Bob at a MEchat get-together, on his 40th birthday.
Bob, my friend, I'll miss so much your presence on the forums. I could always come to you for support and advice in difficult times. You were a wonderful person and the world is poorer without you. I'm so sorry you're gone. Here's your avatar, in full, for people to remember and admire.
Losing Bob is a great loss for the ME community, especially in the UK. He was knowledgeable and supportive. Many of us are both angry and sad at his passing.
So sad to hear about Bob. A great man who achieved much and will be remembered fondly. My sincere condolences go to his family. xx.
Bob was such a lovely guy, and I still can't believe he's not with us anymore. I worked with him on a bunch of different projects: as well as contributing a lot - he was always the peacemaker when things got heated in the confines of an online project and always entertaining company.
Bob achieved so much: fundraising for research, righting wrongs and exposing poor research through his publications. But he was more remarkable for who he was: great company and a kind and generous man. What a loss.
We all miss you, Bob. Rest in peace.
I only knew Bob from online ME fora, but will miss him so much. He was always kind, compassionate, thoughtful and considerate. He has done so much for all of us with ME, and never sought the limelight. It is a tragedy that he had to go so soon - Rest In Peace dearest Bob. We will remember you. Daisybell
I'd never even seen a picture of Bob before today, much less met him, though I did have the pleasure of talking to him on the phone and exchanging emails with him. He helped me in my early days of learning about the problems in the PACE trial -- and we too ended up laughing. He informed my work exposing the PACE trial in many ways. See, for example, www.statnews.com/2016/09/21....
I know a bit about the absolutely devastating situation he was in as he neared the end of his life, so on one level, I can understand how he would have decided to put an end to it. But on another, I saw how strong his life-force was all the way to the end: The last email I have from him is about his effort to change the absolutely absurd Cochrane Review recommendations about ME/CFS treatment. This was not a man who wanted to die, and he had so much more to give the world.
Bob is one of my heroes, and I'm devastated to have lost him.
Never met Bob, but what an inspirational man, I am so saddened by this news. I feel so connected to him, just by reading all the lovely cards. I have Fibromyalgia and ME and life can be so unfair. Sending love to his family and friends xx
Rest in peace, dear Bob. And thank you for your support and work for the ME community. It hurts to lose you, but I share your pain and pray for relieve for every ME sufferer in the nearer future.
Dear family, I am so sorry for your loss. You are all in my prayers. Bob was a beautiful person and his legacy lives on in you and in many people he influenced by his gentle persistence and good heartedness. Thank you for all you have done for him.
My condolences and deepest sympathy to Bob's family and friends. One of the great cruelties of life is that the better the life lived, the greater the loss.
To belong to communities with so much hurt, pain and suffering involved, and to not hear a single bad word about a person, is a true testament to the man. I hope this is a comfort to those who loved and cared for him.
I am a genuine friend,
and I know a friend to be a friend,
but I turn my back on all evil-doers.
I flatter no one hypocritically,
but those whom I honour
I love from beginning to end.
One of the good guys. Thank you for all you did, Bob
I’m sorry I never got to know you Bob but I knew we were fellow travellers. I’m devastated that you’re gone but full of pride and gratitude for what you fought for and what you achieved for pwme across the world. RIP
Thank you Bob for all the hard work you did for the M.E. community. Our thoughts are with your family. RIP xx
I did not know you well, but from when I was in contact with you, you seemed like a very kind, open-minded and intelligent person. I am so sorry you will not be there to see more change happening for the ME/CFS community in the future.
I am so sorry about the things you had to go through, because of abusive health professionals and an abusive government and it makes me angry that probably noone will ever be held responsible for their acts against you.
I have come across a few of the threads you wrote on phoenixrising in the past, where you summarized important information and had interesting new ideas on how to achieve change. I applaud all the hard work you did for our community. Your achievements will continue to live, aiding other people.
I hope you are in a better place now.
My sincere condolences to Bob's family. I'm so sorry for your loss. He meant so much to so many of us.
I am a M.E. warrior too, so i understand how you must have suffered.
I hope you are in a beautiful place now and i wish your friends and family the best.
My deapest condolences to family and friends. Rest in peace Bob. Xxx
R.I.P Bob, I didn't know you, but as a fellow ME patient and advocate I am truly sorry things got so hard. Your work was invaluable.
THE ME CFS FOUNDATION SOUTH AFRICA
Good Luck 'Bob' ........wishing you all thes best wherever you are and whatever is happening to you, we all will be there one day and our time will be on us then, good flipping luck and all of our best wishes.
Another of countless sufferers lost.
May you find peace.
Sincere condolences to your family and friends Bob. I only knew you briefly online, but it is now clear to me your great endeavours fighting for people with ME will continue to live on, long after the cause is won. R.I.P.
