1.17.11Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss because of:
poor appetite, for example linked with altered taste, smell and texture
difficulty swallowing and chewing.
Follow the recommendations on screening for malnutrition and indications for nutrition support, in the NICE guideline on nutrition support for adults.
1.17.12Give advice to support people with severe or very severe ME/CFS, which could include:
eating little and often
having nourishing drinks and snacks, including food fortification
finding easier ways of eating to conserve energy, such as food with softer textures
using modified eating aids, particularly if someone has difficulty chewing or swallowing
Why: The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink.
How to Support: Some patients with very severe ME will require tube feeding, either enterally or parenterally.
Problems: There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need.
The study questionnaire recognised previously encountered difficulties experienced when researching severe ME. It considered the issues likely to prove a barrier to completing the document and tried to maximise participation, whilst reducing the risk of health deterioration.
The aims of the study were to explore whether, if the necessary support was provided and a modified extension to the usual timescale given, patients with very severe ME would be enabled to participate in research.
The Enteral and Parenteral Feeding Questionnaire by 25% ME Group in Appendix A below and within the 2022 paper outlining the difficulties for those with Severe and Very Severe ME in completing a survey on malnutrition, a survey entitled 'Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model, please see here
|Sections of the Enteral and Parenteral Feeding Questionnaire 2019 by 25% ME Group|
Trigger Warning: Please be aware of upsetting content ahead
Case 1 from the above linked study:
How to Support Patients with Malnutrition Problems
From the 25% ME Group at The Malnutrition Task Force Sharing Practice Day:
"Our advocacy worker, Helen Baxter, did a talk on preventing avoidable malnutrition in severe ME at The Malnutrition Task Force Sharing Practice Day. The Malnutrition Task Force focus on malnutrition in the elderly and Helen has drawn on the comparisons between the nutrition and care needs of the elderly and people with severe ME."
Please see 12 minute video entiltled Preventing Avoidable Malnutrition in Severe ME