People say ‘Oh, I think I had that last week’ – Lisa battles illness and stigma
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Like many sufferers of chronic fatigue syndrome (CFS), Lisa Whight lives with the wearisome symptom of being disbelieved.
“I’ve heard it all,” says the 53-year-old former funeral arranger, who has been out of work for six years.
“Because there is no disability to see – unless someone is using walking sticks – it tends to not be taken seriously.
“Sadly, even some people in the medical profession don’t accept it. Years ago it was known as ‘yuppie flu’.
“I’ve had people say to me: ‘Oh, I think I had that last week’.”
As events and fundraising coordinator for support group Chronic Fatiguers Unite, Mrs Whight finds solace in the companionship of other sufferers.
The group was established six years ago and meets in her home town of Ipswich on the first Tuesday of every month.
As well as group meetings, Mrs Whight has access to occupational health therapy and support services from a specialist outpatient clinic in Stowmarket.
She and other sufferers recently received new optimism that, one day, her condition could be effectively treated using a cancer drug.
Experts at the Institute of Food Research (IFR), based at Norwich Research Park, are hoping for a positive outcome from clinical trials being carried out by Norwegian doctors – using the drug Rituximab as a treatment for myalgic encephalomyelitis (ME).
A team from Haukeland University Hospital, in Bergen, recently a gave a public lecture on their research in Norwich, where they met IFR scientists – currently looking for causes and treatments for ME in gut microbiota – to discuss a possible UK trial.
National charity Invest in ME, which hosted the lecture, is working towards funding trials in this country and establishing a biomedical centre of excellence at the research park.
An IFR spokesman said: “The outcome of this trial is critical to determining what we would plan to do in Norwich.
“Until this is known, it is impossible to say what a Norwich trial will consist of, and how or when any recruitment will happen.
“The other element that needs to be in place is the funding, and the charity Invest in ME has been very active in this area, having raised a significant amount of the money needed.”
Mrs Whight, who suffers bouts of vertigo and will not leave home unaccompanied, said she would encourage trials similar to those carried out in Norway.
“I think we would all welcome taking part in a study that could make us better,” she added.
“I would give my right arm to go back to work.
“It took me four years to get any benefits, and every year, they’re on my back. With the introduction of the universal credit system, it could be even worse for people.”
This month’s meeting of Chronic Fatiguers Unite was attended by Dr David Smith – a former medical adviser to the ME Association, who has treated thousands of young sufferers, and advocates treatment with low doses of certain antidepressants alongside a modified physical and mental activity programme.
Dr Smith has published research on the later-life reactivation of viruses previously carried by sufferers, including glandular fever, which Mrs Whight picked up as a teenager.
“We all have similar symptoms but no two sufferers are exactly the same,” she said.
“It has been connected with the symptoms of Lyme disease and lupus, and can happen at any age – but it seems the younger you are, the better chance you have of recovering. I think mine started when I was 16 and had glandular fever.
“Different people take different medication to cope with the pain. It’s harder to beat the feeling of loneliness, when you think you’re the only one suffering.
“It’s not just a feeling of tiredness; but of never feeling refreshed. It’s a bit like trying to charge a phone with a battery that stays drained.
“I can only describe it as a permanent feeling of having been on a long haul flight.
“I sometimes feel tired and dizzy; my memory goes, I can’t concentrate and I itch all over.”
The Norwegian doctors are due to return to Norwich in September with results from the third stage of their trial.
Meanwhile, Invest in ME is funding a PhD at University College London into white blood cell responses to Rituximab, which it hopes will add further value to the Norwegian research.
The NHS describes chronic fatigue syndrome as causing persistent exhaustion that affects everyday life and can not be remedied by sleep or rest.
It is also known as myalgic encephalomyelitis (ME) – although there is debate over the correct term to use – and affects an estimated 250,000 people in the UK.
It can cause long-term illness and disability, but can improve over time – particularly in children and young people.
Anyone can get the condition, but it is more common in women than men, usually developing in the early 20s to mid-40s.
Most cases are mild or moderate, but up to one in four people have severe symptoms, including inability to carry out minimal daily tasks.
It is not known exactly what causes CFS. Various theories suggest a viral or bacterial infection, problems with the immune system, an imbalance of hormones, or psychiatric problems, such as stress and emotional trauma
Some people are thought to be more susceptible because of their genes.