When I 1st fell ill in 2011 I was completely lost and bewildered……… Serendipity found me on the Phoenix Rising Forum…..I’d never even been on a forum before and hadn’t a clue, I wasn’t even on FB…………Bob was the 1st person to welcome me and show me around……… I remember being quite traumatize by the enormity and couldn’t get my head around the denial and the politics of it all and Bob was a great help. He was a shining beacon in the heavy fog of ME.
Bob despite being seriously ill was a true warrior. His constant fight for M.E sufferers was phenomenal. Run free now Bob
I am still struggling to come to terms with the news of your passing, Bob. We had worked together on several advocacy and research projects in the past, exhanged many messages and engaged in much debate on M.E. forums over the years. As happens with this devastating disease, we each withdrew when things got especially tough, but it was only recently I heard just how bad things had been for you. I feel bad for not doing more to reach out but admit I was relieved when you reappeared. Then to learn you had died... It's just so unfair and so cruel to think that such an incredible person will no longer be around.
I don't think anyone really understands the effects of this disease better than the people who have to endure it. I hope at long last things are changing on that front and I know it has a great deal to do with your efforts. I wish you could still be here and see things change for the better. But above all else, I hope you have found peace and relief from pain. My thoughts are with your family at this difficult time.
In the toughest of times it was this man, and the other friends I met alongside him, that kept me going each day with their humour and gentle but knowing support. When we met in person for his birthday it's hard to explain the need I had to hug this shy looking man hesitating outside Fi's flat, but it was overwhelming being able to actually show him what he meant to me. I love the photo Graham posted as it does sum up that wonderful personality that shone through. It's so hard to describe how isolating this illness can be and the importance of those words and moments. This is one of his photos. I used to love walking and it was a chance to get that feeling back through his thoughtfulness in sharing it. I didn't get the chance to tell my beautiful 'Brighton Bob' recently how much his presence meant to me but I hope he knew. As for his massive contribution behind the scenes to change the perception and treatment of ME, a mere thank you will never be enough. It gives me hope that if my daughter should have to face this illness in her future, things might look brighter. You'll be forever missed and never forgotten
So saddened to hear of Bob's passing. I will forever be grateful for all that Bob has done for the ME community. May he rest in peace.
I admired Bob for his intelligence, his kindness and his humour. He was a really an exceptional human being.
On this day when a paper he is a co-author of is out and making the headlines, I am deeply grateful for the hard work he put behind the scene. And so sad that he is not with us to see that happening.
Bob, we will miss you terribly.
Bob, you are so missed from our Community. I still feel shocked that I won't be able to read any more of your wise words.
I only knew you through Phoenix Rising but you were always a voice of reason and we did communicate quite frequently in various threads.
It is tragic what you experienced but you are at peace now, but much missed. RIP Bob
I never had the privalage to meet you or speak to you but your contribution to fight for justice with this disease has been immense. Every patient is eternally grateful. You were an true inspiration. Thank you so very much from the bottom of my heart. You can sleep in piece now with no more suffering. Fly high RIP
Although we never spoken i will be forever thankful for what you have done for our chronic family. One day there will be a cure and your name will be on packs, ill make sure for you. Rest in peace brother, you derseved more than this.
You are so young to go. I used to read your many posts and noticed you hadn’t posted in a long time and wondered . . . why not, what happened, had you gotten much sicker. I am so very sorry to learn that you had gotten much sicker and were caught in the hands of medical MALtreatment. This should not have been. You deserved so much better.
Thank you for your calm and kind demeanour and all that you have done for the M.E. community, including your work on PACE that many of us are just learning about now.
Sad that you are gone, Bob. Another dear soul gone pwme. Rest In Peace.
P.S. It is nice to see the posted pictures of you.
Bob, I know you are going to be missed by so many people. I hope you know how much you achieved, and are able to see the ongoing legacy of your work. We didn't have many interactions but I'll be forever grateful that you reached out to me when I working on an FOI request. RIP
I didn't know Bob but appreciate the sacrifices he made to the CFS/ME community, me being one. Deeply saddened by the news of his loss.
Sympathies go out to Bob's family.
Bob has done so much for people with ME worldwide, I am grateful to him.
I only knew Bob from online ME forums - he was intelligent, witty, kind, modest, wise and he somehow always managed to find the right words.
He will be remembered and missed. My deepest condolences to his family and friends.
There’s a gaping hole left in our community and in my heart. While Bob hasn’t been able to be active on the forums for a while we knew he was still a part of us and I was so glad when he could join in a little again. I will miss Bob’s gentle, kind, intelligent, humble, helpful, calming and fun presence in our lives.
