Leading research into ME/CFS

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FAQs

CureME FAQs

Q: Who are we?

A: The CureME team is a very small but committed team of researchers with a background in medicine and epidemiology. We work with a team of experts in a range of areas including immunology, genetics and statistical genomics.

Q: How prevalent do we think the disease is and how do we decide whom to include?

A: Different research groups have found various prevalence rates, depending on the broadness of the case definition used. In a study CureME team members conducted in England, we found a minimum prevalence of 1 in 500 using the CDC ’94 (Fukuda) definition and 1 in 1,000 using the Canadian Consensus Criteria. These figures are lower than some other groups have found in the UK.

For inclusion in our research, we ensure compliance with the Canadian Consensus Criteria or CDC ’94 (Fukuda) criteria. Information on case definition compliance is part of each participant’s records to allow comparison between these groups during analysis as well as with groups captured by other case definitions commonly in use.

Q: What does signing up to participate in this project entail?

A: After reading the information sheet, which explains our study in detail, our participants fill out the informed consent form and also a “symptoms assessment”, which collects information on over 50 symptoms associated with the disease.

After ensuring compliance with the case definitions we are using for our research, Canadian Consensus Criteria and CDC ’94 (Fukuda), we arrange to conduct a half-hour clinical assessment and collect a blood sample from the participant.

At the time of the blood collection, we ask participants to fill out questionnaires covering a range of basic epidemiological/demographic questions, personal and family health history, potential risk factors (such as previous exposures), etc.

We also ask about how the participant is feeling at the time of the blood collection itself, so that we can compare this against what is found in the blood samples and start to look at changes over time. We again ask for information on over 50 different symptoms affecting many of the body’s systems.

Q. What happens to the blood samples after they are collected?

Some of the blood taken is used for standard blood tests to rule out other diseases that could cause symptoms mimicking those of ME/CFS, which might have been missed by the doctor who made the diagnosis.

It is imperative for research purposes that the blood samples be processed and frozen as soon as possible. For our studies, we ensure the samples reach the UCL/RFH BioBank within six hours of being taken.

This means that there are geographical and logistical constraints on who can participate, but as our project grows we hope to work with a number of labs throughout the UK that can receive and process samples, which can then be shipped in batches to the UCL/RFH BioBank for long-term storage and release to researchers.

Q. Are my details safe if I participate?

A. All samples are fully anonymised before receipt by the UCL/RFH BioBank and any identifying information is accessible only to the CureME study team at the London School of Hygiene & Tropical Medicine. This information is kept securely and used only for research purposes, ensuring no person participating in our research can be identified.

Any researchers using the samples will not have access to an individual’s identity beyond gender and age.

Q: How are “severely-affected” participants defined and how do we ensure they are included in our research?

A: There is a broad spectrum of symptom severity with this disease – and thus impact on patients’ lives.

There is no widely-accepted standard for determining disease severity, however the International Consensus Criteria for M.E. classify “mild” disease as about a 50% reduction in pre-illness activity levels, “moderate” as mostly housebound, “severe” as mostly bedbound, and “very severe” as totally bedridden and needing help with the basic functions of living.

Q: Who will have access to the samples in the Biobank?

A: The CureME team at the London School of Hygiene & Tropical Medicine will use some of the samples for our funded research, including the virological, immunological and genetic analyses funded by the U.S. NIH grant.

Additionally, there will be a peer review process for applications from external researchers requesting use of samples. Release of samples will be approved by both the UK ME/CFS Biobank Scientific Sub-committee and the UCL/RFH BioBank Ethical Review Committee.

Researchers must have a proven track record, be at an established institution and present a sound scientific rationale for the proposed study.

Q: What are the Biobank’s priority research areas?

A: All research proposals intending to use samples from the UK ME/CFS Biobank must be in line with the Biobank’s mission* and proposals intending to develop the following types of studies will be prioritised:

  • testing or generating new hypotheses on the mechanisms (pathophysiology) of ME/CFS,
  • improving diagnosis (biomarkers) and phenotyping, and/or,
  • basic science, e.g. pharmacological in vitro studies potentially leading to clinical trials on therapeutic approaches.

This process will ensure that the precious samples are used for ethical, biomedical research studies that have the highest potential for yielding answers to this disease.

Q. What is the Biobank’s mission?

A: To conduct high quality, ethical investigations into ME/CFS and to create an open biobank resource enabling translational research for the clinical and biomedical understanding of the illness, fostering cooperation and collaboration between researchers and thereby enhancing the opportunity for breakthrough discoveries.

Q: Who sets the scientific agenda for our work?

A: Deliverables under contracts are, of course, agreed with funders in advance.  However, at all times we maintain independence and set the scientific agenda and priorities for our work with input from members of our Steering Committee, which includes patient representatives.

The participatory approach we use means that people with ME and their representatives take part in setting our agenda through their input during discussions about our research.

Q: What are our long-term plans for research in this field?

A: We are working with other ME/CFS biobanks to develop an international network of biobanks with harmonised procedures so that researchers have access to different cohorts and we use our limited resources as effectively and efficiently as possible.

We will delve deep with clinical, virological, immunological, and genetic studies to identify subtypes, biomarkers, and potential treatments, which we plan to test in randomized trials.

We also plan to develop further our research into the disability associated with the disease as well as on risk factors and prevention.

Q. How can I participate in CureME’s research?

A: At the moment we are no longer recruiting participants for this study.  In the future we will use the Participant section of this website to make calls for research participants so please keep an eye on this. We have a Facebook page and Twitter account that we will also use to make announcements so please follow us to keep up-to-date.