‘New hope for ME/CFS research in the UK’ – joint charities’ biobank statement

August 10, 2011

Three charities – Action for M.E., the ME Association and ME Research UK – and a private donor have joined forces to fund the UK’s first biobank of human blood samples for research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS).

The biobank will be situated at London’s Royal Free Hospital where it will be able to link in with the extensive research facilities at University College London.

From Monday 8 August, having completed their feasibility studies, principal researchers Dr Eliana Lacerda and Dr Luis Nacul, London School of Hygiene and Tropical Medicine, will be inviting patients from a dedicated disease register to submit blood specimens. The blood will then be specially prepared and stored for use in future biomedical studies.

Initially, blood samples will be collected from a group of patients currently enrolled in the M.E./CFS Disease Register, and from healthy controls. This patient group will include people who are severely affected and bedbound.

In the longer term other people who have been diagnosed with M.E. will be able to donate blood samples too.

The work will be overseen by a steering group made up of made up of medical and academic experts, charity representatives and others.

Sir Peter Spencer, Chief Executive, Action for M.E., says:

“This biobank will be an invaluable resource for scientific research into the different sub types of the condition and for seeking biomarkers that could play an essential part in diagnosis – at the moment there is no definitive test for M.E./CFS. I believe the biobank will quickly prove its immense value to researchers and become an indispensable part of the nation’s research effort into the illness.”

Dr Charles Shepherd, Chief Medical Adviser, ME Association, says:

“We know that people with M.E./CFS have been frustrated by the lack of biomedical research in the UK. They are very supportive of research involving tissue sample collections, particularly blood samples, which they believe will lead to a better understanding of the cause of the disease and hopefully the development of specific treatments.”

Dr Neil Abbot, Operations Director, ME Research UK, says:

“Biobanks have great potential, as the 2009 House of Lords Report on Genomic Medicine made clear in 2009. The creation of a biobank infrastructure for M.E./CFS, linking bio-specimens with clinical, disease and other data over the long term, is a very welcome advance. We need to know far more about the causes and consequences of this illness which has been overlooked for too long.”

Co-principal investigator Dr Luis Nacul, London School of Hygiene and Tropical Medicine, says:

“This proposal seeks to create the infrastructure that will enable the investigation of a range of biomedical research questions eg. those related to the aetiology, pathophysiology, diagnosis and stratification of cases. We will achieve this by providing the research community with a well-characterised cohort of people with M.E./CFS with biological samples and clinical data attached.”

The need for more high-quality biomedical research in M.E./CFS has been recognised by the Medical Research Council (MRC), which announced in January that it was committing £1.5 million for research into the mechanisms of the illness.5

The charities hope that studies funded by the MRC will make use of the biobank, after they are announced later this year.

Professor Stephen Holgate, Chair, MRC Population and Systems Medicine Board, says:

“This initiative has my full support. The biobank project is an excellent example of how the M.E./CFS charities are working together within the national framework, established by the Medical Research Council expert group, for taking forward the UK’s research effort into this poorly understood chronic condition.”




Information about the Disease Register, part of the National M.E./CFS Observatory, may be found on Action for M.E.’s website at: www.actionforme.org.uk/get-informed/research/our-research-related-activity/national-me-cfs-observatory/index

Information about the MRC’s M.E./CFS funding initiative may be found at: www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm</a>

16 thoughts on “‘New hope for ME/CFS research in the UK’ – joint charities’ biobank statement”

  1. Would you please clarify if tissue samples from the brain and spinal cord will be included in the biobank research studies? Also, how will the subsets under CFS be decided and what is a well-characterised cohort according to the steering group? What diagnostic criteria be using to divide the subsets?

  2. Already found out that the Canadian Criteria will be used too. A major step forward for the UK. I just hope that the focus will be on immunology and virology which will be where the answers lie. It took the UK too long for this to happen. If ME proves to be linked to XMRV, it will be prepared but a little too late but if not, it will be at least be prepared to find out, if not XMRV then what is the common pathology of those with genuine ME.