I didn’t know our Bob was Robert Courtney. I am so thankful for his advocacy and efforts for us all to make our voice heard.
A week before the 7th I overdosed with intent to die as I saw no way out of this ME life, but I was saved and showed there is hope.
That hope was made possible through Bob's work.
Bob indirectly saved my life by bringing me hope that eventually things will be better, standards will be improved, treatments will be created and mindsets will be changed.
To me Bob is a hero and he will be sorely missed.
I always imagined Bob, from his posts, which is how I knew him, to be older. His wisdom spoke of many more years on this Earth. I cried when I saw the photos; his humour and kindness and bravery shines in those just as they did in his words online.
Thank you to his close friends and family who helped him achieve and give so much and to endure for so long. Bob made the world a better place in ways small and large and he is greatly missed.
I would have loved to have met you in person and deduced from your avatar that you might be on the south coast, not too far away.
You were a hero in the battle against the psych bullies and inspire many of us to keep fighting.
We will miss you so much and wish that you had been treated humanely, with compassion and understanding, alongside appropriate medical tests and treatment.
You will not be forgotten.
Thank you for all you've done, Bob. My condolences to all those who mourn his passing.
Bob was always an amazing presence on Phoenix Rising. He had such a kind and insightful, yet frequently humorous, way of addressing issues and questions that arose. He would jump right in to help anyone and helped with a couple projects that I recall. I always appreciated his input and would look forward to reading his replies.
It breaks my heart to think of the unjust treatment he endured as well as the suffering he put up with due to his illness. I am incredibly sad to think of the loss your family has to endure now without him. He will leave a huge hole in all of our lives, but nothing compared to what you all must be feeling.
My deepest condolences and a most sincere "thank you" to his family for producing such a fine son and brother.
I had the privilege of meeting Bob at his 40th birthday and sometimes spoke to him when I answered the phone on the occasions he rang us. He was gentle, kind and caring and helped so many people in a quiet way. He will be greatly missed. He is at peace now. Sincere condolences to his family.
I'm not active on the ME/CFS forums so I only knew Bob as the man who used Britain's freedom of information laws to get the PACE data released. He was a hero to me.Despite being ill, he fought for all of us who didn't have the strength to fight for ourselves. I can't imagine where he found that strength - to fight steadily, in the right way, for so long - and in the end, he was the victorious general in the first great battle of ME/CFS.When I learned that he was gone, I wept - for a man I never knew, a man who fought for me and for all those who suffer from this disease, a man who, in winning that fight, made all of our lives better. I wish I could have thanked him. Since I cannot, let me thank all of those who supported and cared for him as he pursued this meaningful work. May you have comfort as you mourn and remember him.
Dearest beautiful Bob gorgeous spirit bless you. Fly the heavens pain free at last. Soar kind soul with love Delfina xxx
So sorry and thank you for all you did
You will be missed x
Few of us were lucky enough to meet Bob in person, but hundreds of patients around the world knew and loved him, and are deeply affected by his death. Millions will be indebted to him for his part in the work to make sure that people with ME are treated fairly.
But it is his warmth, generosity, perception, empathy, and wise advice for which he will, rightly, be remembered and missed.
Bob did great work for the ME cause and his passing is a great loss.
I initially knew Bob through forum posts on Phoenix Rising. He was a great addition to the forum: he made thoughtful contributions both in terms of the science but also in terms of being thoughtful about people's feelings. Some people including probably myself on occasion can forget to an extent there is a human, who may be a bit vulnerable, involved in these discussions especially on anonymous forms and perhaps talk to them differently then one would to their face but Bob was a great example of how to make contributions. This is particularly important on ME fora where participants are very often sensitive to stress. There is a good chance his postings also affected others' posting styles in a positive way so their effect would be beyond just his individual posts.
I then got to know him more closely when working on research matters mainly relating to CBT and GET such as the PACE trial and the Cochrane review of GET. He put a lot of time and energy into his contributions over many years. Like many of us, not all his contributions were accepted for publication but that didn't deter him. He put a lot of energy into reading and engaging in discussions to ensure the quality of what he was saying. He also put a lot of time into helping with the drafts of other people. Some people including myself can focus a lot on our own work but he was very giving in terms of giving feedback on other people's drafts.
I was very sad when Bob first disappeared from the Internet over a year ago. I was then delighted to see him back. It is was devastating then to hear he has been lost for good.
Bob, friend, I am sorry for the difficulties you faced but I'm grateful for all your contributions in different forms. You made a difference as both a patient-researcher and also as a human. May you rest in peace.
I never met Bob but news like this effects our online community in such a big way! A much respected and kind young man xx condolences to all his family and friends xx rest now Bob xxxx
Just from his online words, Bob was eloquent, caring and spoke from his heart. I hope it will bring some comfort to his family and friends that he was so well loved and respected by the online M.E. community. My thoughts are with you all.
