ME: Treatment and Research

Robert Courts Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

ME receives practically no biomedical research funding, which I will come back to. Because of the misunderstanding of the condition, the treatments available are often more damaging to the person than no treatment at all.

Merryn Crofts was just 15 when she experienced hives and swelling in her joints after a family holiday in Majorca. Tests revealed that she had contracted glandular fever. Despite dozens of medical appointments, Merryn’s condition deteriorated; she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound. She was eventually diagnosed with ME. This once bright young woman was forced to wear an eye mask and suffered from severe migraines, brain fog, slurred speech and persistent infections. Stomach problems and difficulties swallowing meant that her weight plummeted to just 5½ stone. Merryn was eventually fitted with an intravenous nutrition line but was given a terminal diagnosis in 2016. Merryn wrote in her blog:

“Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”

Merryn died on 23 May 2017, just days after her 21st birthday.

Why is the treatment for people with ME so poor? The lack of understanding shown by some healthcare professionals of a person’s suffering is one of the greatest frustrations to the ME community. Much of that stemmed from the publication of the controversial PACE trial. The treatments investigated in the PACE trial were based on the hypothesis that ME patients harbour “unhelpful” convictions about having a disease and that the continuation of their symptoms is the result of deconditioning.

The PACE trial compared different treatments, including cognitive behaviour therapy—CBT—and graded exercise therapy, or GET. The results that were published in The Lancet in 2011 seemed to show that GET and CBT could bring about some improvements in a person with ME. Although that may seem positive, if we dig a little deeper we discover that the parameters for recovery were changed midway through the trial and the results depended on self-reporting. Patients have told me that they were pressurised to describe improvements they really did not feel. One participant in the original trial said:

“After repeatedly being asked how severe...my symptoms were. ..I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough.”

[Robert Courts (Witney) (Con)]

The hon. Lady is making a powerful speech and is drawing attention to this much misunderstood but very serious condition. My constituents will be grateful to her for that. She made some powerful comments on the PACE trial; will she comment on the way that NICE guidelines have an impact on how the condition is viewed?

[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.