I thank my constituents who have written to me to share their experiences, both as patients and parents. I also have a close friend who has battled this condition for 18 years. I know that many sufferers find it dismissive to refer to the condition as chronic fatigue syndrome because it sounds so trivial. At very least it should be chronic exhaustion syndrome, because that is what it is—absolute exhaustion. ME affects a quarter of a million people, 10% of whom are children and young people. A quarter of those are so severely affected that they are either housebound or bedbound.
The basic problem is that we do not know the cause of ME. It often seems to start post-viral; I, no doubt like many others here, have had post-viral syndrome, and it can often take weeks or even months to recover from. What is it about ME sufferers that makes the condition become long-term and chronic? That is the crux of the matter. We need biomedical research to consider whether it is an autoimmune cause, a genetic weakness, or a neurological problem. Is it metabolic? There is some interest in whether the mitochondria—the little power packs in the cells—are at fault. Such things need to be considered, and at the moment the only real funding of research is by ME charities.
The UK has not funded any biomedical research since 2012. That makes diagnosis problematic because it is based only on symptoms. We do not have a test because we do not know the cause or what to test for. Naturally enough, I will stick up for doctors and say, “That makes it kinda hard for them.” It becomes a diagnosis of elimination—when they do not find the other obvious causes, the symptoms are put down to ME.
Following on from that, there is simply no treatment. There is no cure because we do not know the cause. There are no drugs coming down the pipeline, no procedures. That means that we are dependent purely on management and support. As has been said, CBT is not a cure or a treatment. It may help some people cope with the depression and mental health issues that come from being so disabled, but it does not tackle the underlying ME.
As has been said, graded exercise can actually make things much worse. The suggestion that it might work was based, as has been said, on the flawed PACE trial published in The Lancet in 2011. I think it is quite
sinister that some of the funding for that trial was from the Department for Work and Pensions; that added to the implication of malingering, despite the fact that 90% of sufferers were working before they were diagnosed. That figure drops to 35% afterwards. It was an unblinded study, because it is not possible to hide from people what treatment they are getting. That means that all other aspects should be very strict, yet CBT and GET were promoted to patients as something that would help them. The researchers did not analyse their planned outcomes, which is critical in research. They lowered their defined targets simply because the treatment was failing, and used subjective rather than objective measures. Re-analysis of the PACE study has shown minimal benefit to these treatments; indeed, as my hon. Friend the Member for Glasgow North West (Carol Monaghan) said, some people got worse but still had their treatment classified as a success.
The only thing that has been shown to make a difference to some patients is what is called adaptive pacing—listening to one’s body, balancing activity with rest, and planning one’s day, or one’s weekend activities with the family.
The United States Centres for Disease Control and Prevention removed the recommendations of CBT and GET, but as has been said, they have still been NICE recommendations since 2007, and although they are under review, with the results due to come out in 2020—too far away—the NICE website still promotes CBT and GET. There should be a red warning, saying, “Don’t follow this. We are looking into it.”
Most of all, we need research to define the underlying cause of this condition, and to develop treatments. We have heard about the £300,000 of funding that the Scottish Government have given to Action for ME to develop peer support projects, but research needs to be on a bigger scale, considering the £3.3 billion economic impact. The US has moved to biomedical research and, as has been said, the UK is still totally focused on psychological research.
In the meantime, until we have answers, the DWP needs to recognise the impact and the disability of ME. GPs, NHS staff and care staff need to provide support, including emotional support, to help manage the condition, and all of us need to recognise the impact of the condition and reduce the stigma that simply adds insult to injury.
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