World ME Day

Caroline Nokes Excerpts

Wednesday 1st May 2024 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is a pleasure to see you in the Chair, Dame Siobhain. I congratulate my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) on his leadership on this issue. We know that he started the train of getting work done on ME when he was Health Secretary. Too often in this place, we move on from Departments and never speak of them again, but he has not. He has championed the cause of the sufferers of ME, and indeed their families, with real vigour.

It seems bizarre in this place to refer to long covid with a welcome message, but long covid has shone a spotlight back on ME. We know that it is a post-viral condition, but we do not know why. The number of sufferers of long covid has given us an opportunity to look again at ME. Hopefully, in this place some of us will begin to understand more and broaden our knowledge of the condition. My right hon. Friend taken a new approach, and my constituents certainly wish to extend their thanks to him for that.

I always say that I am blessed with constituents in Romsey and Southampton North who are not only articulate and willing to share their views with me, but in many instances are often experts as well. Professor Sir Stephen Holgate contacted me ahead of the debate to make the pertinent point that, for sufferers of ME, many of whom have been bedbound for years, surely I could spend an hour of my time raising their plight in this Chamber. I am certainly very pleased to do so. He highlighted, as did the hon. Member for Putney (Fleur Anderson), the well-established sex bias among sufferers of ME. Of the 17,000 sufferers recently surveyed, women made up 83.5% of the respondents. We know that they are five times more likely to suffer than their male counterparts.

I say to the Minister, very gently—an unusual stance for me—that we have to do more about the bias that exists in medical research and clinical trials. We have to stop the situation, which prevails to this day, where too often conditions suffered by women are portrayed as them being simply hysterical. ME is a serious condition. It is not all in the mind, as my constituents have been told on too many occasions. We need to ensure not only more investment into research to find the causes of ME and hopefully more effective treatments—and of course, the holy grail, a cure—but research focused on the women who need it.

I welcome the cross-Government delivery plan that was set in train by my right hon. Friend the Member for Bromsgrove, but we need to see it. We need to see not just the interim version but the final plan, and we need it to be delivered. We need it to be rolled out into every trust and integrated care board. We need it to be effective for our constituents, which brings me on to my next point: my constituent. I was contacted by a mother, Elaine. The point she made in her email was that she wants her voice and the voice of her daughter to be heard. Her daughter was a high achiever, training to be a dancer. She had already secured 5 A-levels when she was struck down with ME. The words that she used are heartbreaking. She has been stigmatised, gaslighted and ridiculed. As a result, she now avoids doctors. She avoids going to get the very help that she needs because she fears that her condition will lead to ridicule.

That is simply not acceptable in a 21st-century health system. We have to do more to ensure greater awareness not just in the Chamber today, but out in our ICBs and GP surgeries, so that the sufferers who are presenting for the first time do not get ridiculed or labelled as hysterical women, but actually get the help that they need. We cannot have a situation where our constituents are avoiding the people they need to turn to for help.

As I have said, there is bias that we have to overcome. There is a gap in research funding. Only £8 million has been spent on ME research over the last 10 years, which is simply disproportionate to the number of sufferers—it should be several times that figure—and we still know less about every aspect of female biology than we do about male biology. I would like to hear a commitment from the Minister that, while he is in this role, he will do his utmost to eliminate the gender bias that we still see in medical research.