II never had the pleasure of meeting Bob or even spoke on line . But in reading what everyone thought of him , sounds like he was a very special young man . Kind and thoughtful. Another beautiful life gone . Thoughts and prayers are with his family . RIP Bob xx ⚘
Lorraine Deacons x
RIP Bob, thank you for everything.
Bob: I was so sad to hear of your passing and so cross that the medical profession let you down so badly when you had done so much to help in the awareness of M.E. and its misleading research. Thank you for all you did. Your family should be very proud of you. Rest in peace now. X
I remember reading some of Bob’s posts on Phoenix Rising. He always came across as gentle, kind and wise - a measured voice and calm presence on the forum. I also didn’t appreciate how much wonderful advocacy he did on behalf of the ME community including his significant contributions in exposing PACE. All of us with ME owe him a lot. I thank him now and send deepest condolences to his family and friends.
I hope that Bob's family knows that he is now safe in Heaven, feeling quite wonderful and being able to do the things he used to. Please know that he is watching over you and that you will see him again. AND THANK YOU BOB, for everything you have done for all us who have this terrible disease!
Dear Bob. I did not know you personally. I have read your name many times, in articles about our illness and seen the fight for truth and justice for people suffering from severe ME, Thanks for everything you have done for us others, Also here in Norway you had friends appreciateing you. Someone have lost their friend, a good support and a family member.
Best regards to those who known you, Bob. Rest in silent peace without pain.
I will read even more of your texts now.
A burning flame From Irene, Norway 20.03.18
So saddened by this tragic news.
Thank you for all the work that you did.
You are in all of our hearts forever. Love to your family and friends.
Karen Morris x
Manchester patient and Healthwatch ME (CFS) national survey
Rest In Peace dear Bob, you will be sadly missed by all
I have just read about Bobs life, passion and death.
I am absolutely sad and shattered. I would like to express my deep felt compassion for his family, friends and everyone who knew Bob.
Rest in Peace.
Although I have never met or read Bob's posts, as a fellow ME/CFS patient I feel this loss deeply. Another loss in the community that should never have happened. From reading the tributes flow in, he sounds like a wonderful person and survivor of this debilitating illness. He will not be forgotten, and will forever be apart of our close-knit ME/CFS community. May he rest in peace.
I was so pleased to meet you Bob, even though it was only for a few times in Brighton. The whole ME community will miss you so much, so very much. It’s very sad. Steven in Brighton.
Rest In Peace Bob. Thanks for your contribution to the ME community.
To Bob's Family: May you find peace and solace knowing how many lives Bob touched in a most positve way.
I sadly never knew Bob personally, but I knew him through his untiring advocacy for ME, for which I and millions of ME patients owe him a huge debt of gratitude, though only now, reading the tributes, have I learned how very much more he did for us than I realised.
Praying for his family and friends in this terrible loss, which is shared by the ME community worldwide.
I hope it will be some comfort to know how very much he was valued by so many people throughout the world. RIP Bob
My deepest condolences to the Courtney Family, and Bob's closest friends. I met Bob online while working together for the Microbe Discovery Project fundraiser. I remember Bob as motivated, devoted, kind, and ready to listen, exchange ideas and offer encouragement. I can only echo the eloquent and thoughtful tributes in this condolence card by all of us who knew him. My impression of Bob through our online conversations was that he was a kind and thoughtful man, with a big heart. I am so deeply saddened by his passing - he touched our lives in such a positive way. And, that is how I will remember Bob: positive, working for good, intelligent, with a giving and generous spirit. Rest in peace, Bob, you will be dearly missed.
To Bob's family - I am so very sorry for your loss. Although I didn't know Bob personally, I was astounded by his commitment and passion for fighting for the rights of ME patients.
So many of us, like Bob, suffer severely with this horrible disease. Many of us are barely able to get to the washroom or feed ourselves yet Bob miraculously drew from his incredible mental and emotional strength to fight from his bed the great injustices that our community faces. He was a true online warrior and a hero to the ME community. A beautiful soul who will be dearly missed by the tens of thousands of people whose lives he touched in his efforts to make this world better for those who suffer so much. Tracy from Oshawa, Ontario, Canada
Bob you touched many lives, many hearts, and will be missed. My condolences to your friends and family.
Bob and I had a few things in common: We were born in the same year, we both had lived for some time in Brighton, although never met. We also both shared the disease M.E and met some years ago on Phoenix Rising forums. Despite his obviously huge intelect, which i found daunting at first, his posts were always full of compassion and kindness and humour. He made everyone feel welcome and important and cared for. This is a true gift that will be terribly missed by us all in our community.
