It’s time for doctors to apologise to their M.E. (also known as "Enteroviral Encephalomyelitis") patients
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 M.E. (also known as Enteroviral Encephalomyelitis), as it still remains in the WHO Classification of Diseases.
"Myalgic" referred to the muscle symptoms; "Encephalomyelitis" referred to the various neurological symptoms.
"I left medical school believing that M.E. was not a real disease, and I would probably never see a case. I was wrong"
Others were not convinced that M.E. (also known as Enteroviral Encephalomyelitis) 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 M.E. (also known as Enteroviral Encephalomyelitis) was not a real disease and I would probably never see a case. I was wrong.
Ignored or dismissed by doctors, people with M.E. (also known as Enteroviral Encephalomyelitis) 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 a classic "postviral fatigue syndrome" following "chickenpox", caught from one of my hospital patients.
Some developed severe M.E., becoming housebound or bed-bound with no medical help. Some never recovered.
During the 1980's, M.E. (also known as Enteroviral Encephalomyelitis) then became conflated with a Chronic Fatigue Syndrome (CFS) definition, in which "EXCLUDES" it.
The term "CFS" trivialised a serious neurological disease - the equivalent of trivialising "dementia" by calling it a "chronic forgetfulness syndrome" - and shifted the focus from a "disease" to a single symptom, "FATIGUE".
"CFS" also brought in a much wider group of people suffering from CHRONIC "undiagnosed" FATIGUE.
(Dr. Shepherd falls within this much wider group himself after suffering from an acute onset 'Postviral Fatigue Syndrome' after "Herpes Zoster Encephalitis" and has NEVER suffered from a "Polio-like" 'Encephalomyelitis' caused by an 'enterovirus' as with 'M.E.')
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.
Fact box
Symptoms associated with 'Chronic Fatigue Syndrome' criteria
The main symptom of "CFS" criteria 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:
- Sore throat
- Muscular pain, joint pain and severe headaches
- 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
- Poor short-term memory and concentration, and difficulty organising thoughts and finding the right words ('brain fog')
- Sleeping problems, such as insomnia and feeling that sleep is not refreshing
- Sensitivity or intolerance to light, loud noise, alcohol and certain foods
By contrast, in evidence collected from 1,428 people with M.E. (also known as Enteroviral Encephalomyelitis) 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 M.E. (also known as Enteroviral Encephalomyelitis) is a serious multi-system disease, triggered by enteroviral 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 M.E. is a "serious, chronic, complex, systemic disease that can profoundly affect the lives of patients".
M.E. (also known as Enteroviral Encephalomyelitis) is not a psychological problem.
Biomedical research into M.E. (also known as Enteroviral Encephalomyelitis) 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 M.E. (also known as Enteroviral Encephalomyelitis) 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 agree - the time has come for doctors and scientists to apologise for the very neglectful way in which M.E. (also known as Enteroviral Encephalomyelitis) 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
I wonder why the ME Association doesn't stock this book?
Amended with corrections to inaccuracies in original article
Enterovirus PCR - The Leeds Teaching Hospitals
SEID Diagnostic Algorithm (ME/CFS) (2015)
"Similarly, Myalgic Encephalomyelitis (M.E.) doesn't describe the essence of the (SEID) disorder. Although many people advocated for it, it actually doesn't apply to what we defined" - Ellen Wright Clayton
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