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Hope for 250,000 MS patients as Sajid Javid promises a radical new approach to tackling the condition

Hope for 250,000 MS patients as Sajid Javid promises radical new approach to tackle ‘incredibly disabling condition’

  • He said he was committed to better care and support for people living with ME.
  • The condition affects up to 250,000 people in the UK and 17 million worldwide.
  • Javid is the first senior government minister to speak out about the condition.

Sajid Javid has promised a radical new approach to tackle the “incredibly disabling condition” of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Speaking to parliament on World MS Day yesterday, the health and social care secretary said he was “committed to better care and support for people living with MS and their families.”

The condition affects up to 250,000 people in the UK and 17 million worldwide.

Javid, who is the first senior government minister to speak out on the condition, will lead a plan for new research and better patient care.

He will work with his department’s chief science adviser, Professor Lucy Chappell, and is already in contact with the Scottish government, according to The times.

Sajid Javid has promised a radical new approach to tackle the 'incredibly disabling condition' of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Sajid Javid has promised a radical new approach to tackle the ‘incredibly disabling condition’ of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

He said: ‘At the heart of the delivery plan there will be two basic principles; First, that we don’t know enough about ME/CFS, which needs to change if we want to improve experiences and outcomes. Second, we must trust and listen to those with lived experience of ME/CFS.’

MS is a poorly understood, long-term condition that causes a variety of symptoms. Its main symptom is extreme tiredness and general malaise.

There is no diagnostic test for MS, so doctors decide if a patient has the condition based on their symptoms and rule out other conditions.

In its current form, the treatments offered to patients for MS are cognitive behavioral therapy (CBT), a talk therapy used for anxiety and depression, and a structured exercise program called graded exercise therapy (GET). ).

Health Secretary Sajid Javid plays a game of pool during a visit to the African Caribbean Community Initiative (ACCI) in Wolverhampton, to focus on supporting black community mental health and links to Awareness Week on Mental Health.

Health Secretary Sajid Javid plays a game of pool during a visit to the African Caribbean Community Initiative (ACCI) in Wolverhampton, to focus on supporting black community mental health and links to Awareness Week on Mental Health.

Javid continued: ‘ME/CFS affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms that make it difficult to participate in daily activities, enjoy family or social life, access services, and participate in work or education, especially for the estimated 25 percent of people who have a serious or very serious illness. severe symptoms.

‘The government recognized that EM is an under-researched area and is committed to supporting research funders and the academic community in responding to this independent report.

“It is so important that the voice of those with lived experience of EM and those who represent them be at the center of all future work to improve the lives of people living with this debilitating disease.”

Last year, the NHS indefinitely postponed long-awaited NHS guidelines on how to treat chronic fatigue syndrome.

It is estimated that around 250,000 people in the UK and 17 million worldwide have MS.  People with the condition often experience extreme tiredness and general malaise

It is estimated that around 250,000 people in the UK and 17 million worldwide have MS. People with the condition often experience extreme tiredness and general malaise

Health watchdogs stopped issuing advice due to disagreements over what treatment recommendations they planned to make.

The National Institute for Health and Care Excellence said it was unable to produce guidelines on ME/CFS that were “widely supported.”

The final advice is understood to have urged doctors to stop offering patients graded exercise therapy (GET).

The controversial therapy, which the charities say suggests it is psychological, involves doing more and more exercise to build up a tolerance for physical activity.

Health chiefs also advised against the routine use of cognitive behavioral therapy (CBT), commonly used to treat anxiety and depression.

What is MS (myalgic encephalomyelitis)?

MS is a poorly understood, long-term condition that causes a variety 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 general malaise.

Some people suffer from trouble sleeping, muscle and joint pain, headaches, sore throats, and trouble thinking.

And they may also experience flu-like symptoms, feel dizzy or lightheaded, and have a fast or irregular heartbeat.

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

People with MS can have big differences in their symptoms and how long they last.

It is estimated that around 250,000 people in the UK and 17 million worldwide have the condition.

There is no diagnostic test for MS, so doctors decide if a patient has the condition based on their symptoms and rule out other conditions.

In its current form, the treatments offered to patients for MS are cognitive behavioral therapy (CBT), a talk therapy used for anxiety and depression, and a structured exercise program 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 about the disease made it impossible for NICE to reach a consensus on what treatments it should tell doctors to offer.

Source: National Health Service Y action for me

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