Local charity tells the government to wake up and see the bigger picture

Kirklees & Calderdale Independent Myalgic Encephalomyelitis Support Group (KCIMESG) are backing the campaign group, #ThereforME, and their recent campaign, #FundThePlan. This asks for £20 million of funding a year for the next five years. This would finally start to address a lack of research, improvements in NHS care and increase support to those with ME.

The 20/20 Health ‘Counting the cost’ report estimated that a weighted minimum cost of ME/CFS in the UK is £3.3 billion. Meanwhile, in total, between 2015-20, just £6 million was committed in UK public funding for ME research, despite affecting up to 1.3 million people. To put this into perspective, £53 million was invested in Parkinson's disease and £22 million for multiple sclerosis, each of which affects approximately half the number of people estimated to be living with ME prior to the pandemic. (ThereForME). When moderate to severe, ME leaves people housebound, bedbound and some so weak they need to be tube fed. There is no known cure and is a lifelong limiting condition.

While ME has been around for decades, little is known about the condition due to lack of credible research and dismissal from some medical professionals, mainly due to its complex nature. There is still no diagnostic blood test, which means anyone presenting with similar symptoms can end up with a Chronic Fatigue Syndrome or Myalgic Encephalomyelitis diagnosis, thus further complicating which treatments are effective. While some may find a missed cause to their illness and some may improve over time, a large number are left with a life-changing condition with no cure and inadequate support.

It is believed that this is a virus-related condition and its prevalence has increased since Covid, with KCIMESG finding more people coming forward after a Long Covid diagnosis.

“The government are scratching their heads wondering why so many are out of work and yet we see so many with ME who have been forced to go part-time, leave their job, take up long-term sickness or early retirement. These people want to work, but are finding themselves unable to continue, or being forced out of their profession due to ill health. It makes sense to fund the plan with a proposed £20 million, if not only to counterbalance the billions lost in revenue, but also to finally be able to offer effective treatments to those suffering. Anyone can be affected; we've seen teachers, solicitors, NHS staff, even a triathlete attending our monthly meetings, trying to make sense of their condition and confused as to why medical professionals are at a loss of how to get them back to their normal selves. It is short-sighted to continue to push anyone with this health condition to get back into work, which will inevitably see a further decline in their health and not concentrate on the long term benefits of effective treatments,” stated Denise Howorth, chairperson of KCIMESG.

The next meeting of the All Parliamentary Party Group on ME is on March 5th, and the delivery plan is likely to be on their agenda. There's no time like the present to encourage your MP to attend or let the APPG know that funding for the Delivery Plan matters to you.

If you or your loved one live with ME or Long Covid, KCIMESG invites you to join their Facebook groups for people with ME and their friends and families, or come along to the face-to-face coffee meet ups in Huddersfield or Halifax - further information can be found at kcimesg.co.uk.