Invest in ME Comment:
Following on from our February 2010 newsletter

Look to the End

Since Science magazine published the XMRV research by the WPI, National Cancer Institute and the Cleveland Clinic there have been several attempts to cast doubt on the quality of that research.

It seems a strange way to conduct science when the quality of the research and the methods employed to perform the XMRV research are seemingly portrayed as having been carried out by a couple of amateur scientists and published by a school magazine.

It needs to be re-stated that the original XMRV research was carried out by organisations and researchers that are professional and expert in their processes, procedures and knowledge. It also needs to be re-stated that the work was a culmination of years of work and underwent a rigorous six month peer review process by Science magazine before it was published.

Compare this with the recent research using different methodologies and patient cohorts which have been carried out by Erlwein et al., Imperial College, published online in Plos One [1] and, more recently, by a new study (published 15 February 2010) in the online journal  Retrovirology by Harriet C T Groom et al. "Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome" Retrovirology 2010, 7:10doi:10.1186/1742-4690-7-10.[2] Erlwein et al. found no XMRV by nested PCR (0/186) in their samples and the research by Groom et al. has not identified XMRV DNA in any samples either by PCR (0/299). 

These two studies were not replication studies of the original one published in Science magazine and are suspect.

The most recent attempt to cast doubt on the XMRV research in relation to CFS has been made by a Dutch group.[3]

Firstly it would be prudent to look at some of the names in these recent UK and Dutch trials. 

The Dutch study includes two names - Gijs Bleijenberg (Clinical Psychologist and Head of the Nijmegen Expert Centre for Chronic Fatigue, Netherlands ) and Jos W.M. van der Meer.

Professor Bleijenberg was invited to give the keynote speech at the psychosocial conference organised by AfME and AYME (Collaborative Conference on CFS/ME: October 2007 [4] - a conference which also included Trudie Chalder (Professor Cognitive Behavioural Psychotherapy, Department of Psychological Medicine, King’s College London – and who works with Professor Simon Wessely).

Bleijenberg's speech was entitled "Cognitive behavioural therapy for chronic fatigue syndrome: the role of pain and the effects of guided self-management."

Bleijenberg and Jos W.M. van der Meer were also authors of another study [5] which states that -

"CFS is neither the result of an organic disease or ongoing exertion nor alleviated by rest."

One can draw one's own conclusions then of the quality, purpose and value of this latest Dutch study.

The haste with which these recent XMRV studies have been arranged and, more importantly, been published is significant. Contrast them with the painstaking research performed by the WPI, NCI and Cleveland clinic and the protracted and very stringent validation of that research by Science magazine before it was published.

It is interesting to note that the CMO's office, in its reply to Invest in ME in January 2010 (click here) already quoted the Imperial College McClure/Wessely study. The letter from the CMO was dated 5th January - one day before the Imperial College paper was officially published! Even allowing for some pre-release of the IC paper this still seems to indicate at least establishment collaboration in the intent to give publicity to this early study.

Patients who have been denied proper attention and funding of biomedical research into ME by the CDC and the UK Medical Research Council are entitled to be extremely suspicious of the latest UK and Dutch studies. Patients should also be suspicious of the motives of others who seem to be unduly quick to publicise these studies.

However, patients have already been warned to expect negative results by Drs. Nancy Klimas and David Bell as the first studies are being published. 

These first studies have used different methods when trying to validate their tests to detect XMRV in blood samples from CFS patients. The patient cohorts are also suspect.

We are reminded of Dr Chia's words in his entry in Lost Voices (which was published before the discovery of XMRV in CFS). Dr Chia wrote -

"I realize that many of the assumptions that were made about this illness during the past two decades were erroneous. The discrepant results from different laboratories were probably due to differences in the handling of blood samples, and the sensitivity of the tests used to document the presence of virus in the tissue of ME/CFS patients"

and in relation to similar problems of early HIV research -

"The problem was solved after this wise researcher sent his workers to another laboratory to learn how to do the test."

This is what needs to be done with the XMRV research in order to stop wasting precious time and money. Collaboration and cooperation are the keys to resolving this. As Dr. Chia implies we must learn from past mistakes.

This will be well discussed at the Invest in ME International ME/CFS conference in May. 

The existence of the XMRV is not questioned and there is a lot of interest in studying this new retrovirus.

The quality of the WPI, NCI and Cleveland clinic cannot be doubted.

Invest in ME does have doubts about research being hastily completed by persons who are known to hold ME as a behavioural illness.

Invest in ME warn patients against being disheartened by those who seem to wish to discredit the WPI/NCI/Cleveland research.

We have doubts about the way that these early trials, clearly not replications, have been awarded publicity by an establishment which has for a generation avoided treating ME seriously as an organic illness.

Invest in ME welcome support from any organisations who have funding for high-quality research proposals to join us in financing more biomedical research, or provide Invest in ME with that money so that we can direct this to the appropriate research. If research funds are available then let us use them!

Invest in ME's opinion is that any replication studies need to be using exactly the same method as used by WPI, NCI and Cleveland and in close collaboration with the original researchers to benefit patients sooner rather than later.

As a postscript to the above the Whittemore-Peterson Institute have contacted Dr. McClure directly to offer samples for Dr McClure to test and to explain that XMRV had been found in UK and Netherlands and correcting discrepancies in remarks made in the BMJ [6].

There will be more on XMRV research and other exciting research at the Invest in ME International ME/CFS conference in London on 24th May (click here).

The true replication studies are yet to come. These are early days still.

Look to the end.







6] Whittemore-Peterson Institute Statement to Dr. McClure on Plos One Study - click here

Further Links:

The WPI comments on the two UK studies can be seen here -

Expert opinion discussing this latest study by a virology professor can be found here -

In order to get an idea how several experts discuss XMRV and CFS there is a free 3-week trial to join the Faculty of 1000 Biology and gain access to expert opinion - see

Magical Medicine: How to Make a Disease Disappear - click here

The Proof is Out There -  Research into ME - click here

Whittemore-Peterson Institute Statement to Dr. McClure on Plos One Study - click here