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1) 🇳🇿 A survey in New Zealand among 333 ME/CFS and Long Covid patients found that half of the respondents had experienced food insecurity in the past 12 months.

2) Food insecurity was defined as ‘sometimes’ or ‘never’ being able to afford to eat properly, or ‘sometimes’ or ‘always’ having food run out, eating less, eating less variety due to cost, relying on others for food or using food grants/banks.

3) Food insecurity was more common in young people and increased with illness severity, but among the very severe, it was actually lower (potentially due to higher support and provision in this group).

4) Financial hardship was one reason for food insecurity, as only 7% of the respondents were able to work full-time. Patients described how they had to reduce spending on food because of their medical expenses: "I have to balance my grocery shopping with my health bills."

5) But this wasn't the only barrier to good nutrition: physical limitations, such as not being able to go shopping or prepare meals, also affected patients. Many felt guilty for relying on family, friends, or neighbours for their groceries or meals.

6) One person, for example, explained: "Rely heavily on family – not able to work, so had to move into my parents’ home and rely on them to provide food." Others were reliant on flatmates, neighbours, or soup delivered by the ME Respite charity.

7) 18% reported relying on deliveries of prepared food. Also common was that patients bought less nutritious food because those are cheaper and easier to prepare. Some ate less or skipped meals, e.g., when their medical bills were high.