PACE Trial: People with ME Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Alison Thewliss
Main Page: Alison Thewliss (Scottish National Party - Glasgow Central)Department Debates - View all Alison Thewliss's debates with the Department of Health and Social Care
(6 years, 2 months ago)
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Carol Monaghan
Many parents who try to home school their children also face local authority intervention, trying to get the children back to school. We must listen to patients.
This disease is very easy to ignore. All too often, those living with ME are housebound, and suffer from what they refer to as “brain fog”, which makes it difficult to mount an organised campaign. That means that much about ME remains unknown. There is some evidence that it could be grouped with auto-immune conditions such as multiple sclerosis and rheumatoid arthritis. Some people have reported that certain anti-viral drugs improve their condition, but without properly conducted scientific research, we do not have the answers. Ultimately, the impact of the PACE trial on those with ME has been devastating.
Alison Thewliss
My hon. Friend makes a good case. My constituent Carol Ann McGregor has had ME since 1996 and has been bedbound for seven years. She says that she has
“lost my life, health, husband, my career and my home”.
Does my hon. Friend agree with my long-term family friend Maureen Bivard that the cover-up, and the way in which the PACE trial was carried out, amounts to a miscarriage of justice for patients?
Carol Monaghan
I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.