Coyne: Was our Bob Courtney killed by medical abuse or his battle with Cochrane?

[Countrygirl]

https://www.coyneoftherealm.com/blo...kEJlNxUV9sZXsu3qMnRIPUabCqFvNfTMqYFfsMjrwPwy0

This following blog post really touches a nerve for me. I last spoke to Bob a few days before his death. My wonderful London-based ME doctor had kindly responded to a call from me to visit Bob to see if he could help him with his eating problem which was severe. It is one which many of us have experienced during our illness and Bob's was now life-threatening. He urgently required a feeding tube, but his doctors, who didn't understand or believe in ME, removed his ME diagnosis and replaced it with anorexia (which he didn't have) and a somatoform disorder and humiliated him by locking him up for the best part of the year, isolating him from his friends. So when he went missing from here, it was because he was locked away under section for having ME where, he told me, he found it traumatic to be ridiculed and bullied by the staff, medically abused and forced fed.

He was released around Christmas time, but his feeding issues became very severe again. He was warned by his doctor that if he asked for medical assistance to obtain a feeding tube which would have saved his life, he would be refused it, sectioned once more, lose his freedom as a bedbound patient and be detained in the place where he had been psychologically and medically abused.

On the Sunday my doctor traveled to see him , picking up a well-known professor en route to Bob's. The situation was hopeless. To get the feeding tube he would have to contact the GP..........who would arrange to have him sectioned. Three days later, Bob was dead.

To any sane and reasonable person, the people responsible for the tragic loss of our much -respected friend and much-loved member of our PR community was killed by medical abuse and wilful medical ignorance.

Here is Dr Coyne' blog on Bob's death.

It should be tweeted to those on line who are crying shame on Cochrane as Bob was one of the main people who was responsible for their change of mind. This story needs to placed in the public domain.

Hi James,

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 .

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

This story needs to travel far and wide.............especially to the authors of the paper and Mrs Wessely aka Clare Gerada who is sputing nonsense against patients on twitter

 

[Seven7]

We need all patients that have had this expiriences come forward on tweeter and push the momentum.sorry about Bob I did not know this details. I am mad as hell on yours all behalf.

 

[HowToEscape?]

It seems like their goal was to silence him, and they succeeded.

 

[boolybooly]

I am sorry to read this. It is very sad and slightly terrifying. It reminds me of another PWME who died primarily because she could not eat, Annabel Senior. I hope that we can find ways to make medics aware of the problems PWME can face and the real physiological basis of them.

FWIW I have tried to blog my own difficulties with food intolerances and insights and progress I have managed to glean. I have no idea if this bears comparison with other people's difficulties because I have not read any accounts of other peoples difficulties, which is one reason I feel its important to create a record of mine, so its out there if anyone wants to read it.

https://boolyblog.blogspot.com/

Caffeine, nightshades like potato, tomato, sweet and chilli peppers, aubergines etc, high amine foods and MonoAmine Oxidase blocking foods, dairy and most recently coconut oil all present problems for me in addition to the stringent precautions I have to take with food hygiene (washing all fresh veg with detergent).

I would imagine that for anyone who was not alerted to the nature of some foods or methods for detecting food intolerance like the elimination diet, a healthy diet could be very difficult to maintain and could cause a lot of adverse affects, which is a matter for deep concern

 

[SilverbladeTE]

earlier in year found that I couldn't tolerate Dr Pepper any more
hadn't' had a caffeinated drink in ages, as I drink dilute fruit juice, or a cup of tea with saccharine for sweetener once or twice a day (and lot of days I don't drink tea at all)
so got Dr Pepper....and WHAM!
omg the effect was brutal

been getting slowly worse reactive hypoglcyemia over years so am used to that, but caffeinated drinks now...jebuz!
tried with Coke and oddly found it not as bad as Dr Peppers but still severe (would have excepted worse, I'd have thought there'd be more caffeine in Coca-Cola than Dr peppers...maybe also some other ingredient at work?)

and year or so? ago found cider shandy (British cider which is NOT the non-alcoholic stuff found in parts of America, and shandy is lager, beer or cider mixed with British sweet lemonade) also now knocked hell out of me (M.E. reactions not drunkness I only drink a glass, or as used to be long ago, a pint or two)
I am not a drinker, when anniversary fo my Mum's death comes I used to like drinking a bottle of sauterne wine over a few days, it was her fave, that's about it, I like Glayva, Drambuie or MacCallan's sure a shell cannot afford 'em especially not the MacCallans!!!


my point being the very odd but severe reactions this damn illness has for me has increased at increasing severity in recent years. so I am not surprised it has severe issues for others, too.
oddly enough I'm also always damn hungry, largely if I don't my stomach aches like hell, not an ulcer something else and medication I found helped to an extent made the M.E. worse so can't use it.
damn illness has largely got some very severe and nasty "feed back loops" for the immune system, so intolerance for foods, drugs etc should be considered a typical and GENUINE issue for us, and also, potentially a severe or even lethal one.

 

[Learner1]

Are mast cell activation disorders or histamine intolerance understoof in the UK? Are there any specialists who might recognize these? My ME/CFS specialist says almost half of gis patients have mast cell disorders and most have SIBO. Drugs exist to treat these conditions snd supplements like vitamin C, B5, DAO, quercetin and curcumin can help, too.

And as for the politics, is there any way of habing Bob's story shared in an aeticle about why the NICE committee needs some medically oriented representation and not a bunch of people who think CBT/GET snd locking people up and force feeding patients is the answer?

 

[Countrygirl]

Are mast cell activation disorders or histamine intolerance understoof in the UK? Are there any specialists who might recognize these? My ME/CFS specialist says almost half of gis patients have mast cell disorders and most have SIBO. Drugs exist to treat these conditions snd supplements like vitamin C, B5, DAO, quercetin and curcumin can help, too.

My consultant told me recently that he believes that our severe 'food intolerances' are due to MCAS. I read.............somewhere....................that this particular form was only discovered in 2007, so given that it takes the medical profession nearly half a century to grasp a new concept, we will never live to see it recognised in the UK. Unfortunately, my GP refuses to take any notice of my consultant's letters as he contradicts her beliefs about ME. She does have the right to do this, I understand.

And as for the politics, is there any way of habing Bob's story shared in an aeticle about why the NICE committee needs some medically oriented representation and not a bunch of people who think CBT/GET snd locking people up and force feeding patients is the answer?

It sounds a good idea, but his GP and the psychiatrist to whom he was referred diagnosed not ME but a psychiatric problem and I assume anorexia. He was told that if he asked for medical help for his inability to tolerate food he would be re-sectioned again, which was unthinkable. NICE will only take notice of what they have diagnosed and not his ME diagnosis. They would just use his story to bolster their own biases, sadly.

I phoned my consultant to ask if he could help Bob and he was marvellous and travelled to see him on Sunday, but Bob died three days later. It was too late, and his GP wouldn't take any notice of the consultant's recommendations anyway.

 

[SilverbladeTE]

it's medical, legalized murder