Hope 4 ME & FibroNorthern Ireland

Today:

Our Speaker:

Professor James C Coyne PhD

“The scandal of the £5mUK PACE trial for ME: What can be done?”

Twitter: #PACEni

Video recording sponsored by Irish ME Trust

Events: 7th February Patient Event Belfast Castle 3-5pm9th February Health Decision-makers at Stormont

Hope 4 ME & FibroNorthern Ireland

All committee members are patients

We rely heavily on ourhealthy helpers.

The group was set up by Joan McParland

Her enthusiasm and commitment to the needs of patients is phenomenal . . .

Joan introducing Prof James Coyne at Belfast Castle on Sunday 7th February 2016

What is ME?

Myalgic Encephalomyelitisis recognised as a neurological disorder by the World Health Organisation (section G 93.3 of ICD10)

What is ME?

Main Symptoms:• Post Exertional Amplification of all

Symptoms – a delayed reaction to exertion is possibly the defining feature of ME

• Intractable fatigue of 6 months or more• Unrefreshing sleep, pain, and memory

issues

How Severe can ME be?

• MildStill working but sleeping all week end. No social life.• Moderate

Unable to work, but self caring at home.• Severe

Housebound and bedbound. Need help with all but most basic activities of daily life.• Very Severe

Completely bedbound & helpless. Light and sound intolerant.

What treatment does the NHS offer?

• Graded Exercise Therapy (GET) &• Cognitive Behaviour Therapy (CBT)

Both therapies are based on the biopsychosocial premise that ME patients have false illness beliefs

Hope 4 ME & FibroNorthern Ireland

The PACE trial cost £5 millionIt has been used to promote:

Graded Exercise Therapy and Cognitive Behaviour Therapy as treatments for ME

Patients do not agree!

An ME Association Survey shows:

74% of patients who have done GET report worsening symptoms! ME Association Survey: http://www.meassociation.org.uk/2015/05/23959/

PACE trial is scientifically flawed

Problems include:•Author conflicts of interest•Altered recovery criteria• Subjective outcomes• Statistical problems

and more

PACE trial is scientifically flawed

Also:PACE authors refuse to release their supporting data

NICE Guidelines for MEare inadequate!

Yet they remain on the “static list”

The Situation in N.Ireland

There are an estimated 7000 ME patients in Northern Ireland for whom there is no NHS specialist consultant physician.

Our GP survey shows:• diagnosis uncertainty amongst GPs• a need for a consultant for diagnosis

Training of new GPs•ME is not specifically covered

The Situation in N.Ireland

The Situation in N.Ireland

Hope 4 ME & Fibro NI are actively campaigning for a dedicated consultant physician led clinic for ME based on sound biomedical principles.

Hope 4 ME & FibroNorthern Ireland

In summary:PACE trial unscientificGET & CBT cause harm

NICE guidelines need review

Serious funding for real biomedical research is

urgently neededThank you for your interest today