From the Norwich Evening News, 26 April 2011 (story by Kim Briscoe).
National charity Invest in ME is working towards funding research into myalgic encephalomyelitis (ME) in Norwich.
At the same time NHS Norfolk, alongside NHS Suffolk and NHS Great Yarmouth and Waveney, wants to harness some of the expertise the charity will bring to Norfolk to offer a better service for patients, many of whom have been bed-bound for years, with little hope of getting better.
Invest in ME first unveiled its wish to conduct research in Norwich almost a year ago. It now says that almost all of the pieces are in place to allow this to start.
One stumbling block, however, is finding a local hospital willing to allow a London consultant to work under its auspices.
Richard Simpson, a trustee of the charity, who is from Norwich and who has two daughters with ME, said researchers from the University of East Anglia were willing to conduct the research and had also enlisted the support of a top London consultant to examine patients and correctly diagnose them.
The consultant, who would initially come to Norfolk a couple of days every month, would also be used by the three PCTs as a consultant to care for people with severe ME.
However, in order to be able to buy the services of the consultant, he needs to work through one of our local hospitals, and the Norfolk and Norwich University Hospital has refused to support the project.
ME is a contentious illness, as little is known about its causes, and the medical profession is divided as to whether it is a psychiatric or behavioural condition, or a physical, biomedical disease.
Mr Simpson, who is being supported by former North North MP Ian Gibson in the drive to get research under way in Norwich, said: “This is a serious illness which is blighting the lives of hundreds of thousands of people, but there is very little research into it, and practically none to look into the biomedical causes of ME, which is what we want to fund.”
Ian Ayres, of NHS Norfolk, said: “ME is one of those illnesses where the science hasn’t yet figured out what’s going on.
“There’s a body of opinion which says it’s a pyschosocial disease.
There’s also a body of opinion which says it could well be a biomedical disease but the jury’s out on the research. “Doctors are scientists and until the evidence is there they are sceptical.
“That’s why I’m supporting Richard and Ian to get a research project locally.
“There are people out there suffering and we need to provide care and need to get them help.
“There are a group of patients with ME who are not getting the care they need and that is partly because the medical profession doesn’t fully understand ME yet.”
Mr Ayres said that within the health profession there are no specialist consultants for ME, and only around half a dozen consultant neurologists with an interest in the condition.
He added: “There are a small number of individuals who are very severe sufferers of ME and for them NHS Norfolk is working with NHS Suffolk and NHS Great Yarmouth and Waveney to find a consultant doctor as part of the service we provide for those patients. But it is really hard to find one and none of our local hospitals have doctors who have an interest.”
Mr Simpson said that one of the reasons why Norwich was so well-placed to undertake research into the condition was because of its expertise in the area of human gut physiology, as there was some evidence that this was an area which could be linked to the causes of ME.
He added that researchers in America had also indicated that ME research could benefit from genome sequencing, which could also be carried out in Norwich at the research park’s Genome Analysis Centre.
“We want to set up a centre to examine people with ME to diagnose them properly to be able to really allow patients to become part of research programmes and work together and create a database of all of the research they are doing all over the world.
“This is a fantastic opportunity, a unique opportunity. There’s not any other place in Europe that we could do this.
In 2006, former Dr Gibson headed the Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis, received thousands of written submissions of evidence from medical experts, scientists, patients and patient groups across the UK and internationally and also held five oral hearings. The Gibson Inquiry argued for massive investment in research into CFS/ ME, to realign the focus of research and have greater and more relevant patient involvement in the process.
But little has happened since that enquiry, which is why Dr Gibson is supporting Invest in ME’s drive to kick-start some research in Norwich.
Dr Gibson said: “We ought to have a centre of excellence here in the UK and there are some fantastic facilities here at the Norwich Research Park.
“They have top quality researchers in terms of experience and ability.
“It would be a real first for Norfolk and put it on the map.”
Both Mr Simpson and Dr Gibson said they had been deeply disappointed by the N&N’s refusal to get involved in the project, as the hospital is already part of the Norwich Research Park partnership.
They also said they felt they had not been given a good reason as to why the hospital refused to take part.
The N&N medical director Krishna Sethia told the EDP: “Clinically, we do not have the specialists required to offer an ME service so it’s not a service that we are proposing to develop.”
