New NHS guidelines will not tell chronic fatigue syndrome sufferers to exercise to relieve symptoms. 

Today, the National Institute for Health and Care Excellence ruled against graded-exercise therapy (GET), for patients.

The controversial treatment involves getting started in exercise such as swimming or walking and gradually increasing your intensity. 

Many patients wanted it to be banned, however, It was implied that their condition was psychological and not physical. In some cases, it actually made matters worse.

Chronic fatigue syndrome sufferers will now be spared a controversial exercise regime that asked them to undertake more and more physical activity designed to help them better live with the condition but that campaign groups said did more harm than good (stock image)

People with chronic fatigue syndrome will no longer have to follow a controversial exercise program that required them to do more activity to improve their condition. Campaign groups claimed that this did more harm than good (stock photo).

NICE instead recommended that CFS patients be encouraged to plan physical, mental, and spiritual activities to keep within their energy limits. This technique is known as ‘energy management’ or ‘pacing’.

However, critics of this ruling claim that patients are now being left with the condition and not able to recover. 

Advice was published following a long-running dispute between patients and doctors over how to treat the condition, also known as Myalgic Encephalomyelitis  

NICE guidance was originally due August. However, it was postponed after experts objected at the banning GET and the limitation of the use CBT.

CFS is a long-term illness with a wide range of symptoms, the most common of which is extreme tiredness, but also muscle and joint pain, headaches and problems thinking and concentrating.

These can be severe and last for years.

What is ME (myalgic-encephalomyelitis?)? 

ME is a long-term, poorly understood condition that can cause a variety of symptoms.

It is often associated with chronic fatigue syndrome (CFS), and is also known by CFS/ME.

It is characterised by extreme tiredness and general feeling unwell.

People can suffer from sleep problems, joint and muscle pain, headaches, sore throats, and other problems.

They may also experience flu-like symptoms like feeling dizzy or stuck, or having a fast and irregular heartbeat.

The severity of symptoms can change day to day and doing too much activity usually makes them worse – known as post-exertional malaise.

ME patients can experience dramatic differences in their symptoms and the length of their illness. 

It is estimated that around 250,000 people in Britain and 17million worldwide suffer from the condition. 

ME is not diagnosed. Instead, doctors use symptoms and rule out other conditions to determine if a patient has ME.

As it stands, the treatments offered to patients for ME are cognitive behavioural therapy (CBT), a talking therapy used for anxiety and depression, and a structured exercise programme called graded exercise therapy (GET).

The National Institute for Health and Care Excellence (NICE) was due to publish guidelines this month that would no longer recommend these treatments.

NICE was unable to reach consensus because of strong opinions about the illness.  

Source: NHS and Action for M.E.

The condition, once known as ‘yuppy influenza’, is now believed to affect approximately 250,000 Brits and 17 million people around the globe. 

Prior to the new guidance GET was one option that doctors had to treat the condition. It has no cure.   

NICE stated that a program that is based on incremental increases in exercise or physical activity, such as graded exercise therapy (GET), shouldn’t be offered to treat CFS. 

Instead, health officials recommend that CFS sufferers only exercise in exceptional circumstances.

They should start by encouraging the patient to exercise at a level that doesn’t cause them any discomfort. 

NICE also stated cognitive behavioural treatment (CBT), which is a mental treatment that helps people change their thinking and behavior, is not a treatment to treat CFS. 

NICE stated that CBT was sometimes misunderstood as a cure for CFS. However, it can still be helpful in managing symptoms. 

Baroness Finlay, a consultant palliative medicine, and vice-chairwoman for the NICE guideline commission, stated that they had worked hard to make CFS sufferers’ care more emphatic.  

She said that people with CFS should be listened, understood, and supported to adapt their lives.

‘The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.’  

Action for ME, a campaign group, hailed the new guidance as a victory for patients.

Its chief executive officer, Sonya Chowdhury, said: ‘The new guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with CFS will not repeat the anguish of the past.’

The group’s medical advisor Dr David Strain said the NICE guidelines represented a opportunity for medics to help CFS sufferers. 

He said that the guideline should encourage better acceptance of CFS and encourage doctors to personalize care based upon individual needs.

“It is a real chance for doctors to transform care patients receive.”

Experts say that the ruling will confuse doctors and cause patients to be unable to recover. 

Professor Peter White, an expert in psychological medicine from Queen Mary University of London’s was concerned about the decision.

He stated, “Having cared for many patients with this illness, it worries me that this guideline seems suggest that patients need learn to live and cope with CFS, rather that being helped to recover.” 

Professor Trudie Chalder an expert in cognitive behavioural psychotherapy from King’s College London agreed.

She stated that the NICE guidelines for CFS were not in accord with the research evidence. 

“Researchers from various institutions across the world have found that cognitive behaviour therapy and graded exercises are effective for some patients suffering from CFS.”

‘Being a clinician and researcher in this field I can’t help but think clinicians will be confused by this message from a respected organisation.’    

Consultant physician in infectious diseases and internal medicine Dr Alastair Miller said that while he found the NICE guidance to be ‘unfortunate,’ he appreciated the fact that medics could still offer tailored exercise programs.

‘It is unfortunate that so much emphasis is given to working “within current energy limits” rather than a gentle and controlled pushing of those limits,’ he said.

“It is to be appreciated that clinics will still have the ability to provide appropriate personalised exercise and activity programs for patients who feel it is appropriate. 

One patient’s story about the impact of GET 

Olivia Horne (21 years old) was placed on the exercise regimen while she was still in hospital for ME.

She says: ‘When I was admitted, I was told if I was sleeping during the day it was a sign of depression, so it wasn’t allowed.’

Instead, Olivia, a weak patient who had entered the hospital in a wheelchair was told to walk around the ward and with a group of other patients outside the hospital.

‘The nurses were relentless,’ she said. ‘They completely disregarded the pain that I was in.

‘They acted as though all I needed was a bit of motivation and I would get better.’

But Olivia did not get better. Instead, her symptoms got worse.

‘My body didn’t have time to recover from the walking. My legs were constantly in pain, I felt so weak afterwards I couldn’t even eat. I blame the exercise for the fact that I spent the next six months unable to get out of bed.’

Olivia’s symptoms improved gradually, over time, although she can’t explain why, and is now studying at university.

She still suffers fatigue, leg pains and palpitations, but thinks graded exercise therapy shouldn’t be offered. ‘It feels wrong to call it a treatment,’ she added.