Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

In Memory of Bob: A tribute from his friends

Discussion in 'In Memory of ...' started by Graham, Mar 9, 2018.

  1. Graham

    Graham Senior Moment

    Sussex, UK


    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. ( - click on Add Kudos.

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

    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.
    Last edited by a moderator: Mar 20, 2018
    RobR, StarChild56, alkt and 51 others like this.
  2. Countrygirl

    Countrygirl Senior Member

    Graham I am totaly shocked!

    I had been speaking with Bob on the phone and with Dr Willy Weir who very kindly offered to help him. WW then contacted me when Bob said he had deteriorated a couple of weeks ago to say Prof Jonathon Brostoff would join him in visiting Bob on Sunday.I have been waiting for a reply from Bob to see how the visit went and I was so concerned that he hadn't responded and assumed that he had become too ill to write.

    Just stunned............I don;t know what to say. This is appalling.

    In tears!
    StarChild56, alkt, leelaplay and 13 others like this.
  3. Gingergrrl

    Gingergrrl Senior Member

    @Graham I am saddened, angry, and heartbroken to learn of this news and I so sorry for the loss of your dear friend, Bob. I did not know him as well as you did but I was always struck by what a true gentleman and kind soul he was. Once again, we have truly lost one of the good guys. We will miss you Bob and deepest condolences to all of your family and friends. May your memory be a blessing to all who mourn you. @Countrygirl, I am crying, too. God bless you Bob, you fought like hell. You will never be forgotten.
    StarChild56, alkt, Misfit Toy and 7 others like this.
  4. Countrygirl

    Countrygirl Senior Member

    Following the tragic news about Bob, I have just been contacted by someone who wants to talk on the phone. Her sister has received an email from her son whose ME, which he had in childhood, has returned. He explained he can;t live with it anymore. It has now been discovered that he took a tent and a gas cannister into the woodland and sealed the tent. his body has been recovered now.

    How many more before certain people are called to account and this appalling misjustice is remedied?

    A very, very sad day.
    StarChild56, lenora, alkt and 15 others like this.
  5. Sean

    Sean Senior Member

    RIP, Bob. You earned it as much as anybody in this crazy fucked-up world.
    StarChild56, alkt, Misfit Toy and 8 others like this.
  6. Molly98

    Molly98 Senior Member

    So so sorry and saddened to hear this tragic news, my thoughts go out to his family and his friends. Just awful.
  7. MEMum

    MEMum Senior Member

    Wessely et al have so much blood on their hands.
  8. bertiedog

    bertiedog Senior Member

    South East England, UK
    I also feel devastated by this shocking news regarding Bob and also the sad news @Countrygirl has posted. It feels like only a few weeks ago when I had a conversation with him regarding his gut issues but he had been clear to us all of how sick he had been for the time he had been away but he was obviously very ill.

    The way he was treated here in the UK was an absolute disgrace and for the life of me I cannot understand why such a lovely man like Bob should have virtually been locked up because he had ME and was unable to eat in a "normal" manner.

    Shame on our NHS and the doctors who so badly let him down. Truly disgusting.

    StarChild56, lenora, alkt and 14 others like this.
  9. Mel9

    Mel9 Senior Member

    NSW Australia
    Very very sad we have lost Bob. What a miserable disease. How he suffered.
    StarChild56, alkt, Sushi and 6 others like this.
  10. AndyPandy

    AndyPandy Making the most of it

    Heartbreaking news.

    Shedding tears for Bob and the other young man.

    May they rest in peace.
  11. Dan_USAAZ

    Dan_USAAZ Senior Member

    Phoenix, AZ
    This is very sad news and I am sorry for your loss.

    I did not know Bob outside of PR, but was one of his fans on the forum. His balanced temperament and logical way of looking at details, combined with his ability to put complex topics into layman’s terms made him one of my favorite reads.

    Very sad to hear what he had to endure this last year. RIP
    StarChild56, alkt, Sushi and 8 others like this.
  12. Comet

    Comet I'm Not Imaginary

    Heartbreaking news. I only knew Bob through his posts here on the forum, but always thought he was a lovely person with a lovely heart. I am so sad to learn that he has passed.

    Deepest condolences to his friends and family. I am sure he will be deeply missed.

    He is one of my heroes. May he find peace.
    StarChild56, alkt, Sushi and 9 others like this.
  13. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    This was the last thing I expected/wanted to read today. All I can say is "Oh no" :cry:
    I hope Bob is in a better place now.:depressed:
    StarChild56, alkt, Sushi and 7 others like this.
  14. Gingergrrl

    Gingergrrl Senior Member

    I know what you mean @bertiedog and this never gets any easier when we lose someone from PR. It was only a few weeks ago that I was talking with Bob re: trying to find a safe food that he could tolerate. We were talking about sweet potatoes and I had wanted to follow up with him and was curious if he had the opportunity to try one (but I also did not want to disturb or bother him so I decided to wait).

    I truly believed he was safe now, being out of hospital, and in the coming months I'd get to ask him about the sweet potato or joke with him (since he always maintained his sense of humor in adversity which I really admired). I am still shocked that he is gone too soon. It's really hard to grasp.
    StarChild56, alkt, Sushi and 7 others like this.
  15. JES

    JES Senior Member

    Sad news regarding Bob. The average doctor will tell you can't die from CFS/ME, but once again it was proven wrong.
    StarChild56, Patchdee, alkt and 11 others like this.
  16. justy

    justy Donate Advocate Demonstrate

    Saddened by this beyond words. Bob and i had been chatting recently about our similar issues with food.
    He was such a kind and balanced presence here on PR and was missed so much when more ill and will be missed even more now by me and many others.
  17. Cort

    Cort Phoenix Rising Founder

    I am so, so, sorry to hear about Bob. When I was posting on PR Bob stood out for his even handedness. His posts were notable for their kindness, compassion and well being. Whenever something controversial happened on PR I always wanted to know where Bob stood. He was a thoughtful, kind person. I'm sorry that he had to endure so much
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Dear Bob,

    You were one of the most interesting, considerate, humane, intelligent people on Phoenix Rising. I was horrified when I read of your mistreatment by the psychs and their allies.

    I looked for your messages every day, and read even the longest, because they were important, and often also shocking.

    But after such a short time you stopped posting again. I kept looking for your messages, and was wondering why they didn't appear. I feared that you might have been unjustly sectioned again. (Why were you sectioned?)

    But it was even worse than that.

    I want to know all, and I want your story told to the public.

    I hope you didn't suffer too much.

    You won't see this of course. I hope you realised how much you meant to so many.

    RIP, dear Bob. I will miss you so much.
  19. Countrygirl

    Countrygirl Senior Member

    Bob wanted medical reports to help protect him from further sectioning. Two were in preparation, but he also wanted one from a psychiatrist too.

    I have only just been sent two names, so, although it is too late for Bob, I will copy them here in case someone else is in a similar position and needs an ME-literate psychiatrist to protect them against inappropriate psychiatric intervention.

    StarChild56, alkt, Sushi and 11 others like this.
  20. Sushi

    Sushi Moderation Resource Albuquerque

    I cannot believe this--I am really shaken. This is a huge loss for the community, his family and friends and our "world." Bob being MIA, is just unthinkable--I am shocked, a world without Bob is a poorer place.

    I'll create a memorial thread for him and copy our posts there. We need to honor him in any ways we can think of.
    StarChild56, alkt, Ruthie24 and 17 others like this.

See more popular forum discussions.

Share This Page