Invest in ME Statement

Bursting Our Bubble

Norwegian Style

Ground-breaking Biomedical Research

 

 

The recent ground-breaking research by Professor Olav Mella and Dr Řystein Fluge et al. from Haukeland University in Bergen, Norway, [1] is testament to good science performed by people who look at ME objectively and try to understand it with scientific rigour.

This is at totally different from how most research in the UK has been previously allowed to be funded and performed by a select group of psychiatrists who have attempted to prove their theories and enforce their doctrine on sick and vulnerable patients [2].

As stated in the European ME Alliance press release of 19th October [3], the research -

'..shows that patients had no difficulty in adjusting to normal life - something which makes redundant the previous attributions to psychological problems in this patient group.'

The Norwegian research was a double-blind, placebo-controlled trial using a patient cohort defined according to the Fukuda, but patients save two also satisfied the Canadian Consensus Criteria (4).

It augurs in a new era in research and interest in researching ME.

It holds out hope for patients that part of the jigsaw puzzle has been found which may lead to further major leaps in the understanding of the pathogenesis of this disease.

It vindicates those who have been saying for many years that biomedical research into ME is the way forward for providing treatment(s) and cure(s) for this disease.

From our March 2011 newsletter [5] -

Conference IIMEC6 focuses on the need for clinical trials for ME.
Clinical trials are biomedical research studies aimed at determining the efficacy, safety levels, and possible side-effects of new medications and therapies. The majority of clinical trials involve testing new medications designed to treat many types of conditions, ranging from auto-immune and blood diseases to cancer. In the case of new medications, the trials are jointly run by pharmaceutical companies, which are responsible of designing the new drugs, and hospitals or health centres, which administer them to patients.

It is interesting to note that Dr Jonathan Kerr was presenting on starting clinical trials at our first 2006 conference. His first choice of drug at that time was interferon-b as it was widely useable with immune modulatory as well as antiviral properties.

A drug company had already promised the drug but of course we now know that Dr Kerr didn't get any funding to administer the trials. We are left wondering were we would have been had Dr Kerr been given the funding to do all the clinical trials he was planning on doing.

 

Dr Kerr also suggested clinical trials using Etanercept and monoclonal antibodies - one of which is Rituximab - at the IiME conference 2007 [6].

Of course we know that Dr Kerr received no funding to do these trials or any further funding to continue with other research that he performed from the MRC.

In 2010 at the IiME conference panel discussion Dr Kerr asked the other panel members if any of them thought ME was a prodormal autoimmune disease? [7]

It is a pity Dr Kerr's research was cut short.

A researcher ahead of his time? Or one who was merely abused by the corrupt system of funding and refereeing research which has been engineered and orchestrated by vested interests?
 

That is a judgement that will be left for posterity - but it is a judgement that eventually will be made.

It comes as no surprise to IiME that the ground-breaking research into ME comes from Norway - having borne witness to the energetic and continuous efforts of Norwegian patients [8] and our Norwegian colleagues in the European ME Alliance [9].

Norwegian neurologist Professor Harald Nyland, who presented at the IiME conference 2009 [10], was also one of the authors of the Fluge and Mella study and it is gratifying to see this cooperation between researchers.

The Norwegian researchers Fluge and Mella presented their research at the 6th Invest in ME International ME/CFS Conference in London in May 2011 [11]. It is a point of credit, that at the request of the researchers and of IiME, that attendees at the conference by and large maintained the embargo on reporting so that nothing would jeopardise the eventual publication of the paper.

The presentation is available on the IiME conference DVD [12].

 

We wonder what could be done if the IiME proposal could obtain support from funding bodies to initiate a strategy of world-class research beginning in Norwich.[13]

 

References:

1 Plos One study - Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study -http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
2 http://www.investinme.org/Article430%20The%20PACE%20Trial-Expression%20Of%20Concern%20A%20Summary.htm
3 European ME Alliance \Press Release - http://www.euro-me.org/news-Q42011-002.htm
4 Canadian Consensus - http://www.investinme.org/InfoCentre%20Guidelines.htm#Canadian_Criteria
5 Invest in ME March 2011 newsletter

http://www.investinme.org/IIME%20Newsletter%20Mar%2011.htm

6

http://www.investinme.org/International%20ME%20Conference%202007%20-%20DVD%20Orders.htm

7 http://www.investinme.org/IiME%20International%20ME%20Conference%202010%20-%20Review%20Home.htm
8 http://www.google.com/search?q=site%3Awww.investinme.org+norway&qfront=norway
9 http://www.euro-me.org/Norway%20MEA.htm
10 http://tinyurl.com/mksucl
11 http://www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20-%20Review%20Home.htm
12 http://www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20DVD%20Orders.htm
13 http://www.investinme.org/Research%20-%20ME%20Institute.htm

 

Addendum:

Meanwhile the silence about the Norwegian research from the BBC and UK media and government officials is deafening. Whilst news of negative papers regarding a link between human gamma retroviruses and ME are immediate news in the BBC, BMJ and other establishment newspapers there remains a no news of this ground-breaking research from Norway.

 

It must be asked who is pulling the BBC's strings?

 

Norwegian Health Directorate Apology

The Norwegian Directorate of Health has apologised to ME patients for the way in which they have been treated and the lack of adequate services - click here.

 

Burst Our Bubble

Click on the bubble above for our ME Awareness Month campaign page

 

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble
 

A bubble formed from –

  • Misinformation

  • Medical ignorance

  • Misdiagnosis

  • Discrimination

  • No funding for biomedical research

  • Government apathy

  • Isolation

We hope to change that.

We'll continue to use the Burst Our Bubble campaign to raise awareness.

 
  

Invest in ME

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www.investinme.org

 

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