ME also known chronic fatigue syndrome affects a quarter of a million people in the UK but is ‘poorly understood'
By Chas Newkey-Burden, The Week
Extracts
Dr Lucy Shenton, the GP who treated Maeve Boothby-O’Neill, has joined calls for better funding of research into people suffering from myalgic encephalomyelitis, or ME, which is also referred to as chronic fatigue syndrome.
Boothby-O’Neill had suffered with the condition for a decade before she died at home in October 2021. She was 27. The inquest at Exeter coroner's court is examining whether different clinical decisions could have saved her life.
Dr Shenton, who took over Boothby-O'Neill's care in April 2021, said that many of the health professionals involved in caring for O'Neill were not doctors and their “lack of understanding” of severe ME may have been “relevant”.
#ThereforME – Building an NHS that’s there for people with Long Covid and ME:
A woman is campaigning for better care for people with ME after her husband's life was “decimated” by the disease, she told The Times. Karen Hargrave said that her husband, James Herring, 37, a former marathon-running civil servant, struggles to speak, can't eat solid food, is on the highest level of disability benefits, and can only get out of bed once a day in a wheelchair to go to the bathroom.
A report for the campaign she has launched (#ThereForME) highlights how “failings” in NHS care are “the norm”, said The Times. A survey of 328 patients found that not a single one with very severe ME felt the NHS “had been there for them”. There are “no treatments” for ME, and no “specialist” inpatient NHS services.
“If ME had been taken seriously decades ago,” said Hargrave, “there probably would be treatments by now.”
A Department of Health and Social Care spokesperson said the government “will ensure that patients receive the care they deserve” and is “committed to improving the care and support for people with myalgic encephalomyelitis and chronic fatigue syndrome”.
Further extracts
O'Neill's “harrowing” case “highlights clashing NHS narratives” on ME, said Alastair Miller, a consultant physician, in The Observer. “Having been involved in the diagnosis and management of this condition since the mid 1980s,” he said, “I know of no other disease that provokes such controversy – pitting clinicians, researchers and patients against one another rather than in support.”
The ME Association Letter to the Observer
“Alastair Miller is correct to say that the NHS needs to provide rapid access to multidisciplinary clinics where diagnosis can be confirmed and guidance on management provided. This was recommended in the new (October 2021) NICE guideline on ME/CFS. However, some of the key recommendations on management, especially the removal of graded execise therapy, were opposed by the Royal College of Physicians.
“Around 25% of people with ME/CFS are severely affected – often resulting in constant pain, severely reduced mobility, hypersensitivity to light, sound and touch and problems with eating, swallowing and digestion of food. At the severest end of the spectrum are a group permanently bedbound who may require tube feeding to prevent life-threatening malnutrition – as was the case with Boothby-O’Neill.
“The NICE Guideline on ME/CFS contains clear recommendations on care and management in the home and in hospital. Sadly, many health professionals remain unaware of them; a significant proportion of specialist referral clinics are still not able to provide a care and management service or plan for those with severe ME/CFS; and there are no longer any hospitals with dedicated medical units for those who require specialist in-patient care.
“Health service commissioners must urgently review their specialist care of people with severe ME/CFS to make sure this is consistent with the Nice recommendations. Where no care at all is provided, this can no longer be ignored. Otherwise, there will be more unnecessary deaths.”
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.
Further information
The ME Association: People with myalgic encephalomyelitis and their carers are calling for a reversal of decades of underfunding | 5th August 2024