BBC News: Father of woman with ME/CFS scared she will ‘die in hospital’

**Trigger Warning: Upsetting Content**

A man says he is terrified his daughter will die in hospital due to what he says are failures in care by NHS staff.

By Liz Jackson


Pierre Naoum, 62, from Hounslow in west London, says his daughter Carla, 23, who was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is in severe pain and now weighs about 5st 9lbs (35kg) – down from 8st 3lbs (52kg)after being admitted to West Middlesex Hospital due to problems with her feeding tube.

Even though there are no ME/CFS specialists at West Middlesex University Hospital (WMUH) in Isleworth, west London, Mr Naoum says a psychiatrist assigned to oversee her care has insisted on removing accommodations for her condition such as reduced light, has suddenly reduced her opioid dosage to nothing, and told them she needs to “calm down”.

During the pandemic Mr Naoum says Carla's condition “dramatically deteriorated” and she now struggles to see, speak, move and eat without pain, needing strong painkillers to get through the day.

Since January, Carla has required a nasogastric feeding tube but he says there were repeated delays in changing her tube and Carla was experiencing extreme pain, screaming and vomiting when she was fed. The family took her to WMUH in March when her tube had not been changed for almost six months by another service.

Mr Naoum says he questioned the quality of care at WMUH when a staff member read Carla's notes soon after her admission and asked him if she “screamed all the time”, to which he replied “only if she is in pain”. Shortly afterwards, Mr Naoum says the hospital transferred oversight of her care to a hospital psychiatrist, and he alleges several “serious mistakes” followed.

The first of these came when the NHS team changed her feeding tube to one “thicker than the first one” – from a size six to a size 10 – and increased the amount she was fed from almost nothing to 1.5 litres within a week.

Mr Naoum said his daughter “started to scream, scream, scream” from the “pain of the tube, pain of the sudden huge quantity, with the stress”.

The team also altered the method and dosage of her lorazepam and oxycodone pain medications, injecting them all at once rather than via tablets spread out across the day. Shortly afterwards Mr Naoum said his daughter suddenly “lost consciousness for about six hours” and then the psychiatrist decided to stop the medications altogether, “straight away, suddenly”.

Dr Charles Shepherd worked in a variety of hospital posts and is a medical adviser to the ME Association, as well as being a former member of the 2018-2021 NICE guideline committee, which helped develop the current guideline for ME/CFS.

He has told BBC London much of the guidance for pain management in ME patients refers to other NICE guidance for neuropathic (nerve) pain but is clear about the need to taper off opioids like oxycodone.

“As far as withdrawal or changing pain medication, then this always has to be done in a very sort of gradual, step-wise way,” he says. “It is a gradual process and not a sudden process.”

Dr Shepherd says a lack of specialist ME/CFS treatment centres means patients with severe ME and feeding problems “are often being admitted to hospital under the care of a physician and a team who may well have no knowledge or experience of dealing with people with severe ME”.

Such ME/CFS complications are “being misdiagnosed as being an eating disorder and as psychological, instead of a physiological medical condition, so the treatment is then based on a psychiatric approach – and this is where things really run into problems,” he adds.

Dr Shepherd continues:

In cases where doctors are convinced ME patients need to increase their tolerance or learn to calm their reactions, “I think they ought to read what we put in the NICE guideline“.

“One of the specific things we put in the NICE guideline was that people with this – especially at the severe end of the spectrum – are very hypersensitive to light, to sound, to touch, to movement, temperature, changes,” he explains.

“All these things must be taken into consideration if someone goes into hospital, so they really need to be in a very low-intensity environment.”

He adds that if a loved one or carer had already explained to medical staff “what is going to upset that patient, make them worse”, then “these things have to be taken into consideration” as advised in the NICE guideline.

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Dr Charles Shepherd
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