ME: Treatment and Research

Debate between Carol Monaghan and Andrew Selous

Thursday 21st June 2018 Westminster Hall

[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.’”

[Andrew Selous (South West Bedfordshire) (Con)]

I just want to pick up on the hon. Lady’s point about ME being classified as a psychological condition. Does she agree that that is a little curious, given that the World Health Organisation states in its “International Classification of Diseases” that ME is a neurological condition? My understanding is that the United Kingdom is legally obliged to follow that classification.

[Carol Monaghan]

I thank the hon. Gentleman for his intervention. Worryingly, the WHO is looking at reclassifying ME, too—we should all be aware of that—and its current classification of ME as a neurological condition has been ignored in terms of the treatment we have offered to patients here in the UK.

The Royal College of Psychiatrists goes on to state that symptoms are

“not due to a physical illness in the body. However, they can be explained, but to do this, we need to think about causes that are not just physical.”

Under the new “Improving Access to Psychological Therapies” guidance for people with long-term conditions, patients who present with ME are classified as people with medically unexplained symptoms who should undergo CBT therapy, in conjunction with other treatments—in other words, graded exercise therapy. However, as ME is classified as a psychological condition, patients risk getting trapped in the psychological care pathway.

Oral Answers to Questions

Debate between Carol Monaghan and Andrew Selous

Tuesday 26th January 2016 Commons Chamber

[Andrew Selous]

My hon. Friend is absolutely right, and I pay tribute to his long interest and great expertise in this particular issue. He will probably know that local commissioning groups in England and local health boards in Wales are responsible for services in the community. NHS healthcare staff in prisons are responsible there. It is their job to make sure that services provided in the prison are followed through in the community. We go to great efforts to make sure that happens.

[Carol Monaghan (Glasgow North West) (SNP)]

T7. Will the Secretary of State meet his colleague the Immigration Minister to explain that the Minister’s Bill, which would allow migrant families to be evicted without even a court order, is contrary to the rule of law and the right to a fair hearing, and must be urgently reconsidered?