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Complications from ME led to death of teenager

By Burton Mail  |  Posted: March 31, 2012

Comments (36)

A TEENAGER who battled with a complex health condition almost her whole life died suddenly at the age of 18, an inquest has heard.

Victoria Webster, of Martins Lane, Hanbury, suffered with a debilitating condition called myalgic encephalopathy (ME) since she was a baby, although she was only officially diagnosed with the condition in 2008, at the age of 14.

An inquest held at Burton Town Hall was told that over the years Victoria and her family faced significant problems with various public bodies and agencies because of the difficulties of diagnosing ME and widespread misunderstanding of the condition.

Victoria had a very severe form of ME which made her hypersensitive to light and noise, to the point that she was bedbound and had to have her bedroom completely in the dark and the windows sound-proofed.

She also suffered with dietary intolerances and had trouble controlling her body temperature.

Her body would often feel extremely painful to the extent where she couldn’t even be touched, clip her nails or brush her hair.

In September, Victoria, who missed the vast majority of her school life because of the condition, had a cordial drink which caused a severe reaction where her whole body sbecame swollen. It took some time for her to recover from the reaction, but she appeared to be making good progress.

Her mother, Kay Webster, who described Victoria as ‘bright and intelligent’, told the hearing: “The night before her death, I stayed in her room to keep a check on her because she was having severe pain in her back and eyes, but in the early hours of the morning on September 22, she started developing breathing difficulties so I called for an ambulance.”

On arrival, medics found Victoria suffering cardiac arrest and she was pronounced dead shortly after at 5.16am.

Victoria’s death was said to have come as a ‘massive shock’ to the whole family.

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  • Burton Mail  |  May 16 2012, 8:16PM

    This never should have happened. We need to research all these neuro endocrine immune disorders. I think based on the symptoms listed here that she most likely had some tick borne pathogens and am furious that the health care system abandoned her. I hate to say this but if this were my child I would demand that they figure out exactly what was in her. They ignored her in life and the parents should have some closure. Bartonella, Borrelia, Coxssackie Viruses, Babesia can all affect the heart but also ME can cause this as well. Time to get some much needed answers. I am keeping the whole family in our prayers at this horrible time.

  • Burton Mail  |  April 26 2012, 5:50PM

    my prayers go out to her family! this is such a hard thing to go through, so sorry!, my daughter also faced this illness, with the same difficult issues Victoria, a very scary illness, the misunderstanding of medical and family makes you all alone! please help these people, be there for them to support them in anyway you can, just love them! love & hugs from the USA!~ Christ Jesus cares about you!

  • Burton Mail  |  April 22 2012, 8:22AM

    I am so sorry to hear about her death! I am a mother of a sick son Adam 12 years,in Sweden he been sick for soon 4 years and doctors and socialservices are treahtening to take him , they keep suspecting me to make / keep him sick . They dont belive ME exist and all the psykologist agre. Just wanted to tell everyone how crazy it can get!

  • Burton Mail  |  April 20 2012, 11:22AM

    R.I.P Victoria ,sleep tight ,thoughts go out to your family at this very sad time .I am a sufferer myself and its about time this illness was taken seriously to prevent further people suffering and dying from this debilitating cruel condition

  • Burton Mail  |  April 20 2012, 11:22AM

    R.I.P Victoria ,sleep tight ,thoughts go out to your family at this very sad time .I am a sufferer myself and its about time this illness was taken seriously to prevent further people suffering and dying from this debilitating cruel condition

  • Burton Mail  |  April 18 2012, 9:02PM

    Oh my heartfelt thoughts are with this family.What Victoria lived through,then died from,is the stuff of Hades.I speak as a severe M.E. sufferer since 1991,and sadly say that things have not changed in that time in the "medical profession"s approach and so-called treatment.Victoria is away from a living Hell.I hope the family are coping as well as possible. Loving thoughts to you all. xx

  • Burton Mail  |  April 15 2012, 3:11AM

    To the Webster family our thoughts are with you and hearts cry for the loss of Victoria. We thank you with all our heart for allowing Katie Bowler to write this moving article in the Burton Mail. Our daughter has severe ME and we are using articles such as this to demonstrate the serious nature of ME. We will not let Victorias death be in vain. Thank you and love from Australia.

  • Burton Mail  |  April 15 2012, 2:36AM

    Hopefully the NHS will stop abusing ME patients at some point before too many more people are killed by this devastating Neuroimmune disease.

  • Burton Mail  |  April 13 2012, 11:27PM

    My heartfelt thoughts are with Victoria's family and friends. God bless and rest in peace Victoria as I know too well that this horrendous disease is a living hell for those who have it and those caring for us. The government need to act quickly and stop lives being ruined and give the support that is needed for such a seriously debilitating disease

  • Burton Mail  |  April 11 2012, 10:03PM

    Thank you for treating this horrendous illness seriously and helping to raise the awareness of severe ME. Please let these deaths not be in vain and help convince governments worldwide to help our children, partners and parents unlucky enough to be affected by ME.