We provide an overview of the current ME/CFS infrastructure investment and the research studies that are taking place with financial support from the MEA Ramsay Research Fund. And, we provide position statements on the proposed UK clinical trial of Rituximab and the Post-Mortem Tissue Bank – including how you can donate tissue to ME/CFS Research after death.
The ME Biobank at the Royal Free Hospital in London
The ME Association Ramsay Research Fund covers all the basic running costs of the ME Biobank and Dr Charles Shepherd is Chair of the Biobank Steering Group.
The Biobank was launched in August 2011 following extensive consultation with professionals and patient representatives.
To date the Ramsay Research Fund has invested c.£380,000 in the M.E. Biobank which will cover running costs until 2021 when we hope the project will be self-sustaining.
Current Research Studies
1. Dr Nicola Clague-Baker, University of Leicester
The ME Association is excited to announce a new research study that will examine the feasibility of measuring various physiological data during daily activity in people with M.E. at home.
The study is titled: “Feasibility of investigating oxygen consumption (VO2), Heart Rate, Blood Pressure, lactic acid levels and activity levels of people with ME during normal daily activities.”
The research will be led by Dr Nicola Clague-Baker, an Associate Professor of Physiotherapy and lecturer at the University of Leicester.
Recruitment has been delayed because of the Covid-19 pandemic, but is expected to begin by the end of this year or early in 2021. Participants will be recruited online once ethical approval has been granted.
Dr Clague-Baker will carry out this feasibility study alongside colleagues from Physios 4 ME and with help from Dr Betsy Keller from Ithica College in New York.
RRF Investment = £30,000
2. Dr Keith Geraghty, University of Manchester
This study will centre around a national patient survey that will determine the factors affecting diagnosis and highlight any issues that may relate to delays in the diagnostic process…
We hope that the analysed data when published will lead to improvements in the current process that will benefit future generations.
Investment = £25,000
3. Dr Karl Morten et al. University of Oxford
Recently preliminary investigations at 3 independent laboratories highlighted that there may be an anomaly present in the blood plasma of people with ME/CFS that is adversely affecting mitochondrial performance in healthy cells.
Dr Morten and his team will attempt to determine if this anomaly can be isolated and identified. They will be working closely with Dr Pawel Zalewski from Nicolaus Copernicus University, in Poland and using samples from his own work on ME…
RRF Investment = c.£75,000
4. Dr Keith Geraghty, University of Manchester
Critical examination of the theoretical basis that underlies the use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) in ME/CFS.
This two year award has been given to Dr Keith Geraghty at the University of Manchester and will challenge and review the theoretical basis and clinical application of CBT and GET in the NHS…
RRF investment = £25,000
5. Dr Karl Morten et al., Universities of Oxford and Newcastle
Scientists from the Universities of Oxford and Newcastle are spending 12 months analysing nearly 300 blood samples from the UK ME/CFS Biobank to look for small molecular clues known as metabolites. These are left behind after chemical reactions have taken place at a cellular level.
It is hoped that this research will identify patterns of metabolites that could help to form either a diagnostic test for ME/CFS or help to sub-group people that come under the ME/CFS umbrella…
RRF investment = £100,000
6. Dr Luis Nacul et al., LSHTM ME Biobank team and University College London
This research study will further examine both immune system dysfunction in ME/CFS and defects in the way that energy is being produced at a cellular level…
- It will investigate how abnormalities in this part of the immune system are linked with evidence that is now emerging of a disturbance in the way that energy is being produced at a cellular level in ME/CFS…
- It will draw on the expertise not only of the CureME clinical research team but also of other experts in immunology at the LSHTM.
This research will also involve a small pilot collaboration with Dr Christopher Armstrong’s research team in Australia – who are looking at metabolic (chemical) changes in the blood that occur during energy production…
RRF investment = c.£50,000
Long-term projects & donating to post-mortem research
1. Post-mortem Tissue Sampling & UK ME/CFS Post-mortem Tissue Bank
The ME Association is the only charity involved in the collection of post-mortem tissue samples from people diagnosed with ME/CFS in the UK. Our long-term aim is to establish a national ME/CFS Post-mortem Tissue Bane where greater numbers of samples can be collected, stored, and studied.
If you would like to donate post mortem tissue for ME/CFS research then you need to make this clear by completing a Statement of Intent which can be kept with your Will or in a Codicil to your Will. Your next of kin will also need to know about this instruction and where they can locate it.
The ME Association had believed that the drug Rituximab represented the most important development in terms of a potential disease altering treatment. Early studies had indicated the drug might be effective in at least a subgroup of people with M.E.
This was until we heard the discouraging news from the phase III clinical trial in Norway at the end of 2017. Formal publication of the trial results were made in April 2019 by lead researchers, Dr Øystein Fluge and Dr Olav Mella, from Haukeland University Hospital, Bergen.
3. The ME/CFS Disease Register
Action for M.E., the ME Association and ME Research UK jointly released a statement in 2016 updating supporters on the ME/CFS Disease Register project, which came to an end.
The maintenance and regular update of all the information held in the Disease Register is no longer a priority for the limited research funds available to us, and we explain why this is in our statement.
Visit the other pages in this section
- Research Projects:
RRF investment in infrastructure and laboratory research. Also, position statements on long-term initiatives like the Rituximab clinical trial and the Post-Mortem Tissue Bank and how you can donate tissue after death.
- Published Research:
RRF studies from 2000 to present; PACE Trial reanalysis and critical commentary, and MEA illness management reports and critical trial reviews; MEA research summaries and research updates.
- Volunteering for Research:
ME/CFS research requiring volunteers.
- CFS/ME Research Collaborative:
The ME Association is an active member of the Executive Board of the CMRC. Here you can learn more about this organisation, become a member, read the conference reviews, and meeting summaries.