ME drove my daughter to suicide
by ANDREA PERRY, femail.co.uk; July 21, 2012
via Daily Mail
Fiona Smith had a bright future ahead of her as a landscape architect when she was struck down with the debilitating illness chronic fatigue syndrome - also known as ME
After a courageous nine-year battle to get help for the illness, which left her severely disabled and often bed-ridden, Fiona could take no more and took her own life in November last year.
She was just 31.
Now her mother Trish has spoken bravely for the first time of the daughter who she described as 'my best friend, adviser and confidante.'
Mrs Smith, of Bristol, broke her silence at a launch of a new report which revealed there is a major suicide risk amongst ME sufferers.
The report reveals a catalogue of failure and discrimination through the NHS and social services towards the 150,000 patients diagnosed with the illness.
The document highlights, in particular, the problems encountered by people who are most severely affected by CFS/ME. Many of those involved in the study have been confined to their homes or even bed-ridden for up to 10 years.
Conducted by Action for ME, the leading UK charity, it is the largest study published into ME and questioned 2,300 sufferers.
It found that:
• 51 per cent had felt suicidal as a result of the extreme pain of the illness coupled with a lack of support from the medical profession.
• 65 per cent had received no advice from their GP on managing the illness.
• 33 per cent had to endure a wait of more than 18 months before being diagnosed with ME, despite evidence that early diagnosis can help recovery.
Despite displaying classic symptoms of the illness, it took 19 months before Fiona Smith was suspected of having CFS/ME and a further two months before a formal diagnosis was confirmed. She became ill in February 1992 after a flu virus and shortly afterwards was so ill that she had to withdraw from her post-graduate diploma course.
Fiona deteriorated, becoming bed-ridden in July 1994 and often had no voice, was weak and in so much pain that she could do little for herself.
Over the next two and half years she improved very slightly but still was mainly bed-ridden and unable to wash or feed herself. Without professional advice she plateaued at this stage for two years.
After a battle with her local health authority, who initially refused funding, she was referred to an in-patient unit in Romford where she made a slow but steady improvement. But a series of relapses set her back nearly five years.
She had become so weak that she was too frail to attend six-monthly hospital appointments with the local consultant and instead her mother went to update him on Fiona's state.
He could offer no advice and in summer 2000 he stopped seeing CFS/ME patients and said that Fiona's GP would have to oversee her care. The GP had not seen another case as severe and was unable to help.
Mrs Smith said: 'By last November the future looked bleak. Now dependent on others for virtually everything - despite nearly nine years of day to day struggle to overcome the illness - it seemed that Fiona decided, quite suddenly, that she had had enough.
'Somehow she found the courage and the strength to hang herself from the curtain pole in her room.
'Why is it that some patients, despite maintaining excellent personal motivation and accepted as not having psychological problems or depression, steadily deteriorate to indefinite total dependency on carers?
'Why do they fail to respond to hospitalisation or professional interventions, which help others?They still seem to be a mystery to the medical profession but inevitably become forgotten as new patients emerge. I feel this category is seriously neglected and badly needs highlighting.
'The undertaker in our small village had handled three other ME suicides in recent years.
'There are many more like Fiona who are still patiently struggling and we must help them.
'The absence of a cure can be accepted but there is no excuse for such patients to feel forgotten and invisible as so many do.'
The Chief Medical Officer working group on CFS/ME is due to report on the most effective methods of treatment later this year.
Tony Wright MP, Chairman of the All Party Parliamentary Group on CFS/ME presented the report at today's launch.
He said: 'ME is a complex, much misunderstood illness. My post bag is full every week with people around the country in despair because of this illness. There has to be more money put into research.'
The illnesses cost the public purse £4 billion each year. Yet just £250,000 is spent on research.
Three times as many women suffer CFS/ME than men. Many girls under the age of 18 contract the condition, but there is no research carried out into the illness in childhood.
