An incomplete story that urgently needs to be told. We need to get some conversations going.
Did the struggle to get the Cochrane review withdrawn kill Robert Courtney? Or did the denial of his basic human rights by the medical system?
LONDON, Oct 17 (Reuters) – A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce criticism and pressure from activists and patients.
Citizen scientists and patient advocates Tom Kindlon and Robert Courtney played a decisive role in getting the Cochrane review withdrawn.
In the next few days, I will provide the cover letter email sent by Robert Courtney to Senior Cochrane Editor David Tovey that accompanied his last decisive contribution. Robert is now deceased.
I will also provide links to Tom Kindlon’s contributions that are just as important.
Readers will be able to see from what David Tuller calls their cogent, persuasive and unassailable submissions that the designation of these two as citizen scientists is well-deserved.
Since 2015, I have kept in touch with an advisory group of about a dozen patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/cfs). I send emails to myself with this group blind copied. The rationale was that any one of them could respond to me and not have the response revealed to anyone else. A number of patients requested that kind of confidentiality, given the divisions within the patient community.
Robert Courtney was a valued, active member of that group, but then he mysteriously disappeared in January 2017. Patients have their own reasons for entering and withdrawing from social engagement. Sometimes they announce taking leave, sometimes not. I’ve learned to respect absences without challenge, but I sometimes ask around. In the case of Robert, I could learn nothing from the community except he was not well.
Then in February 2018, Robert reemerged with the email message below. I had assumed his recovery would continue and he would participate in telling his story. Obviously there were a lot more details to tell, but he died by suicide a few weeks later.
Long, unbroken periods of being housebound and often bedridden is one of the curses of having severe ME/cfs. Able-bodied persons need to understand the reluctance of patients to invite them into their homes. Even able-bodied persons who believe that they have forged strong bonds with patients on social media.
I nonetheless occasionally make such offers to meet, as I travel through Europe. I’m typically told things like “sorry, I only leave my house for medical appointments and a twice a year holiday with my family.”
We have to learn not to be offended.
Consequently, few people who were touched by Robert Courtney and his efforts have ever met him. Most know little about him beyond his strong presence in social media.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history:
Robert Courtney (d. March 7, 2018) was a patient advocate for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and an outspoken critic of the PACE trial and the biopsychosocial model of chronic fatigue syndrome. He authored numerous published letters in medical journals regarding the PACE trial and, also, filed freedom of information requests in an attempt to get the authors of the PACE trial to release the full trial data to the public for scrutiny.
The day after I received the email below, Robert Courtney sent off to David Tovey of the Senior Editor Cochrane his final comments.
The email describes the horrible conditions of his last year and his mistreatment and the denial of basic human rights by the medical system. I think airing his story as a wake up call can become another of his contributions to the struggle for the dignity and rights of the patient community.
An excerpt from the email, repeated below.
It seems that this type of mistreatment is all too typical for ME patients. Since I’ve been out of hospital, many patients have told me that they have similar nutritional difficulties, and that they are too scared to seek medical assistance, and that quite a lot of them have been threatened with detention or indeed have been detained under the mental health act. It is a much worse situation than I ever realised.-Robert “Bob” Courtney
We can never know whether Bob’ determined effort to get the review withdrawn led to his medical collapse. The speculation is not just a mindless invoking of “stress kills.” One of the cardinal, defining symptoms of myalgic encephalomyelitis is post exertion malaise.
We usually think of the “exertion” as being physical, but patients with severe form of the illness learn to anticipate that sustained emotional arousal can, within 48 hours or so, put them in their beds for weeks. That applies to positive emotion, like a birthday party, and certainly to negative emotion. Aside from the stress, frustration, and uncertainty of trying to get bad science out of the literature, Bob and other members of the patient community had to contend with enormous vilification and gaslighting, which still continues today.
After the anorexia diagnosis, they rediagnosed my ME symptoms as being part of a somatoform disorder, and placed me on an eating disorders unit. .-Robert “Bob” Courtney
On Sat, Feb 17, 2018 at 2:44 PM, Bob <email@example.com> wrote:
I don’t know if you’ll remember me. I am an ME patient who was in regular contact with you in 2016. Unfortunately I had a health crisis in early 2017 and I was hospitalised for most of the year. I had developed severe food intolerances and associated difficulties with eating and nutrition. When I admitted myself to hospital they quickly decided there was nothing medically wrong with me and then diagnosed me with anorexia ( to my shock and bewilderment ), and subsequently detained me under the mental health act. I’m not anorexic. The level of ignorance, mistreatment, neglect, abuse, and miscommunication was staggering. After the anorexia diagnosis, they rediagnosed my ME symptoms as being part of a somatoform disorder, and placed me on an eating disorders unit. Then they force-fed me. It is a very long and troubling story and I’ll spare you the details. I’d quite like a journalist to write up my story but that will have to wait while I address my ongoing health issues.
Unfortunately, it seems that this type of mistreatment is all too typical for ME patients. Since I’ve been out of hospital, many patients have told me that they have similar nutritional difficulties, and that they are too scared to seek medical assistance, and that quite a lot of them have been threatened with detention or indeed have been detained under the mental health act. It is a much worse situation than I ever realised. It is only by sharing my story that people have approached me and been able to tell me what had happened to them. It is such an embarrassing situation both to have eating difficulties and to be detained. The detention is humiliating and the eating difficulties are also excruciatingly embarrassing. Having difficulties with food makes one feel subhuman. So I have discovered that many patients keep their stories to themselves.
You might remember that in 2016 I submitted four lengthy comments to Cochrane with respect to the exercise therapy for chronic fatigue syndrome review. . Before hospital, I had also written an incomplete draft complaint to follow up my submitted comments, but my health crisis interrupted the process and so I haven’t yet sent it .
I am out of hospital now and have finished editing the complaint and I am about to send it. I am going to blind copy you into the complaint so this email is just to let you know to expect it. I’ll probably send it within the next 24 hours. The complaint isn’t as concise or carefully formatted as it could be because I’m still unwell and I have limited capacity.
Anyway this is just to give you some advance notice. I hope this email finds you in good spirits. I haven’t been keeping up to date with the news and activities, while I’ve been away, but I see there’s been a lot of activity. Thanks so much your ongoing efforts.
Bob (Robert Courtney)
James Coyne <firstname.lastname@example.org>
Feb 17, 2018, 2:50 PM
Bob, I remember you well as one of the heroes of the patient movement, and a particularly exemplary hero because you so captured my idea or of the citizen scientist gathering the data and the sense of methodology to understand the illness and battle the PACE people. I’m so excited to see your reemergence. I look forward to what you send.
James Coyne <email@example.com>
Feb 17, 2018, 3:11 PM
Your first goal must be to look after yourself and keep yourself as active and well as possible. You know, the patient conception of pacing. You are an important model and resource for lots of people
But when you are ready, I look forward to your telling your story and how it fits with others.
Warmest of regards