‘I got ME and thought: ‘This is the end’ | The Times | 2 November 2016

From The Times, 2 November 2016. Story by Janet Eastham.

Midway through London Fashion Week in 2014, Emma Franklin, a 23-year-old aspiring fashion journalist, realised she was seriously unwell.

She had been diagnosed with chronic fatigue syndrome (CFS) as a teenager, but had tried to overcome the disease using willpower. During the fashion designer Eudon Choi’s show she realised her body could no longer keep up. It took all her strength to leave the venue without passing out.

By January this year Franklin’s condition had reached its nadir. She had been bed-bound for months, was unable to stand without fainting and her arms and legs were frequently paralysed. She weighed six and a half stone and muscle tremors in her chest caused her upper body to convulse.

“I was constantly gasping for air; it felt like my body was being forced underwater,” Franklin says. “When I thought it was the end it was such a weird physical sensation. I realised I could actually feel whatever it was inside me taking over my heart,” she continues calmly, her face flushing as she begins to cry. She remembers her GP saying: “Your heart and other organs are shutting down; this happens to people when they reach the end of their life. What happens to 80 and 90-year-olds is happening to you.”

Not only can chronic fatigue syndrome — also known as myalgic encephalomyelitis or ME — cause disabling symptoms, it is also poorly understood by doctors and often stigmatised by the public. Scientists are divided over whether the disease is primarily physical or psychological and as a result there is no effective treatment available on the NHS.

The idea that the illness is a psychological or behavioural problem began in the 1980s when US public health representatives renamed ME “chronic fatigue syndrome” on the basis that because it mostly affected women it must be a form of mass hysteria. Journalists took note. In 1990 Newsweek magazine coined the term “yuppie flu”, suggesting the disease was nothing more than career burnout.

This week a group of researchers at Bristol University, led by Professor Esther Crawley, offered new hope for sufferers. Until now, it has often been overlooked that up to 1 in 50 children and teenagers have CFS and that it can disrupt education. Crawley and her team are attempting to address this gap in treatment by recruiting 700 teenagers and their parents for an online programme called Fitnet, which uses cognitive behavioural therapy (CBT) and Skype consultations to treat CFS, following a successful trial in the Netherlands in 2012.

Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology. “In children we know that this is a very heritable condition: [some] children are genetically vulnerable,” she says. “And they get a virus or infection and that sets off a whole load of biology. Thirty per cent of children who come to our clinic do develop depression or anxiety and I am always constantly surprised that it’s not more.

“We use cognitive behavioural therapy to help children change their sleep, their exercise, their activity and so on, but what cognitive behavioural therapy does in this illness is change the biology. You change someone’s sleep so they are getting better sleep and they are waking up at the same time everyday, you change almost everything about them. You change the way their brain produces cortisol, you change what is called the hypothalamic-pituitary-adrenal axis . . . We don’t have a pill for this but this might as well be a pill in terms of the effect it actually has on the body.”

The results from the £1 million Fitnet study are expected by 2022. Crawley’s online treatment programme sounds promising but some of those who are affected by the illness are likely to be suspicious of a treatment that involves psychological therapy, the validity of which for treating CFS has been a subject of heated debate. Crawley is aware of the potential opposition her trial may provoke but says, “It is not helpful to say: ‘You are giving a psychological treatment, therefore it is a psychological illness.’ This approach changes the biology of a biological illness, which has, in some children, psychological consequences.”

In 2011 The Lancet reported the results of a five-year, government funded study called the Pace trial, which claimed that CBT and graded exercise therapy (GET) could treat CFS.

Pace led to headlines such as “Got ME? Just get out and exercise, say scientists” and “Chronic fatigue syndrome sufferers ‘can overcome symptoms of ME with positive thinking and exercise’ ”. That trial cost the British taxpayer more than £5 million but a re-analysis co-authored by expert patients and top US scientists recently claimed that recovery results had been inflated. Far from CBT being a miracle cure with graded exercise, they concluded that it had “no benefits” for patients with CFS and might even be harmful.

The authors of the Pace trial, however, stand by their original conclusions. “Whichever way the data is viewed, patients get better results from CBT and GET — both confirmed as safe — than they do from pacing [themselves] or medical care alone,” Pace’s lead investigator Peter White wrote in The Guardian.

The latest news about the Pace results came only weeks after researchers in California suggested that CFS could be caused by a physical disorder that caused the body to go into a state of semi-hibernation. Robert Naviaux, a researcher at the University of California, has discovered a chemical signature in the blood of people with the disease. Naviaux believes CFS is chemically similar to a state found in nematode worms called dauer, in which the metabolism adjusts to a difficult environment by slowing down. Both dauer and CFS permit survival, but only “at the cost of severely curtailed function and quality of life”.

This description strikes a chord with Franklin, who required 18 months of bed rest. On the same night when she was told her body was failing, a different GP was called. The new doctor was reportedly horrified at Franklin’s condition but equally powerless to help. Franklin recalls her explaining: “The NHS cannot help you. Our hands are tied. We are under strict instruction to follow certain guidelines and protocols. Your complex case does not fit within the guidelines. You need to go private and you need to do it now. You don’t have time to wait.”

The only treatment available to Franklin on the NHS — that which was justified by the 2011 Pace trial — was GET or CBT at her local chronic fatigue clinic at Cannock Chase Hospital in Staffordshire.

The treatments offered by Crawley and her team will extend the availability of CBT to young people and those without access to specialist clinics but don’t seem to be offering anything fundamentally different. Crawley disagrees with this assessment, however, stating that her trial should not be compared to Pace: “[Fitnet] is a trial in children and not in adults. Recovery rates in children are very different to those in adults and the way children present is very different to adults.”

The one thing that all researchers agree is that there is a desperate need for more biomedical research into CFS. Naviaux captured the scientific world’s attention with his suggestion that the cells of people with it are in a state of semi-hibernation but, as Crawley points out, it is unclear whether the changes in metabolism noted by Naviaux are the cause or the effect of the patients’ prolonged inactivity: “The big problem is that you can see differences between patients with CFS and controls, but you don’t know how many of those differences are a cause of the illness or caused by the illness.

“We need to do these biological studies but they are going to be years away from changing treatment and I have patients who come to my clinic that need treatment now.”

The question remains whether scientists are taking a risk in prescribing therapies such as CBT before we have the biomedical research that will allow us fully to understand the disease. On this point Crawley says: “Oh, no, I don’t think there is any risk at all. There are loads and loads of treatments that we offer for lots of different illnesses where we don’t understand how they work.”

However, Emma Franklin decided on other treatment. At the beginning of this year she and her family decided to abandon NHS treatment and seek private care. Diagnosed with multiple infections that had entered her nervous system and muscle tissue, including her heart, Franklin began treatment for immune system suppression and multiple chronic infections at a private hospital nine months ago.

Her treatment, which includes antivirals for active glandular fever, IV antibiotics for chronic Lyme disease and anti-malarial medication for babesiosis co-infection, is controversial but appears to be working.

When asked how she feels on her new medication, Franklin says: “Three weeks after taking [antivirals] was the first time I said to my mum, ‘I don’t think I’m dying any more.’ I remember crying and ringing her — I couldn’t go downstairs, so we talked on the phone. She asked, ‘What’s wrong?’ and I replied, ‘No, it’s good. This is the first morning I have woken up and I don’t think I’m dying any more.’ ”