Norwich centre for ME sufferers planned (Dr Ian Gibson)

[V99]

http://www.edp24.co.uk/content/edp24/news/story.aspx?brand=EDPOnline&category=NewsSplash&tBrand=EDPOnline&tCategory=xDefault&itemid=NOED02%20Aug%202010%2021%3A42%3A06%3A493

Norwich centre for ME sufferers planned

Hope was last night offered to thousands of people with ME after it emerged crucial talks were under way to establish a world class research and treatment centre in Norwich.

Campaigners have spent years trying to improve the lives of people with the debilitating condition, for which there is currently no cure and affects 10,000 people in the eastern region alone.

Now talks between Dr Ian Gibson, the national Invest in ME charity, the UEA and NHS Norfolk have taken place with the view of setting up a centre to properly research, diagnose and treat the illness. If it goes ahead, it will be the first centre of excellence in the country and firmly put Norwich on the map of advancing medicine and healthcare.

ME (myalgic encephalomyelitis), also known as chronic fatigue syndrome, is a contentious illness because for years clinicians and other medical professionals refused to recognise it and it was often dismissed as yuppie flu, despite causing years of complex problems such as overwhelming tiredness, swollen glands, painful muscles and joints, and severe sleep difficulties.

However, years of campaigning and hard hitting inquiries in the condition - one of which was held by former Norwich North MP Dr Ian Gibson - has raised further awareness and understanding of the condition.

Dr Gibson said: This centre could totally change the lives of people with ME. At the moment there is no proper diagnosis for ME and treatment is patchy. We would do research here and, as this develops, we can treat patients from all over the country and the rest of Europe.

This is a great opportunity to treat chronically ill patients who have maybe not had proper treatment in the past.

There are 250,000 people [nationally] with ME and this could finally make a difference to all of them.

There are preliminary discussions to establish at the research centre at the UEA - because the equipment and research facilities are already there - with services commissioned by NHS Norfolk.

The service would offer early diagnosis, examination and treatment of the illness, with diagnosis commissioned by NHS Norfolk and referals made through GPs.

In Norfolk and Suffolk there are an estimated 4,000 people with ME from the age of six and above.

Richard Simpson is the founder of Invest in ME which campaigns for research and funding to establish causes and an understanding of the illness. The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

He said the research being proposed would be the most advanced possible.

ME is not often diagnosed properly because doctors often eliminate other illnesses and then conclude it could be ME without proper tests. The patients do not get treated properly, he said. Early diagnosis is so important and this centre would help establish that happens.

It will start smaller and just get bigger. At the moment nobody is getting better. It is a hideous illness and people suffer a lot and some die from it.

There is no other illness which affects so many people yet is so unrecognised and so underfunded. It is not right that people have to travel abroad to get the right treatment. It would be so fantastic to carry out all these functions in Norwich and the next few months are crucial in terms of pressing ahead with this. We won't give up the fight until we are treating ME properly.

Mr Simpson, from Norwich, and his wife Pia set up the charity after both their daughters developed ME. Annika Simpson, 24, has had it for 11 years and Jennifer, 20, for seven years.

They are basing the new centre on an American clinic called Whittemore Peterson, an institute for neuro-immune disease in Nevada which helps thousands of people with ME through research, scientific developments and subsequent treatment.

The charity already has support from other charitable organisations and clinicians.

Discussions will be going on over the next few months and once a decision has been made, funding will begin to the tune of 150,000 a year.

A spokeswoman from the UEA said: Preliminary discussions have taken place, but no decisions have been made at this stage.

Whenever any new centre is proposed at the University, there has to be very detailed exploration of logistics and implications for the department concerned before any commitment is made.

Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich University Hospital would be become involved by setting up clinics, but bosses have said they have no plans to see patients there so they are looking at suitable services across the county.

In 2006, a parliamentary group headed by Dr Gibson spent a year looking into ME, taking evidence from sufferers, carers and experts, and he argued for massive investment, which has yet to materialise.

 

[garcia]

Wow. If this was in London and not Norwich I would be dancing a jig. But still wow.

 

[V99]

And Invest in ME are involved. Sounds brilliant. Nope it happens.

Just one decent centre in the UK would change everything.

 

[Sasha]

Wow. If this was in London and not Norwich I would be dancing a jig. But still wow.

Wherever in the UK it was, it would set the standard nationally for treatment. I really hope this comes off! 150k sounds like a very small amount to run such a thing, though. I wonder where the money would be coming from.

 

[Enid]

Delighted to hear and please can we visit from Kent. Iime suffers and carers all really keep abreast with latest findings and treatments, can't go wrong.

 

[Bob]

Thanks for this info V99... I think that this is something for those of us in the UK to keep an eye on... If Invest in ME is involved, then it's going to be something very interesting that they are setting up...

