IMAGE DESCRIPTION: An image of the Houses of Parliament with a circular image of a person with ME/CFS from our library of Real ME images i.e Real people with ME. The photo of the lady who has a nasogastric tube (NG). The title reads: ME Association Statement and Parliamentary Question: People with ME/CFS at risk of starvation. The ME Association Logo (bottom right).

ME Association Statement and Parliamentary Question: People with ME/CFS at risk of starvation

The ME Association is appalled at the lack of understanding and training regarding care and management of people with severe and very severe ME/CFS when they have to be admitted to hospital. Recent cases of women with very severe ME/CFS being admitted to hospital have served to highlight just how badly they are treated when hospitals fail to adopt the very clear recommendations on the management of severe and very severe ME/CFS in section 1.7 of the 2021 NICE Guideline on ME/CFS.

Karen Gordon, Sami Berry, Millie McAinsh, and now Carla, to name but a few, have not been receiving the quality of care and management they are entitled to or in an environment that takes account of symptoms such as sensitivity to light, sound and touch that occurs in severe ME/CFS.

The response to the latest parliamentary question by Andrew Stephenson, MP, the Minister of State for Health and Social Care, on the current situation is inadequate and fails to acknowledge the need for urgent action (below).

People with severe ME/CFS who are admitted to hospital require assessment from physicians who are knowledgeable about ME/CFS and are aware of the recommendations in the NICE Guideline, especially those relating to people with severe and very severe ME/CFS who are in need of nutritional support involving both food and fluids.

While we all await the Department of Health and Social Care's Delivery Plan on ME/CFS – which we hope will be published soon and with much-more relevance to people with severe and very severe ME/CFS than appeared in the Interim Plan – patients are at risk of dying if they do not receive appropriate medical care and nutritional support.

In 2024 we should not still be hearing that some medical professionals lack even a basic understanding of ME/CFS or that they do not want to follow the NICE Guideline recommendations.

This requires action now:

  • NHS Hospital staff need training from clinical experts who work in NHS ME/CFS specialist services and who have adopted the NICE Guideline recommendations.
  • All specialist referral services for ME/CFS and their hospitals should be able to care for and manage people who are severely and very severely affected and be able to bring in other knowledgeable experts such as dietitians who have expertise in dealing with people who have severe ME/CFS.

The NHS needs to step up and stop harming patients whose very lives depend on the treatment that should be given to them. People with very severe ME/CFS are the most affected by this extremely debilitating medical condition and yet they are also the most neglected. This situation must change.

Dr Charles Shepherd (MEA Trustee and Hon. Medical Adviser) has been meeting with a group of medical colleagues to discuss the development of a protocol for the management of people with severe and very severe ME/CFS who require admission to hospital. This will complement and add to the recommendations in the NICE Guideline and to the ‘hospital passport’ initiative that is being jointly created with other charities.

We had desperately hoped that the NICE Guideline would lead to improvements in healthcare across the UK, but implementation has clearly failed in these and other hospitals. The ME Association will be increasing its efforts to work with the NHS and social care providers to bring about these much-needed changes.

Russell Fleming
Head of Communications. The ME Association.

Parliamentary question

Cat Smith, Labour, Lancaster and Fleetwood, 12 April 2024

“To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure hospitals develop treatment pathways for Myalgic encephalomyelitis or chronic fatigue syndrome patients at risk of starvation.”

Parliamentary answer

Andrew Stephenson, Conservative, Pendle, Minister of State for Health and Social Care, 17 April 2024

“It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the National Institute for Health and Care Excellence (NICE). The Department is working with NHS England to develop an e-learning course on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, for healthcare professionals, with the aim of supporting staff in providing better care and improving patient outcomes. This has involved feedback and input from the ME Research Collaborative Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME. The NICE’s guidance NG206 states that people with ME should undertake a dietetic assessment by a dietitian with a special interest in ME, if they are losing weight and at risk of malnutrition.”

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