The 28th October was a distressing day for all of us who suffer from M.E.
M.E. (Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome) is a serious, potentially life-threatening, neuro-immune chronic illness which affects 250,000 people in the UK alone. Defined by the World Health Organisation as a neurological disease many moons ago in 1969.
Yet here we are 46 years later, with the UK headlines of the day stating that ME/CFS “…is not a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively…” by employing Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). This was all based on psychiatrist Professor Michael Sharpe’s interview following an article in the Lancet Psychiatry journal. The findings presented in this journal were based upon the PACE trial from 2011 but cleverly repackaged by Prof. Sharpe and co to appear as if this was a new study and not the profoundly flawed PACE trial.
The PACE trial has been heavily criticised worldwide and renowned New York Times journalist, David Tuller published an insightful and highly critical article pointing out the blatant flaws of the PACE trial and called for an independent investigation, just a few short days before the latest sensationalist wave of ME headlines hit the UK shore.
A major PACE problem:
- In order to be accepted into the study, patients had to score 65/100 or lower on physical function (healthy people score 95 – 100). According to the original trial protocol patients had then to reach a score of 85/100 after “treatment” in order to be deemed “recovered”. However half way through the study the authors decided to change this threshold of “recovery” down to 60. That’s a psychology 101 no-no. Essentially a patient could enter the trial at a functioning level of say 65/100, get worse, score 60/100 and be deemed “recovered”. Crazy, right?
- Furthermore, a person suffering from congestive heart failure scores around 57/100. So how can 3% more than that possibly be considered healthy, giving someone the ability to live a full life? Essentially the use of the term “recovery” should be replaced with “a level of function similar to that of someone with congestive heart failure”.
This is what these headlines have been based on, manipulated data and a major misuse of terminology.
If there had been a significant improvement – great! But the fact is there wasn’t, and to add insult to injury, these headlines will reinforce the previously dissipating, ignorant idea that people with ME who haven’t improved are lazy and negative.
I have read account after account of ME sufferers who have been worsened by GET and CBT, never to have recovered years, even decades later; the ME Association have been flooded with such accounts. These people’s lives are being stolen from them partially by ill-advised doctors, and then they’re blamed for not having tried hard enough; they tried so hard that their body started to shut down. Victim-blaming at its finest.
This isn’t just an ME issue, this is an issue of social justice whereby the vulnerable minority of the day is once again being silenced and slandered; a political issue of power and cost-cutting is being disguised as a well-meaning, “scientific” issue. We’re talking about individuals who have been wrongfully and forcefully institutionalised for having a physical illness (See Karina Hansen’s story here, sadly Karina has sustained brain damage whilst being psychiatrically treated) and have even died as a result in some cases (See Sophia Mirza’s story here).
Does anyone else feel like we’ve tripped and fallen back into medieval times?
Luckily, we are the information generation and there is something we can do about this, we can make ourselves heard. We are not a “vocal minority” as Prof. Sharpe would have the general public believe. We are a majority of 250,000 people in the UK alone, and millions worldwide, who are essentially being dismissed, degraded and, as a result, being physically harmed due to a severe misuse of GET and CBT.
Let’s stand together and sign the ME Action Network’s petition to get all uses of the false term “recovery” retracted from the original Lancet article – we’ve already reached 3,000 signatures in less than 24 hours, this can make a difference.
You can also head over and support the ME Association who continue to campaign for the removal of GET from ME treatment guidelines.
UPDATE: Some brilliant news to balance out the aforementioned controversy – the US National Institute of Health has just announced that ME/CFS will now have a home within the National Institute of Neurological Disorders and Stroke (ME/CFS had previously been housed in Women’s Health despite affecting both men and women) and have a research protocol in place which will intensely study ME/CFS. Thank you NIH! Come on UK, it’s our turn to catch up!