On a personal level Bob was recently very kind to me and we exchanged some messages through the forums. Despite his own suffering he was so mindful of my own, and even refused my help with a project, as he understood all too well the problems i was facing.
I missed his calm, cheerful presence when he was away from the forums for so long, and so happy to see him back. So it was a horrible blow to hear of his death so soon after he had been able to rejoin us.
I am so deeply sorry to his family for their loss xx
I was looking through various photos that Bob had taken, trying to choose something appropriate, then his sister, Vicki, sent me this, and I knew that was the one. It shows the real Bob that I knew, the Bob behind the illness – always full of life, always interested, always ready to enjoy things. He was everything people have said here about him: kind, generous, thoughtful, patient, modest, and even when things were bad, very bad, we managed to find something to laugh about. I miss him so much.
You have now found peace, Bob, and the Bob you were before ME massacred you. Deepest condolences to the family. Living across the Big Pond, never had the opportunity to meet or talk or anything really to Bob, but his work was known and appreciated, he was appreciated.
Josette Lincourt in Montréal, Québec
Peace after so much pain
Bob - Thankyou for being there, for listening and helping, for your humour and wisdom and love. My thoughts are with your family and friends and all I can say is what a loss you are to the world.
We all have images of our selves and loved one of better days, I hope you are comforted by the amazing man Bob was despite the challenges that he faced for much too long. It seems so unfair that Bob's turn downward came as our situation is appearing to improve, but the nights are long and the progress is slow. I hope he now rests without pain and weakness. I hope his spirit contiues to comfort us all as we push forward. I am so sorry for your loss, for our loss. Silver Spring, MD (M.E. diagnosis Hong Kong July 5, 1985).
Thank you for all your hard work on behalf of everyone in the ME community.
I am even more grateful for the kindness and warmth that shone from every post you wrote. They always made the day seem brighter.
I will miss you.
My condolences and sympathy to Bob's family and friends.
I knew Bob through his recent posts and was deeply impressed by his clear thinking, analytic skills, sincerity and drive to make the world safer for people with ME. I would like to have known him better.
I didn't know Bob, apart from reading a few of his forum posts, but we did share mutual friends and it's clear from their reaction to this incredibly sad news that I missed out on knowing an amazing human being. Rest in peace Bob.
I didn’t know Bob but I’m overwhelmed by the strength of feeling about him within the ME community. I’m only now reading about the great contribution he made for all of us. I’m so very sorry he was suffering so much. My thoughts and prayers are with his family and friends.
I did not know Bob personally but I read about him every now and then! He was a fighter. An "activist" for ME! I have been diagnosed with Fibromyalgia in 2009 and that changed my whole life-so I know how this must have changed his and his family's life! Thank you for leading by example! Rest in Peace where there are no pain anymore! And to his family:may God self dry your tears. One of these days you wil be re-united with a healthy Bob! We are praying for you all!
I'm so very sorry Bob has left us. I only knew him from the PR forums, yet his loss has touched me deeply. My sincere condolences to Bob's friends and family. I have shed tears for him too.
And to Bob, a huge thank you. Thank you for being Bob. You are a hero, and you will be greatly missed by people around the globe. Be at peace.
I never met Bob in person. I would dearly love to have done so, but he lived literally a world away, and the limits imposed on both of us by disease made that distance impossible to surmount.
I had not even seen an image of him until after he died. What basic facts of his life that I, and most others, knew amounted to not much more than being male, middle-aged, and English. And, of course, having ME.
In a conventional sense I hardly knew him, yet in another sense I got to know him very well indeed.
We first crossed paths on one of the online patient forums, in mid 2010. It soon became clear that he had a fine mind and a serious purpose, a good grasp of the political and how to work with others, along with a deep moral sense and the courage to quietly but firmly stand against serious injustice.
Not long after, upon the publication of PACE in early 2011, he and I somehow ended up in an informal group of patients and carers working behind the scenes to help analyse and respond to it.
That is when I really got to know Bob that I knew.
There were some personal private conversations between us during that period, which are all fondly remembered by me, including one occasion when he helped pull me out of a particularly nasty funk, and got me laughing again. Thank you for that, Bob.
But mostly the Bob I got to know was through his contributions to the various discussions and projects on the group’s private forum, that ranged far and wide, across often technically complex, frequently politically fraught, and sometimes emotionally painful matters that we all had to confront.
Bob’s input was always among the most informed and insightful, considered and constructive. He always gave credit generously, and took comments and suggestions about his own work easily but seriously. He was directly and substantially involved in many of the best critiques of PACE (and related matters) on both the formal and informal public record, including as the sole or primary author.
