MrMagoo
Senior Member (Voting Rights)
Daily Mail (no paywall)
https://www.dailymail.co.uk/news/ar...-Maeve-Boothby-ONeill-NHS-failed-disease.html
https://www.dailymail.co.uk/news/ar...-Maeve-Boothby-ONeill-NHS-failed-disease.html
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Maeve Boothby O'Neill - articles about her life, death and inquest
- Thread starter dave30th
- Start date
Daily mail article is based on the Good Morning Britain TV interview with Sarah Boothby and Charles Shepherd.
rvallee
Senior Member (Voting Rights)
Well, they used to believe that. They still do, but they used to believe that, too.
Mitch (E)dberg (B)ased (M)edicine (EBM).
Ash
Senior Member (Voting Rights)
On the aside…
If one were to conclude attitudes to non conformity or ruling classes expectations of the residents of this country have become less punishing over the decades or that the medical establishment had realigned its position in support of the people, their patients, one would be wrong.
Attitudes towards germs and germ theory on the other had have undergone a significant transformation. A devolution of sorts.
So I guess medicine has got what it takes to transform after all.
Last edited:
Well that’s a relief no tangents or weird questions from the presenters.
I thought it was pretty good, though I get fed up with presenters who interrupt people in the middle of saying something significant with another question. There were a couple of times when I think that led to good points not being able to be completed.
Ash
Senior Member (Voting Rights)
Yeah I thought that too.
Me too not ideal but better than I was expecting
Ash
Senior Member (Voting Rights)
I would have been too scared to watch it without your review!
A review I took to mean exactly what it said.
Ash
Senior Member (Voting Rights)
Sarah and Charles did really well didn’t they.
Oh I thought he was on a laptop or something.
But either way that an early thing for a person ME to have to be in form for.
Last edited:
MrMagoo
Senior Member (Voting Rights)
I have half a memory about a year ago of a GP, south Asian lady, doing a bit on GMB either Long Covid or ME and I feel like Richard was really interested and was saying she should come back on? So maybe he does have some interest and has done some research.
hibiscuswahine
Senior Member (Voting Rights)
In response to @SNT Gatchaman report that the term "medicalise" and "medicalisation" is only even been used to legitimise biological illness, from his experience and specialty point of view (and other discussion from other doctors).
I think there is a difference in sub-cultures in medicine both between countries and between professional groups within the MDT.
I do not know where the dietician, looking after Maeve, leapt to the conclusion she had a psychological or psychiatric problem and strongly advocated to call Liaison Psychiatry in for an assessement. From what I have read here, Consultation-Liaison Psychiatry was "called in". Unclear if they did an assessment and found no psychological or psychiatric disorder as they have not been called in as witnesses. My understanding is that they were asked to do a capacity to consent to medical care (or in Maeve's case, refuse medical care on one occasion). I don't know what their view was but it is clear to me they thought she had a medical problem otherwise I think they would have become more involved in her case and we would have heard more testimony about this from Maeve's mother.
Everyone in the MDT brings their own personal bias towards a patient, what they may or may not have learnt in their training, their experiences with the illness (or not). Society is rife with BPS. Often people who have illnesses that don't fit peoples view of health and illness - these people quickly become stigmatised. I saw this a lot in psychiatry - from medical teams and many different professional groups. People (all people in society) are judgemental and quickly jump to conclusions when people behave "out of the norm" they quickly conclude people are faking it, wasting their taxpayer's money etc (or are mentally ill and need therapy). They then get angry and then punitive. You would be surprised how draconian people can be! Any unusual behaviour (and yes, some doctors have said to me - you have to take them to the psych ward now!) It beggars belief sometimes but we still have to unpick all these responses and manage the medical team (usually by education and discussion). And by listening to their patient and carers in the first instance and trying to understand what is going on for them, why communication is strained etc.
