World ME Day

Fleur Anderson Excerpts

Wednesday 1st May 2024 Westminster Hall

[Fleur Anderson (Putney) (Lab)]

It is an honour to serve under your chairship, Dame Siobhain, and to be speaking at this important time, ahead of World ME Day on 12 May. I congratulate and thank the right hon. Member for Bromsgrove (Sir Sajid Javid) for securing the debate and for continuing to champion the cause, which is so needed. I also thank Action for ME for its research and campaigning, and for providing visibility for so many people who have ME who are bedbound and housebound, and cannot speak for themselves. That is why I have been championing this condition, because so many of my constituents have been in touch with me.

To be honest, when I was pregnant, I had very severe morning sickness. It was not morning sickness: it meant that I was bedbound for many months. I got an inkling, I think, of what is suffered by people who have ME. However, they suffer for so long with such little hope because, as the right hon. Member said, there is no treatment and no cure. To raise those issues, and to talk about the research and treatment that are needed, and the understanding that is needed in workplaces, schools and the healthcare system, is important. This debate will mark a huge step forward for that.

ME is a chronic illness that affects multiple body systems and leaves those suffering unable to take part in everyday activities. In the UK, we know that at least 250,00 people suffer from ME. However, that is an outdated statistic that has not been updated for over a decade. The real figure is likely to be far higher. An estimated 1.3 million people live with ME or ME-like symptoms, and 50% of people with long covid have symptoms that mirror ME. One in four of those is housebound. Women are five times more likely to develop ME, and to have more symptoms from their ME, than men. I think that might be at the heart of why it has been such an underfunded and neglected disease, because it is predominantly women who are suffering more than men.

People with ME suffer disproportionately high levels of stigma and lack of understanding compared with other major chronic illnesses. That ignorance makes it more of a challenge to address and treat, and they suffer misunderstandings in education, work and healthcare. Many constituents have shared such stories with me. They have told me stories about personal independence payment assessments as well, which do not meet the needs of a fluctuating condition, and do not take account of the condition in the timings and the way that people are assessed, leading to them receiving less support from the state.

Over the last 10 years, only £8.05 million has been spent on ME research. If that had been equitable to other illnesses, ME would have received over £10 million or more. Without urgent research, those estimated 250,000 people in the UK living with the illness—and many more—will continue to feel unseen and left behind. That inaction comes at a significant cost. Without research, people living with ME will continue to suffer from a range of debilitating symptoms that push them towards the edge of society. The links with long covid offer hope for research, and should be entirely embraced. I hope that it will be embraced in the plan that we hope will be published soon and that the Minister will tell us about in his speech.

The Government claim that they want to get people back to work, yet they continue to underfund vital investment in ME that could help thousands of people to rejoin the workforce. While the Government continue to dither and delay on that plan, others are stepping up. Action for ME is co-leading a pioneering research project into ME to uncover its genetic causes. It is called DecodeME and is funded by the Medical Research Council and the National Institute for Health Research. Understanding how ME affects people is the first step towards developing effective treatments.

Although I and others welcomed the Government’s announcement of the cross-Government ME delivery plan, which was announced by the right hon. Member for Bromsgrove on ME Day in May 2022, the publication of the final plan, as has been outlined, has been delayed again and again, but it is badly needed by sufferers across the country. My constituents are feeling the direct implications of the lack of funding for research. I especially want to highlight the inadequacy of secondary care.

Zoe, one of my constituents, wrote:

“I’m lucky that my GP is great and recognised the symptoms early and found me a good clinic to go to. But ongoing support in secondary care is non-existent. Compared to others, I was…lucky to have what I got, but it was six appointments with a consultant and his team and that’s it. No ongoing care, no ongoing support. Because of the complex nature of the illness I’ve had to be referred to multiple secondary care clinics to manage all my ongoing symptoms. I go to St George’s, Bart’s, Kings, UCL and the Royal Free, at best they’re well meaning, but not well educated about ME, at worst I experience a huge amount of medical gas lighting or complete indifference, disbelief or disinterest in the ME. (I had such a poor experience with secondary care this week that the stress of dealing with the doctor/clinic has further exacerbated the flare of symptoms.) It’s a lot to expect a person with ME to manage.”

Just yesterday, I was walking through Putney and Donna in my constituency came up to me to tell me about the hugely life-limiting impact that ME has had on her. She was in a wheelchair and said that that trip out to get a prescription means that she will not be able to go out again for the next two weeks. She said she is constantly misunderstood and neglected in the health system.

Recently, the cases of Carla, Milly and Karen—all young women in hospital with severe ME and struggling to access the care they need, the appropriate feeding, tests and medical care—paint a picture of a broken system. They have been treated as psychological cases, not medical and physical. Carla, Milly and Karen have been let down time and again. I urge the Government not to permit the growing cases of ME across the country to morph into a health crisis for which there is no cure.

I will end with a call for five actions: first, ending the stigma and taboo in healthcare situations, work and schools; secondly, the full implementation of NICE’s 2021 guidelines on ME and chronic fatigue syndrome, including diagnosis across the country; thirdly, funding research into severe ME and joining that up with research into long covid; fourthly, looking into the situation in care for Carla, Milly and Karen and poor hospital care for all other sufferers of ME; and fifthly, publishing, funding and implementing the cross-departmental ME delivery plan before the general election.

I hope the Minister has written all of that down. I hope to hear about it later, and I hope that this debate will mark a step change in the understanding of people with ME and hope for the future.