But it is important to note that, because this group operated in a broadly collaborative manner, and also that Bob privately worked on parallel or complementary projects with others outside this group, his actual contribution goes well beyond that already noted on the public record.
Bob had a very good appreciation of the overall situation ME patients were in, as well as a vast amount of the detail, and his role over more than a decade in helping quietly guide and enable various aspects of the patient community and cause should also not be underestimated.
But the best part of Bob, and maybe his greatest gift, was that somehow he not only kept delivering in spades but managed to also maintain a healthy sense of humour, humility, and humanity along the way. I cannot recall a single instance when he was overwhelmed by anger or despair, when he allowed it to override his better judgement, when his own suffering and concerns displaced his desire for correcting the greater injustice, when he was unjustifiably harsh in his comments and critiques. He maintained his poise right up to the very end, even when he knew that he probably didn’t have much time left.
Somehow, amazingly, he held it together all the way and rose above the Kafkaesque nightmare that is ME to do as much as anybody in this world has to help end it.
All ME patients deserve to see better times. But it is particularly tragic and disturbing that somebody who worked so hard and effectively to bring that about, and with such unfailing integrity, courage, and grace, did not himself live to see more than a clear sighting of those coming times.
And those times are coming, thanks in no small part to the efforts of Robert ‘Bob’ Courtney.
Thank you for everything you did for us, Bob, and for just being wonderful warm Bob.
You will not be forgotten.
Deepest condolences to Bob’s family and friends, and much thanks to them for the care, support, and love they gave him.
Bob did so much for others. His work on behalf of people with ME is an importnt part of his legacy. We will remember him with love and gratitude.
Fly free sweet boy
Deepest condolences to Bob's family and loved ones
From Galway Ireland
Bob, Brighton beach, 2014
Bob, It was a pleasure to have known you. Although we only met on line I felt I knew you well and you were a lovely person and someone who stood up against injustice. You can be very proud of your part in the various campaigns that you took part in including helping illuminate the misdeads of PACE and raising money for good research. You have made a real difference to the ME community.
You will be sadly missed.
I first got to know Bob online in 2012 and we had worked together on a number of projects. Like many others in the ME community, I hadn't heard from him for some time. Then I heard the devastating news of his recent difficulties and subsequent death.
The loss of a friend and colleague is always deeply upsetting but Bob was a particularly kind, generous and considerate person with a wonderful sense of humour. I will miss him both on a personal level and his enormous contribution to the international ME patient community.
What happened to Bob is utterly shocking. His family have been constantly in my thoughts since I heard the news. I hope that, at some point, they can begin to comprehend the high regard and great affection which I felt for Bob. I would hazard a guess that hundreds, perhaps thousands, of others all over the world may feel something similar.
Bob's life and work were, and are, truly remarkable. I will always remember him.
A terrible loss of a good man who gave much and will be greatly missed. My sympathies to the family. I hope that knowing he was so valued by so many will be some degree of comfort.
I didn't know Bob personally, but wish I had. The work that he has done for the patient community in so many avenues has effected my life for the better. His impact, especially of being one of the key initiators in exposing the PACE trial for the bad science it is, and its claims as gross exaggerations, is pivotal in the history of this disease. I am so sad to have lost him so young.
Bob we never met though we have exchanged posts. Your work here is done, you can now stop.
I didn't know Bob. The way in which ME patients and advocates either collide, or don't, doesn't seem to follow any set rule book, but for some reason our paths didn't cross. However, anyone who was in any part responsible for exposing the fraud that was the PACE Trial is someone to be both admired and thanked in my book. So I wish to posthumously thank Bob now. I'm sure his work will resonate down through the years as being essential to the demise of the BPS model of this hideous disease. Thank you Bob.
Goodbye Bob. I have read your name countless times, in articles about our illness and the fight for truth and justice, never knowing who you were. Thanks for everything you have done for us Bob. An amazing achievement. To me you are a hero. I wish all who have known you a lot of strength in dealing with this loss. We will not give up the fight. Rest in peace brother, if I may be so bold to call you that. I salute your spirit.
Eelco van Tuyll (The Netherlands)
I just wanted to say how sad I was to hear this news. I never met Bob but I heard a lot about him from someone who knew him well. I also have ME and I just wanted to say thank you for everything he has done for all of us with ME. There are days when the illness totally beats me and it’s people like Bob who campaign and try and make things better for all of us that gives me the hope to keep fighting on too. I’d like to send my very best wishes to his family and say that you have an amazing son who you must be very proud of. I’m so, so sorry for your loss. Luke x
thank you so very much for your contribution in fingting the PACE trial. I am so sorry for everything you have been through. No human should ever have to.
Thiugh I have never exchanged personally, you were one of the most respected figures on the patient forums and it just sounds like you could be friends with anyone. You are loved
Sending hugs to you and your family.
