** Trigger warning - upsetting content, death **
We are using this page to provide media updates on the inquest into the death of Maeve Boothby O'Neill, who had severe ME and tragically passed away, aged just 27, in October 2021.
"With the inquest underway into the tragic passing of Maeve Boothby O’Neill, in October 2021, we share in the sadness and frustration felt by the ME community surrounding the treatment of people with ME.
Whilst the understanding and awareness of ME within the medical community is slowly shifting, and there are clearly some fantastic health professionals providing excellent care, the rate of change is not fast enough and far too often, leaves some people with severe and very severe ME with inadequate support and healthcare.
Following the result of the recent election, we have been working hard to ensure that ME is kept firmly in the minds of the new government, each and every MP and minister, and relevant government departments.
Action for M.E. has briefed all new MPs and departments on the impact that ME has on those affected by it, and the country more widely, requesting meetings and calling for the Delivery Plan to be published as a priority, alongside any commitments it makes to people with ME to be followed through, without fail.
With the ME Association, we have already shared an update on the status of the APPG, here, but will be ensuring that a new Chair is found and that the APPG is reconstituted, following summer recess. As shared in the update, we are currently working to improve the APPG’s communication strategy in order to ensure that its work and impact is more effectively communicated to the ME community.
We hope to work further with journalists to raise vital awareness of ME over the coming weeks and will continue to share updates on Maeve’s inquest and our ongoing work with the government."
It was brought to our attention that a recent article in the Daily Mail, covering Maeve's inquest, had listed ourselves and the NHS as sources, shortly after stating the Graded Exercise Therapy (GET) is an effective treatment for ME, contrary to the 2021 NICE Guideline.
We have since contacted the journalist (23 July), requesting they remove the reference to GET and offering to work with them on any future pieces to ensure that any information shared relating to the condition is accurate.
02 August - The Telegraph: "GP who treated woman with severe ME tells inquest more funding is needed"
02 August - The Times: "Doctors didn’t accept ME was a medical condition, inquest told"
02 August - The Telegraph: "NHS staff treating woman with ME ‘didn’t understand condition’, says doctor"
02 August - Daily Mail: "Family medic who tried to save woman, 27, who died of debilitating ME tells inquest other NHS staff trying to give her care were not even doctors and had 'lack of understanding'"
01 August - Daily Mail: "Woman, 27, who died of debilitating ME was desperate for a 'loving hug' in her final months but found it too painful to be held, inquest told"
01 August - The Times: "ME patient wanted a loving hug but it hurt too much, inquest told"
31 July - ITV News: "Maeve Boothby O'Neill inquest: Doctor had 'never seen' ME patient with such severe symptoms"
31 July - The Times: "ME patient ‘would have received better care if she had eating disorder’"
31 July - Telegraph: "ME victim ‘would have received better treatment if she had been suffering from eating disorder’"
27 July - The Observer: "Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME"
26 July - Daily Mail: "Senior doctor pleaded with a young woman who died from debilitating ME to remain in hospital rather than go home, an inquest heard"
26 July - The Times (subscription required): "A horrible way to die … and no doctors can help you’"
26 July - Telegraph: "Woman who died of ME was ‘frightened no doctors could help’"
26 July - BBC News: "Doctor urged ME patient to stay on ward - inquest"
25 July - The Times (subscription required): "ME victim ‘could not be fed due to infection risk’"
25 July - Independent: "Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears"
25 July - BBC News: "Doctors tried 'hard' to treat ME patient - inquest"
25 July - The Telegraph: "Doctors treating ME patient relied on nutritionist with no expertise in condition, inquest hears"
25 July - The Guardian: "ME patient’s consultant tells inquest staff’s unfamiliarity with condition was ‘unfortunate’"
25 July - The Standard: "Doctors did ‘very best’ for young woman suffering with ME, inquest hears"
24 July - Independent: "Inquest of woman unable to chew food told of shortage of specialist beds for ME patients"
23 July - The Guardian: "NHS wards not capable of treating ME patients, expert tells Exeter inquest"
23 July - The Mirror: "Young woman, 27, died after begging GP to help her 'get enough food to live'"
23 July - METRO: "Woman with chronic fatigue syndrome died after begging GP for help"
22 July - The Guardian: "Devon woman with ME asked GP to help her ‘get enough food to live’, inquest hears"
22 July - BBC News: "Woman died after begging GP for help - inquest"
22 July - Sky News: "Woman with ME died after begging GP for help, inquest told"
22 July - The Times (subscription required): "Dying ME patient begged GP: ‘Please help me get enough food’"
22 July - Channel 4 (also embedded below): "Inquest begins into the death of 27-year-old woman who fought ME for year
