Long-awaited NHS guidelines on how to treat chronic fatigue syndrome have been postponed indefinitely.
Health watchdogs halted the publication of advice because of disagreements about treatment recommendations they were planning to make.
The National Institute for Health and Care Excellence said it was unable to produce guidelines on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) which were ‘supported by all’.
It is understood the final advice would have urged doctors to stop offering patients graded exercise therapy (GET).
The controversial therapy — which charities say suggest it’s psychological — involves doing increasingly more exercise to build-up a tolerance for carrying out physical activity.
Health chiefs were also set to advise against the routine use of cognitive behavioural therapy (CBT) — commonly used to treat anxiety and depression.
A NICE spokesperson claimed the delay was prompted by ‘a number of professional groups’ who were unwilling to support the advice.
Campaign group Action for M.E. said it was ‘baffled’ by the delay to the guidelines — which were last updated in 2007.
It warned the move will hold-off ‘desperately needed improvements to patient care’, the charity said.
Meanwhile, ME Action UK accused watchdogs of ‘capitulating to the vested interests of those who support graded exercise therapy’.
And charities say these treatments are ‘driven by outdated views’ that are ‘no longer supported by science’.
But some neurologists and medics day without the two treatments ‘there is nothing’ for ME sufferers.
Around 250,000 people in the UK and 17million around the world are estimated to have ME. People who have the condition usually suffer from extreme tiredness and feeling generally unwell
What is ME (myalgic encephalomyelitis)?
ME is a long-term and poorly understood condition that causes a range of symptoms.
It is grouped together with chronic fatigue syndrome (CFS) and is also known as CFS/ME.
Its main symptom is extreme tiredness and feeling generally unwell.
Some people suffer from sleep problems, muscle and joint pain, headaches, a sore throat and problems thinking.
And they might also experience flu-like symptoms, feeling dizzy or stick and having a fast or 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.
People with ME can have huge differences in their symptoms and how long they last.
Around 250,000 people in the UK and 17million around the world are estimated to have the condition.
There is no diagnostic test for ME, so doctors decide whether a patient has the condition based on their symptoms and ruling out other conditions.
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.
But strong opinions around the illness made it impossible for NICE to reach a consensus on the treatments it should tell doctors to offer.
Source: NHS and Action for M.E.
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ME/CFS causes a range of symptoms but the most common are extreme tiredness and generally feeling unwell.
Around 250,000 people in the UK and 17million around the world are estimated to have the condition.
There is no ‘one size fits all’ approach to managing the condition and NHS guidelines recommend CBT, GET, activity management and medicine to control symptoms.
NICE started working on new guidelines in January 2018.
It published a draft version in November that suggested exercise programmes, such as (GET), would no longer be recommended to treat ME/CFS.
A final version of the guidelines, cementing that these treatments should no longer be used, was due to be released today.
NICE said: ‘Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps.
‘We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.’
The body said it used its ‘usual rigorous methodology and process’ in developing the guidance, which ‘brought together’ the available evidence and the real, lived experience and testimony of people with ME/CFS’.
It added: ‘But despite the best efforts of the committee, we have not been able to produce a guideline that is supported by all.’
NICE added: ‘Unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
‘In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.’
A spokesperson for the Royal College of Paediatrics and Child Health said they are ‘very pleased’ the guidelines have not been released.
It added it will work with NICE ‘to ensure future guidance is of benefit to children, young people and those who manage their care’.
Sian Leary, spokesperson for ME Action UK, said: ‘At a time when NICE needs to show strength, and to back their own independent processes, they have instead shown a depressing level of weakness.
‘They are capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.’
Urging NICE to reconsider, she added the organisation, which is made up of patients and carers working for more recognition and research for ME, is ‘shocked to hear the actions of the medical establishment have led to the delay’.
Action for M.E. claimed the guidelines would bring clinical practice ‘up to date with current scientific knowledge’.
It said: ‘Delays will hold-off still further the desperately needed improvements to patient care.
‘Many medical professionals, researchers and patient representatives have spent three years diligently reviewing and assessing the evidence.
‘The document has been approved by the committee and should be published.
‘The guideline removes support for therapies driven by outdated views regarding treatment for M.E. which are no longer supported by the science.
‘We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.
‘No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.’
Sonya Chowdhury, chief executive at Action for M.E., says: ‘We are in the dark about this.
‘The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practise. Nobody should be able to undermine that.’
Dr Nina Muirhead, head of medical education at Doctors for ME, said: ‘Doctors are in desperate need of improved support in how to care for patients, delaying that prolongs unscientific approaches which have no place in our medical community.’
But Dr Alastair Miller, a consultant physician in acute medicine and infectious disease at Cumberland Infirmary, who was formerly principal medical adviser for Action for M.E., told the Guardian : ‘The draft guidelines were predicted to stop the use of GET and limit the use of CBT which have served most chronic fatigue syndrome/ME clinicians and patients well for many years and were endorsed by the NICE guidelines in 2007.
‘Most NHS clinicians use GET and CBT and have done so for a long time. Importantly, without CBT and GET, there is nothing.
‘No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline.
‘If the professional bodies that represent those who care for these individuals were not prepared to support the guideline, this may have made NICE think again.
‘It is difficult to say where we go from here. There are some amongst the charities and patient groups that are utterly opposed to CBT and GET, and so compromise and consensus may be difficult to achieve.’
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