‘Futures on hold’ for young ME sufferers

Mark Ellis

Sophie Ellis

First published in News

PATIENTS and doctors in Oxfordshire have called for new specialist services to help young people suffering from ME.

Oxfordshire ME Group for Action (Omega) claims the county’s lack of help has forced more than 300 children to “put their futures on hold”.

Research carried out by the group and Oxfordshire Local Involvement Network (LINk) found more that two thirds of GPs do not think services are good enough.

Omega said the doctors would also support a “multi-disciplinary team” to help youngsters cope with ME, which is also called chronic fatigue syndrome (CFS).

At present the Oxfordshire Community CFS/ME Team is only able to treat children 14 and above.

Mark Ellis, from Elton Road, Banbury, has tried to find help for his 18-year-old daughter Sophie, who has suffered from ME for the last nine years. She has been in Banbury’s Horton Hospital for the past four months. Her father said even watching TV or talking on the phone can leave her exhausted.

He said: “When Sophie fell ill, although supportive, doctors simply did not have the knowledge or understanding of the illness to recognise it.

“Because it took six years for her to receive a confirmed diagnosis of ME, her doctors didn’t know how to treat her and her condition became worse over time.

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“For the past three years she has been severely affected and has been in hospital for a total of seven months in the last year being fed by tube to keep her alive.

“If ME had been diagnosed when she first became ill following a gastric virus nine years ago, and we had received good advice, there is no doubt that she would not have become so severely ill.

“Better education for GPs and a community service for children like Sophie are vital to prevent this happening to another child.”

Omega member Patricia Wells says: “Our GPs are under great pressure and we are very grateful to those who filled in our survey.

“We are pleased that they recognise this horrible illness as a clinical entity. Many GPs are very helpful to patients with ME. They say they need better information and this is confirmed by our members who experience different levels of knowledge and understanding.

“Changes are needed to improve services for children and adults, to enable them to receive the medical support that they need.”

Ian Bottomley, an assistant director with the Oxfordshire Clinical Commissioning Group, said only providing treatment for people aged 14 and over was in accordance with national guidelines.

He added: “Oxfordshire Clinical Commissioning Group is currently reviewing this and is also putting together a formal response to the Omega and LINk report. This will be delivered at the health overview and scrutiny committee meeting on February 21.”

Comments (2)

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5:22pm Sun 17 Feb 13

hallelujah says...

I feel for Mr Ellis and his Daughter however there is NO treatment for ME/CFS yet. Graded exercise and Cognitive behavioural therapy are not treatments for myalgic encephalomyelitis as the PACE trial showed. These treatments may be affective for Chronic fatigue syndrome or Post viral fatigue, but we need meaningful research and a decent project group to REALLY be working on these disease, not messing about with wasted funding which is what has happened in the last ten years. There are a whole community of people on facebook fighting for a change in the nice guidelines which is really what needs to happen, and plenty of trial medications have seen people have a better quality of life like Ampligen and rituximab. The funding needs to be directed away from psychiatry and given to interested scientists to stop this dillydallying around with peoples lives! Invest in ME are our best hope for that.
I feel for Mr Ellis and his Daughter however there is NO treatment for ME/CFS yet. Graded exercise and Cognitive behavioural therapy are not treatments for myalgic encephalomyelitis as the PACE trial showed. These treatments may be affective for Chronic fatigue syndrome or Post viral fatigue, but we need meaningful research and a decent project group to REALLY be working on these disease, not messing about with wasted funding which is what has happened in the last ten years. There are a whole community of people on facebook fighting for a change in the nice guidelines which is really what needs to happen, and plenty of trial medications have seen people have a better quality of life like Ampligen and rituximab. The funding needs to be directed away from psychiatry and given to interested scientists to stop this dillydallying around with peoples lives! Invest in ME are our best hope for that. hallelujah
  • Score: 0

5:23pm Sun 17 Feb 13

hallelujah says...

I feel for Mr Ellis and his Daughter however there is NO treatment for ME/CFS yet. Graded exercise and Cognitive behavioural therapy are not treatments for myalgic encephalomyelitis as the PACE trial showed. These treatments may be affective for Chronic fatigue syndrome or Post viral fatigue, but we need meaningful research and a decent project group to REALLY be working on this disease, not messing about wasting funding which is what has happened in the last ten years. There are a whole community of people on facebook fighting for a change in the nice guidelines which is really what needs to happen, and plenty of trial medications have seen people have a better quality of life like Ampligen and rituximab. The funding needs to be directed away from psychiatry and given to interested scientists to stop this dillydallying around with peoples lives! Invest in ME are our best hope for that.
I feel for Mr Ellis and his Daughter however there is NO treatment for ME/CFS yet. Graded exercise and Cognitive behavioural therapy are not treatments for myalgic encephalomyelitis as the PACE trial showed. These treatments may be affective for Chronic fatigue syndrome or Post viral fatigue, but we need meaningful research and a decent project group to REALLY be working on this disease, not messing about wasting funding which is what has happened in the last ten years. There are a whole community of people on facebook fighting for a change in the nice guidelines which is really what needs to happen, and plenty of trial medications have seen people have a better quality of life like Ampligen and rituximab. The funding needs to be directed away from psychiatry and given to interested scientists to stop this dillydallying around with peoples lives! Invest in ME are our best hope for that. hallelujah
  • Score: 0

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