The UK ME/CFS Biobank: a rich resource of samples and data

Share on facebook
Share on twitter
Share on email

It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and the research of many others, but it may also make the work of the Biobank more important than ever and provide various opportunities for future studies and discoveries. At this time, we would like to draw your attention to the rich dataset we have available to researchers worldwide, that may inspire new research applications during this period when existing lab work may be paused.

Measuring blood pressure during an appointment (Yasmin Crawford)

The UKMEB is Europe’s first biobank devoted to ME/CFS. We have been collecting since 2013, and now have a repository of over 30,000 aliquots of blood, collected from people with ME, multiple sclerosis, as well as healthy controls. We have recruited people via the NHS, from partner organisations, and from the public.  

Our team is very proud that, thanks to funding from the National Institutes of Health in the US, we have been able to include people severely affected by ME/CFS as participants in the UKMEB. Our research nurses make home visits to those who are unable to travel and therefore often restricted from participation in ME/CFS studies.

Many Biobank participants are asked to have repeat assessments and samples taken, thus forming a long-term cohort of individuals enabling clinical and laboratory findings to be correlated with factors such as the presence of viral infections, gene expression and immunological status.

Taking bloods from the liquid nitrogen freezer for distribution to researchers

Our research at the LSHTM is very broad, and ranges from reviews of clinical practice (two of our team are on the committee for reviewing the NICE guidelines) to our research on the immunology and virology of ME/CFS. There is research happening in the UK, Europe, Latin America, Australia and North America all using samples from the UKMEB. Over the last few years, samples have been sent to a variety of places overseas, for example, to Brazil (to do work on retroviruses), to Israel, and to Vermont in the USA (for studies on antibodies). In addition, closer to home, these samples have been sent to Oxford, Edinburgh and Dundee, to work with scientists like Dr Karl Morten, Prof Chris Ponting and Prof Faisel Khan.

See the list of our current Biobank users here:

Map of CureME collaborations and UKMEB global sample distribution

In 2018, we won 2nd place in Biobank of the Year. The UKMEB is a rich resource; making these samples available to other researchers increases the chances of achieving much-needed breakthroughs in the aetiology and treatment of ME/CFS, in the most cost-effective manner. Full details of our holdings in both data and blood samples are listed in the tables below:

UKMEB participants with comprehensive data and bloods stored

Time points assessed  People with ME/CFS: mildly/ moderately affected (n)  People with ME/CFS: severely affected (n)  Healthy controls (n)  People with MS (n)
1 time point2637913669
2 time points126)667847
3 time points2938
4 time points732
5 time points224

Details of sample and data availability

Biological samplesData: LaboratoryData: QuestionnairesData: Clinical examination
Whole blood




Blood for RNA extraction (Pax Gene)

Red Blood Cells (RBCs)
Routine lab tests


Virology     (CMV and EBV status)  
Clinical data (symptomology)

Socio-demographic:  Family health

Personal health
and occupational

Potential risk factors

SF-36 V2TM

General Health Questionnaire (GHQ)

Fatigue/Pain Analog Scales

Epworth Sleepiness Scale

Energy/Fatigue Scale(EFS)

Fatigue Severity Scale (FSS)
Anthropometric measurements

Dipstick urinalysis

Blood pressure, heart rate, pulse oximetry

Hand grip

Further information on accessing the Biobank and these samples is detailed on our website:
If you would like to discuss the process further, please email Caroline Kingdon, at [email protected].

Finally, we are continually thankful for the generosity of our participants, who have come back time and time again to help make this science possible.

– The CureME Research Team

Share on facebook
Share on twitter
Share on whatsapp
Share on google
Share on email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Waiting for Superman Book on table

Waiting for Superman – UK Book Giveaway and Review

Do you want to win a free copy of Waiting for Superman? We have three copies to give away to people in the UK!  To enter, all you have to do is follow #MEAction UK on Instagram, like and comment on this post. The deadline is 9am (GMT) Monday 8th March! Win a copy! Thank

Read More »
#MEAction activists outside Scottish Parliament

Scottish Election! Ask your MSPs to support people with ME

If you live in Scotland, please join our campaign to ask your MSPs to pledge their support for people with ME. Email your MSPs The Holyrood elections are coming up on 6 May 2021 and we want to make sure that MSPs are aware of ME and the desperate need for support. There are more

Read More »
Terri Wilder - #MEAction Activist Camp

#MEAction’s ACTIVIST CAMP! – the Highlights!

It’s a wrap! Last weekend concluded the final session #MEAction’s first ever ACTIVIST CAMP!, a teach-in series for activists in the United States. We are so proud of this program and what it has accomplished. Congrats to our new grads!  #MEAction ACTIVIST CAMP! aimed to deepen our campers’ engagement with activism – teaching our collective

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.


Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Scroll to Top