Myalgic Encephalomyelitis

Jo Platt Excerpts

Wednesday 19th November 2025 Westminster Hall

[Jo Platt (Leigh and Atherton) (Lab/Co-op)]

It is an honour to serve under your chairship, Mr Mundell. I declare my interest as chair of both the all-party parliamentary group on myalgic encephalomyelitis and the all-party parliamentary group on long covid. I thank the hon. Member for Wells and Mendip Hills (Tessa Munt) for bringing this important debate to the House; we work together on the APPG on ME.

ME and related conditions such as long covid are among the most devastating illnesses of our time, yet they remain some of the most poorly understood and most neglected. Unless we confront this misunderstanding head on, we will never deliver the change that patients so desperately need.

This issue is personal to me. In 2020, I contracted long covid. The infection was mild, but the aftermath was devastating, and it changed my life forever. With long covid, I developed ME, so I know the exhaustion, isolation and gaslighting that patients face. I cannot know for sure why I improved, but I believe that one reason was early recognition. I give a big shout-out to my friend Shelley Guest, who saw that my symptoms mirrored her own. She gave me books; she shouted at me, and told me to pace myself. I am forever grateful to her.

That raises a critical question: if diagnosed and supported early enough, could ME’s symptoms be managed to the point of recovery or partial recovery? My journey is not over yet. That is why research and recognition are not optional; they are essential.

[James Naish (Rushcliffe) (Lab)]

I thank my hon. Friend for her work chairing the two all-party groups. My constituent Janet contacted me about her son Richard, who was diagnosed with chronic fatigue syndrome six months ago. He is still waiting for a proper referral. Does my hon. Friend agree that an early pathway is vital, and would she encourage the Minister to outline what form that might take?

[Jo Platt]

I agree, and I recognise every single one of those issues. As chair of the APPG, I hear about the harrowing cases of what people are struggling with on the pathway to healthcare. It is simply not good enough.

[Wera Hobhouse (Bath) (LD)]

I hear from so many constituents that, out of those suffering from any condition, people suffering from ME have the lowest quality of life. Is it not also the case that people simply do not understand what ME is?

[Jo Platt]

I completely agree. As my hon. Friend the Member for Rushcliffe (James Naish) mentioned, there is confusion about what chronic fatigue is and what ME is; there needs to be differentiation and clarification on those conditions. We all understand chronic fatigue, but ME is different. It is not just tiredness; they are complex issues. Many of those who are severely affected cannot even sit upright. They are confined to darkened rooms, often tube-fed, cut off from the world and too often ignored by the very health system that is meant to protect them.

Long covid has only added to that burden. Millions are affected, half of whom meet the criteria for ME. Next Tuesday, Parliament will host the first drop-in session of the Overlapping Illness Alliance, which will raise awareness of ME, long covid and related conditions, and I urge colleagues from across the House to attend.

The Government’s ME delivery plan is a welcome step. NHS e-learning service specifications and small research grants are progress, but they are not enough, particularly for severe ME. The scale of the challenge demands ambition, accountability and strategic investment. We need specialised NHS services for ME, we need urgent support for children whose education is disrupted, and we need co-ordinated action across health, social care, education and employment.

Research is central to progress. DecodeME has shown the brilliance of UK science, but funding remains far too limited. Germany has pledged €500 million to research with the aim of curing ME by the next decade. We need to be just as ambitious, but we must also confront the misinformation and bias on ME that has plagued us for decades. Patients are dying from nutritional failure because there is no commissioned service for severe ME. Some spend hundreds of pounds in hospital on private care without a proper pathway. Lives are at risk now and we cannot wait for long-term provision while patients suffer.

That is why, alongside the APPG, I am calling for the commissioning of specialised NHS services for severe and very severe ME with expertise in nutritional failure, and I would welcome the chance to meet the Government to discuss immediate solutions that can save lives today. Will the Minister commit to improving data collection so that we can better understand risks and create the foundations for effective care? The Government have taken steps in the right direction, but more must be done. As chair of both APPGs, I will continue to work with the community and the Government to do that.