House of Commons Debate for ME

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.


Let’s C Research!

Thank you for supporting Invest in ME Research!

Dear MP…

In a Westminster Hall debate on ME treatment and research on 21 June 2018, Sir Henry Bellingham, MP for North West Norfolk, called for government support for the Invest in ME Research Centre of Excellence for Myalgic Encephalomyelitis.

Sir Edward Davey (Kingston and Surbiton) and Dr. David Drew (Stroud) voiced their agreement, and Steve Brine, Under-Secretary of State for Health and Social Care, said it sounds very promising.

We’ve drafted a letter, which you are welcome to copy and paste or adapt to send your own MP to inform or update them on the progress of the Centre of Excellence and to ask them to support Sir Henry’s call on your behalf.

To find your MP’s contact details, put your postcode in the box on this page.


Dear (MP name),

I write to request your support for the Invest in ME Research Centre of Excellence for ME (Myalgic Encephalomyelitis), as highlighted by Sir Henry Bellingham during a Westminster Hall debate on ME treatment and research on 21 June 2018.

Two main points of note are that the research and treatment of ME is a cross-party matter of public health for people and public services in every constituency; and that the Invest in ME Research Centre of Excellence for ME is of national and international importance.

The proposal to establish a hub-and-spoke model UK Centre of Excellence for ME, based at Norwich Research Park with international cooperation, was published May 2010 by UK charity Invest in ME Research.

The work is now well underway, currently involving researchers based in Norwich, Oxford, Cambridge, London, Surrey, and in collaboration with other countries.

As noted by Sir Henry Bellingham:

“That was funded by patients and carers, who raised a staggering £800,000 for what will be groundbreaking, world-class research.”

“Invest in ME Research has set up a centre of excellence for research in the Norwich Research Park, and it is planning to create a hub for European biomedical research, which is good news indeed. It already has five PhD students and is hoping to push out a consultant-led clinical service. Here we have the infrastructure and base for that extra Government funding, to build on the money that has been raised by patients and carers.”

“I hope the hon. Gentleman will support my campaign to get the Government to invest in the Invest in ME Research Centre of Excellence in Norwich. I did not mention that it has a really good chance of forging first-class links with not only European biomedical research institutes but institutes in the United States and Asia, where other groundbreaking research is being done. The Government should support and invest in success.”

Please read the June 2018 update on the Invest in ME Research Centre of Excellence, a bullet-point summary of the current status of this project, which has impressed USA’s NIH and is deserving of support by all UK political representatives and the relevant government departments:

The summary concludes on page 7:

“Invest in ME Research is therefore asking for support from MPs to engage actively with this project with a view to securing the final, and vital, elements of the UK Centre of Excellence for ME and create a future whereby people with ME may be given back their lives.”

The Let’s Do It for ME campaign aims to raise awareness of the Invest in ME Research Centre of Excellence for ME and a summary of the Westminster Hall debate with relevant extracts is here:

Thank you for reading and I look forward to your reply.

Yours sincerely,

(Your name and address)


As stated in the letter, our summary of the debate is here and includes the extracts below. Hansard transcripts of the extracts.

Sir Henry Bellingham


Hansard Transcript:

Sir Edward Davey, Andrew Selous, Sir Henry Bellingham


Hansard Transcript:

Sir Henry Bellingham, Dr David Drew


Hansard Transcript:

Steve Brine (Parliamentary Under-Secretary of State for Health and Social Care)

Hansard Transcript:

Click here to read our full summary of the debate.

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