Recently, I was proud to speak at a rally at Barkers Pool in support of the global #MillionsMissing campaign and in solidarity with those living with Myalgic Encephalomyelitis (ME).
ME is a chronic medical condition that affects people’s immune system, nervous system, endocrine system and metabolism. There are around 250,000 people with ME in UK, 5000 of whom live in South Yorkshire.
The condition has a debilitating effect on people, with 75-85% of patients unable to work and 25% bedbound or housebound. It can affect children as young as four – there are an estimated 25,000 children with ME in the UK – and is the leading cause of long-term school sickness absence in the country.
Recovery is rare – estimated at just 5% – leaving many patients sick and disabled for the rest of their lives. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are currently the main NHS treatments for ME but have proven ineffective. In fact, a recent survey showed that over 80% of patients receiving GET reported their symptoms actually worsened during or after treatment.
It’s clear from all of this that we need to gain a better understanding of ME but, from 2006 to 2015, just £4 per patient per year was spent on research into the condition. This paltry level of funding simply fails to reflect its seriousness and its severity.
After decades of neglect, the #MillionsMissing campaign is calling on the Government to properly invest in research into ME and update medical training on the condition.
I fully support this campaign and, along with fellow Sheffield MPs, Paul Blomfield and Clive Betts, I’ve raised these issues in Parliament. We’ve demanded a review of medical guidance on ME, for an end to the use of CBT and GET treatments for ME patients, and for urgent Government investment in ME research.
In line with the #MillionsMissing campaign, we’ve also called on the Government to end unjustified and prejudicial child protection proceedings against families dealing with ME. One in five families of children with the condition have had child protection referrals made against them and, shockingly, fifty percent were accused of fabricating illness.
Thank you to everyone who attended the #MillionsMissing rally. I will continue to fight alongside the #MillionsMissing campaign to help bring an end to prejudice in medical treatment, in child protection, and in all our attitudes towards those who suffer from ME.