Image description: The picture shows a person lying in bed with severe ME/CFS. They have an eye mask on their forehead. The title reads The UK ME/CFS Biobank: People with severe form of illness needed for HHV-6 study! ME Association logo bottom right. CureME logo bottom centre.

The UK ME/CFS Biobank: People with severe form of illness needed for HHV-6 study!

We are currently seeking individuals diagnosed with severe ME to participate in our Human Herpesvirus 6 (HHV-6) study. We have successfully recruited participants with mild/moderate ME and healthy controls, however, we’re still looking for people who are severely affected to take part.

Including people with severe or very severe ME is essential for thoroughly investigating the connection between ME/CFS and HHV-6. Gaining insight into how these groups relate to HHV-6 could provide invaluable understanding of the condition.

What is the HHV-6 Study? 

“We started looking at all of the herpesviruses a few years ago, because there was evidence of ongoing viral infections in people with ME/CFS, based on aberrant cytotoxic immune cells, and also because they have complex latency/reactivation life cycles, and we hypothesised that relapse/remission in ME/CFS might be linked with herpesvirus reactivation.

“In our pilot study (Lee et al, Frontiers Med, 2021) we measured DNA concentrations of all the herpesviruses in saliva from people with ME/CFS, and found that HHV-6B was the main herpesvirus whose concentration correlated with symptom severity. We are now investigating this in more detail. Our findings are complementary to those reported by Bupesh Prusty et al in 2022.”

Dr. Jacqueline Cliff, Head of Immunology.

Our research team is embarking on a study designed to explore the association and temporal relationship between HHV-6 DNA concentration and the severity of ME/CFS. Herpesviruses are of interest to researchers in the ME/CFS community due to their potential to affect the immune system and overall health.

How can I help? 

We are actively seeking people aged 18-59 with severe or very severe ME to participate in our HHV-6 study.

  • You should not be taking any drugs that could affect the immune system (these include steroids and antiviral drugs).
  • You should not have a history of major illnesses including cancer, heart disease or major psychiatric illness.
  • Your ME/CFS must have been diagnosed by a GP or specialist.

We recognise the challenges that individuals with severe ME experience when participating in studies, so we aim to make it as accessible as possible:

  • You will receive specially designed packages for saliva collection, allowing for non-invasive and convenient biological sample collection.
  • Over six months, you will return these samples for analysis.  
  • Additionally, you will be asked to complete weekly symptom questionnaires online using our new CureME participant portal. 

How to get involved:

Fill out our contact form and a member of the team will get back to you. Thank you!

It has collected over 30,000 aliquots of blood from patients with ME/CFS and multiple sclerosis (as well as healthy controls), using a rigorous and consistent set of scientific protocols.

Update (01.03.24)

Thank you to everyone who responded to the request for people who are severely affected to become participants in this research. Recruitment has been extremely successful and has been paused to assess potential participants.

The MEA Ramsay Research Fund

We believe the UK ME/CFS Biobank (UKMEB) is an essential resource and we are very proud of its achievements. The ME Association via its Ramsay Research Fund financially supports the UKMEB and has done since its creation in 2011. It currently costs around £80,000 each year to keep the Biobank operational.
Biological samples and clinical data from people with ME/CFS and MS (as well as healthy controls) are held in frozen storage at the Royal Free Hospital, while the Biobank research team is based at the London School of Hygiene and Tropical Medicine. Over 30,000 aliquots of blood have been collected using rigorous and consistent scientific protocols. These samples are used by the Biobank team and other researchers in the UK and by an increasing number overseas.
The quality and affordability of the samples and the clinical data help to advance understanding about this devastating medical condition.
We are currently working with the Biobank team to make more samples available and to raise awareness of this resource among a wider research community.

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