An open response from parents and carers of people with Severe ME
A group of parents and carers of people with severe ME have welcomed Prof Edwards’ paper on the ‘Management of Nutritional Failure in People with Severe ME/CFS’, but want to also highlight the need for health professionals to understand the underlying pathology of ME and the importance of maintaining appropriate hydration / fluid balance.
An open response from parents and carers of people with Severe Myalgic Encephalomyelitis.pdf – Google Drive“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.”
“As carers, we strongly believe that the onus should be on acknowledging what is now known and knowable. This alone would strongly refute the notion of a need for a middle ground and would instead focus attention on the need to generate solutions from both evidence-based practice and practice-based evidence for managing symptoms, not only in relation to nutritional failure, but also (but not limited to): orthostatic intolerance, dysautonomia, hypovolemia, autoimmunity, sleep disorders, fluid balance, gastroparesis, mast cell activation, and pain.”
“The paper focuses on nutritional management. However, there is also overwhelming evidence from the lived experience of patients with Severe ME that maintaining appropriate hydration / fluid balance constitutes an equally important challenge. Patients with ME have not only been denied appropriate nutritional management but have also been denied appropriate management of fluids.”
“We believe our group has a unique vantage point and first hand lived experience from which to view this phenomenon.It is our collective view that there is a dangerous lack of understanding and awareness of the underlying pathology, especially in relation to Severe ME in NHS hospitals, which leaves patients vulnerable to harm and serious misunderstandings.
People with ME and their carers have experienced decades of marginalisation, discrimination, neglect, and often even a lack of compassion and understanding from some of the people they turn to for help.
Once again, we very much welcome this contribution that spotlights managing nutritional failure in patients with ME and would ask that the barriers to this and fluid management are scrutinised more closely. We agree with Dr Hemsley that action is indeed required at the highest level to address the need for informed, patient-led and safe care for the loved ones we care for, many of whom currently live with a rational fear of hospital admissions.”
See also:
Management of nutritional failure in severe ME
