ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Better care for ME is a step closer in Norfolk
Saturday 30 April 2011
Better care for ME is a step closer in Norfolk
Plans to conduct pioneering research in Norwich into a debilitating illness are a step closer – as is securing better care for Norfolk and Suffolk’s most seriously ill ME patients.
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.
The above originally appeared here.
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