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.

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What is ME?

ME (myalgic encephalomyelitis) is a serious, disabling and chronic organic (ie physical not mental) disorder. ME has been classified by the World Health Organisation as a neurological illness. Approximately 25pc of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair and bed-bound and dependent upon carers for their everyday needs.

The exact cause of ME is still uncertain and to date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.

In the UK it is generally believed that at least 250,000 suffer from the disorder.

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.

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.”

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.

44 comments

  • try googling American Cyanamid SV40 to see the real harm that mass vaccination has done to people between 1962 to 2000

    Report this comment

    andy461968

    Friday, April 29, 2011

  • I would suggest Valpy that you are probably a shrink - and one that ought to know better. The results of the PACE trials were rigged bas you well know, and Wessley et al should all be struck off and be in jail for what they have done

    Report this comment

    andy461968

    Friday, April 29, 2011

  • ME is not classed as a disease in the UK because the governments chief advisors on the subject are all psychologists, who also have a massive conflict of interest as they are also paid by big insurance companies, in whose interests it is to have ME classed as a psychosocial disorder as it means that they then dont have to pay out on policies - and the government dont have to pay out sickness benefits either...... Sick, isn't it?

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • now I can carry on all day making you look silly and ignorant if you want. I clearly know a lot more than you. One day people, the ME sufferers of this world WILL get the justice they deserve

    Report this comment

    andy461968

    Friday, April 29, 2011

  • .....and if I have anything to do with it, you and they will be.....

    Report this comment

    andy461968

    Friday, April 29, 2011

  • Look out!! The hippies are about!! It's nothing more than lazyitis. These people are mugging the state. And yes, I know "sufferers". Worse than HIV... wake up you ignorant western obsessed lot. How many ME sufferers are there in Africa where HIV is rife. Pathetic.

    Report this comment

    Valpy Word

    Thursday, April 28, 2011

  • you better hope and pray its not you or your kids. Your daughter is 3 x more likely to develop it than your son. There is no cure.

    Report this comment

    andy461968

    Friday, April 29, 2011

  • Omg how small minded valpy word must be ME is a "proper illness" and the people that suffer from the illness (not claim to have it) know this only too well. This is a debilitating illness and obviously you do not know anyone that suffers from it because if you did you wouldnt be insulting those that do suffer from it.

    Report this comment

    BellMoll

    Thursday, April 28, 2011

  • abnormal brain scans (SPECT & PET scans) and MRI scans that are consistent with organic brain syndrome, showing focal demyelination andor oedema in the sub-cortical area · a dysregulated HPA axis · a dysregulated antiviral pathway (RNase-L) · cardiac abnormalities · abnormal capillary flow · low circulating blood volume · abnormal ergometry test (indicating immediate anaerobic threshold) · haemodynamic instability · abnormal immune profile · gene profiling

    Report this comment

    andy461968

    Friday, April 29, 2011

  • Valpy Word, If ME is not a proper illness why do you think patients diagnosed with ME are permanently banned from donating blood?

    Report this comment

    violet

    Thursday, April 28, 2011

  • polio vaccines infected with the SV40 virus, causing paralysis cancer and death - could even be you or your kids one day

    Report this comment

    andy461968

    Friday, April 29, 2011

  • IT IS A REAL ILLNESS, it is a terrible illness. You are one of the most horrible people I have ever had the misfortune to read a comment from! I am severely affected and I feel like I am dying, the pain and fatigue is terrible, this dispite wearing buprenorphinum patches and taking others to help nerve pain. I have to have 247 care too and have done for 11 years,my husband and I had to give up good jobs because of this illness. Its about time we got the medical help we need, time to wake up N&N and help people who really need you to start working with this terible illness

    Report this comment

    Jazz

    Friday, April 29, 2011

  • now I can carry on all day making you look silly and ignorant if you want. I clearly know a lot more than you. One day people, the ME sufferers of this world WILL get the justice they deserve

    Report this comment

    andy461968

    Friday, April 29, 2011

  • No one these days questions the ill heath of those with MS-but years ago it was as mysterious as ME. ME is clearly a disease and it is frightening if it is caused by a virus especially as it can attack the young There should be more funding to help those with ME-but like other illnesses that are invisible to the general public (or disabilities such as deafness) and which don't kill the sufferer it is a cinderella in the research and medical world.

