World ME Day

Siobhain McDonagh Excerpts

Wednesday 1st May 2024 Westminster Hall

[Sir Sajid Javid]

Yes, I agree with the hon. Member. Indeed, those guidelines were changed while I was Secretary of State for Health and Social Care. I remember welcoming them, but the expectation of course was that they would be properly followed. As the hon. Member says, in some 70% of cases that does not seem to be the case. We all want that to be addressed. I hope that the Minister will be able to pick up that point when he responds.

Another example of research is a groundbreaking project on long covid and ME diagnostics called LOCOME. It is co-led by Action for ME, the University of Edinburgh and a computational biology company called PrecisionLife. It is hoped that that new project, which is utilising the data that has been gathered from the DecodeME project, will provide insights that will be able to create the first predictive diagnostic tools for ME and long covid. I take this opportunity to thank the charity Action for ME for its world-leading work on the project, its crucial support and the research and campaigning that it does to improve ME research and outcomes.

It is vital that we continue to support organisations such as Action for ME and researchers in this way. The focus of World ME Day in 2024, this year, will be to build a “Global Voice For ME”. In that spirit, it is important that we collaborate with allies across the globe to further research in this area. However, we know that, even with more research, it will be a long journey to achieve our desired outcomes. That is why improving the experiences of those living with ME, and their families, is also vital.

I know from my own engagement that individuals with lived experience often feel dismissed. I recall a recent Channel 4 report that even highlighted the case of a family who saw social services investigate the care of their daughter because they believed that she was being kept in bed against her will. If it were not for campaigning organisations such as Action for ME, the ME Association, the all-party parliamentary group on myalgic encephalomyelitis, Forward ME and the World ME Alliance as well as the work of incredible individuals such as Sean O’Neill, who I believe joins us today and who has led an inspiring campaign in memory of his daughter, Maeve, the situation would feel almost hopeless. That is how it would feel if we did not have these people battling for more work to be done on ME. It is because of them that the case of this community is being heard, and having served in Government for so long myself, I know that when people speak up with the support of many honourable colleagues from right across the House, the Government must listen.

This year, 2024, marks 55 years since the World Health Organisation officially acknowledged ME. For too long, we have failed to recognise the severity of the condition for thousands of people across the UK. As we mark World ME Day on 12 May, we must renew our commitment to improving outcomes and experiences for everyone affected. It is great to see so many hon. Members from across the House in the Chamber, and I am grateful to everyone who has attended today’s debate in the Public Gallery, as well as those who may be joining online. Where such support exists, there is always hope.

The ambition is to improve the lives of people with the condition today, and to ensure that future generations have a brighter future. Helping make that ambition a reality is now the responsibility of the Minister, and I look forward to his response and the contribution of other hon. Members.

[Dame Siobhain McDonagh (in the Chair)]

I remind Members that they should bob if they wish to be called in the debate.

--- Later in debate ---

[John McDonnell (Hayes and Harlington) (Lab)]

I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) not just on securing the debate, but on the groundbreaking work that he did in establishing the delivery plan. We are all grateful for that.

We all come to this debate with our own experiences. My first constituency case was nearly 30 years ago. I remember it well. It was heartbreaking: a young women who had a full-time job, was bringing up her family with two children and was active in her local community and trade union, went down with a condition that she never understood. It was not recognised for a long time, even by a local doctor. There was a lot of stigma attached to it at that time—I think a few members of the media were running stories like that. It took her years and a lot of support before she could come to terms with it and re-engage fully with her life.

Debates like this give us the opportunity to share those experiences, but they also prompt organisations to send us briefings. I congratulate Action for ME on the excellent briefing that it has circulated. It has brought us up to speed on a whole range of issues and focused us in advance. I want to respond in support of the half a dozen demands made by my hon. Friend the Member for Putney (Fleur Anderson). The first is about the recognition of the consequences and scale of ME in our society. One area that we have not explored enough is the mental health consequences of ME. In the cases that I have dealt with, ME has led people virtually to breakdown, because of the frustration of no longer being able to live an active life, as well as facing all the barriers and the stigma. We do not fully understand the range of consequences.

I fully agree with the point about research. Demand is doubling, at least. I was shocked that the figures in the briefing were so low after all this time and all the debates that we have had. Long covid has also brought a new dimension to the debate. I am receiving lots of representations from constituents about long covid; it is like we are going through the ME process all over again. I congratulate Action for ME. As the right hon. Member for Bromsgrove said, the establishment of the centre of excellence in Edinburgh is a huge breakthrough; it will be a world leader.

I thought that the NICE guidelines were being rolled out more effectively, so I was shocked that 76% of ICBs do not have a specialist service. We need to think about how that has gone wrong and what will put it right.

My hon. Friend the Member for Putney made a point about benefits. The Government are yet again reforming the benefit system, and I am worried about the reforms. I have met with a range of disability groups, and people are petrified. There is real fear out there, including among people with this particular condition. Anyone who has assisted a constituent through the appeal process understands how difficult it is to get it across that someone has a fluctuating condition, as was mentioned. I do not criticise clinicians, but there is still a lack of thorough understanding among some clinicians about the condition.

I want to make one further point, which has not been raised. I have come across case after case in which protection at work has not been in place, and people have lost their jobs, promotion, or access to training and so on. The reasonable adjustments that we thought we had built into the legislation have not been made. That needs to be reviewed going into the next period. There will be new employment legislation, certainly if there is a change of Government, and perhaps whether or not there is a change of Government. There are issues about the quality of employed life that have to be addressed, and this is one of them.

I am grateful for the debate, because I will be able to report back to constituents that Parliament has discussed the matter. I have the same confidence that the right hon. Member for Bromsgrove has: when a group of MPs works on a cross-party basis and makes noise like this, civil servants and Ministers listen. I hope that the Minister can report today particularly on the timing of the delivery plan, which will give us so much hope.

[Dame Siobhain McDonagh (in the Chair)]

I will call Jim Shannon next. If he would not mind, I ask him to voluntarily restrict his comments so that at 5.08 pm I can call the Opposition spokesperson for five minutes and the Minister for 10 minutes, because I think people want to hear what the Minister has to say.