Calls for better funding for ME research

Lancashire patients are joining forces with sufferers across the North West to shine a light on health funding inequality.

Published 12th May 2018

People in Lancashire, living with the chronic condition ME, have thrown their support behind a global day of action to raise awareness of the condition.

A number of people will be travelling to Manchester on Saturday as part of the #MillionsMissing campaign to shine a light on the realities of living with ME (Myalgic Encephalomyelitis).

Hundreds of thousands of people across the world will gather in cities to shine a light on the stark difference in funding for similar chronic conditions.

The event has been organised by the Millions Missing movement, set up to highlight the plight of ME sufferers.

What is ME?

ME, or Myalgic Encephalomyelitis, is also known as Chronic Fatigue Syndrome (ME/CFS) is a systemic neuroimmune disease that can cause exhaustion after just minimal physical, mental or emotional exertion. It can lead to people being in intense pain, unable to stand light or food. It leaves an estimated 75% of patients unable to work with 25% of those housebound or bedbound.

It is estimated that there are more than 250,000 people in the UK suffering with ME.

The event will see 'empty' shoes and footwear of ME sufferers from across Greater Manchester and Lancashire lined up in the city centre.

The shoes have been collected from people living with the condition, to show how they are now unable to walk because of the debilitating illness.

Campaigners also say they want to shine a light on the injustice and inequality of funding.

According to recent research, between 2006 and 2015, ME had £4 per patient per year spend on research funding, compared with £80 per patient per year for MS sufferers.

People at the event on Saturday will be calling on the Government to wake up to the severity of the condition and help improve funding to find better treatment options for people living with ME.

Becky Hewson, ME sufferer and one of the organisers of the Manchester event commented: “ME is an extremely debilitating disease with no known cure. It takes months if not years for people to be diagnosed and when they are GPs are unable to offer effective treatment plans. In some cases patients are sent for harmful ‘therapies’ that are offered based on outdated and unproven assumptions about the nature of the illness. We don’t treat people with other serious illnesses in this way yet this is common for ME sufferers. The government must provide more research funding to help develop medical understanding of the nature of this disease so effective treatments and a cure can be found.”