    Report this comment

    Daisy Roots

    Friday, April 29, 2011

  • “And they have decided that they have other priorities and it is not one of their priorities to develop.” It would be nice to know what these other priorities are. It would seem ME is never to be a priority here in the UK. Do they feel no shame at completely disregarding a large bunch of patients when an offer such as this is given to them. Surely this is something to be grabbed at with both hands. The band played on.

    Report this comment

    MeMyselfandME

    Wednesday, April 27, 2011

  • now I can carry on all day making you look silly and ignorant if you want. I clearly know a lot more than you. One day people, the ME sufferers of this world WILL get the justice they deserve

    Report this comment

    andy461968

    Friday, April 29, 2011

  • .....oh yes, and if you don't believe that major drugs companies couldn't unleashe something terrible on us, try googling 'American Cyanamid polio vaccine lawsuit' and see what comes up.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • I too am astounded that the N&N have refused to support the requirements of a single consultant who could make such a difference to people with this horrendous illness. Exactly what is the role of health agencies these days? Clearly not trying to make very sick people better it would seem.

    Report this comment

    Lilpink

    Wednesday, April 27, 2011

  • Valpy Word, If ME is not a proper illness why do you think patients diagnosed with ME are permanently banned from donating blood?

    Report this comment

    violet

    Thursday, April 28, 2011

  • I cannot believe, valpy word, that you are so rude, spiteful and ignorant...who do you think you are to say these things about people who are suffering from a very real and debilitating illness, if i can point out that Florence Nightingale had ME, not such a namby-pamby illness then was it? I have lost nearly everything because of being ill with this (and other) conditions and i dont need people like you to have opinions like that, you dont even know any of us, shame on you..

    Report this comment

    claire edwards

    Sunday, May 1, 2011

  • Valpy your comments are disgusting and ill-informed. People have DIED from this very serious disease. This has been classed as a disease by the the World Health Organisation since 1969! It is specualtively linked to the polio vaccinations that took place in 1959, since the cases of ME went through the roof in the early 60's. It is PROVEN to be a disease as there are clear biological markers that set it aside from a psychological condition - eg brain scans and gene profiling to name but 2. The only reason that it is classed as a psychological illness in the UK is because the governments chief advisor and his cronies, namely professor Simon Wessley, peter white, trudy chalter to name a few, are also benefiting financially from their association with massive medical insurance companies such as UNUM Provident - who, incidentally sponsored the labour party conference 2 years running when they were in power and were in the process of reforming the welfare system, which specifically excludes ME as a physical disease. Want me to carry on? Because I have LOADS of this stuff thats going to come out shortly and embarrass people. The medical sacandal, nay, SHAME that exists in this country has gone on far too long, and people like Wessley should, in my opinion be in jail for what they've done. Now I can carry all all day with more and more embarrassing facts if you want me to make you look stupid and ill-informed - but I'm actually looking for a far wider audience to blow this scandal out of the water.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • I'm afraid N+N and probably any NHS hospital you talk to will not sponsor this project, simply because the government refuses to listen to the advice of international experts on the matter, and chooses to ignore over 4000 published papers from leading scientists around the world on this subject that this is in fact a deadly disease. They are hiding their heads in the sand. Are you aware that there exist, in the national records office at Kew, government papers on this subject that are deemed to be so sensitive that they will not be made public for over 70 years!!

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • In a M.E. study on a fairly homogeneous population, 80% of the biopsies showed evidence of structural damage to the mitochondria.

    Report this comment

    Lady_gravy

    Thursday, April 28, 2011

  • ........because they also pay large sums of money to people like the governments advisors......this has created a massive conflict of interests, since it benefits insurance companies directly NOT to have this classed as a disease

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Valpy Word, I can carry on making you look silly and ill-informed if you like, but I am looking for a FAR bigger audience to expose this national shame - and I will.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Actually Valpy word, I think you will find that it is YOU that is ignorant. ME is rife throughout the world, and the only reason that governments are shying away from it is because it's highly likely that they caused it in the first place in their quest to eradicate polio

    Report this comment

    andy461968

    Friday, April 29, 2011

  • Valpy Word, If ME is not a proper illness why do you think patients diagnosed with ME are permanently banned from donating blood?

    Report this comment

    violet

    Thursday, April 28, 2011

  • .....and if I have anything to do with it, you and they will be.....