I feel so fortunate to have known you. You made some really tedious and unpleasent tasks a lot of fun, and I always looked forward to spending time exchanging ideas with you, and mucking around inbetween. I hope you realised how valued you were, and how missed you are going to be. I can't believe I'm now left with such feelings of affection for a small square image of the waves - it's a very odd thing to grieve over.
I am celebrating your life by thinking of the wonderful memories you leave behind. Your resume is impressive, because it details the care and concern you have for the millions who are too ill to advocate. Our ME community will miss you immensely!
May you find peace and serenity in your new home.
With Much Love
I’m so saddened to hear that we’ve lost you. I can barely see to type because I’m crying so much. RIP
I was feeling really low this morning, feeling sorry for myself having had M.E. for over 20 years. It has affected my whole life, however I am alive, fare a lot better than some and have wonderful support from family and friends.
I wish I had heard about you before you passed away. You are now my inspiration to continue fighting this frustrating condition.
I am now going to have a good cry, have a shower, keep calm and carry on.
Bob we never met but you touched my heart. You gave us a voice and a presence in a world that wants to ignore us. You made the world a better place just by being in it. Rest now your work is done. Jules Weymouth UK
I didnt know you, but I knew of you and its so very clear to see that you meant so much to so many people. I am desperately sad that you have passed on especially as you so wanted to live and had so much more to give. But I understand your decision. I cant help feeling angry though that with the proper support and medical care it could all have been so different. Kindness, respect and appropriate medical care are all too often missing when it comes to M.E. You wont be forgotten. Thank you for all you did while you were here with us.
I am so sorry to hear about Bob's passing. I feel a deep sense of loss losing a fellow ME/CFS sufferer even though I never met him. I'm grateful for his ME/CFS advocacy achievements. RIP
Although Bob and I were both involved in ME/CFS advocacy, sadly our paths never crossed. I have read some of his posts and comments on fora and his kindness, compassion and voice of reason were always evident. He is greatly respected by this international community for his work to remove PACE trial and it's devastating consequences, beliefs and harmful protocols practiced by government's and medical professionals that likely contributed to his own suffering. I and many others are so grateful to him for carrying the burdon of righting these wrongs, and I trust that this community will pick up the ball and finish this fight to finally annihilate PACE and it's harmful practices in Bob's honor. R.I.P.
Dear Bob, You were an amazing soul and the world is a poorer place without you. I enjoyed very much getting to know you, and even though the shared connection was illness, you always had positive support for others and a great sense of humor. You were clearly very loved by your family and friends and I express my deepest condolences to all of them. I hope with time, the pain of your loss will lessen for them and your memory will be a blessing. It is already a blessing now. God bless you, and I am relieved that your suffering is over, but I wish that you were still here!
Much love and respect,
Mahalo for all you did for our ME community. So many will miss you. Aloha & Blessing to your family. And all those in our ME ohana
He brought light to the darkness...
My condolences to Bob's family and friends.
I woke this morning and asked for one reason why I should want to live..... I got no answer..... and then I read of the Departure of Bob. As an ME/CFS for 20 years I have some understanding of why you left, Bob, and I admire, and am in awe of your bravery. So, may you find Peace in the Place which is no longer a Mystery to you......from one redhead to another..... and from Australia...... I send Love which is All there is in the end, to you, Bob, and to your beloved Family and Friends..... may their hearts be comforted..... may they understand. Billie I think you have given me a reason to carry on, I don't know why.
Rest in peace - the ME community is so grateful to you for your caring and work for all patients in this crazy community.
Never knew Bob but I feel a connection just looking at his smiley Face He's WAAAY tooo young to be in heaven Hopefully looking upon the rest of us who are sick with cfs/me and giving us hope & encouragement everyday Hope his family knows how much he is loved & missed by ALL his internet friends Truly a Special guy
Robert, or 'Bob' as he was known on Phoenix Rising and Science for ME, was special - even more than I realised when he was alive.
I had no clue about his behind-the-scenes work - that he was Robert Courtney, author and co-author of so much work on M.E.
It's amazing that so much high-quality work was done by someone who didn't even have a degree or a high-level job, but perhaps it was that damned curse M.E. that put paid to any ambitions for that.
In addition to his academic-style ability, Bob was such a wonderful communicator and helper of others, and with a sense of humour as well!
I really missed him when he 'went missing' from Phoenix Rising, and worried that he might not return, as this accursed illness (which I have too) worsens so many sufferers permanently. I was overjoyed when he reappeared on Science for M.E., then horrified when I read of his experiences.
I worried again when he was absent for a while, concerned that he might have been unjustly incarcerated again. Bob - one of the sanest people I have known - a mental patient?!
