Countrygirl
Senior Member
- Messages
- 5,342
- Location
- UK
Please Provide Your Evidence if You Have Been Harmed By GET.
Dear All,
Yesterday, after NICE announced the present debacle, I was phoned by a doctor who needs case histories to prove that GET harms patients. The best evidence is that the patient was mild/moderate and, as a result of GET, became severe and required a feeding tube. We do know some paediatric cases with this particular history, but we need many more, both adults and children. Also, we need any who can provide witnesses to their deterioration as a result of GET. For example, you were no longer able to be employed following a course of GET whereas you could cope with at least a part-time job before.
The case histories can be from any country.
It is important that someone witnesses your deterioration and so please be aware that this must be able to withstand legal scrutiny.
PM me, please, with your history and then I will give you my email as the doctor will need your contact details. Please disseminate the request to anyone who could provide us with a case history.
I will then produce a file of histories and forward them.
Here is one I received this morning which I share with permission.
She was one of Prof Sharpe's patients and it makes for interesting reading.
In summer 1990 I had been ill for nearly 6 years, slowly deteriorating following an initial virus, finally diagnosed with ME Easter 1989. From September 1990 to June/July 1991 I had CBT/GET with Michael Sharpe as an outpatient at The Warneford hospital in Oxford, under the umbrella of Tim Peto (infectious diseases) at the John Radcliffe hospital who was at my initial appointment (insinuating maybe my parents were helping perpetuate my illness at that point), and involved in my hospital admission when I got so ill at the end. I wasn’t in one of his trials, I just missed the timing.
I was moderate/severe when I started, stabilised a bit on CBT/GET initially (because they made me reduce activity right down to what I could do on my worst days to find a sustainable baseline which I was able to maintain, before starting to increase) but as I was pushed to increase activity I started to relapse regularly until eventually, 9 months later, I was so ill my GP demanded that they (Tim Peto, infectious diseases, Michael Sharpe, psychiatry) admitted me to hospital. I was an in patient on the infectious diseases ward in The Churchill hospital Oxford for about a week in June or July 1991, during which time they basically ignored me except for a few occasions when they came into my room to tell me off, blame me, and accuse me of not wanting to get better.
Started CBT and GET with Sharpe Sept 1990. Under him until the following June/July when I ended up being admitted to hospital but at that point hadn’t seen him in person for a few months as I’d got too ill to attend appointments. We’d had phone calls ongoing though to continue the treatment. Except that I was too ill to do it by then.
I was called a ‘perfect patient’ by Sharpe near the start as I engaged so well, and appeared to make some progress. I’d been an Oxford student and loved my course and was desperate to get well enough to go back and complete my degree, abandoned because of increasingly severe ME after my 3rd year of 4. At first Sharpe seemed to respect me, even discussed his theories with me, and asked me to read stuff for him. But I soon hit a wall physically and his attitude changed dramatically when I kept relapsing instead of improving.
Their treatment of me when I got severely ill and ended up as an inpatient in June or July 1991 (on Peto’s infectious diseases ward at The Churchill hospital, Oxford, on the demand of my GP, horrified at how ill I had become) was unbelievable. Abuse certainly. Some things they said to me:
‘You are messing up our statistics’ (both of them)
‘We’ve invested a lot of time in you, you owe it to us to get better.’ (Peto)
‘You need to try harder.’ (Peto)
‘There’s nothing physically wrong with you.’ (Both of them)
Sharpe sat down by my hospital bed and told me that even though I thought I wanted to go back and finish my degree, the reason I’d got worse not better was because I was subconsciously afraid of getting better, because if I did recover I’d then have to go back to Oxford to complete my degree and would then have to face my (invented by him) fear of not getting a First. Being ill, according to him, gave me a good excuse not to face my supposed fear of failure. Nothing I could say would ever convince him I’d never had any ambition to get a First, and I’d always been quite happy with the 2:1 grades I’d been getting.