Here's a link to the Invest in ME webpage about it:
http://www.investinme.org/Research - ME Institute.htm

 

[Sunshine]

They are basing the new centre on an American clinic called Whittemore Peterson

If ME was shifted into immunology departments by this proposed Norwich centre, the NHS would refuse that as ME is part of the NHS's pet plan of the biospychosocial disorder CFS/ME treated with CBT, graded activity and counselling. (CFS researcher, Dr Kerr attempted to give ME patients access to a dedicated rheumatologist for ME and his clinic was shut down before it opened around 2007).

The NHS will not allow an ME clinic that treats people with immune drugs (as the WPI will) as immunology investigations and treatments are prohibited under the NICE 2009 guidelines for CFS/ME patients.
Which explains how ME patients are prohibited access to a hospital under this plan via the comment.................

Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich University Hospital would be become involved by setting up clinics, but bosses have said they have no plans to see patients there

There is a long way to go, before ME patients are no longer seen as lepers by the National Health Service (NHS) in the UK. Dr Gibson will have to make this ME clinic invisible to the general public as otherwise people will talk, and ask why their NHS hospital doesn't have a biomedical treatment service for ME as the proposed clinic in Norwhich would. CFS/ME is stated as treatable by the NHS with harmful therapies and Dr Gibson's proposal is a spanner in the works for the psychiatric profession's claim 80% of severe patients improve.

 

[Frank]

I have the same concerns as Sunshine. Maybe someone can ask Invest in ME

 

[Bob]

They are basing the new centre on an American clinic called Whittemore Peterson

If ME was shifted into immunology departments by this proposed Norwich centre, the NHS would refuse that as ME is part of the NHS's pet plan of the biospychosocial disorder CFS/ME treated with CBT, graded activity and counselling. (CFS researcher, Dr Kerr attempted to give ME patients access to a dedicated rheumatologist for ME and his clinic was shut down before it opened around 2007).

The NHS will not allow an ME clinic that treats people with immune drugs (as the WPI will) as immunology investigations and treatments are prohibited under the NICE 2009 guidelines for CFS/ME patients.
Which explains how ME patients are prohibited access to a hospital under this plan via the comment.................

Dr Gibson and Mr Simpson were hoping the Norfolk and Norwich University Hospital would be become involved by setting up clinics, but bosses have said they have no plans to see patients there

There is a long way to go, before ME patients are no longer seen as lepers by the National Health Service (NHS) in the UK. Dr Gibson will have to make this ME clinic invisible to the general public as otherwise people will talk, and ask why their NHS hospital doesn't have a biomedical treatment service for ME as the proposed clinic in Norwhich would. CFS/ME is stated as treatable by the NHS with harmful therapies and Dr Gibson's proposal is a spanner in the works for the psychiatric profession's claim 80% of severe patients improve.

Hi Sunshine, you've explained the NHS's, NICE's and the MRC's position on ME very well, as they all have the same psychological approach to ME... and, unfortunately, it doesn't look like their attitude is going to change in a hurry.

The article about the Norwich centre says that Invest in ME will be overseeing the campaigning for ongoing fundraising for the centre "to the tune of 150,000 a year", so maybe this clinic is going to be a private scheme, without the involvement of the NHS.

Invest in ME are used to dealing with the corruption of the authorities in the UK, which is exactly why they were set up in the first place, so they won't easily be deterred by a negative reaction from the NHS. I don't know if NICE can interfere in private medicine in the same way that they have a hold over the NHS. And the MRC can't block private funding for biomedical research into ME, they only oversee public funding. So it looks like Invest in ME might be taking a leaf out of the WPI's book, and going it alone with private funding.

 

[Bob]

So it looks like Invest in ME might be taking a leaf out of the WPI's book, and going it alone with private funding.

It looks like I'm wrong about this being a totally private scheme...
I've just read Invest in ME's webpage, and it looks like they do have some NHS support for the scheme:
http://www.investinme.org/Research - ME Institute.htm

Service Commissioning
Service commissioning would be performed by the local PCT [PCT = NHS Primary Care Trust]. The service would require early and correct diagnosis, examination and treatment of ME/CFS using a clinical biomedical lead consultant with GPs with special interest being connected to the service.

This is interesting... They intend to use the Canadian Consensus Criteria, which is going to be rather controversial in the UK...

Diagnosis and Clinical Examinations
The examinations of people with ME/CFS would be commissioned by the PCT. Referrals to the university hospital would be via existing methods from GPs. An important issue is for early and correct diagnosis to be determined.

The service would include a clinical biomedical lead consultant who would perform correct diagnosis (using the international standard Canadian Consensus Guidelines), perform a full examination using a standard clinical protocol and, once patients have been formally diagnosed as having ME, administer possible treatments and participate in biomedical research into the disease.

And this is also interesting, regarding the WPI's support...

CHARITY SUPPORT
Invest in ME are supporters of the Whittemore-Peterson Institute (WPI) of Nevada, USA, and have funded UK research by WPI. It has European connections and links to other researchers and institutes in Europe and Australia. The WPI have expressed their support for the charity’s efforts in establishing a translational biomedical research base in Norwich and have agreed to cooperate.

