We are a group of parents and carers of people with Severe Myalgic Encephalomyelitis (ME).
The ages of our loved ones range from mid-teens to 70s. Many of those we care for have
experienced hospital care in the UK or are at risk of an emergency admission due to
challenges maintaining adequate nutrition and hydration at home. Group members share
strikingly similar experiences. We have read Management of Nutritional Failure in People with
Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 (Edwards,
2024), henceforth referred to as ‘the paper’, with interest and welcome the pragmatic
approach in seeking to improve care for those suffering from life-threatening complications
due to ME. We are offering this response as a constructive contribution.
The paper highlights the ‘serious problems with nutrition’ for people with Severe Myalgic
Encephalomyelitis (referred to in the paper as ME/CFS) due to difficulties with eating and
drinking. It also points to the lack of provision of adequate services, misunderstandings /
conflict over diagnosis and approaches to managing severe symptoms.
The paper is presented within a particular context in England where there have been several
recent high-profile cases of young women with Severe ME who have been denied appropriate
management of nutrition and fluids, resulting in further harms. In some cases, this has
resulted in preventable deaths.
Whilst we welcome the paper’s recommendations, our group suggests several additional
factors not included in the preprint, which we see as critical to the analysis of the issues
highlighted. This includes the need to acknowledge the growing body of scientific and clinical
evidence explaining the underlying pathology in patients with Severe ME. We believe this to be
critical to countering the misinformation and bias that often influences clinical and
managerial decision-making about patients with this condition.
Acknowledging the biomedical evidence
Whilst the paper seeks to find a middle ground, it does not reference the biomedical evidence
relating to ME. Although we appreciate the need for pragmatism in improving care for patients,
we feel there are risks inherent in adopting an approach which seeks to find a middle ground
between settled science and the misinformed beliefs of some health care workers and
managers. Indeed, without acknowledgement of the biomedical evidence and a recognition
of appropriate clinical expertise (e.g. Bateman et al. 2021; Montoya et al. 2021; Snell and
Stevens, 2018, Leslie et al. 2023), it is unlikely that there will be a middle ground that patients
and carers can safely accept.
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Despite the prevailing notion of ‘limited evidence’, ‘speculative diagnoses’, ‘unknown
mechanisms’, etc., decades of research (albeit poorly funded) have contributed to the
understanding of ME, with a significantly expanding literature since Covid-19. Pertinent
examples from this year alone include: Appelman et al. (2024); Armstrong et al. (2024); Chen
et al (2024); Eastman (2024); Keller et al (2024); Peluso et al (2024); Pretorius et al. (2024);
Ryabkova, et al (2024); Walitt et al. (2024). The common pathophysiology between post-
COVID syndrome and ME is now well-described, with Arron et al. (2024) providing a cohesive
model which calls for a holistic approach to diagnosing, researching, and treating ‘one of the
most misunderstood conditions in modern medicine’ (Arron et al. 2024).
As recognised by the National Institute for Health and Care Excellence (NICE), (National
Institute for Health Care and Excellence, 2021), Myalgic Encephalomyelitis is indisputably a
biomedical condition for which Graded Exercise Therapy (GET) and variations thereof are
harmful. Keller et al (2024) spotlight the ‘robust evidence of disrupted immune function,
neural activity, and metabolic function’ and ‘clinical evidence of impaired energy production
and recovery’.............................................
