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Thornbury teenager speaks out about effects of ME (From Gazette Series)
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Thornbury teenager speaks out about effects of ME
8:30am Tuesday 28th April 2009
A TEENAGER from Thornbury has spoken out about an illness that she says makes her life a misery.
Helen Wood, 19, still lives at home with her family in Thornbury, however, unlike other teenagers Helen’s dream of having her own place and living her own life might never come true.
In 2005, at the age of 14, Helen was diagnosed with myalgic encephalomyelitis or M.E. as it is more commonly known.
Helen said: "Lots of people don’t know what a debilitating illness M.E. can be. It doesn’t just go away you can’t wave a magic wand and it’s gone.
"M.E. is a horrible illness as it stops me doing what I want to do. M.E. stops me having fun in my life.
"People think I do just what I want and they think I should be doing more than I am doing but they don’t understand I can’t do what everyone else does."
M.E., for which there is no cure, can last for years and symptoms can vary from person to person.
Symptoms include persistent and extreme fatigue, muscle and joint pain, headaches, flu-like symptoms, sore throat, swollen glands, concentration and short-term memory problems, sleep difficulties, dizziness and increased sensitivity to light and sound.
M.E. affects around 250,000 people in the UK and unfortunately the illness is difficult to diagnose.
Liz Wood, Helen’s mum, said: "The doctor who diagnosed Helen thinks she may have had M.E. since the age of eight or nine.
"It started with Helen missing school a lot with swollen glands and sore throats. Initially one of the doctors at the health centre thought she was skiving but I knew as her mother that something wasn’t right.
"Helen could be off school for up to two weeks at a time and the doctors kept saying it was a virus."
Due to the illnesses debilitating nature Helen has not been to school in five years which has not only kept her from achieving any GCSEs or A-Levels but has prevented her from forming any social network.
"It is difficult to live with and we all struggle. Sometimes Helen may look well but what she feels inside is very different.
"It is the day to day things that you take for granted that Helen finds very difficult and as a consequence she feels very isolated," said Mrs Wood.
To help try and combat the illness Helen has regular check-ups with her doctor as well as seeing a dietician and a psychologist but next month she is being referred to a M.E. specialist at Southmead hospital.
"We are hoping he can get to the bottom of Helen’s problems and find a way to help her and then hopefully in time she can improve," said Mrs Wood.
Helen has said she also hopes next month will be the beginning of better understanding about M.E. as her appointment coincides with M.E. Awareness week, which runs from May 9 and May 16.
M.E. Awareness week is being organised by charity Action for M.E., which hopes to raise awareness and understanding of the illness.
For more information visit, www.afme.org.uk
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Smiffy, Frome says...
3:47pm Thu 30 Apr 09
Unfortunately for us here is a growing tendency for UK doctors to use M.E./CFS as a dustbin
diagnosis for patients presenting with fatigue from any cause, whether physical
or mental and for a 'one size fits all' psychological treatment to be given. However, M.E. is a discrete neurological illness and has been
classified as such by the World Health Organisation since 1969. It is not
possible to overcome it by increasing activity, changing diet or lifestyle any
more than it would be to overcome other neurological illnesses such as
Parkinson's or M.S. by these means. One of the diagnostic criteria of M.E. is
post-exertional malaise and the more sufferers pushes themselves, or are
pushed by misguided medical staff, to do physical activities the more they will
relapse (often permanently).
M.E. devastates lives & is excruciatingly painful. A quarter of all M.E.
sufferers are house or bed bound, some spending their lives in darkened room
unable to talk, walk or swallow. Sufferers who have died of M.E. have been found
at autopsy to have massive infections of their hearts, central nervous systems
and muscles. Most sufferers never recover.
For over 20 years almost all government M.E. research funding has gone,
outrageously, to psychiatrists, who ( ignoring over 4,000 studies proving it is
a physical illness) insist that M.E. is an 'abnormal illness belief'. This
strange allocation of funds has prevented the discovery of both a diagnostic
test and of effective biomedical treatments. The various bacterium, viruses and
parasites known by American researchers to be causing M.E. ( Human Herpes 6A,
Cryptostrongylus Pulmoni, Parvovirus B19, Epstein Barr, Lyme disease, etc.) are
not being researched or tested for in UK patients, and thus the correct
treatment for these pathogens is not being administered.
Helen may well have an ongoing virus or other pathogen, but unless she has many thousands of pounds for private tests and treatment this will never be treated.I know from private testing which bacterium are causing my symptoms, but cannot afford the private iv antibiotics I need.
The only NHS treatments available for M.E. (totally useless cognitive behaviour
therapy and the graded exercise that all patient charities condemn as harmful and that made me relapse badly)
are psychological and undertaken in clinics where M.E. patients are mixed
together with people with other fatigue causing conditions, and where the staff
are erroneously trained to view M.E. as a mental disorder. This situation is
disgraceful.
The situation for M.E. sufferers in the UK remains very bleak, many existing for
decades in a living hell, but two tiny charities are undertaking biomedical
research that may show the way forward:
ME Research UK
http://www.meresearc
h.org.uk/
and the CFS Research Foundation
http://www.cfsrf.com
/