I wasn't taught ME was psychological at med school (late 80's) though I was taught about the theories of psychosomatic medicine and stress induced illness. If I recall rightly, they used Irritable Bowel Syndrome as an example (I just thought psychiatry was a bit weird and dismissed most of what was said
) and it all seemed irrelevant to me and I can't remember any instances of "faked illnesses" etc in all my medical and surgical rotations both in the UK and NZ. It wasn't until I started to train in psychiatry, in the late 90's, that I learnt more about them and encountered them. I found them to be very uncommon but I have seen a small selection of them (or presented in peer review and grand rounds). They are very complex cases arising mostly from severe sexual abuse. I was also acutely aware of the phenomenon of "contagion" especially with a suicide in a school environment. That is why mental health clinicians, school guidance counsellors and staff work closely together to support all the students/staff following a suicide of a student. I have seen malingering, it is very obvious the person does not have a mental disorder. Sometimes we would err on the side of caution and follow them up and assess them for a longer period eg. get information from multiple informants (family, work etc) but mostly they wanted a bed for the night so they were advised to go to the night shelter.
I find the ever decreasing funding of Health by governments the biggest culprit in this drive to push out complex cases and not provide good explanations and medical (and where appropriate mental health) treatment. It is well known cases are becoming more complex across all areas of medicine. People are unable to afford health care and come to ED with more severe illness. That is the reason for frequent attendance not a mass hysteria event of MUS! Medicine has advanced technologically and with medication that can cure cancer but not the same emphasis has gone on chronic disabling illnesses like our own. @bobbler, the medical profession are forced to economise and restrict investigations and it really is a crisis (well in NZ anyway...). And it does suggest that later generations of doctor's may be being trained with more emphasis that MUS is psychological and we don't want to medicalise them i.e. reinforce their behaviour. I do wonder if this is from economic pressure from all the cutting of health budgets.
This term "medicalise" can mean two things, 1) don't do invasive procedures until you have tried all the non-invasive ones, that is a safety measure as the more invasive, the more risky. And Maeve had the usual first stage of treatment with only 10% of her BMI reduced i.e. do investigations, (I don't know what they did or if she had any but she was diagnosed with GERD (Gastro-Esophageal Reflux Disease), so presumably she may have had a gastroscopy. Perhaps given meds for this and to try certain nutrient drinks tailored to her intolerances etc, they were late coming initially but then things deteriorated over some months and there was no medical HCP overseeing this or a comprehensive plan of treatment. Or they really didn't understand PEM and how fatiguing their policies and interventions can be. I believe a considered, slow and careful plan to investigate should mitigate that. People have to have the investigations so the physician can confidently say it is the best course of treatment.
But in psychiatry "medicalise" is to do unnecessary medical tests and invasive interventions because the person has an indisputable mental disorder. Or they have both, a medical problem and a psychological/psychiatric one. I have seen this as a community psychiatrist. The practise of medicine is to relieve suffering and many doctors try very hard to get thorough investigations to rule out serious pathology. They are referred to see a specialist, they, too, want to be thorough - suddenly some very mild derangement in liver function and an ultrasound of a fatty liver, becomes - they may have cancer and suddenly they are having a liver biopsy. In the meantime, the GP is astounded that their patient is having invasive procedures and referred them to community mental health and it is obvious to us that the person has a severe anxiety disorder. Treat the anxiety disorder and they return to normal functioning. Anxiety is a very difficult area in medicine. A very concerned, anxious person does make clinicians anxious that they are doing everything they can.
This is where Iatrogenic (Doctor Induced) Illness and Jonathon's discussion about hEDS is very important. And the influence of social media and publicity by patients that pressure the medical system to behave in a certain way. It can turn into a massive quagmire.
I don't know enough about EDS to have an informed opinion on it but I am seeing increased reporting of it here and the lack of specialist care, much like ME. Actually there are several pwEDS in ME/CFS support groups in NZ. But I think the hypermobility aspect may have taken on a life of its own, just like Tic Disorders - Not Otherwise Specified.
