Updates from the UK ME/CFS Biobank / CureME team

Andy

Andy

Retired committee member
It is an exciting day - the first blood draw for our R01 renewal study, conducted at a participant's home by Research Nurse Caroline Kingdon.

The blood draw will take place in the morning, accompanied by a short clinical assessment - and within 6 hours, the blood will be delivered to the UKMEB to be tested, aliquoted and frozen. This is a unique process in the world of ME/CFS biobanking.

Around 100 people will be giving their blood at 6-month intervals over the next three years.
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From Facebook:
Hi everyone, I hope this clears up any confusion. The UK CureME team have 2 ongoing simultaneous NIH funded studies. The first study (RO1) is conducting research on immunology, virology and gene-expression of ME/CFS, while the second (R21) is a validation study using saliva and/or urine samples to identify viruses.

The first study (RO1) has been renewed as a continuation of the initial project, which began in 2013. The grant renewal will enable comprehensive prospective assessments of cases of ME/CFS at regular intervals. All blood samples taken will be stored at the UK ME/CFS Biobank. We aim to study 100 people over the next 3 years. We will be using participants from the existing cohort and some new recruits. We are currently recruiting and have different ways to recruit to ensure that we have a representative sample, unfortunately not everyone who so generously volunteers to take part in the study and meets the criteria will necessarily be included as we have a limited recruitment capacity. If you would like to express your interest, email: mecfsbiobank@lshtm.ac.uk or contact us via http://cureme.lshtm.ac.uk/contact-us/. If you are in the existing cohort, we will contact the participants who comply with appropriate time intervals of the renewal study.
The second study (R21) involves 60 participants sending saliva and urine samples at regular monthly intervals over the next six months. These samples are stored in the labs at the LSHTM. This study was conducted using a subset of our current Biobank (UKMEB) participants, whose blood samples/data we already have in the Biobank and can cross-reference against. At the moment, we are not recruiting for this study.

It is wonderful to see that so many of you are interested in participating. Without you, our work wouldn’t be as significant and we are thankful when people get in touch.
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I participated in the original study but unfortunately cannot continue to do so as I now take fludrocortisone for my blood pressure. Caroline also took samples from my husband as a healthy control. So even though we are in the depths of Suffolk we were two for the price of one

I am however sending in monthly samples of urine and saliva for the second study. This study also includes extra sample packs for participants to send in samples when they are in a flare.

The biobank team are great, very professional and supportive of the participants.
 
"
Research Assistant or Research Fellow in Epidemiology/Clinical Research
London School of Hygiene & Tropical Medicine - Disability and Eye Health Group
Location: London
Salary: £33,567 to £43,759 per annum, inclusive
Hours: Full Time
Contract Type: Fixed-Term/Contract
Placed on: 7th March 2018
Closes: 27th March 2018
Job Ref: ITD-CRD-2018-05
Applications are invited for a Research Fellow or Research Assistant to join the CureME Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research team in the Disability and Eye Health Group at the London School of Hygiene & Tropical Medicine (LSHTM).

The role presents an exciting opportunity to join a dynamic team working on ME/CFS biomedical research, which includes the UK ME/CFS Biobank, the first of its kind in the UK. The UK ME/CFS Biobank is managed at LSHTM and the samples are processed and stored at the University College London/Royal Free Hospital Biobank. For more information on the work of CureME, please visit http://cureme.lshtm.ac.uk/."
 
Cheshire said:
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Not knowing how many might be expected to apply I asked the question and got this reply from Jack.
Jack said:
Andy - replying in a personal capacity:

I have managed two other recruitments at this level in the last couple of months, one for a project about an infectious disease and another for a qualitative research post (sorry, keeping in deliberately vague).

But the former had a dozen or so applicants, the latter three. 27 is a good level!
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So looks very positive.
 
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