World ME Day

Andrew Gwynne Excerpts

Wednesday 1st May 2024 Westminster Hall

[Andrew Gwynne (Denton and Reddish) (Lab)]

It is always a pleasure to serve your chairmanship, Dame Siobhain. I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) on securing this important debate and on the work he not only did as Health Secretary, but continues to do as a Member of Parliament on ME, which we know is a profoundly debilitating and chronic condition that affects various systems across the body. Figures estimate that at least 250,000 people in the UK live with it. However, it is estimated that upwards of 1.3 million people live with ME or ME-like symptoms following a covid-19 infection. As we have heard, women are five times more likely to develop ME than men, and they experience more symptoms than men.

Many parallels have been drawn between ME and long covid, given that research has indicated that at least half of those living with long covid have symptoms that directly mirror those of ME. As someone who continues to suffer from the effects of long covid, those symptoms are all too familiar to me: a draining fatigue that never seems to go away; constantly disturbed sleep and an endless feeling of exhaustion; and a debilitating brain fog that can strike at the most inconvenient of moments.

I just want to place on the record that I have managed to control my long covid for the best part of two years, but this week has been a very bad week for me; I was in bed for all of today, and I have only come in to give this speech. The reason that there is a bundle of tissues here is because the sweats just hit me while walking into work. I do understand—I have lived with the experience of symptoms similar to ME—and I agree with my right hon. Friend the Member for Hayes and Harlington (John McDonnell) about the impact it has on people in work, because we do not know which days will be our good days and our bad days, and sadly we are judged against our bad days. That is true.

We need to educate employers about ME and long covid so that reasonable adjustments can be made, and about changes to the welfare system. When I was on my very worst of days, very early on after I contracted covid-19, I would have been signed off work if I had turned up for a work capability assessment, because it was obvious to all. On my best days, though, people would think, “There’s nothing wrong with him,” so if I had the misfortune of having a work capability assessment on one of my better days, I would then be put into work when I was not capable. We must attend to those issues across Government.

We know that ME costs the UK economy about £3.3 billion a year, and that number is growing. We need far better understanding of this debilitating condition and its impact on the day-to-day lives of too many people. That is why Labour is committed to putting Britain at the front of the queue for treatments by boosting clinical trial activity in the NHS. We will speed up recruitment to trials and give more people the chance to participate. We will link up clinical trial registries to create national standing registries, and harness the power of the NHS app to invite eligible participants to take part in research studies for which they are eligible. We also need to rebuild the system so that it recognises the impact of post-viral conditions like ME and equips people with the tools needed to work with it.

We need to refocus our services away from hospital settings to be rooted in the community, so that patients can access care when and where they need it, and we need to bolster a workforce that can better understand ME so that people can get timely care. Above all, we need to get that delivery plan published sooner rather than later. I implore the Minister for World ME Day: he has cross-party support, so let’s get it published ASAP.