Part of the MEGA team, the Patient Advisory Group has 12 members, all of whom have direct experience of ME/CFS as a patient or a carer.
The purpose of the group is to contribute to the MEGA study by:
- actively engaging in the design of the MEGA study and to be participants in its conduct
- identifying any potential practical issues for participants, questions, gaps or concerns about the study and to comment on study documents and procedures
- contributing to, and informing, the planning process for securing funding, recruiting participants and disseminating results.
The group is part of the MEGA team but is not able to answer individual queries about the MEGA study – please see our Q&A if you would like to know more about how the funding, design and progress of the study. If you can’t find the answer to your question, please use our Contact Us page.
Following a discussion at their first meeting in December 2016, Patient Advisory Group members made individual decisions about whether they wished to be named, and agreed that the following list should be published.
- One member has chosen to remain entirely anonymous.
- Two members have chosen to share details about why they want to be involved in MEGA but not give their name
- Nine members have chosen to give their first name, pseudonym or full name and explain why they want to be involved in MEGA.
“I have had ME/CFS since September 1997 when I was in my mid-30s, first severely for about a year, and have since then slowly improved to moderate ME/CFS with up to three bad days a week where I am bedbound. I have a bachelor’s degree in law and was training to be a solicitor when I became ill and have not quite recovered since. I hope to make a useful contribution to the scope and design of the proposed research study.”
“I am a physics graduate and former science teacher. I have experience of committee work and both charity and school governance. ME/CFS has impacted my family for many years. As a child I grew up with my younger sister bedbound with severe ME. I have seen what this illness can do at its worst. I myself have been ill with ME/CFS for ten years. I am currently moderately affected. I use a wheelchair when out and am often housebound. My eldest child has had ME/CFS for three years. She is also moderately affected and unable to attend school. I am keen that the voices of patients be heard in order to ensure that the MEGA research is as robust and effective as possible within the practical and funding constraints. I believe that this MEGA project is an example of the biomedical research that my family, and other ME/CFS patients, desperately need. I hope that I can contribute to making it a success. I am choosing not to share my full name to respect the privacy of the members of my family affected by ME/CFS.”
“Having had ME/CFS for 10 years varying from moderate to severe, I understand the intensity of this illness. With a science degree and a background in communications I believe hard questions, clear answers and nuanced dialogue between scientists and patients is key to the success of this project. I am keen to get involved with the design of this study to ensure that it truly meets the needs of patients, including the severely affected.”
“I have had a diagnosis of ME for 16 years and when able I have worked with other patients, medical staff and researchers in voluntary and paid roles that in the main aimed to support others. I wanted to bring this experience and knowledge of ME to MEGA to try and ensure this exciting study is as good as it can possibly be. We’ve waited such a long time for our disease to be investigated in this way, I think it’s vital we give these researchers as much support as we possibly can.”
Member who has chosen not to give their name
“I became ill with ME 19 years ago, whilst working as a doctor in General Practice. Although I was fortunate to have sympathetic medical care, I soon realised that there was very little knowledge in mainstream medicine about ME or its variety of manifestations, including the food allergies/intolerances that I had experienced. I have been interested in raising awareness and promoting biomedical research, which I have been doing as a member of a small charity, over the last few years. I believe that the MEGA research project is important, in order to have better understanding of the different subtypes of the disease and to inform further research. I am excited to have been selected as a member of the advisory group and hope that I can make a positive contribution towards making this project as successful as possible.”
“I suffered from moderate ME/CFS for four years in my early twenties following severe mononucleosis after travelling. I recovered after taking antiviral medication and lived a full life for seven years, but relapsed two years ago. In my petitions for help as a patient I have been outright shunned with indignance, shrugged off with indifference, misdiagnosed through ignorance and ineptitude, and pitied out of helplessness. Research is where the real difference is made in medicine, and solid research is sorely needed for ME/CFS. This has been evident to me since 2004 and it is why I have undertaken what I have since then. During my recovery years I worked as a clinical research technician and completed five years of PhD training in immunology, with an emphasis in genetics, translational research, biostatistics and computational analysis of large datasets. I speak with the experience of a patient and the mind of a scientist and am therefore uniquely qualified to contribute to the design of ME/CFS studies.”
“I was a lecturer until my teenage daughter became ill with ME/CFS over five years ago. I am her full-time carer. She was bedbound and too ill for any form of schooling for three years; she has been able to engage with education on a part-time basis during the past two years. Like so many, I am very keen to understand the causes of ME/CFS, and I hope that sooner rather than later a cure will be found.”
“A recovered ME/CFS sufferer who had severe post viral syndrome for seven years, and was very active with Westcare UK from 2000 to 2004 as a volunteer telephone support worker, etc. Now looking to help in future studies and research into the causes of the illness.”
“I have personal experience of ME/CFS since 1983 (mis/undiagnosed until 2006, and incorrectly treated as a secondary condition 2006-11) and am a carer/supporter, with my wife, of two daughters with ME/CFS since 2009. My interest in finding long-overdue, research-based solutions for this Cinderella condition could not for some time have been higher, especially as I am personally familiar with the difficult “whole-family disability” scenario that at least one apparent strain of it is likely to produce. I wish to help provide the basis for progress in tackling a condition that is surrounded by ignorance, which can lead to neglect, mistreatment and (I am a lawyer) injustice.”
“I have worked in the pharmaceutical industry for 13 years and have experience in both GLP and GMP studies at laboratory level. Research and improving people’s quality of life is the driving force behind all studies and I know that it helps millions globally. I was diagnosed with ME four years ago and was very ill with it to start with and still not fully recovered. Like so many others that suffer from this I am desperate for proper biomedical research into the disease and I was very excited to hear about MEGA as this work is long awaited in the UK, especially in Scotland where there is no proper support for patients. I want to contribute and help make a difference and be a voice for patients who desperately need the care and attention they deserve and make a positive contribution towards the research of this disease and help the MEGA team achieve this.”
Member who has chosen not to give their name
“As a result of having ME for 14 years following glandular fever, including five years sudden onset POTS, I have been unable to continue to work as a teacher in the profession I love. I am pleased that, after only small UK biomedical studies into ME in recent years, a large GWAS study is now being proposed. I have a degree in biochemistry, a love of science, and as an ME patient I am conversant with the politics and history around ME research thus far. I welcome this opportunity to ensure we get the best possible research going forward and will do my best to facilitate this.”