Activists to Demonstrate in Parliament Square for ME Research

#MEAction UK will hold a #MillionsMissing demonstration in Parliament Square on Oct. 18th calling for the £100 millions missing from myalgic encephalomyelitis (ME) research. Numerous MPs will join the demonstration, and Lord Bethell and Fleur Anderson MP will speak. Researchers will discuss their work, and the intersection between ME and Long COVID. A mother who lost her daughter to ME will talk about the urgent need for biomedical research. 

Denise Spreag of #MEAction UK commented, “We are asking all our supporters, people with ME and people with other complex chronic conditions to start this campaign by lobbying the Wellcome Trust, the biggest funder of medical research in the UK, to commit significant funding to ME.  The Wellcome Trust have approximately £29 billion of funding.” 

ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME biomedical research.” 

Sarah Boothby, Maeve Boothby O’Neill’s mother, a registered social worker, will talk about her advocacy for families where death from ME is a possibility.  Following the death of her daughter, Maeve, from the disease Sarah said,   “Maeve did not want to die and had everything to live for.  The Millions Missing from biomedical research could have saved her life, and the many others we never hear about”

Researchers will speak about their groundbreaking work.  Prof Douglas Kell from Liverpool University will talk about his micro clot research and the links between ME and Long COVID.  Professor Kell says,  “If you want to solve scientific and medical problems you need to invest in the necessary scientific and medical research. If adequate research funds had been invested in ME research in previous decades, as people with ME have asked for, we would have been in a much better position to help people with Long COVID.  Funders really need to come forward now to help us find the causes of the various flavours of ME and consequently effective treatments for them.”

Hayley Valentine-Howard will talk about how ME affects pregnancy and its implications on delivery and the postnatal period.  

Claire Tripp will cover the launch of Decode ME and said, “Doctors can’t tell you much about ME. They can’t tell you why you have it, why you can’t get better or even if you’ll ever recover. Without more research into ME we’ll never have the answers we need.”

Emma Lewell-Buck MP, Hywel Williams MP,  Ben Lake MP, Alex Chalk MP, Fleur Anderson MP, Ben Bradshaw MP, Lord Bethell and Baroness Scott of Needham Market have all accepted our invitation and Lord Bethell and Fleur Anderson MP will speak.

Preliminary studies show that one-third to nearly half of people with Long COVID meet the criteria for the complex, chronic disease of ME. (See the research here, here and here.) A large body of research shows that long-term illness and disability can be triggered by viral infections. Up to 80% of cases of ME are initiated by an infection. Research has shown that viruses ranging from influenza and glandular fever to Ebola, have caused ME in patients. Now, the majority of people with Long COVID are reporting symptoms that resemble ME, most notably post-exertional malaise, a worsening of symptoms after exertion. Research into ME will benefit many other illness groups.

#MEAction UK and the #MillionsMissing will not stop fighting until there is action and equity. Now, more than ever, we need results from good quality research for all of those with ME, including those with Long COVID and those who have been neglected for decades.