Ashleigh to tell her own story | ITV News Anglia | 3 October 2013

September 30, 2013

To view this brief film, please click on this link:

Ashleigh Lovett loves music and sport, but two years ago she was struck down with an illness that made following her passions much more difficult.

“When I was 15 I began to get headaches, tiredness, and had no energy. I lost the use of my legs and had to be admitted into hospital where I was treated for suspected meningitis,” says Ashleigh.

“After two weeks I was sent home and I gradually improved. But soon I declined again and that’s when my consultant gave me the diagnosis of ME.”

The 17-year-old from Harwich is now working with Fixers – a charity which supports young people to ‘fix the future’, to show teenagers what life with ME is really like and to give others with the condition support.

A report about her campaign will feature on ITV News Anglia on Thursday 3 October from 6pm.

Jane Colby, Executive Director of The Young ME Sufferers Trust, explains:

“ME stands for Myalgic Encephalomyelitis; these days it tends to be called chronic fatigue syndrome.

“Classic ME has always been known as virally triggered. It is the most common cause of long term sickness absence in school from children and in teachers.

“ME can affect anyone, but there is a peak in the middle years, there’s another peak in the early to mid-teens and you do tend to find more girls than boys with the condition.”

Ashleigh wants people to understand how difficult it can be living with the condition.

“You never know the next day is going to be like; you don’t know if you’re going to be well or if you’re going to be bed bound.

“The fatigue is one of the main factors, and heavy limbs and painful legs.

“People didn’t believe I was ill at first as there is no physical sign of it. People used to say I was spoilt and lazy, which hurt me.

“To make people understand how I am feeling I want to get people to wear weighted suits so they can experience for themselves how it feels to have ME”

In her film, Ashleigh speaks to fellow ME sufferer Jodie Cleary, 19, and from Chelmsford, about her project.

“I was diagnosed when I was 11. No one believed me; until I was diagnosed, and still after that, people would just go: ‘get up, you’re fine, put some clothes on’,” Jodie says.

“But for someone who has ME, even to stand in the shower for seven minutes could be awful.

“To get better, I needed support. I needed people to say: ‘It’s okay, I had it and guess what, I’m married now and I’ve got kids’. I needed other people to tell me that I could get out of this hole.”

Ashleigh hopes her project will help stop other people from feeling isolated like she did.

“I really hope my Fixers project will not only help ME sufferers know that they’re not alone and there is help out there, but also educate the general public about the condition.”

Fixers is charity which supports young people across the UK to take action and change things for the better, addressing any issue they feel strongly about.

How each Fixer tackles their chosen issue is up to them – as long as they benefit someone else.

The award-winning Fixers project has already supported over 9,000 young people to have an authentic voice in their community.

Each Fixer is supported to create the resources they need – such as films, websites or print work – to make their chosen project a success.

Thanks to a grant from the Big Lottery Fund, Fixers aims to work with a further 19,000 young people over the next three years.

4 thoughts on “Ashleigh to tell her own story | ITV News Anglia | 3 October 2013”

  1. hi ashleigh
    this is very brave and good of you to do.
    i hope you will please highlight the pitiful funding situation all around the world.
    only rigorous research will bring proper treatments-patients need to hold their elected officials accountable and campaign vigorously-as much as their health will permit- for more research funds to be made available to serious biomedical ME researchers.

    in december i will have had ME for 20 years, and not all that much progress has been made.

    patients, families and their friends please donate to responsible research sponsors or organizations like the MEA. This is essential in order to reverse the deteriorating ME researcher climate -grant applications constantly turned down by grant issuing bodies like the nih in the us or their equivalent in the uk.

    we need to attract high calibre resarchers into the field-its desparately urgent

    please everyone be wary of snake oil salesmen.
    because me is so devastating and at this point in time, untreatable by moderm medicine,
    a whole industry of predatory purveyors of false hope, has emerged.

    be very skeptical if someone promises you a treatment that will do wonders for your ME.

    please support proper research efforts.otherwise we will be dooming each other to a lifetime of disability, pain suffering, incapacity

    jeremy bearman
    cape town

  2. I do know I am not alone in having ME – but I also know there is absolutely no help “out there” at all.
    When I read a “recovery story”, I assume misdiagnosis, or at the very best of hopefulness regarding real ME, somebody very young who had the opportunity to rest up completely from the start, and folk to care for them.

    It isn’t fair to represent us as able to recover – it just causes a great deal of hopelessness and despair.

  3. I agree with peggy-sue. Having been severely affected with M.E. for many years, have tried everything including physiotherapy and CBT for a year in the late 1990’s, I am left feeling my lack of recovery is my fault and that I’ve failed even though I’ve tried hard to gain some recovery and quality of life.
    M.E. in the media is very rarely portrayed as the devastating illness that it is – I understand that people when they first become ill and especially when young, as I was, have to have the hope that they will recover but the balance of publicity must be right.
    A carer who I’d not seen for about a year visited the other week and her comment was ‘are you still ill. I thought you’d be better by now. Surely they can do something with you – have you tried self-help?’ leaving me feeling I’ve failed.
    At times I’ve not wanted to admit that I suffer from this illness, as you can be made to feel ashamed of having it in the first place and then that you’re still ill.

  4. Ashleigh has only been ill for 2 years – she is still young, she really does still have hope of making a very good recovery. I hope with all my heart that she does.

    If this film can raise awareness so that other newly diagnosed, young folk can get proper rest at the beginning, it will be a truly wonderful achievement. So many lives can be rescued.

    It still paints a bad image of us oldies who have been ill for so long that we have no hope, and causes us to despair more. It’s a bit of a double-edged sword.

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