A tribute to ‘Bob’ – Robert Courtney, ME activist, fundraiser, researcher, and friend

Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message that precedes it. We at #MEAction are pleased to reproduce both here.

We, some of Bob’s many friends, have put together this tribute to him. We do not think it is appropriate to discuss the circumstances of his death or the treatment that he received until the inquest is over, and will get back to you with more details then. In the meantime, we have created a condolence e-card for his family where, if you like, you can add your own tribute message. Bob was of course very modest, and, like so many of us, his family hadn’t realized just how important Bob was to our community and how much he contributed: finding that out has helped them, so please do sign the card. (To sign the card click on ‘Add Kudo’; there’s no need to give your email address or to register).

We are planning a minute’s silence to coincide with the start of Bob’s funeral. When the funeral date is set, we will announce the timing, and let you know whether the family have chosen a charity to accept donations in his memory.​

Robert Courtney – known to hundreds of fellow ME patients just as ‘Bob’ – passed away on 7 March at the age of 48 at his brother’s home, where he had been staying since December. He had taken his own life, following a dramatic decline in health. To us, his friends, the shock feels tremendous. The loss, incalculable.
He lived for many years in Brighton, and then in Eastbourne, on the south coast of England, but most of us knew him online. And in the online world where bedbound and housebound ME patients gather for friendship and mutual support, Bob was exceptional. He was a gift to our community, and that gift was composed of warmth, wit and kindness. It shone out of him, and we all recognised it.
It didn’t matter that most of us never met him in person or spoke with him on the phone. We may not have known his face or the sound of his voice, but we loved him. As one patient said, ‘It is the mark of the man that I, someone living on the other side of the world who only knew him through his online posting, should feel so deeply saddened by his death.’
His humanity and compassion were absolutely dependable. We could trust him to calm any situation with his wisdom and diplomacy, and many of us went to him in private with our troubles. He was humble and modest about the value of his advice, but it was always even-handed, insightful, and hugely valuable. We would come away calmer, happier, and often having learned something about ourselves.
Bob was gentle, but hated injustice. And when he contracted ME 13 years ago, he quickly realised in what an unjust situation he and other patients found themselves. ME received barely any research funding and there were no effective treatments. Worse, an influential group of researchers were making misleading claims that talking therapy and exercise could cure the disease – whereas in fact, the exercise therapy in particular was harming patients.
So Bob took action, joining with other patients to expose the poor quality of the research behind this approach. His background was as a care worker in a psychiatric home and, while he had no academic training, his intellect was such that he became a skilled and respected researcher, publishing research letters in the British Medical Journal, Lancet Psychiatry, Psychological Medicine and other prestigious journals.
His meticulous, dogged Freedom of Information requests began a shared and arduous quest for the truth about the research, along with other patient-researchers. This work led ultimately to the revelation that the supposedly successful £5 million, government-funded PACE trial of talking therapy and exercise for ME patients was, in fact, a failure. Bob’s name will appear as the co-author of a paper on the subject, to be published in a well known peer-reviewed journal at the end of March.
Bob did many other things behind the scenes to fight for patients, including being a key member of the Microbe Discovery Project, a patient-led fundraising team that has so far raised over £1 million for crucial biomedical research into ME. And on every project into which he poured his severely limited energy, he was a rock for the other patients working with him. A rock with a sense of humour, in fact. An online colleague of Bob’s has said, ‘What sticks with me about Bob is that every time we chatted on the phone, we fell about laughing, even in the blackest times.’
Bob’s efforts have helped tremendously to turn things around for patients, and his work will change thousands of lives for the better in the coming years. Dangerous therapies are being left behind; biomedical research is gathering pace; things are moving in the right direction, and Bob lived long enough to see that change begin.
But, as one of Bob’s friends has said, despite Bob’s many, many achievements, the most remarkable thing about him was who he was. He was respected and much-loved worldwide. Tributes have flooded in from all over the Internet from patients paying their respects and expressing their loss. They mention how dedicated and caring he was, how empathetic and generous of heart; what a wonderful example he set for others, and how he was the best and fairest of us.
He touched many, many lives – we’ll never know how many – reaching out to other patients and welcoming them into the community. ‘I can’t really think of adequate words to explain the difference he made to my life,’ wrote one patient. So many of us feel the same.
We have lost a great man, a powerful force for good. We hope it will bring some little comfort to his family and those who loved him to know that despite his terrible illness, he achieved such extraordinary things and did so much for others. But it’s his warmth, his kindness and his humour that we’ll miss most. For those of us who worked with him closely, he was quite simply one of the loveliest people we’ve ever known.
We were fortunate and honoured to have known him, and we will not forget him. Rest in peace, Bob.

Bob in 2009

9 thoughts on “A tribute to ‘Bob’ – Robert Courtney, ME activist, fundraiser, researcher, and friend”

    1. We must try to somehow record the deaths of those who commit suicide because of their ME/CFS, in order to convince those in power/ the general public how dreadful this illness is, and also in order to refute the claim that ME/CFS is not fatal.

  1. So sorry to read about Bob, his loss is tragic. He helped so many.
    When will governments and the medical establishment SEE ME is a very serious, life shattering disease? When will they act meaningfully, and with urgency?
    To everyone in the ME community, please don’t lose heart. Please fight on, so that those in power see ME!

    1. Thank you for your comments. I only wish that people in positions to make a change could understand that the debate is not about whether you understand this illness or not, it is about people profoundly suffering. There can be no debate about that. If they choose to spend even a minimal amount of time with those that are suffering it will become apparent that something significant needs to change.

  2. So incredibly sorry to hear. My heart goes out to his family and friends! Hat off to him for having taken so much action to fight for the rights of ME patients, despite being ill himself.

  3. Saddened that life overcame you Bob but it’s clear the long lasting legacy you have left behind.

  4. I am terribly sorry for the news. I did not know Bob but I am deeply grateful to him for his work and efforts to make this diesease recognised as a physical illness. I have been recently diagnosed and I would be in a far worst postition hadn’t he be fighting my same battle ahead of me. Rest in peace Bob.

  5. Though y wife has had MECFS for probably 15 years, most of it undiagnosed, I am new to MEACTION. Hearing of Bob for the first time, I am deeply touched by the depth of his humanity in committing himself to doing all he could and particularly for being so caring with those who reached out to him. As I prepare to actively participate in MEACTION, Bob’s example will be a source of inspiration, especially when feeling less than hopeful over progress towards public understanding and political support. For me, the most powerful part of Bob’s story is his kindness in being available to others. He is a role model.

  6. My condolences to his family, friends and all who knew him. I did not know him but I can understand some of the suffering he experienced that led to his death. This is not just a serious illness but it is profoundly serious. I hope his passing has taken him to a place of peace and freedom.

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