It does appear that more research into Autonomic problems needs to occur and become more legitimised throughout all areas of the medical profession eg. Heart, GI tract etc. Rather than be put down to "anxiety" or "functional" illness
I was very impressed by the Good Morning Interview, thanks for putting it on YouTube @Adam pwme
So it seems now the RDUH is now the place to call for help with very severe ME in the UK?
Edit: I inserted a statement about government's funding of health.
I think there is a difference in sub-cultures in medicine both between countries and between professional groups within the MDT.
I do not know where the dietician, looking after Maeve, leapt to the conclusion she had a psychological or psychiatric problem and strongly advocated to call Liaison Psychiatry in for an assessement. From what I have read here, Consultation-Liaison Psychiatry was "called in". Unclear if they did an assessment and found no psychological or psychiatric disorder as they have not been called in as witnesses. My understanding is that they were asked to do a capacity to consent to medical care (or in Maeve's case, refuse medical care on one occasion). I don't know what their view was but it is clear to me they thought she had a medical problem otherwise I think they would have become more involved in her case and we would have heard more testimony about this from Maeve's mother.
Everyone in the MDT brings their own personal bias towards a patient, what they may or may not have learnt in their training, their experiences with the illness (or not). Society is rife with BPS. Often people who have illnesses that don't fit peoples view of health and illness - these people quickly become stigmatised. I saw this a lot in psychiatry - from medical teams and many different professional groups. People (all people in society) are judgemental and quickly jump to conclusions when people behave "out of the norm" they quickly conclude people are faking it, wasting their taxpayer's money etc (or are mentally ill and need therapy). They then get angry and then punitive. You would be surprised how draconian people can be! Any unusual behaviour (and yes, some doctors have said to me - you have to take them to the psych ward now!) It beggars belief sometimes but we still have to unpick all these responses and manage the medical team (usually by education and discussion). And by listening to their patient and carers in the first instance and trying to understand what is going on for them, why communication is strained etc.
I wasn't taught ME was psychological at med school (late 80's) though I was taught about the theories of psychosomatic medicine and stress induced illness. If I recall rightly, they used Irritable Bowel Syndrome as an example (I just thought psychiatry was a bit weird and dismissed most of what was said
) and it all seemed irrelevant to me and I can't remember any instances of "faked illnesses" etc in all my medical and surgical rotations both in the UK and NZ. It wasn't until I started to train in psychiatry, in the late 90's, that I learnt more about them and encountered them. I found them to be very uncommon but I have seen a small selection of them (or presented in peer review and grand rounds). They are very complex cases arising mostly from severe sexual abuse. I was also acutely aware of the phenomenon of "contagion" especially with a suicide in a school environment. That is why mental health clinicians, school guidance counsellors and staff work closely together to support all the students/staff following a suicide of a student. I have seen malingering, it is very obvious the person does not have a mental disorder. Sometimes we would err on the side of caution and follow them up and assess them for a longer period eg. get information from multiple informants (family, work etc) but mostly they wanted a bed for the night so they were advised to go to the night shelter.I find the ever decreasing funding of Health by governments the biggest culprit in this drive to push out complex cases and not provide good explanations and medical (and where appropriate mental health) treatment. It is well known cases are becoming more complex across all areas of medicine. People are unable to afford health care and come to ED with more severe illness. That is the reason for frequent attendance not a mass hysteria event of MUS! Medicine has advanced technologically and with medication that can cure cancer but not the same emphasis has gone on chronic disabling illnesses like our own. @bobbler, the medical profession are forced to economise and restrict investigations and it really is a crisis (well in NZ anyway...). And it does suggest that later generations of doctor's may be being trained with more emphasis that MUS is psychological and we don't want to medicalise them i.e. reinforce their behaviour. I do wonder if this is from economic pressure from all the cutting of health budgets.
