ME is real - the true facts doctors and journalists need to know

ME - Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome, is a real, serious, neurological and multi-system, debilitating illness. It is not a behavioural disorder. Here are some of the facts.

Hello, I’m Giles and I had ME since I finished university. For many years, I was very ill and virtually housebound. Recently, there have been several articles in national newspapers and on the radio, in which I don’t believe the actual facts about this illness were made clear.

ME affects up to 1/4 million people in the UK, and millions around the world.

It was first recognised in the 1930s, but may well have been around before then. It was first called ME - Myalgic Encephalomyelitis - in the 1950s, because of the observed effects on the muscles, brain and nervous system, including inflammation. That was about 30 years before the term ‘Chronic Fatigue Syndrome’ was first created in the 1980s. ME has been recognised by the World Health Organisation’s ‘International Classification of Diseases’ since 1969 as a distinct organic neurological disorder - like multiple sclerosis and motor neurone disease (G.93.3).

People with ME are more likely to die younger, including from heart, kidney, and neurodegenerative diseases, and cancer. More people with ME commit suicide, often because they are not offered the hope and support they desperately need, but are instead often maligned by medics, the media and society, as malingerers or “not really ill”, when they are desperately ill and may often be literally bed bound for many years. Lynn Gilderdale was severely ill with ME since she was 14, and in her 30s she took her own life. Before she died, Daily Mail journalist Gill Swain saw her, and said afterwards: “I had seen African children suffering from starvation, met people dying of AIDS, patients paralysed from the neck down, others in the last stages of terminal cancer. But I had never seen a living person as desperately ill as Lynn.”

Adults and children with ME have been forcibly taken away from their homes and families, and been forced to have unhelpful, even harmful and horrific treatments - because their ‘Chronic Fatigue Syndrome’ was labelled as psychiatric illness.

Professor Simon Wessely, Chair of Psychological Medicine and Vice Dean for Academic Psychiatry at the Institute of Psychiatry at King's College London, has attracted a lot of criticism from people with ME since the 1980s because they say he has been pushing the idea - and treatments - that ME or Chronic Fatigue Syndrome is a psycho-social behavioural disorder, that sufferers are lazy and have wrong beliefs that they are ill when they are not. Professor Wessely has just said, in ‘Nature Reviews - Neuroscience’, that Chronic Fatigue Syndrome is “unequivocally NOT hysterical, [or] non-existent or imaginary”, and that the thousands of patients he has seen “primarily have a burning desire to understand [the illness] and get better”. He talked about suspected Central Nervous System dysfunction, evidence for biological abnormalities in the “hypothalamus-pituitary-adrenal axis”, immune activation, and “overwhelming evidence that certain infections have the ability to trigger” it.

ME most commonly starts after a severe viral infection or similar type of illness. Other triggers include toxic exposure and vaccinations. People most commonly get ME individually, as one-off cases, but there have also been at least 60 epidemics and clusters of ME since the 1930s. People with ME or Chronic Fatigue Syndrome are not allowed by the NHS to give blood.

Thousands of pieces of research from around the world have consistently shown that people with ME (who have post exertional exhaustion, measurable cognitive and autonomic dysfunctions, persistent immune symptoms, and so on - as distinct from people just with general long term fatigue), [people with ME] do have a huge and distressing range of biological, physiological abnormalities. What should be in the news is that this has been confirmed this summer, by an International Consensus Panel of 26 world experts from 13 countries, who between them have over 400 years’ ME research experience, and have treated over 50,000 ME patients. They describe “profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities.” There is shown to be inflammation and lesions and low blood flow in parts of the brain and spine (including dorsal root ganglia) (as shown in brain scans and in post mortems), and abnormalities with: cerebrospinal fluid, the immune system, cytokines, very low natural killer cell function, with hormones especially the hypothalamus-pituitary-adrenal axis, mitochondrial function, cell-free DNA, with liver function, bowel function, increased oxidative stress, acquired serious abnormal gene expression, cardiac output down to as little as 50%, orthostatic intolerance, and breakdown of muscle fibres, amongst others. Another recent study from Newcastle University has shown that “patients with Chronic Fatigue Syndrome have markedly reduced cardiac mass and blood pool volumes”.

ME is absolutely not a behavioural condition where people mistakenly believe they are ill but just need to be convinced that they are well. Illnesses like MS, epilepsy and AIDS used to be disbelieved and badly stigmatised. But it is now long overdue that ME is treated as the serious, real, awful and debilitating illness that it is.

To find out more about the facts about ME, watch my other videos on Get Well From ME, and please do take some time to read all the links below. It’s time to end the misunderstandings and myths about ME.

Links to see:

Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine - ME Association news, 20 July 2011 - http://www.meassociation.org.uk/?p=7173

Newcastle University research - Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging, 15 August 2011 - http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02429.x/abstract

Professor Hooper’s response to the Observer's article about Professor Wessely’s allegations of death threats, 28 August 2011 - Doctor Speedy and ME in search of medical honesty blog - http://niceguidelines.blogspot.com/2011/08/professor-hoopers-longer-response-to.html

Death Threats - Cinder Bridge blog, 28 August 2011 - http://cinderbridge.blogspot.com/2011/08/death-threats.html

X Rx blog by Jamie Deckoff-Jones MD - Keeping It Simple, 13 August 2011 - http://www.x-rx.net/blog/2011/08/keeping-it-simple.html

Chronic fatigue syndrome: understanding a complex illness - Nature Reviews Neuroscience, September 2011 - including quotes by Professor Simon Wessely - http://www.nature.com/nrn/journal/v12/n9/full/nrn3087.html

I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn, by Gill Swain - Daily Mail, 19 January 2010 - http://www.dailymail.co.uk/health/article-1093016/Ive-seen-patients-paralysed-dying-Aids-victims-starving-children--Ive-seen-ill-Lynn.html