NICE guideline pause a 'worry' for ME patients

Close up 60s female awaken lying on pillow in bed at home cover face with hands feels exhausted lack

Nice has paused its guidelines which would have seen changes to diagnosis and treatment of ME and chronic fatigue. - Credit: Getty Images/iStockphoto

ME patients have spoken of their worries after new guidance about how the condition would be diagnosed and treated was paused.  

On Tuesday, the National Institute for Health and Care Excellence (NICE) announced it was halting its updated guidelines on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy) or chronic fatigue syndrome - also called ME and CFS. 

The guidelines were due to reverse recommendations made in 2007 on graded exercise therapy (GET) and cognitive behavioural therapy (CBT), which have proven divisive treatments.

Charities and patient groups have fought for greater recognition as a medical illness rather than a psychological problem and were prepared to welcome the guidance. 

It has left patients across Norfolk and Suffolk, of which there could be up to 8,000, worried and frustrated.

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A Norwich patient, who did not wish to be named, was in her early 40s when she was diagnosed five years ago and is now housebound.

She called the decision “very disturbing” and while she said the guidelines were not the strongest it gave clear rejection of GET and CBT treatments. 

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She said: "It took a long time to be diagnosed and I inadvertently permanently progressed my condition. Now I am housebound, I have lost my career, my life, my husband is now my carer, I have destroyed his life too. 

"I had a career, I had a new job that I liked, I was living the life. I was really outdoorsy country girl. 

"I know pensioners who say our lives have been lost to this. I feel for young people. If NICE gives in to the pressure it's going to be another lost generation."

She said there could be further implications in future for long Covid patients, who may show chronic illness symptoms similar to ME. 

The Norwich resident said: "This could be damaging for them, long Covid people have seen how ME people have been treated and they do not want anything to do with us, they are very concerned about being treated that way." 

NICE said it needed to take time to consider the next steps, adding: "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. 

Angus Rodwell, 16, has been living with ME since he was eight.

Angus Rodwell, 16, has been living with ME since he was eight. - Credit: Tina Rodwell

The impact on young ME patients

Thinking, feeling, movement - the exertion of such actions has impacted ME sufferer Angus Rodwell since he was eight years old.  

The 16-year-old, from Stowupland, Suffolk, is now 90pc housebound and has received GET and CBT treatment.

As part of his ME he experiences post-exertional malaise (PEM) which impacts him around 48 hours after an activity, affecting him for days or even weeks.

Recently he achieved a pass in his maths GCSE and a 7 in English, when he managed to attend six lessons.  

Angus and Tina Rodwell

Angus Rodwell, 16, has been living with ME since he was eight, pictured with his mum Tina, who is an advocate for young people with ME. - Credit: Tina Rodwell

His mum Tina has written to NICE to challenge the decision on behalf of other young ME patients.

She said: “My fear is that they will stop all the hard work of those that truly know this illness and our young people will once again become threatened and left to suffer. 

"Young people continue to amaze me. Angus says he never likes to think about who he used to be, he’s not that anymore. He cannot think about the future, that's too scary. He lives in today hoping he won’t be too bad.  

“The guidelines would have given young people respect."

What is ME and CFS? 

The symptoms of (ME/CFS) can be linked to other illnesses which can lead to long diagnosis times for patients. 

It is characterised by pain and a long-term debilitating loss of energy. 

One in four sufferers are affected so severely they are unable to leave the house and, frequently, their bed.

NICE guidelines say this diagnosis can mean a person cannot do the things they used to do or gets worse after activity or gentle exercise, such as a short walk. 

NICE says patients should have in addition some further symptoms which can include insomnia, muscle and joint pain, headaches, brain fog, dizziness, fast or irregular heartbeats, and worsened symptoms after exercising or concentration. 

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