    Report this comment

    andy461968

    Friday, April 29, 2011

  • The reason why this is not classed as a disease in the UK is because the governments chief advisors on the subject are, for some reason, all psychologists - namely Simon Wessley, Peter White and Trudy Chalter. They are all in the pay of massive insurance companies like UNUM provident - a fact that is a matter of public record - as well as advising the government that this is not a disease, which suits the insurance comapnies fine as it means they don't have to pay out on policies....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Valpy Word I am not a hippy, not lazy or mugging the state and i am not ignorant either. I am a sufferer as is my cousin and my neice. None of us are pathetic but we are all ill and have been for a number of years. Do you think that we like suffering from this illness? Well we dont and would love to be well again but there is no cure and no medical help for ME suffers. Wake up and listen to people this is a real debilitating illness!!

    Report this comment

    BellMoll

    Friday, April 29, 2011

  • ....Oh and by the way, this disease is NOT a new disease - it's been around for a VERY long time, just called different things....Atypical Poliomyelitis - Iceland Disease - Non-paralytic Poliomyelitis - Royal Free Encephalomyelitis - Epidemic Neuromyasthenia - Epidemic Diencephalomyelitis - Infectious Venulitis - Tapanui Flu - Chronic Epstein-Barr Virus - Post Viral Syndrome to name but a few......

    Report this comment

    andy461968

    Friday, April 29, 2011

  • I cannot believe that the N&N are refusing to support this project. There are so many people with this illness and they cannot get the support the need and deserve.

    Report this comment

    BellMoll

    Tuesday, April 26, 2011

  • Valpy Word - this disease is probably WORSE than having HIV, since there is currently no known cure. HIV at least now has drugs to stop it. ME does not.

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • it's also no coincidence that UNUM Provident sponsored the labour party conference 2 years in a row at the time when they were beginning to revamp the welfare system.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • .....oh yes, and if you don't believe that major drugs companies couldn't unleashe something terrible on us, try googling 'American Cyanamid polio vaccine lawsuit' and see what comes up.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Valpy Word, I can carry on making you look silly and ill-informed if you like, but I am looking for a FAR bigger audience to expose this national shame - and I will.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Valpy Word- you seem a bit oppinunated, maybe you need to learn the truth about this serious illness until you start slagging it off, it IS real, and has been for a long time, so you should do some homework then maybe you can start calling people names!

    Report this comment

    loudmouth

    Friday, April 29, 2011

  • Valpy Word, I can carry on making you look silly and ill-informed if you like, but I am looking for a FAR bigger audience to expose this national shame - and I will.....

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Violet, presumably they can't be bothered...? In all seriousness I imagine it is a precaution because they know nothing about it. You aren't suggesting that it is on a par with HIV or Hepatitis surely..? The reason it's called ME is because it's all about ME for the people who claim to have it.

    Report this comment

    Valpy Word

    Thursday, April 28, 2011

  • This has been classed as a serious disease by the World Health Organisation since 1969, and is speculatively linked to the first polio vaccinations that took place in 1959 - cases of ME went through the roof around about 1960 onwards!!

    Report this comment

    andy461968

    Thursday, April 28, 2011

  • Anyone else think this is the perfect opportunity for the BBC & Alan Partridge to re-unite themselves? Alan could film the documentary he's always dreamed of 'Knowing ME, Knowing You with Alan Partridge'

    Report this comment

    Keith

    Thursday, April 28, 2011

  • .....and if I have anything to do with it, you and they will be.....

    Report this comment

    andy461968

    Friday, April 29, 2011

  • If you don't believe the damage that mass vaccination programs have done, I suggest you google American Cyanamid SV40, and find out what they have done to millions of kids and probably adults too.....cancer, paralysis and death....and it's STILL going on. That was with polio vaccination too, fronm 1962 to 2000

    Report this comment

    andy461968

    Friday, April 29, 2011

  • Valpy Word, there are clear biomarkers for this disease, namely: abnormal brain scans (SPECT & PET scans) and MRI scans that are consistent with organic brain syndrome, showing focal demyelination andor oedema in the sub-cortical area · a dysregulated HPA axis · a dysregulated antiviral pathway (RNase-L) · cardiac abnormalities · abnormal capillary flow · low circulating blood volume · abnormal ergometry test (indicating immediate anaerobic threshold) · haemodynamic instability · abnormal immune profile · gene profiling

    Report this comment

    andy461968

    Friday, April 29, 2011

The views expressed in the above comments do not necessarily reflect the views of this site

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