  3. Those of us who are members of the MEA/Soc haven’t yet been told why the idea of the tissue/brain bank became unworkable and this blood bank —for CFS –has taken its place.
    Answers in the journal please.
    Joint decision? People donated to Ed Stafford’s Amazon walk specifically for a tissue bank.
    So yet again there’s to be no virology.
    Why is virology a dirty word? And not just in the world of M.E, or CFS for that matter.

  4. AS more samples are required, how will patients be chosen, and for those of us who have difficulty getting to our doctors will contingency plans be used (home draws?).

  5. Dr Charles Shepherd

    The answers to most of these questions can be found in the Biobank Q and A page – which is also in the MEA website news section.

    We have not abandoned plans to set up a tissue and post-mortem bank. We wanted to get started with this work, which is costing a lot of money, and the best way to do so was to start by setting up the biobank.

    A tissue and post-mortem bank will require a separate building/site, staff and financial resources. Some of the money is there but we still have a long way to go.

    The blood samples will be available for research into the virology and infectious aspect of ME/CFS. We have, in fact, already been discussing one possible item of virology research. I don’t understand how you could conclude that virology is no longer a research priority. It clearly is.

    Dr Charles Shepherd

  6. We can all nit pick, if we choose to, but let’s not look a gift horse in the mouth.
    It’s a good day for all of us – the term ‘ME/CFS’ may be not be very palatable, but the biobank is going to help everyone with ME.

  7. Thanks for the clarification. I was hoping that the plans for a tissue and post-mortem biobank had not been abandoned. I realised that it would cost a lot of money too. I’m reassured to see that some studies will be in virology.

    Just to say thank you to MEA and to you, Dr Shepherd for pushing for this.

    Also, thanks for what you said in the radio 4 interview recently after the alleged, so called death threats that some researchers claim to have had.

    One more question. Will there be discussions about using the new ICC for research once it has been published?

  8. A few questions that have not been answered in the Q&A.

    1) Not all those meeting CCC also meet Fukuda. Does that mean those people will be excluded?

    2) What definition of PEM will be used? Reeves has redefined PEM to be what any sick person gets, or someone who is decondition. How will you ensure it is PEM and not anyone and everyone who is included in the CCC group?

    3) Will you be insisting that any studies that use this will have CCC patients and separate Fukuda patients? After all, Fukuda is not actually a diagnosis of anything as it relies on exclusion and is not a discreet disease. So if we only have studies using Fukuda there will be no progress.

    4) You say that it will exclude those with “acute and chronic infectious diseases such as hepatitis B and C, tuberculosis, HIV (but not herpes virus or other retrovirus infection)”

    Does that include human gamma retroviruses? And are you including people with HTLV?

  9. Thanks for the clarification of what’s intended Dr Shepherd.
    A lot of us were told in the 80s and 90s that we have a persistant enterovirus (after blood sampling) and i supppose looking into that will have to start all over again too.
    My point of virology having been a dirty word for 30 yrs.

    Thankyou also for doing the recent radio interviews.
    I do have a problem with hearing you say this year though that 1. There is no persistant virus, and 2. There is no evidence for a persistant virus.

  10. Dr Charles Shepherd

    In response to further queries:

    Blood samples will be accepted from people who meet (1994) Fukuda criteria for CFS (with the original definition of new onset fatigue) and/or the Canadian criteria (with its definition of post-exertional fatigue/malaise) for ME/CFS.

    Blood samples will be accepted from people who have had an XMRV test. As you are aware there are a growing number of virologists who are not convinced that XMRV is a disease causing retrovirus linked to ME/CFS and that it may just be a laboratory contaminant. We will obviously be reviewing the situation regarding XMRV as new research information becomes available.

    The decision on which criteria to use or investigate will depend on the aim of each individual research study. We are not issuing inflexible instructions here.

    I agree that we need to do more studies on cerebrospinal fluid but unlike blood (which contains an enormous amount of information as to what is happening in different parts of the body) there are ethical and practical problems in collecting CSF samples.

  11. Tissue from the areas like the thymus and spleen will be very helpful. That is where MLVs like to hang out.

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