This term "medicalise" can mean two things, 1) don't do invasive procedures until you have tried all the non-invasive ones, that is a safety measure as the more invasive, the more risky. And Maeve had the usual first stage of treatment with only 10% of her BMI reduced i.e. do investigations, (I don't know what they did or if she had any but she was diagnosed with GERD (Gastro-Esophageal Reflux Disease), so presumably she may have had a gastroscopy. Perhaps given meds for this and to try certain nutrient drinks tailored to her intolerances etc, they were late coming initially but then things deteriorated over some months and there was no medical HCP overseeing this or a comprehensive plan of treatment. Or they really didn't understand PEM and how fatiguing their policies and interventions can be. I believe a considered, slow and careful plan to investigate should mitigate that. People have to have the investigations so the physician can confidently say it is the best course of treatment.
But in psychiatry "medicalise" is to do unnecessary medical tests and invasive interventions because the person has an indisputable mental disorder. Or they have both, a medical problem and a psychological/psychiatric one. I have seen this as a community psychiatrist. The practise of medicine is to relieve suffering and many doctors try very hard to get thorough investigations to rule out serious pathology. They are referred to see a specialist, they, too, want to be thorough - suddenly some very mild derangement in liver function and an ultrasound of a fatty liver, becomes - they may have cancer and suddenly they are having a liver biopsy. In the meantime, the GP is astounded that their patient is having invasive procedures and referred them to community mental health and it is obvious to us that the person has a severe anxiety disorder. Treat the anxiety disorder and they return to normal functioning. Anxiety is a very difficult area in medicine. A very concerned, anxious person does make clinicians anxious that they are doing everything they can.
This is where Iatrogenic (Doctor Induced) Illness and Jonathon's discussion about hEDS is very important. And the influence of social media and publicity by patients that pressure the medical system to behave in a certain way. It can turn into a massive quagmire.
I don't know enough about EDS to have an informed opinion on it but I am seeing increased reporting of it here and the lack of specialist care, much like ME. Actually there are several pwEDS in ME/CFS support groups in NZ. But I think the hypermobility aspect may have taken on a life of its own, just like Tic Disorders - Not Otherwise Specified.
It does appear that more research into Autonomic problems needs to occur and become more legitimised throughout all areas of the medical profession eg. Heart, GI tract etc. Rather than be put down to "anxiety" or "functional" illness
I was very impressed by the Good Morning Interview, thanks for putting it on YouTube @Adam pwme
So it seems now the RDUH is now the place to call for help with very severe ME in the UK?
Edit: I inserted a statement about government's funding of health.
Last edited:
DigitalDrifter
Senior Member (Voting Rights)
Theres a thread here dedicated that sort of thing. Just search Google for: S4ME "Bad ME"
We've split off the discussion about abdominal vascular compression syndrome and related matters to a new thread:
Gut compression syndromes; Nutcracker syndrome; Abdominal Vascular Compression Syndrome
Gut compression syndromes; Nutcracker syndrome; Abdominal Vascular Compression Syndrome
Not any more. They clearly hate and fear us, and are prepared to get us out of their clinics as fast as they can.
This is exactly what is happening, and is why I often say that the BPS club could not have got away with what they have (and continue to do so) without sustained high level support from the broader establishment (political, financial, media, administrative, etc).
It is a very disturbing and dangerous confluence of certain illegitimate self-interests, and is destroying health systems and human lives the world over.
It is why so many BPS papers have the alleged high cost of 'functional' disorders in the first sentence of the abstract. They know what they are doing, and who they have to appeal to in order to keep the grift up. There is never a lack of those willing to prostitute their skills and professional status, and crush the lives of others, to gain power, glory, and income.
It is also why reform of this problem is taking so long and there is so much ruthless resistance to it. Nobody in power comes out of this looking good.
Last edited:
Sarah seemed very strategic in the interview - I thought it was impressive. She came across as anything but "some type of mad mother", looking for a better future for us all, even while knowing that was deliberately denied to her precious daughter.
And engaging RD&E / RDUH who screwed this up so badly, and essentially forcing them into a corner to adopt the role of Centre of Excellence and reference site for the whole NHS is pretty smart.
It's a bit like the famous story of Tom Watson at IBM —
“Recently, I was asked if I was going to fire an employee who made a mistake that cost the company $600,000. No, I replied, I just spent $600,000 training him.”