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ME/CFS patient's treatment in UK health system

Tuesday 10 November 2009

Jeannie Carson This is Kent reports on ME/CFS patient Jeannie Carson (pictured) who has criticised her treatment by the UK's National Health Service and how the NHS views the disease as a psychiatric rather than physical one:

'NHS must not treat ME as mental illness'

A PENSIONER from Tonbridge with chronic fatigue syndrome has slammed her treatment which included a stay in the psychiatric ward of a major London hospital.

Mill Crescent resident Jeannie Carson suffers from ME, and has criticised the NHS's view of the illness which looks at it as a psychiatric condition, with treatment including cognitive behavioural therapy (CBT).

The former Pembury Hospital midwife feels the healthcare system is wrong for labelling it in this way, and says it should be treated as a neurological illness.

The 67-year-old spends most of the day bed-bound and as well as the overwhelming tiredness, she suffers muscular pain, difficulty walking, and feelings of isolation and loneliness.

She has shunned her treatment through psychiatric methods and now gets by with the help of a carer.

"I was very active, I didn't want this ME," she said.

"There are times when I get angry and frustrated because I am unable to be as active as I want to be.

I feel they are being unfair.

"How dare they say it is a psychological illness? I did not ask for this."

Miss Carson is a member of The Grace Charity for ME which sends treatment guidelines to all surgeries in Kent and Medway.

The documents are from Canada, where it is felt that the illness should be treated on a neurological basis.

Miss Carson was diagnosed with ME in 1996 after having three serious viruses.

She alerted doctors to the fact that something was seriously wrong after feeling like she "just wasn't getting over it".

Since diagnosis she has undergone CBT. She feels this has not been effective.

Two years ago she stayed in the psychiatric ward of the National Hospital, where she said she was "the only one that was sane".

"There were nine patients and one was a prisoner," said Miss Carson. "One had tried to jump off London Bridge."

She feels that more research should be carried out into ways of treating ME and there should be more awareness among members of the public.

Dr James Thallon, medical director at NHS West Kent, said: "ME (Myalgic Encephalomyelitis/Encephalopathy) is a debilitating chronic condition and the NHS is constantly striving to improve care for people with this condition.

"At present there is no universally accepted theory about its cause or causes, and the symptoms can be diverse, with wide variations both between individuals and in each person over time.

"Treatment for ME in NHS West Kent is in line with NICE guidance, which emphasises the importance of consultation with the patients and their views in the decision-making process. In certain cases, neurological treatment may be appropriate for ME, and this would be a matter for GPs and their patient to discuss and decide.

"We would encourage anyone with questions about their treatment to speak to their GP."

Anyone wanting to find out more about The Grace Charity can email

The article originally appeared here.



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