Appropriate ME Treatment

Sharon Hodgson Excerpts

Thursday 24th January 2019 Commons Chamber

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

I start by thanking the hon. Members for Glasgow North West (Carol Monaghan) and for Cheltenham (Alex Chalk) and the right hon. Member for Loughborough (Nicky Morgan) for securing this important debate. I thank all hon. Members who spoke; it was great that so many did so. Due to time, I shall not list them all.

I thank the charities—MEAction, Action for ME, the ME Association, the M.E. Trust and ME North East—and all the patients who have been in touch with me to share their thoughts, feelings and experiences of living with ME. The ME Association estimates that approximately 250,000 people in Britain are affected by ME; we have heard plenty of moving stories about those individuals today. However, an article published in the British Medical Journal in July 2018 reported that 90% of cases are thought to go undiagnosed, and that people with ME are substantially undercounted, underdiagnosed and undertreated. As we have heard, patients are often passed from pillar to post with dismissals and misdiagnoses, and sometimes left waiting over a year for a diagnosis. I am sure the Minister does not need me to tell him that that does not meet NICE guidelines of diagnosis within four months of the onset of symptoms. The Government should therefore do more, and considering that they are not doing much for patients with ME at the moment, I do not think that that is too much to ask.

The Government do not fund research and clinical care for people with ME at the rate they do for other serious prevalent diseases. As we have heard, the average spent on research for a person living with ME is just £1 a year. According to Action for ME, that represents just 0.02% of all active grants given by the mainstream UK funding agencies. I am therefore concerned that the Government recently confirmed in a written answer that ME research funding is lower now than it was even in 2013-14.

Current treatments of graded exercise therapy and cognitive behaviour therapy have been found to be harmful to patients with ME, and continue the narrative of disbelief and neglect of them, which we have heard about from a number of hon. Members. NICE has already recognised that its guidelines are outdated, and that patients do not receive the full picture on recommended treatments. NICE is updating its clinical guidance on the diagnosis and management of ME, but that is not expected to be published until October 2020. Patients and their families have already waited long enough, so will the Minister work with patients, charities, researchers and NICE to ensure that treatment and care for ME is appropriate?

We have heard today why funding for biomedical research into ME is so desperately needed. According to MEAction, the only year in which the Medical Research Council invested any meaningful sum in biomedical research was 2012, when £1.5 million of funds were ring-fenced. However, no funds have been allocated for biomedical ME research since then.

In the Westminster Hall debate in June last year, I called on the Government to consider funding research, because it is long overdue. Will the Minister commit to doing that today, or will the Government continue to leave it up to the charity sector to do so? Projects such as Invest in ME Research, which has four PhD students researching ME, have been financially supported by patients and their families via crowdfunding in excess of £870,000. That is fantastic, but it should not be left to patients to crowdfund research. More funding for research will enhance healthcare professionals and clinicians’ understanding of ME, which will improve the patient experience and debunk the myths of ME being a primarily psychological condition, as we have heard about today. Clinicians must have access to up-to-date research and information so that they can give patients the best possible care and advice.

In some areas, however, that is not the case, as Jennifer Elliot, the CEO of ME North East, has brought to my attention. Jennifer told me of the diminished services available to patients with ME in the north-east region. There are no services at all for young people with ME in the entire north-east. Adult services in Sunderland are closed to patients altogether, and have been for some months, with no date for them to be reinstated. For 20 years, ME North East has been doing all it can to help and support ME patients but, with a severe lack of funding, it is now at crisis point. I am sure that other regions have similar stories, as we have heard today, so will the Minister please consider the loss of services in his response? Will he ensure that the services are reinstated and supported financially by the Government?

Finally, we must ensure that the stigma of ME is tackled. Funding and research will help, but it cannot be right that, as found last year, more than one in five families caring for a child with ME have been referred for child protection proceedings due to school absences and a lack of understanding by the school, as we have heard. I am pleased that the vast majority of those accusations are dismissed in less than a year, but the added stress and burden to families with children suffering with ME can be overwhelming. We therefore need more funding for research, so that we can understand, care for and treat ME, and break down the stigma.