ME: Treatment and Research

Debate between Carol Monaghan and Liz McInnes

Thursday 21st June 2018 Westminster Hall

[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.

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

I am grateful to the hon. Lady for mentioning my constituent, Merryn Crofts, whom I will speak about later. Merryn’s mum, Clare, said to me that Merryn was put on GET and that it made her condition worse. Everything that the hon. Lady says is backed up by the testimony that Clare gave me—I just wanted to share that with her.

[Carol Monaghan]

I thank the hon. Lady for her intervention. Merryn’s is not an isolated case, and neither are those of my constituents—I am sure that Members present have all heard constituents describe the same situation.

The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions. Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work. PACE is unique in UK medical history, in that it was part-funded by the DWP. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

I will leave hon. Members to make up their own minds about that.

Healthcare professionals worldwide are starting to take note. The US Centres for Disease Control and Prevention and the Health Council of the Netherlands have both abandoned GET. If those countries acknowledge the flaws of GET, why are ME sufferers in the UK having to fight so hard for similar acknowledgement? The ME community hopes that GET will not feature in the NICE guidelines for ME treatment after they are revised.

Some argue that CBT is provided as a treatment for many illnesses, including heart disease and cancer, and that ME patients’ rejection of it is irrational. The key difference is that cancer patients receive biomedical treatment in addition to CBT, rather than having CBT to the exclusion of biomedical interventions. Biomedical treatment for ME is woefully lacking. There are reports from the US that certain antiviral drugs improve the condition, but without properly funded research to identify biomarkers for ME, we do not have the answers.

Diagnosis is currently based on a patient presenting with known symptoms. Although there is no biomarker for ME, that does not mean there is no biomedical test for it. The two-day cardiopulmonary exercise test, which can objectively document the effects of exercise, could be used as a diagnostic tool. In simple terms, people with ME perform adequately or even well on the first day but have reduced heart and lung function on the second. That relates to the point made by the hon. Member for Alyn and Deeside (Mark Tami) about the DWP and the fact that someone’s presentation may be good one day but not the next.

That protocol involves two identical tests separated by 24 hours, the collection of gas exchange data and the use of an exercise bike to measure work output accurately. That type of testing reveals a significant performance decrease on day two among people with ME, in terms of their workload and the volume of oxygen they consume before and during exercise. Results from a single test may be interpreted as deconditioning, which may lead to harmful exercise being prescribed. However, the objective measurements of the two-day test remove the issues of self-reporting bias and the question of effort—in other words, the results cannot be faked.

Those results support the strong and consistent patient evidence of the harm that can occur as a result of inappropriate exercise programmes. However, there are moves afoot to categorise ME as a psychological condition. NHS guidelines on medically unexplained symptoms class ME as such a condition. The Royal College of Psychiatrists states:

“Medically unexplained symptoms are ‘persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’”