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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