At one point earlier on had Sharpe made me do a perfectionism test. I knew he was trying to prove I was ill because I was pathologically perfectionistic (I wasn’t. I was a high achiever and liked to do my best, but good enough was always good enough, and I had no fear of failure, my identity and value didn’t depend on academic success, and I had no feelings of pressure from anyone to get a First or any hope/dream/expectation of doing so.) I deliberately subverted the questionnaire to score really, really low on perfectionism to see what he would say. He first misinterpreted the scores and declared it was proof I had a major problem with perfectionism. When I pointed out it actually suggested the opposite he chucked it aside and said we shouldn’t pay too much attention to such questionnaires they weren’t very good indicators. Disregarding evidence that didn’t fit his theories from an early stage in his career.
The last thing Michale Sharpe said to me, as he was walking out of my hospital room for the final time in 1991 was: “We will be proved right; our careers depend on it.’ It is engraved on my memory. It was devastating - that their theories, careers and professional reputations, were more important than having any interest in what was really wrong with their patients. Of course subsequent events have proved this to be true.
In 1990 I was moderate/severe physically and had never had any mental health issues. When they had finished with me I was physically iller than I had ever been before, and mentally and emotionally broken. Suicidal for the first time in my life. I put my all into doing everything they said and trying to get well and when it failed they abused, accused, and blamed me. I was 24. It took a lot of therapy to undo the harm they had done mentally. Physically there was no coming back.
Now 54 and still severely ill with ME though I’ve had a few moderate patches and did eventually finish my degree from my bed, very slowly.
I heard Sharpe’s voice on BBC radio 4 the other year, when he was supposedly retiring from the ME field, for the first time since my hospital stay in 1991, and just hearing him left me shaking and crying, as the trauma resurfaced. I couldn’t believe I could be so badly affected by him nearly 30 years later.
Of course I can’t prove any of the above though there must be medical records of my hospital admission and my current GP is supportive and might be able to locate them. It’s just my word on what happened so I’m not sure it is enough to stand up in court. But if it is ever useful to anyone fighting them I’m happy to be a part of it. Despite everything I’m a pretty well-balanced, intelligent, educated, and well-grounded person who would make a credible witness.
=AZUOlsFUqd3Yv8Kv7HMWcT_WUedX9vqoy9dBclBZct6oA5whmGCMaWFeqMKJnXCSQ5KB2RBU5_glkLs8eYCw-2o__kaDj8AgBlg1yXI7VZ0_twvTrnyQFapaThe2IaxClAs&__tn__=R]-R']
Dear All,
Yesterday, after NICE announced the present debacle, I was phoned by a doctor who needs case histories to prove that GET harms patients. The best evidence is that the patient was mild/moderate and, as a result of GET, became severe and required a feeding tube. We do know some paediatric cases with this particular history, but we need many more, both adults and children. Also, we need any who can provide witnesses to their deterioration as a result of GET. For example, you were no longer able to be employed following a course of GET whereas you could cope with at least a part-time job before.
The case histories can be from any country.
It is important that someone witnesses your deterioration and so please be aware that this must be able to withstand legal scrutiny.
PM me, please, with your history and then I will give you my email as the doctor will need your contact details. Please disseminate the request to anyone who could provide us with a case history.
I will then produce a file of histories and forward them.
Here is one I received this morning which I share with permission.
She was one of Prof Sharpe's patients and it makes for interesting reading.
In summer 1990 I had been ill for nearly 6 years, slowly deteriorating following an initial virus, finally diagnosed with ME Easter 1989. From September 1990 to June/July 1991 I had CBT/GET with Michael Sharpe as an outpatient at The Warneford hospital in Oxford, under the umbrella of Tim Peto (infectious diseases) at the John Radcliffe hospital who was at my initial appointment (insinuating maybe my parents were helping perpetuate my illness at that point), and involved in my hospital admission when I got so ill at the end. I wasn’t in one of his trials, I just missed the timing.
I was moderate/severe when I started, stabilised a bit on CBT/GET initially (because they made me reduce activity right down to what I could do on my worst days to find a sustainable baseline which I was able to maintain, before starting to increase) but as I was pushed to increase activity I started to relapse regularly until eventually, 9 months later, I was so ill my GP demanded that they (Tim Peto, infectious diseases, Michael Sharpe, psychiatry) admitted me to hospital. I was an in patient on the infectious diseases ward in The Churchill hospital Oxford for about a week in June or July 1991, during which time they basically ignored me except for a few occasions when they came into my room to tell me off, blame me, and accuse me of not wanting to get better.
