Thank you to all who contacted their MP for support in the House of Commons backbench debate on appropriate treatment of Myalgic Encephalomyelitis, initiated by Carol Monaghan (Glasgow North West) along with Ben Lake (Ceredigion) and Nicky Morgan (Loughborough), and held on 24th January 2019.
Thank you to those MPs who responded by attending the debate or by voicing their support for the motion and to those highlighting the work of Invest in ME Research in medical education and our patient-driven crowdfunding for the biomedical research programme of the charity’s Centre of Excellence for ME, and thank you to the supporter who initiated Carol Monaghan’s interest in ME.
Carol Monaghan began by reflecting on how little has changed in the 20 years since a debate in 1999, called by then MP for Great Yarmouth, Anthony Wright.
Sir David Amess said,
“I first heard ME being mentioned in the Chamber in the 1980s by, I think, the late Richard Holt on these Benches and Jimmy Hood on the Labour benches”.
In February 1988, Jimmy Hood, then MP for Clydesdale, presented a Bill to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis, as Invest in ME Research pointed out in their document Give ME Patients a Future.
One of the sponsors of that Bill was the late Brynmor John, then MP for Pontypridd in South Wales. Brynmor John had been diagnosed with ME. In December 1988 he died suddenly, immediately after exiting the House of Commons gym. “He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness.”
It’s nothing less than tragic that over 30 years later, MPs are debating appropriate treatment for ME and pointing out the seriously adverse effects of graded exercise therapy (GET) on people diagnosed with ME.
All the speakers did an excellent job of raising a range of important points, especially in the short time allotted them of 2 to 4 minutes. It was interesting to hear perspectives from MPs with backgrounds in bioscience and healthcare, and sadly all too familiar experiences and comments of their constituents.
Several speakers referred to the lack of further substantial funding for biomedical research since £1.6m spent by the Medical Research Council in 2012. This ring fencing of funds for ME was prompted by a 2011 Westminster Hall debate earned by then MP for Redcar, Ian Swales, in support of his constituents Jan Laverick (sufferer of severe ME and co-founder of our Let’s Do It for ME campaign) and her mother Margaret Laverick.
In his comments on the subject of research into ME, Steve Brine, Parliamentary Under-Secretary of State for Health and Social Care, mentioned the late Baroness Jowell. The government allocated an extra £20m, doubling the amount from the government for brain cancer research, following her death last year.
Invest in ME Research calls upon the government to ring-fence funding of at least £20 million a year for five years for biomedical research into ME. This £100 million to be a beginning to end all of the years of suffering of an estimated 250,000 citizens with ME and the millions of carers and family members affected by the consequences of the disease, and give hope for the future. It would encourage the research community to enter the field. It is not a large investment in the light of the small amount spent by the government on biomedical research into ME over the 30 or so years that MPs have been raising the matter with successive governments or compared with the loss to the economy and lives.
Kelvin Hopkins (Luton North) mentioned Dr. Ian Gibson, former MP for Norwich “and a distinguished medical scientist in his own right.” Dr. Gibson is a staunch supporter of Invest in ME Research, chairing their annual international conference and supporting the Centre of Excellence for Myalgic Encephalomyelitis.
The book by Dr. Gibson and Elaine Sherriffs Science, Politics…and ME inspired a fresh wave of positive political activism when published in March 2017, including a petition to Debate in Parliament the absence of an effective policy for the treatment of M.E, gaining almost 11,000 signatures in the six weeks prior to the snap general election in May of that year.
Liz Twist (Blaydon) thanked Pauline Donaldson of the Tyne and Wear ME/CFS support group and said she was shocked to hear that patients and families are helping to fund research themselves.
“It is really important that we find a way of having that biomedical research done through public funds.”
She went on to say that Invest in ME Research is doing much to support training for GPs and has information packs, but that the charity does not have the funds to extend that medical training everywhere.
Liz McInnes (Heywood and Middleton) again spoke about our friend, the late Merryn Crofts, and her mother’s criticism of the current NICE guidance, adding,
“I have also been contacted by other constituents who have urged me to take part in this debate. One of them is Rebecca Pritchard, who points out that it would not be difficult to increase funding for research, given that very little funding for ME has been given so far. She highlights the work done by Invest in ME Research, based in Norwich, and points out the huge funds that have been crowdfunded by patients and their families.”
Sharon Hodgson (Washington and Sunderland West) said,
“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.”
Regarding education and training of GPs, Invest in ME Research provides GP info packs upon request, their annual public conference is fully accredited by the Royal Colleges, and they have a scheme whereby medical students may be directly involved in the biomedical research funded by the charity in their 4th year of training. The charity is run entirely by volunteers so that all funds are spent on the biomedical research and education projects.
At the June 2018 Westminster Hall debate, Steve Brine said he was looking forward to hearing more about the Invest in ME Research Centre of Excellence, and on this occasion he kindly mentioned Let’s Do It for ME’s Rosalind Amor on behalf of her MP Jo Churchill (Bury St. Edmunds), who said that Rosalind, who has severe ME, has been in touch with her many times on this subject.
However, he gave no indication of change in government policy on research and treatment of Myalgic Encephalomyelitis, so let’s keep doing it for ME until we have the changes so long awaited and so desperately needed.
We are immensely grateful for all support.
The full debate may be read on Hansard and watched on Parliament TV.
Invest in ME Research Comments for Parliamentary Debate January 2019
Give ME Patients a Future pdf
Invest in ME Research Centre of Excellence Executive Summary for MPs
Let’s Do It for ME page on Parliamentary Debates
We leave you with this lovely tweet from Liz McInnes.
So chuffed to receive this lovely card today. Brilliant artwork. We will beat #ME. @CofEforME @Invest_in_ME @LetsDoIt4ME pic.twitter.com/CWVQ4Xwf9J
— Liz McInnes (@LizMcInnes_MP) January 28, 2019
Thank you for supporting Invest in ME Research!