ME: Treatment and Research

Debate between Carol Monaghan and Jeremy Quin

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

I will come on to interactions with the Department for Work and Pensions. ME patients report that energy levels vary. Sometimes, going to such an appointment can wipe out someone for many weeks afterwards. If that person were to attend the appointment the following day, their condition would be very different.

[Jeremy Quin (Horsham) (Con)]

I am delighted that the hon. Lady has secured this debate. She referred to the seriousness of ME and how many people are affected. Does she agree that for it to be taken seriously and proportionately to its scale and impact, that needs to be reflected in every area, including the amount of medical research that is devoted to ME? It is certainly a point that my constituents are concerned should be raised in this debate.

[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.”