But I was horrified again when I learned the truth.
Dear Bob, you were taken from us much too young, much too soon. But you were a friend and a hero to so many fellow-M.E. sufferers.
I truly hope that something positive will come from this.
Bob, you were the creator of that wonderful yahoo group where i got to meet and become friends with some fantastic fellow warriors, and I will always be grateful for that. And the limericks. Rest easy.
Thank you Bob for all that you did. So so sad that you had to suffer so much. Times are changing, we will get there in the end
To a good friend and honorable advocate, Bob,
Your kindness, wisdom, and compassion, and sense for fairness will be remembered.
You will be missed.
Although I only knew Bob as a familiar name, as an ME patient I am hugely grateful for his advocacy. My deepest sympathy.
I will always remember Bob for his good humor and incessant nose for truth.
Bob was a superlative researcher and a wonderful human. He will be sorely missed on both counts by all of those who knew him for his wit, his kindness, and his sharp mind.
Bob was a really great guy, I only knew him over the internet, but you can just tell when someone is special, when they're genuine and rare. I find myself wishing I had met him in person, that I had got to spend proper time with him, especially seeing these photos because he looks so full of life. I wish I had spoken with him once more. Had I done so, I know I would have wished again for one more than that. It's never enough when you lose someone you value so much. Bob is simply irreplaceable. I will miss you Bob.
Bob, you did so much for our international twilit community. Thanks for your help in fighting the juggernaut of PACE and its impish crew. One day soon we will be victorious, and you and we all will be vindicated.
My sincere condolences to all of Bob's family. I did not know Bob very well but I was always impressed with his posts on various forums for ME patients.
He said something important about the widespread mistreatment of ME patients in a post made on February 10, 2018:
"Because people are embarrassed to share their most private and distressing experiences, it means we don't have a full catalogue of the mistreatment that we are subject to."
I will never forget that statement and I will never forget Bob. I will miss his thoughtful input so very much.
I was very sorry to hear of Bob's passing. We followed each other on Twitter, and I read and appreciated his forum posts. His work with the latest paper exposing the flaws of the PACE trial conclusions will I'm sure prove pivotal for the fair treatment of ME patients world over.
Rest in Peace Bob. You made a difference. Thank you. xx
There is some tiny comfort in imagining you basking in the glow of how deeply loved, admired and appreciated you are by so many around the globe. We joined PR around the same time and it was your kindness, wisdom and embassadorial presence that made me stay. Your natural shine spread greatness and it was contagious.
I never met you in person yet the loss of you is devastating. Your power and presence makes the absence of your physical shimmer so heartbreaking; but what remains is indelibly potent, and its bold mark will continue to benefit people forever.
May you rest in the ease and power of your great agency, beloved Bob, with the total gratitude and forever love from all of us whose lives you touched so warmly and delightfully.
WIth deepest condolences to all your family and friends, and to the global heart family you created just by being you.
I hope you know how much you are loved and respected. I hope you know how special you are to so many of us.
So many lives you’ve touched and enriched; leaving behind a Bob sized hole, torn from the fabric of our community that only you can fill.
Thank you for all that you have done for us.
Safe travels. I hope you are finally at peace x
I miss you. I will miss you forever. You won’t be forgotten.
I wish there had been another choice for you to make.
Rest In Peace.
Knowing Bob, though not in person, only from reading his posts on-line has changed me forever and made me a better person. He was such an extraordinary person. His kindness, gentle and calmness, intelligence and humor inspired me. I had to follow him and learn from him.
This is so sad. So sorry Bob. I will always be thankful for you, for having known you and for all your work on our behalf. Thank you! You are loved and will be missed so much. We will never forget you. Jennifer J
Bob was a wonderful person and is a great loss. He is greatly missed by the online ME community. My condolences to all his family and friends.
I am always deeply saddened whenever I hear an ME patient has died. As a fellow sufferer, I never have to ask why. I never had the privilege of getting to know Bob, but what I’ve learned about him in this short time has been nothing short of inspiring.
Until now, I didn’t know it was his work that lead to the investigation and exposure of the failed and harmful PACE trials. For that, and his many other contributions made on behalf of the ME community, I am forever grateful. There’s no telling how many future lives will be saved as a result of his work & publications.
To his friends and loved ones, my thoughts & prayers are with you.
Another great hero has been taken from us and we thank you with all of our collective hearts for all that you did to help and benefit so many. May you rest in peace somehow knowing how much you mean to your family, friends and your community.
Your efforts helped move the needle fast forward and with progress continuing to be made will help save the lives of others. Thank you for giving of yourself to help others.
With heavy hearts, great respect and appreciation,
Linda Tannenbaum and the OMF team.