To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention

Subject: Treatment of Very Severe ME 

email [email protected]

Dear Andrew Gwynne, 

Thank you for being an ally to people with ME  (myalgic encephalomyelitis) and Long Covid and committing to ensuring publication of the DHSC ME/CFS Delivery Plan without more delay.  We trust your experiences with both the contaminated blood scandal and the stigma that delayed provision of services to AIDS patients will have given you some idea of the challenges we are facing with ME and Long Covid ME. Unlike the AIDS and contaminated blood cases, however, the main challenge for everyone involved with ME comes from within National Health and statutory care services.

You may remember having attended the screening of ‘Unrest’, directed by Jen Brea a co-founder of #MEAction, in 2017.   We began by pressing for revision of the 2007 NICE guideline on ME/CFS in July 2017 and achieved some success when the new guideline was published in October 2021. The new guideline should have ended the positive harm caused to people with ME by NHS treatments, yet was met with rejection by NHS England and several  of the Royal Colleges.  #MEAction UK continues advocating for recognition, education, and high quality research on behalf of everyone with an ME diagnosis, regardless of the severity of their presentation.  We would really appreciate your help to make sure that everyone knows what ME actually is, not least so that those involved will know how to properly diagnose and compassionately manage this life altering illness – and make the ‘reasonable adjustments’ necessary to prevent continuous worsening of symptoms which when neglected cause long term disability and at worst can be fatal.

In October 2022 the Rt Hon Sajid Javid Secretary of State for Health and Social Care announced plans for a DHSC delivery plan on ME/CFS for England.  We hope that the delivery plan will lead to better treatment for people with ME and a substantial increase in money for biomedical research.  Disappointingly, the draft delivery plan contained no new money for research and no mention of treatment or care for those most severely affected by this life altering disease.

You are aware of the ongoing inquest into the death of Maeve Boothby O’Neill which has already heard how NHS England has no hospital provision for anyone with ME, and no specialist provision for those at risk of death from very severe ME. NHS staff under oath said they had never seen anyone so unwell.  They had no specialist teams anywhere in the country to take advice from, and the NHS Trust was unable to provide palliative care in the last weeks of Maeve’s life.  Like everyone who dies from ME, Maeve was better informed about how to manage her condition at 27 years of age than anyone tasked with treating her.

Maeve is just one of many people of working age (and younger) who have died from ME related complications made worse because NHS provision has been non-existent. 

With your help, the UK could put in place protocols to prevent people with ME dying from malnutrition and lead the world in funding biomedical research into ME.  On 27 September, the inquest into Maeve Boothby O’Neill’s death is expected to hear evidence from Professor Anthony Hemsley, Medical Director at the NHS Devon Hospital Trust at the time of Maeve’s death. We ask for a meeting as soon as possible to discuss the plight of the very severely ill and how to reduce the cost of lengthy hospital stays both to families, patients and the NHS, thereby preventing harm to those with very severe ME and enabling their family and carers to reclaim their lives and careers.

Yours sincerely,

Denise Spreag – #MEAction UK Chair
Janet Sylvester – #MEAction UK Trustee
Malcolm Bailey – #MEAction UK Trustee
Sarah Boothby – #MEAction UK Volunteer
Dr  Clarke Gostelow – #MEAction UK Volunteer
Paul Duley –  #MEAction UK Volunteer