Started CBT and GET with Sharpe Sept 1990. Under him until the following June/July when I ended up being admitted to hospital but at that point hadn’t seen him in person for a few months as I’d got too ill to attend appointments. We’d had phone calls ongoing though to continue the treatment. Except that I was too ill to do it by then.
I was called a ‘perfect patient’ by Sharpe near the start as I engaged so well, and appeared to make some progress. I’d been an Oxford student and loved my course and was desperate to get well enough to go back and complete my degree, abandoned because of increasingly severe ME after my 3rd year of 4. At first Sharpe seemed to respect me, even discussed his theories with me, and asked me to read stuff for him. But I soon hit a wall physically and his attitude changed dramatically when I kept relapsing instead of improving.
Their treatment of me when I got severely ill and ended up as an inpatient in June or July 1991 (on Peto’s infectious diseases ward at The Churchill hospital, Oxford, on the demand of my GP, horrified at how ill I had become) was unbelievable. Abuse certainly. Some things they said to me:
‘You are messing up our statistics’ (both of them)
‘We’ve invested a lot of time in you, you owe it to us to get better.’ (Peto)
‘You need to try harder.’ (Peto)
‘There’s nothing physically wrong with you.’ (Both of them)
Sharpe sat down by my hospital bed and told me that even though I thought I wanted to go back and finish my degree, the reason I’d got worse not better was because I was subconsciously afraid of getting better, because if I did recover I’d then have to go back to Oxford to complete my degree and would then have to face my (invented by him) fear of not getting a First. Being ill, according to him, gave me a good excuse not to face my supposed fear of failure. Nothing I could say would ever convince him I’d never had any ambition to get a First, and I’d always been quite happy with the 2:1 grades I’d been getting.
At one point earlier on had Sharpe made me do a perfectionism test. I knew he was trying to prove I was ill because I was pathologically perfectionistic (I wasn’t. I was a high achiever and liked to do my best, but good enough was always good enough, and I had no fear of failure, my identity and value didn’t depend on academic success, and I had no feelings of pressure from anyone to get a First or any hope/dream/expectation of doing so.) I deliberately subverted the questionnaire to score really, really low on perfectionism to see what he would say. He first misinterpreted the scores and declared it was proof I had a major problem with perfectionism. When I pointed out it actually suggested the opposite he chucked it aside and said we shouldn’t pay too much attention to such questionnaires they weren’t very good indicators. Disregarding evidence that didn’t fit his theories from an early stage in his career.
The last thing Michale Sharpe said to me, as he was walking out of my hospital room for the final time in 1991 was: “We will be proved right; our careers depend on it.’ It is engraved on my memory. It was devastating - that their theories, careers and professional reputations, were more important than having any interest in what was really wrong with their patients. Of course subsequent events have proved this to be true.
In 1990 I was moderate/severe physically and had never had any mental health issues. When they had finished with me I was physically iller than I had ever been before, and mentally and emotionally broken. Suicidal for the first time in my life. I put my all into doing everything they said and trying to get well and when it failed they abused, accused, and blamed me. I was 24. It took a lot of therapy to undo the harm they had done mentally. Physically there was no coming back.
Now 54 and still severely ill with ME though I’ve had a few moderate patches and did eventually finish my degree from my bed, very slowly.
I heard Sharpe’s voice on BBC radio 4 the other year, when he was supposedly retiring from the ME field, for the first time since my hospital stay in 1991, and just hearing him left me shaking and crying, as the trauma resurfaced. I couldn’t believe I could be so badly affected by him nearly 30 years later.
Of course I can’t prove any of the above though there must be medical records of my hospital admission and my current GP is supportive and might be able to locate them. It’s just my word on what happened so I’m not sure it is enough to stand up in court. But if it is ever useful to anyone fighting them I’m happy to be a part of it. Despite everything I’m a pretty well-balanced, intelligent, educated, and well-grounded person who would make a credible witness.
=AZUOlsFUqd3Yv8Kv7HMWcT_WUedX9vqoy9dBclBZct6oA5whmGCMaWFeqMKJnXCSQ5KB2RBU5_glkLs8eYCw-2o__kaDj8AgBlg1yXI7VZ0_twvTrnyQFapaThe2IaxClAs&__tn__=R]-R']
