Moves to increase the number of blood donations to the UK ME/CFS Biobank from people with severe ME/CFS, as well as from healthy controls, have been announced following a steering group meeting earlier this week.
The ME/CFS Biobank, which has always been willing to recruit and visit severely ill and housebound people in their own homes, would like to hear from people living within easy reach of central London or Cambridge who could arrange a morning appointment.
The biobank nurse, Caroline Kingdon (pictured), then has to rush samples back to the biobank at the Royal Free Hospital in London in order for them to be booked in by 2pm the same day.
“I can visit people in Norfolk, Suffolk or Cambridge as well as Essex and Greater London – that is anyone within an hour and a half's drive of the Royal Free Hospital at Hampstead or my home in Cambridge”, explains Caroline.
“Perhaps severely affected potential donors who know of another severely affected person nearby wishing to take part could coordinate their applications – that way I can visit both of them the same morning.
“Or someone who is severely affected might be able to ask a healthy control to take part. I could then see them both at the same house or in the same area.”
Healthy controls should be aged 18 to 60, be a non-blood relative, and not have any significant disease or health problem.
Caroline added: “I have already visited many home and bed-bound participants and found that people feel very empowered by being able to contribute to research by being in the study.
“This is even when they have to summon up every ounce of energy to take part, and the process leaves them wrung out.”
If you would like to volunteer to be a biobank blood donor, you should have had a formal diagnosis of ME/CFS, be aged between 18 and 60 and have had the illness for over than six months. You should also not have any other serious illness such as diabetes, heart disease or cancer.
During Caroline's home visits, she will undertake a clinical assessment which will include simple body measurements, blood pressure readings, a basic lung function test and measurement of physical strength before taking blood. The whole procedure will take around 45 minutes.
To find out more, please contact Caroline Kingdon at caroline.kingdon@lshtm.ac.uk. Put ‘Possible severely affected volunteer' in the email header.
The ME/CFS Biobank functions as an open resource for clinical and biomedical research into ME/CFS, and in particular for research leading to the discovery of biomarkers for the diagnosis, prognosis, and stratification (sub-grouping) of cases, enabling a wide range of research studies now and in the future.
More information on the UK ME/CFS Biobank can be found here: www.lshtm.ac.uk/itd/crd/research/cure-me/ukmecfsbiobank/