ME drove my daughter to suicide
by ANDREA PERRY, femail.co.uk; July 21, 2012via 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
The Guardian, Mon 12 Dec 2011 23.30 GMT
Far more children than previously thought miss a lot of schooling because of chronic fatigue syndrome which has not been diagnosed, according to research.
The illness is identified as a significant source of absenteeism and the study suggests more efforts need to be made to identify sufferers. Around one in 100 secondary age pupils suffer from the condition, also known as myalgic encephalomyelitis (ME), the findings in the medical journal BMJ Open claim. With 3.3 million pupils in state-funded secondary schools in England, that means that 33,000 children aged between 11 and 16 may have it, according to calculations done for the study. This is far higher than two previous surveys which estimated that just 0.06% of schoolchildren have chronic fatigue and another which found only seven sufferers among 8,839 children in 10 schools. The new figure is also higher than estimates of 0.1% to 0.5% for the prevalence of ME generally.
The conclusions are based on a study of 2,855 pupils aged 11-16 at three secondary schools in and around Bath, of whom 461 had missed 20% of their lessons, or at least a day a week, over a six-week period. Some 315 of the 461 had an identified reason for such regular absenteeism, such as a medical illness, a bout of ill-health or persistent truanting, and three of the 315 had already been diagnosed as having CFS. Of the 146 others who had unexplained absence, 112 attended a school clinic for an assessment, and of those 48 were then invited to a specialist CFS/ME clinic, of whom 42 attended. Two of those had also been previously diagnosed with CFS, though their school had not been told, and a further 23 were also diagnosed as having the illness.
That gave a total of 28 pupils out of the 2,855 who were classed as having CFS, or a rate of 1%.
"This project suggests that undiagnosed chronic fatigue syndrome/ME may be an important and under-appreciated cause of school absence in children aged 11-16 years," said the authors, led by Dr Esther Crawley. She is a consultant senior lecturer at Bristol University and a paediatrician who runs the country's largest clinic for young people with CFS, at the Royal National Hospital for Rheumatic Diseases in Bath.
"GPs have always thought that this is really rare in under-16s. But this paper shows that it's not that rare," said Crawley. Schools should assess pupils who are missing 20% or more of days, consider CFS as a likely cause and refer them to a specialist service, she added.
Schools should start screening pupils who miss at least 20% of lessons for signs of CFS, especially as the average length of time between the onset of symptoms and diagnosis is 22 months, she added.
A spokeswoman for Action for ME said: "Dr Crawley's findings suggest that many more pupils than previously estimated may have ME. We estimate that there are 250,000 people in the UK with ME and that as many as 25,000 of these are children and young people. The youngest person to be diagnosed ever in the UK was two."
The Department for Education reacted cautiously to the findings, believing it unwise to draw any conclusions about the picture nationally from a study of just three schools, especially with a condition that is hard to diagnose accurately.
A spokesman said: "Absence from school, even for one day, is hugely detrimental to pupil's prospects. Where there is an underlying medical problem, schools and the local authority should work with parents to minimise the impact of the long term illnesses on a pupil's education."
Peter White, a professor of psychological medicine at the Barts and The London School of Medicine and Dentistry at Queen Mary University of London, said: "This well-conducted study shows that schoolchildren who miss school without explanation fall between the stools of school and the health service, and do so for two main reasons: emotional ill-health and chronic fatigue syndrome (CFS).
"Both of these can delay or even prevent a child from reaching their educational and personal potential."
Ruth Haughton fell ill just before taking her GCSEs. "I initially got glandular fever three weeks before my GCSEs in May 2005, when I was 15, and that mutated into ME. I was diagnosed within eight weeks, which is unusually quick. The exam board said that I had to try to take at least one of my exams. I ended up taking three but, because I was bedbound with severe muscle fatigue, I had to take them at my kitchen table, as I couldn't leave the house. I was pretty delirious, in a feverish stupor, and could barely read. I think I got ill because I'm a perfectionist and was pushing myself to get an A-star in all my 10 subjects. But it then took me three years to get just one A-level, in art, and I had to abandon my ambition of doing medicine." I'm now doing the foundation year of a geology degree instead. Yes, ME was devastating for me. But it's also brought some positives, like teaching me that I can't push my body too hard or it will break."
Statistics Canada releases new data on CFS, FM and MCS
June 21, 2011
The first data from the 2010 Canadian Community Health Survey (CCHS) was released today.
The data show that the number of Canadians reporting a diagnosis of Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities has increased markedly since 2005. Number of Canadians reporting a diagnosis of : CCHS 2005 CCHS 2010 % change
Target Population 27,125,065 28,890,710 7%
- Chronic Fatigue Syndrome 333,816 413,370 24%
- Fibromyalgia 389,782 446,586 15%
- Multiple Chemical Sensitivities 598,585 784,789 31%
A 2010 data file with the CFS, FM and MCS variables is now available to government and academic institutions. No information about these illnesses, other than what is in the above table, has been made available to the National ME/FM Action Network or the public at this time.
Margaret Parlor, President
National ME/FM Action Network
note to consicer: the very severely ill, who are unable to fill out a census form, are likely missing from these statistics as I was in 2005. In 2010, I did not even receive a census form. In 2011 I received and completed a census form, but it was the short version and didn't ask about health...
-Priya, ME/CFS Assist