‘It’s time for doctors to apologise to their ME patients’ | Dr Charles Shepherd in the Daily Telegraph | 7 December 2015

December 7, 2015

For too long the medical community has dismissed ‘Chronic Fatigue Syndrome' as a mental illness which can be cured with therapy and exercise.

From the Daily Telegraph, 7 December 2015. The link to this article has now been restored, and so has access to the comments section.

Back in 1955, a mysterious polio-like illness affected 262 doctors and nurses at London’s Royal Free Hospital. The hospital had to close for just over three months.

The outbreak was written up in The Lancet and a new neurological disease entered medical language: myalgic encephalomyelitis, or ME, as it still remains in the WHO Classification of Diseases. “Myalgic” referred to the muscle symptoms; “encephalomyelitis” referred to the various neurological symptoms.

Others were not convinced that ME was a neurological disease, and two decades later two psychiatrists, without interviewing any of the patients, wrote a paper for the British Medical Journal where they concluded that the Royal Free outbreak was due to mass hysteria.

The mud from the BMJ stuck. Like most doctors at the time, I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong.

Ignored or dismissed by doctors, people with ME went undiagnosed or misdiagnosed for long periods of time, often combined with harmful management advice – as is still the case. I can confirm this after developing classic ME following chickenpox, caught from one of my hospital patients. Some developed severe ME, becoming housebound or bed-bound with no medical help. Some never recovered.

During the 1980s, ME was redefined and given a dreadful new name: chronic fatigue syndrome (CFS). The term CFS trivialised a serious medical condition – the equivalent of trivialising dementia by calling it a chronic forgetfulness syndrome – and shifted the focus from a “disease” to a single symptom, “chronic fatigue”.

CFS also brought in a much wider group of people suffering from chronic undiagnosed fatigue. A powerful body of psychiatric opinion convinced the medical profession that CFS was basically a mental health problem whereby people became trapped in a vicious circle of abnormal illness beliefs and behaviours, inactivity and deconditioning. In other words, there was no “disease” present.

The CFS model of causation resulted in two controversial forms of behavioural management – cognitive behaviour therapy (CBT) and graded exercise therapy (GET) – being recommended by NICE as the main form of treatment.

Now we have the PACE trial – the largest and most recent assessment of CBT and GET, which has cost the taxpayer almost £5 million. At long term follow-up, and contrary to what was reported in the press, the PACE trial found no significant difference between CBT, GET, adaptive pacing and specialised medical care.

Public reaction to the spin that has been put on the PACE trial results for CBT and GET has resulted in over 10,000 people signing a petition calling for claims relating to so-called recovery to be retracted and six academic researchers calling for an independent review of the study.

By contrast, in evidence collected from 1,428 people with ME by the ME Association, for which I am medical adviser, 73 per cent reported that CBT had no effect on symptoms while 74 per cent said reported that GET had made their condition worse. The MEA has therefore recommended that NICE withdraws their advice relating to GET.

On the progressive side of this medical divide are physicians and researchers who, like the patient community, believe that ME is a serious multi-system disease, often triggered by infection, but maintained by abnormalities involving, neurology, muscle, and the immune system.

In the UK, a research collaborative with a strong emphasis on the biomedical research has been established. And a major report from the prestigious US Institute of Medicine has recently concluded that ME is a “serious, chronic, complex, systemic disease that can profoundly affect the lives of patients”. ME is not a psychological problem.

Biomedical research into ME is revealing abnormalities in the way that muscle creates energy, along with evidence of an ongoing overactive immune system response. New types of brain imaging are demonstrating low-level inflammation in several specific parts of the brain.

At the same time, a large multi-centre clinical trial is taking place to assess the use of Rituximab – a drug that depletes immune system B cells and which is normally used to treat a form of cancer called lymphoma.

The argument here is not with mental illness, which is just as real and horrible as physical illness. As with any long-term illness, some people will develop mental health problems where talking therapies can clearly be of help.

The argument is with a simplistic and seriously flawed model of causation that patients know is wrong and which has seriously delayed progress in understanding the underlying cause of ME and developing effective forms of treatment.

Opening the 2015 research collaborative section of neuropathology, Jose Montoya, professor of medicine at the University of Stanford, said: “I have a wish and a dream that medical and scientific societies will apologise to their ME patients.”

I agree – the time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years. Doctors need to start listening to their patients and there must now be increased investment in biomedical research to gain a better understanding of the disease process and to develop treatments that these patients desperately need.

Dr Charles Shepherd is medical adviser to the ME Association


The main symptom of CFS is persistent physical and mental fatigue (exhaustion). This does not go away with sleep or rest and limits your usual activities.

Most people with CFS describe this fatigue as overwhelming, and a different type of tiredness from what they have experienced before.

Other symptoms include:

Muscular pain, joint pain and severe headaches
Poor short-term memory and concentration, and difficulty organising thoughts and finding the right words (‘brain fog')
Painful lymph nodes (small glands of the immune system)
Stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipation, diarrhoea and nausea
Sore throat
Sleeping problems, such as insomnia and feeling that sleep is not refreshing
Sensitivity or intolerance to light, loud noise, alcohol and certain foods

11 thoughts on “‘It’s time for doctors to apologise to their ME patients’ | Dr Charles Shepherd in the Daily Telegraph | 7 December 2015”

  1. Excellent. Well done. Just what was needed. It’s just a shame it won’t be front page in all the papers like all the PACE nonsense was.

  2. OMG – I’m dreaming? This has actually been published in a mainstream British newspaper – this week? Fantastic. Thank you.

  3. First the BBC, now The Telegraph!!! Thank you Dr Shepherd. A wonderful turn in events and I feel there’s more good news to follow.


  4. Thank you!
    The Norwegian government apologised; it’s high time our government and the medical establishment did the same – most of all the psycho brigade.

  5. What an excellent representation of the facts, thank you Dr Shepherd. I hope that a great many people get to read the article.

  6. Thank you so much for writing this excellent article, Charles. It must have been read widely, judging by the number of comments left on the website. I posted several myself, and like many others, used the opportunity to add relevant links to papers etc., for information, and in a (probably fruitless) attempt to educate some of the troll crew who still persist in banging on with their ignorant and out-dated “it’s all in their head” stuff. You wonder what prompts these people to bother writing their stupid comments; they do truly embarass themselves by displaying their ignorance. Fortunately, many sensible commenters added a wealth of information about research, conferences etc., so anyone with half a brain could get informed if they so chose. Sadly, many choose to remain in wilfull ignorance despite the wealth of evidence on the biomedical nature of ME.
    Did the article eventually appear in the paper copy of the Telegraph as well as online, does anyone know?

  7. Thank you Dr. Shepherd, at last a thorough and positive article in a national paper; the Telegraph has gone some way to redeeming its previous stance!

  8. Findlow
    It’s not in yesterday’s Telegraph, unfortunately. Lots of CBT and other therapies of the same nature, but only for mental health illnesses thankfully.

    They have to ease their way into fully backing ME as a neurological disease, I suppose!!

  9. This has been being discussed on doctors.net past few hours and not totally negatively. So if you are feeling thick skinned, do not mind casting pearls before swine, have the energy and are a GMC/DNUK member, may be you could take a look and contribute. I am exhausted after putting my head up above the parapet recently on another thread for anaesthetists on DNUK regarding “ME and ga”. If you are a GMC doctor, and haven’t read a DNUK thread on ME, probably best if you don’t. Its depressing, exhausting and makes you realise how much we are up against and how far we have to go.

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