Mail online post, by Jerome Burns, 15 August 2017: Why are doctors and patients still at war over M.E.?

How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

  • Myalgic encephalomyelitis can leave those affected bedridden for years
  • It’s linked with 60 symptoms, most commonly a feeling of constant exhaustion
  • There’s been a long-running debate between doctors and patients about cause

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’.

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed ‘yuppie flu’ because it seemed typically to affect young professionals.

For years there’s been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

The issue: the best way to treat ME. This has huge significance for the estimated 500,000 people in Britain affected by it. The official NHS treatment for their condition is delivered by psychologists and involves a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) which involves doing a little more each day.

The idea is that doing regular aerobic exercise would help patients a lot, but that they are held back by ‘fear’ of activity: the CBT is meant to overcome this.

Many patients and doctors claimed this combination provided little if any benefit.

This dispute has now broken out into the public arena in an extraordinary fashion. Two weeks ago the Journal of Health Psychology published what was effectively an attack on the official NHS treatment.

At the heart of the issue is what causes ME. Patient activists and some doctors consider it a physical disorder.

This ‘biological’ theory appeared to be reinforced by recent research from Stanford University in the U.S. that identified a new set of ‘messenger’ molecules in the blood that are part of the immune system and behave differently in ME/CFS patients.

New, sophisticated equipment allowed a team to run a very detailed analysis of the blood of 192 patients, comparing it with nearly 400 healthy people. They found that immune system messenger molecules (cytokines) that trigger inflammation and produce flu-like symptoms were higher in patients with the most severe symptoms.

An independent expert, Gordon Broderick, a systems biologist at Rochester General Hospital in New York, commented that it was a ‘tremendous step forward’.

Read more

More articles inspired by the publication of an issue of the Journal of Health Psychology’s issue on ME/CFS:

Harsh criticism of big ME-study (Norwegian article with English translation)

The so-called PACE-the study is school example of poor research, writes journal editor. Thus, the fight rolls on ME/chronic fatigue syndrome.

The researchers behind the PACE-the study believes the study shows that training and cognitive therapy can improve or cure ME/CFS. Not all agree in the conclusion.

Looking at the Evidence (blog post by mrspoonseeker)

Chronic fatigue syndrome reality conflicts with medical study (in The Mining Journal)

American physicians have been strongly influenced by the PACE trial. This may be the result of our devotion to the concepts of “Evidence Based Medicine.” One simply has to publish a study, whether well-constructed or not, biased though it may be, perhaps even deeply flawed, and the results can be adopted and repeated as gospel.

The research community, on the other hand, has rejected the psychiatric model epitomized by PACE. They instead are looking for a physiologic explanation, whereby there is some actual, physical phenomenon at work.




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