Research Projects

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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.

We have also summarised those studies that have recently been published, or are awaiting publication, together with those we have supported in collaboration with other funding bodies like the Medical Research Council or other charities.

And, we provide position statements on longer-term initiatives like clinical trials of Rituximab, and the Post-Mortem Tissue Bank – including how you can donate tissue to M.E. Research after death.

Research Infrastructure

The ME/CFS Biobank at the Royal Free Hospital in London  

Members of the ME/CFS Biobank team.

The ME Association Ramsay Research Fund covers all the basic running costs of the ME/CFS Biobank.

The ME/CFS Biobank Steering Group is chaired by ME Association Medical Adviser, Dr Charles Shepherd.

It was launched in August 2011 following extensive consultation with professionals and patient representatives.

This new bioresource, which aims to enhance research into ME/CFS in relation to pathophysiology, biomarkers and therapeutic approaches, now has international acclaim with samples being used by research groups in various parts of the world.

Blood samples are collected from volunteers with very carefully diagnosed ME/CFS (Canadian and Fukuda diagnostic criteria) in designated locations and rapidly transported to the Royal Free Hospital in London – where the ME/CFS Biobank forms part of the University College London Biobank.

The samples are then processed into different components and stored before being released to researchers whose research proposals have gone through rigorous ethical approval and peer review.

RRF investment = Approx. £80,000 per year for 2018 and 2019.

Read more…

Current Research Studies

1. 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.

RRF investment = £25,000

2. Dr Karl Morten et al., Universities of Oxford and Newcastle

Examining metabolites in ME/CFS. Scientists from 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.

RRF investment = £100,000

3. Professor Elisa Oltra et al., University of Valencia, Spain

Examination of MicroRNA profiles in peripheral blood mononuclear cells (PBMCs) and exosome-enriched vesicles in ME/CFS. This study is focused on samples from the ME/CFS Biobank that were obtained from those severely affected by the disease.

RRF investment = £50,000

4. Dr Luis Nacul et al., LSHTM ME/CFS Biobank team and University College London

Examination of immune system status and energy metabolism in ME/CFS. The B- and T-cell main study will examine samples from 100 patients (50 moderate: 50 severe) and 100 controls (50 healthy: 50 MS) using flow cytometry.

RRF investment = Approx. £50,000

Read more…

Research recently published (or being prepared for publication)

1. Nijs et al., University of Vrije, Brussels (2017) Role of autonomic function in exercise-induced endogenous analgesia in ME/CFS

Measurements of ANS activity (i.e. pulse rate, blood pressure, respiratory rate) were carried out before and after exercise along with self-reporting of pain levels. The study concluded that there is dysfunctional exercise-induced analgesia in people with ME/CFS.

This is an important new finding that helps to increase our understanding of why pain occurs in ME/CFS and something that could lead to more effective methods of both prevention and treatment of pain in ME/CFS.

Read more…

2. Newton, Gotts et al., University of Newcastle (2015) Sleep Disturbance and Management in ME/CFS

Sleep abnormalities and specific types of sleep disturbance were thoroughly assessed in 40 patients recruited from Professor Julia Newton’s research group in Newcastle.

A tailored sleep management programme was devised based on this information and delivered in collaboration with each patient.

Read more…

3. Boulton et al., University of Newcastle (Unpublished) Comparison of results from a commercial and NHS blood test to assess mitochondrial function in ME/CFS

This study has been comparing the results of a commercial blood test for mitochondrial function that has been developed by Dr Sarah Myhill and colleagues with the results from an international and widely accepted test that has a long and successful track record in clinical diagnosis and research of muscle disease particularly in the UK.

The aim is to determine the efficacy of each set of tests in relation to ME/CFS. In the case that a synergy between the two diagnostic approaches exists, it is hoped that this preliminary study will promote an investigation into a more inclusive and highly resolved analytical technique for metabolic testing of people with ME/CFS.

RRF Investment = £21,305

Collaborative research recently published (or being prepared for publication) 

1. Tomas et al., University of Newcastle (2017) Cellular bioenergetic deficiencies in ME/CFS

2. Elson et al., University of Newcastle (2017) Mitochondrial DNA mutations in ME/CFS

3. McArdle et al., University of Liverpool (Part Published 2015) Abnormalities in Mitochondrial Function in Skeletal Muscle

4. Todryk et al., University of Newcastle (Unpublished) Immune system dysfunction in ME/CFS

This is a 16-month study that examined the way the immune system responds, particularly against infections, in people with ME/CFS. Patients were recruited from the Newcastle NHS ME/CFS specialist service.

At the launch of the initiative, Professor Todryk commented:

“Because many different known diseases also have fatigue as one of their symptoms, this suggests that several processes may come into play to cause it. Uncontrolled immune responses appear to be important in fatigue, and infections – that’s viruses, bacteria, fungi and parasites – are major initiators of immune responses, some of which are associated with ME/CFS. We want work out if those immune responses can be used to diagnose M.E./CFS, and if they can be targeted for treatment.”

  • This research was jointly funded with Action for M.E.
  • RRF Investment = £19,500

Position statements:
Long-term research projects and donating to post-mortem research

1. Rituximab

The ME Association believed that the drug Rituximab represented the most important development so far in terms of a potential disease altering treatment for at least a sub-group of people with ME/CFS. This was until we heard the discouraging news from the phase III clinical trial in Norway (see below) at the end of 2017.

We had set aside a specific amount of funds for a clinical trial of Rituximab in the UK and were willing to consider all high quality research applications. As it is we await the formal publication of the Norwegian clinical trial results and will then determine the best course of action moving forward.

Read more…

2. Post mortem Tissue Sampling and The 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 Bank where greater numbers of samples can be collected and stored for vital research.

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.

Read more…

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.

Read more…

Please Support M.E. Research

How you can help

Please help us to build on our success and continue to expand our vital work. One day we will find the cause of ME/CFS and have an effective form of treatment. And with your help, that day could come much sooner.

If you would like to help the Ramsay Research Fund invest in even more biomedical research, please donate now:

  • Donate to us through BT MyDonatewith either a single online donation, or click the button opposite
  • by cheque (made payable to: The ME Association Ramsay Research Fund) to: The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF.
  • by card donation over the phone to our head office (01280 818964)

Or, if you would like to fundraise for the Ramsay Research Fund, please start your online giving page, here.

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.

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ME Association Registered Charity Number 801279


 

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