advocates aren’t just the easy excuse? What we definitely are seeing here repeatedly is that it is easy to attack a group without definition because there is no risk of libel.

  6. I saw the video and it doesn’t surprise me. A few American scientists were forced out. I think Ben Natelson was as well. The people who retired here were not forced out, except one.

    The American researchers have never been subjected to the abuse described in the medical journals as the people responsible were more concerned with the problems we faced in the UK (PACE trial, NICE guidelines, lack of funding by the MRC).

    Ask a patient who was around in 2004. They’ll be able to fill you in.

  7. At the risk of spamming this news item, an additional point needs to be made.

    This is not now, and has never been an ME issue. I refuse to believe that criticism and abuse (and you need to be very careful what you decide is and isn’t abuse) of researchers and doctors is limited to the treatment and research of ME.

    I am concerned that what we are witnessing here is a near 10 year old squabble between established advocacy and its critics played out in the press ad nauseam in a most disgusting fashion, all the while the majority of patients are only left to suffer for it. Was it more important to single out an ill-defined conceptual group of people with whom both Goudsmit and Shepherd seem to bare a grudge against than it was to remove the frame of this being an ME issue entirely?

    There is no moral superiority here for any of us, and it’s about time everybody took a big bite of the humblest of pies.

  8. You seem to be implying that Dr Shepherd is being less than honest or a bit of an intolerant wimp. He needs more of a stiff upper lip, does he? You’ve demonstrated that you know little about what happened and haven’t googled, but still feel perfectly happy to judge someone with no record of dishonesty. So this is all about a grudge but you don’t know why he might have one? You eat a pie if you want to. I’m so grateful we have Dr Shepherd and not Dr Miller.

Comments are closed.

Shopping Cart