**Trigger Warning: Distressing content**
As the inquest into ME suffer Maeve Boothby-O'Neill concludes, the Mirror looks at other cases of those whose lives have been ripped apart by this cruel and widely misunderstood disease.
By Julia Banim
Extracts
Myalgic Encephalomyelitis (ME) is still widely misunderstood. Maeve Boothby-O'Neill, whose inquest has now concluded, was just 27 years old when she died.
Remembered as ‘articulate' and ‘intelligent' by loved ones, aspiring writer Maeve died after living with a complex case of Myalgic Encephalomyelitis (ME), which saw her condition deteriorate to the point where she was unable to eat, drink or sit up. Just four months before her death, Maeve wrote to her doctor begging him to help her ‘get enough food to live'.
Tragically, Maeve is far from the only person whose hopes and dreams for the future were ripped apart by ME. Here, the Mirror takes a look at other cases which highlight the severity of this agonising disease.
Please click the link below to access the article that covers the cases of Merryn Crofts (who sadly passed away in 2017), Alice Barrett, Millie McAinsh, and Whitney Dafoe (US patient)
MEA comments
The ME Association contributed to the article:
“Dr Charles Shepherd, Hon Medical Adviser at the ME Association told the Mirror how Maeve's case has ‘highlighted the appalling and unacceptable failure of the NHS to provide proper care and management for people with severe and very severe ME/CFS', adding that such failings ‘require immediate action at the highest level by the DHSC (Dept of Health and Social Care) and ICBs (Integrated Care Boards)'.
“Dr Shepherd explained: “The new (2021) NICE guideline on ME/CFS makes it clear that people with very severe ME/CFS may have difficulty with eating, swallowing and digesting food and may therefore require tube feeding or some other form of assisted nutrition. They are therefore at risk from life-threatening malnutrition and require specialist care both at home and in hospital to prevent this occurring.
“However, there are no longer any hospital-based referral services with dedicated inpatient beds for people with ME/CFS which provide the type of specialist care that is consistent with NICE guideline recommendations. So in some cases, completely inappropriate treatment is being given because a feeding problem has been misdiagnosed as a psychogenic eating disorder.”
Looking ahead to the future, Dr Shephard hopes to see all current specialist ME referral services nationwide reviewing their policy on managing those with severe ME, ‘and ensuring that it is consistent with the recommendations in section 1.7 of the NICE guideline on ME/CFS‘. He has also called for the formation of a national physician group with relevant experience, given the current absence of specialist in-patient referral centres for severe ME patients.”
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