Read more: http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html#ixzz21HNf3iJN
by ANDREA PERRY, femail.co.uk; July 21, 2012
via Daily Mail
Fiona Smith had a bright future ahead of her as a landscape architect when she was struck down with the debilitating illness chronic fatigue syndrome - also known as ME
After a courageous nine-year battle to get help for the illness, which left her severely disabled and often bed-ridden, Fiona could take no more and took her own life in November last year.
She was just 31.
Now her mother Trish has spoken bravely for the first time of the daughter who she described as 'my best friend, adviser and confidante.'
Mrs Smith, of Bristol, broke her silence at a launch of a new report which revealed there is a major suicide risk amongst ME sufferers.
The report reveals a catalogue of failure and discrimination through the NHS and social services towards the 150,000 patients diagnosed with the illness.
The document highlights, in particular, the problems encountered by people who are most severely affected by CFS/ME. Many of those involved in the study have been confined to their homes or even bed-ridden for up to 10 years.
Conducted by Action for ME, the leading UK charity, it is the largest study published into ME and questioned 2,300 sufferers.
It found that:
• 51 per cent had felt suicidal as a result of the extreme pain of the illness coupled with a lack of support from the medical profession.
• 65 per cent had received no advice from their GP on managing the illness.
• 33 per cent had to endure a wait of more than 18 months before being diagnosed with ME, despite evidence that early diagnosis can help recovery.
Despite displaying classic symptoms of the illness, it took 19 months before Fiona Smith was suspected of having CFS/ME and a further two months before a formal diagnosis was confirmed. She became ill in February 1992 after a flu virus and shortly afterwards was so ill that she had to withdraw from her post-graduate diploma course.
Fiona deteriorated, becoming bed-ridden in July 1994 and often had no voice, was weak and in so much pain that she could do little for herself.
Over the next two and half years she improved very slightly but still was mainly bed-ridden and unable to wash or feed herself. Without professional advice she plateaued at this stage for two years.
After a battle with her local health authority, who initially refused funding, she was referred to an in-patient unit in Romford where she made a slow but steady improvement. But a series of relapses set her back nearly five years.
She had become so weak that she was too frail to attend six-monthly hospital appointments with the local consultant and instead her mother went to update him on Fiona's state.
He could offer no advice and in summer 2000 he stopped seeing CFS/ME patients and said that Fiona's GP would have to oversee her care. The GP had not seen another case as severe and was unable to help.
Mrs Smith said: 'By last November the future looked bleak. Now dependent on others for virtually everything - despite nearly nine years of day to day struggle to overcome the illness - it seemed that Fiona decided, quite suddenly, that she had had enough.
'Somehow she found the courage and the strength to hang herself from the curtain pole in her room.
'Why is it that some patients, despite maintaining excellent personal motivation and accepted as not having psychological problems or depression, steadily deteriorate to indefinite total dependency on carers?
'Why do they fail to respond to hospitalisation or professional interventions, which help others?They still seem to be a mystery to the medical profession but inevitably become forgotten as new patients emerge. I feel this category is seriously neglected and badly needs highlighting.
'The undertaker in our small village had handled three other ME suicides in recent years.
'There are many more like Fiona who are still patiently struggling and we must help them.
'The absence of a cure can be accepted but there is no excuse for such patients to feel forgotten and invisible as so many do.'
The Chief Medical Officer working group on CFS/ME is due to report on the most effective methods of treatment later this year.
Tony Wright MP, Chairman of the All Party Parliamentary Group on CFS/ME presented the report at today's launch.
He said: 'ME is a complex, much misunderstood illness. My post bag is full every week with people around the country in despair because of this illness. There has to be more money put into research.'
The illnesses cost the public purse £4 billion each year. Yet just £250,000 is spent on research.
Three times as many women suffer CFS/ME than men. Many girls under the age of 18 contract the condition, but there is no research carried out into the illness in childhood.
Read more: http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html#ixzz21HNf3iJN
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