ME: Treatment and Research Debate
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Patrick Grady
Main Page: Patrick Grady (Scottish National Party - Glasgow North)Department Debates - View all Patrick Grady's debates with the Department of Health and Social Care
ME: Treatment and Research
Patrick Grady Excerpts(6 years, 6 months ago)
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Carol Monaghan
I will come on to the NICE guidelines. They are under review, and all politicians can help with that. I have already written to NICE about the issue and I will ask the Minister about that later.
We now know that 13% of the participants in the PACE trial qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures—self-reported physical function—even though they were classified on the same measure as disabled enough to enter the study. That anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claim that patients recovered or got back to normal. The overlap in entry and outcome criteria is only one of the trial’s unacceptable features.
For patients, the impact of PACE is severe. The recommendation of GET as a treatment for ME has provoked a backlash from patient groups, who report that many people with ME end up more severely disabled after a course of GET than before. I have spoken to people living with ME who have tried to do GET because they are so desperate to get better and have ended up in a wheelchair or bedbound as a result of this programme.
Patrick Grady (Glasgow North) (SNP)
I congratulate my hon. Friend on securing the debate. The turnout shows the significance of this issue to all our constituents. Her point about GET is important. It seems perverse that people should be forced to take a course of treatment that patently makes their condition worse. Does she agree that that must be reviewed?
Carol Monaghan
Indeed. Many people have written to me about their experience of GET, but some of the most upsetting examples are of children who were forced through a programme of GET and ended up with life-changing disabilities as a result.