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BBC News: Family calls for feeding change to save Exeter ME patient

BBC News Devon reports on a woman who has severe myalgic encephalomyelitis (ME), as her family share their fears that she could die from starvation if her treatment plan at Royal Devon and Exeter Hospital (RDE) is not changed.

**Trigger Warning: Upsetting Content**

Extracts

Alice Barrett, 25, is at the Royal Devon and Exeter Hospital (RDE) and cannot sit upright and feed herself. They want the NHS to break its policy of syringe feeding patients at an angle of 30 degrees to avoid choking.

Ms Barrett was diagnosed with ME in November 2020 and had the disease moderately, before a major deterioration at the end of April 2022.

She[Rosie Barrett) claims her sister is only getting 600 calories a day on the current feeding plan and that she told her earlier this week “her body is starving”.

The family has spoken to Dr William Weir, who has helped develop clinical guidelines and has experience of treating severe ME.

He said: “They [patients] tend to want to lie flat to circulate blood volume and there is scientific evidence from a number of patients that show this to be the case.

“In the first instance the important thing for any patient in this situation is to feed them.”

BBC News Spotlight South West

ME Association Comment

Dr Charles Shepherd, Honorary Medical Adviser providing the following comment in reference to The Times article from earlier this week which reported on two NHS patients, Alice Barrett (as above) and Sami Berry, who both have severe ME. He said the following:

This is a distressing account of the way in which 2 women with severe and very severe ME/CFS are being treated in hospital. The new NICE Guideline on ME/CFS has laid down clear recommendations for people who are severely and very severely affected, including how they should be cared for by the NHS at home and when they have to be admitted to hospital.

We would strongly suggest that both hospitals get in touch with ME/CFS specialists within the NHS, and with charity experts, so that appropriate care and support can be determined. Enough is now known about this neurological condition for clinicians to be able to provide a high standard of care and management advice.

While individuals should receive care that is tailored to their needs, having additional diagnoses like epilepsy, PoTs, and EDS, is not uncommon for those with ME/CFS and each should be treated accordingly. To hear of the distress from the families of Alice and Sami is deeply shocking.

We hope that The Royal Devon University Healthcare NHS Foundation Trust and The Royal Berkshire Hospital will deliver the care and support that is clearly required, and we wish both families the very best.

The Times: ME patients ‘risk dying of starvation’ under NHS care

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.

Dr Charles Shepherd
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