 

[Dx Revision Watch]

It looks like I'm wrong about this being a totally private scheme...
I've just read Invest in ME's webpage, and it looks like they do have some NHS support for the scheme:
http://www.investinme.org/Research - ME Institute.htm

This is interesting... They intend to use the Canadian Consensus Criteria, which is going to be rather controversial in the UK...

And this is also interesting, regarding the WPI's support...

[...]

CHARITY SUPPORT
Invest in ME are supporters of the Whittemore-Peterson Institute (WPI) of Nevada, USA, and have funded UK research by WPI. It has European connections and links to other researchers and institutes in Europe and Australia. The WPI have expressed their support for the charitys efforts in establishing a translational biomedical research base in Norwich and have agreed to cooperate.

I would suggest that anyone with an interest in this issue downloads the documents on the Invest in ME website.

Invest in ME had been fundraising for a proposed collaboration XMRV study by Dr Jonathan Kerr and Dr Amalok Bansal. This fundraising effort (shared with ME Solutions to whom Dr Bansal is Medical Adviser and to whom Vivienne Parry is a Patron) was shelved when Dr Kerr pulled out of XMRV related research.

It is not known how much money had already been raised but Invest in ME contacted those who had already made donations and gave them the option of either a refund of their donation or that their dontation would be offered to WPI to assist with the UK collection of blood samples. Invest in ME reported that all who had already made donations for the proposed Kerr/Bansal study opted for their donation to be forwared to the WPI for this stated purpose.

It is my understanding that Invest in ME has no involvement otherwise with the WPI blood draws.

I am not alone in being somewhat cautious about proposed initiatives that have the support and involvement of former MP, Dr Ian Gibson, now in his early 70s.

Not everyone welcomed the unofficial "Gibson Inquiry" and the uncorrected report e-published in October 2006, that resulted out of it nor the way that Dr Gibson and his panel undertook this inquiry, which was a personal project not a Parliamentary inquiry or report.

You can read the ONE CLICK report on the "Gibson Inquiry" here:

http://www.theoneclickgroup.co.uk/d...Click Group Report - The Gibson Inquiry .pdf


To the best of my knowledge, Invest in ME has undertaken no national consultation over this proposal, which is still at a tentative "discussions" stage.

 

[Bob]

Hi Suzy,

Are you expressing an opinion, or making a particular point in the following passage?
I'm trying to work out if you are expressing a view about Invest in ME?
Or are you just imparting impartial information?...

I would suggest that anyone with an interest in this issue downloads the documents on the Invest in ME website.

Invest in ME had been fundraising for a proposed collaboration XMRV study by Dr Jonathan Kerr and Dr Amalok Bansal. This fundraising effort (shared with ME Solutions to whom Dr Bansal is Medical Adviser and to whom Vivienne Parry is a Patron) was shelved when Dr Kerr pulled out of XMRV related research.

It is not known how much money had already been raised but Invest in ME contacted those who had already made donations and gave them the option of either a refund of their donation or that their dontation would be offered to WPI to assist with the UK collection of blood samples. Invest in ME reported that all who had already made donations for the proposed Kerr/Bansal study opted for their donation to be forwared to the WPI for this stated purpose.

It is my understanding that Invest in ME has no involvement otherwise with the WPI blood draws.

I am not alone in being somewhat cautious about proposed initiatives that have the support and involvement of former MP, Dr Ian Gibson, now in his early 70s.

Not everyone welcomed the unofficial "Gibson Inquiry" and the uncorrected report e-published in October 2006, that resulted out of it nor the way that Dr Gibson and his panel undertook this inquiry, which was a personal project not a Parliamentary inquiry or report.

You can read the ONE CLICK report on the "Gibson Inquiry" here:

http://www.theoneclickgroup.co.uk/d...Click Group Report - The Gibson Inquiry .pdf

I hope that I can reassure you that Invest in ME are adamantly opposed to the NICE guidelines, and the psychosocial model of ME. In my opinion, Invest in ME are one of the best ME organisations that we've got in the UK. They stick to their principles of promoting biomedical research into ME, and they reject any involvement with organisations which have signed up to the NICE guidelines, or which promote CBT or any other psychological approaches to treating ME.

With regards to the Gibson report, maybe Dr Gibson was shackled by being chair of a committee, whereas, working with Invest in ME in a personal capacity, might enable him to act more according to his own personal beliefs.

There has always been controversy relating to the parliamentary committees for ME, but I believe that Dr Gibson did a lot of good work in raising the profile of ME in the UK, even if we don't agree with everything that the committee reported. I've always thought that Dr Gibson was motivated by honesty and good will. And he definitely worked very hard, voluntarily, without reward.

To the best of my knowledge, Invest in ME has undertaken no national consultation over this proposal, which is still at a tentative "discussions" stage.

I'm not quite sure what point you are making here, if any?... This is a local project being set up by local organisations and individuals, so why would they consult on a national level? And who would they consult? NICE? I'd definitely rather trust this one to Invest in ME. I don't think that the WPI consulted nationally when they set up their institute... If they did then it probably wouldn't have been set up at all.