Mr Ayres said NHS Norfolk was supportive of the work Invest in ME is trying to do, and it was a “happy coincidence” that both needed a top consultant and it made sense for Norfolk and Suffolk’s health services to buy the services from the same top consultant neurologist who had agreed to work with the charity.
However, in order to be able to pay for the consultant to see Norfolk and Suffolk’s most ill ME patients, the consultant has to be attached to a bonefide, registered health provider.
Mr Ayres said: “For them to give visiting rights to a consultant they would have to be happy to put time and effort in to overseeing the supervising the clinical quality of that individual.
“And they have decided that they have other priorities and it is not one of their priorities to develop.”
Mr Ayres said he was seeking permission from the consultant to approach other hospitals in the area.
He added that the James Paget University Hospital used to have a consultant, but he retired, and when he was working there were around 25 severe sufferers of ME he was treating.
He added that he could not give figures for how many people in Norfolk and Suffolk have ME, but said work was being carried out to gauge the numbers.
Case study: Kerry Newnham
Kerry Newnham is just 34, but has spent the past 14 years of her life bed-bound in a darkened room because of severe ME.
She was a bright student, very active in sport, playing the flute and piano and wanted to teach, travel and do charity work.
She began having pains in her legs when she was 15, but just before she turned 16 she had exams, a two-week hill walking holiday and two weeks in bed after a viral-type illness and after which she was never well again.
Throughout sixth form there was non-stop deterioration and despite the constant tiredness Kerry still managed to secure a place at university in Leeds to study English and music.
She struggled through her first year, but in the end had to give it up because her health became so poor.
Kerry is now bed-bound and stays in a darkened room in her home at Shaftesbury Court in Lowestoft because she is sensitive to the light and to too much stimulus.
Her mother Angela, from Gunton Drive, Lowestoft, said: “When people meet Kerry for the first time, health professionals and carers are really quite shocked at the impact the illness has had on her.
“It has had a devastating impact on her life and she hasn’t really got any quality of life.
“She’s not able to watch TV or read a book or do anything. She can’t have anyone site with her or talk to her because she can’t cope with that sort of stimulation.
“We washed her hair about six months ago because she hadn’t had it done for a year, but it made her even more ill. She hasn’t had a bath now for a year and half.”
Kerry is too ill to be interviewed in person or by telephone by the EDP, but said in an email: “No talk of management or warned that serious in the early years. That was my downfall.
“Took 18 months to get diagnosis and then reassured would just go away. Always told to get on with it & must push myself despite almost constant malaise / tiredness.
“Had doctor, four years in, almost persuade me it was psychological and had to stop looking for physical cause. Advised to work through fatigue even though had had to leave uni after one very difficult year & was housebound & hugely struggling cognitively.
“Too ill to visit specialists and no GP support/ advice so exhausted myself trying unproven alternative therapies, even travelling to them.
Resulted in profound disability, especially & distressingly cognitively.
“No-one including myself, could not believe what had happened to me, gradually deteriorated to this: kept alive with tube feeding. Can only speak the odd word / sentence now and then so communication is through signing / typing or a speech aid. Curtains always drawn. Can’t cope with visitors or adequate personal care. Had hair washed recently for first time in a year – made worse & now have to be helped onto a bedpan. My most distressing symptom is cognitive dysfunction and confusion, loss of sense of self and profound problems thinking /seeing /imagining etc. My brain feels smashed & I’m stimulation intolerant.”
The severity of ME came to public prominence after Kay Gilderdale was cleared of her daughter Lynn’s attempted murder in January last year.
Lynn, 31, had injected herself with morphine in December 2008 after being bedridden with ME for 17 years. Having discovered her daughter’s failed overdose, Kay gave Lynn more drugs when she feared she would be brain damaged.
Mrs Newnham, 57, said Kerry had two or three text pals, and one of them had been Lynn.
She said: “It affected her terribly badly when Lynn died. There are ever so many similarities between them, but Kerry isn’t in pain like Lynn was.
“But she gets so she doesn’t want to carry on sometimes, it’s so depressing.
“She just needs something to give her a chance to get better. I don’t think it’s going to happen when there’s nothing being done for these people at the moment. This research could be a lifeline.”