Appropriate ME Treatment

Liz McInnes Excerpts

Thursday 24th January 2019 Commons Chamber

[Liz McInnes (Heywood and Middleton) (Lab)]

I thank the hon. Member for Glasgow North West (Carol Monaghan) for securing this important debate. I spoke in the debate last year about Merryn Crofts, who is one of just two people in the UK to have myalgic encephalomyelitis recorded as the cause of death. She was my constituent and lived in Norden, in the Rochdale area of my constituency.

Merryn suffered so badly from pain that she could not get out of bed. Her GP had worked in a hospice for 10 years, looking after cancer patients, and said that in that job, she could not always take away pain but could manage it. The GP said that Merryn’s pain was unmanageable. Although Merryn was on diamorphine and ketamine, she was still in pain. Any kind of stimulus—even just a nurse walking into the room—was an exertion for Merryn.

Merryn’s mother was very critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it. She tells me that Merryn thought she could push through the condition and keep going, although her family wanted her to slow down. Sadly, it was only when the family contacted a private medical practitioner that Merryn was given the advice to slow down and rest. The specific advice given was, “Whatever you feel you can do, only do 50% of it.” Merryn’s mother feels strongly that, had Merryn been given that advice when her condition started, she might not have gone on to develop severe ME, and she strongly urges that the NICE guidelines be reviewed. Merryn’s mother told me:

“If the PACE trial were a drug, it would have been banned by now.”

I have also been contacted by other constituents who have urged me to take part in this debate. One of them is Rebecca Pritchard, who points out that it would not be difficult to increase funding for research, given that very little funding for ME has been given so far. She highlights the work done by Invest in ME Research, based in Norwich, and points out the huge funds that have been crowdfunded by patients and their families.