Kati
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What does smh mean?
Crawley: How to deal with anti-science BRS2017
- Thread starter Cheshire
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NelliePledge
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what can happen when Drs mistreat patients
http://www.bbc.co.uk/news/uk-england-39748246
http://www.bbc.co.uk/news/uk-england-39748246
JaimeS
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"Shaking my head".
One of the advantages of being behind on my PR reading is that by the time I get to a thread like this it’s nearly all been said, saving me the hours I would have spent hammering angrily away at my keyboard, and the further hours I would have needed to remove all the swearwords before posting.
Looks to me like she’s trying to emulate Wessely and be the next recipient of the John Maddox prize for bravery, without realising how the climate has changed, how many more people are watching, or how ridiculous she looks. He made it look so easy didn't he? Oh well, maybe she should have done more research.
Why at a the British Renal Society? It was probably the next easy gig / opportunity for self-aggrandizement. One thing's for sure - it’s not because she gives a toss about helping renal specialists or, heaven forfend, their patients. It was just an easy, convenient platform for whatever reason, and all about her. Like she cares who else's reputation she drags into the gutter with her.
The reason EC is so into the Lightning Process is because it has always worked so well for her and her colleagues. I can imagine her standing in a circle in front of her bathroom mirror every evening repeating “I am an expert scientific researcher” over and over again, and lo and behold, when she leaves the house the next morning, the world behaves as if it is true. And if the world looks like it’s starting to doubt, then it’s time to get back in the circle and up the chanting, this time at the British Renal Society. It’s always worked before, right?
Shame her talk is being described as motivational and inspirational by whatever-his-name-is. Rather sad that so many doctors can’t be bothered to think. I get the feeling that EC, SW and henchpersons know this and know how to manipulate it to their full advantage. I take comfort from the fact that they are now being watched by more and more people who do know how to think.
The more that EC & Co publicly demonstrate how barking mad they are in front of an ever-widening audience of real scientists the better I say. It will only hasten the arrival of that happy day when her "expertise" is seen for what it is - a one-woman ego trip which has had a devastating effect on many sufferers and their families.
Looks to me like she’s trying to emulate Wessely and be the next recipient of the John Maddox prize for bravery, without realising how the climate has changed, how many more people are watching, or how ridiculous she looks. He made it look so easy didn't he? Oh well, maybe she should have done more research.
Why at a the British Renal Society? It was probably the next easy gig / opportunity for self-aggrandizement. One thing's for sure - it’s not because she gives a toss about helping renal specialists or, heaven forfend, their patients. It was just an easy, convenient platform for whatever reason, and all about her. Like she cares who else's reputation she drags into the gutter with her.
The reason EC is so into the Lightning Process is because it has always worked so well for her and her colleagues. I can imagine her standing in a circle in front of her bathroom mirror every evening repeating “I am an expert scientific researcher” over and over again, and lo and behold, when she leaves the house the next morning, the world behaves as if it is true. And if the world looks like it’s starting to doubt, then it’s time to get back in the circle and up the chanting, this time at the British Renal Society. It’s always worked before, right?
Shame her talk is being described as motivational and inspirational by whatever-his-name-is. Rather sad that so many doctors can’t be bothered to think. I get the feeling that EC, SW and henchpersons know this and know how to manipulate it to their full advantage. I take comfort from the fact that they are now being watched by more and more people who do know how to think.
The more that EC & Co publicly demonstrate how barking mad they are in front of an ever-widening audience of real scientists the better I say. It will only hasten the arrival of that happy day when her "expertise" is seen for what it is - a one-woman ego trip which has had a devastating effect on many sufferers and their families.
Large Donner
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Its so telling that Crawley is using the "anti science" meme. That's because it is impossible for her to criticize us for not following the scientific method or understanding it. That's because she knows full well that the BPS model doesn't follow the scientific method and that if she alerted people to the PACE study to examine it for the scientific method she would be firing a gun at her own foot.
Secondly she is also using the current meme sound bite of "Fake News" which is also a distraction from the notions of how journalism should check its sources and provide evidence for its claims. This is like Fox accusing other channels and media outlets of FAKE news whilst slyly slipping it into the consciousness of the viewer that their own news is beyond demands for evidence and the basic principles of providing journalistic impartiality.
This stance is about declaring yourself the authority, the priest class, the crowned leader. This is nothing to do with science its pure scientism. Her flock are the uncritical, the unquestioning, and the uninformed.
I am just waiting for her to declare us all conspiracy theorists that's right out of the "how to be a propagandist whilst accusing your questioners of being the propagandist" manual. You simply take a term that previously had the purpose of fulfilling the testements of democratic interactions to arrive at a content based conclusion and you demonize it and its very process. You then use the term to denigrate your opponents and turn the debate into an emotional based argument using things like ad hominem, straw men.
Hence "anti science". Hence "fake news".
Its just so pathetic that she is using the memes of "fake news" and "anti science" against us when it is her and her highly connected State funded, Insurance Industry connected, Media connected BPS school use the Science Media Centre to get all over the radio, the BBC and the UK national press to push out their provably flawed studies, whilst hiding the fact that they can declare people ill enough to enter a trial yet recovered at the same time, and then go unchallenged when they present to an ill informed audience of this obvious example of fake news.
When it becomes dangerous is when you have position, power and highly connected, like minded friends and she has all of those.
The KGB would be proud.
Secondly she is also using the current meme sound bite of "Fake News" which is also a distraction from the notions of how journalism should check its sources and provide evidence for its claims. This is like Fox accusing other channels and media outlets of FAKE news whilst slyly slipping it into the consciousness of the viewer that their own news is beyond demands for evidence and the basic principles of providing journalistic impartiality.
This stance is about declaring yourself the authority, the priest class, the crowned leader. This is nothing to do with science its pure scientism. Her flock are the uncritical, the unquestioning, and the uninformed.
I am just waiting for her to declare us all conspiracy theorists that's right out of the "how to be a propagandist whilst accusing your questioners of being the propagandist" manual. You simply take a term that previously had the purpose of fulfilling the testements of democratic interactions to arrive at a content based conclusion and you demonize it and its very process. You then use the term to denigrate your opponents and turn the debate into an emotional based argument using things like ad hominem, straw men.
Hence "anti science". Hence "fake news".
Its just so pathetic that she is using the memes of "fake news" and "anti science" against us when it is her and her highly connected State funded, Insurance Industry connected, Media connected BPS school use the Science Media Centre to get all over the radio, the BBC and the UK national press to push out their provably flawed studies, whilst hiding the fact that they can declare people ill enough to enter a trial yet recovered at the same time, and then go unchallenged when they present to an ill informed audience of this obvious example of fake news.
When it becomes dangerous is when you have position, power and highly connected, like minded friends and she has all of those.
The KGB would be proud.
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NelliePledge
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Wondering if she will still be using this presentation/ lines when it comes round to the CMRC conference in her Bristol backyard later in the year and how it would go down with attendees?
Keith Geraghty
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- She ignores patients who write letters that disagree with what she is doing
- She sees petitions to stop trials from concerned patients or parents as vexatious
- She sees complaints to University over ethics or complaints to GMC as vexatious
- She views blogs by other academics as false science
what does she propose patients, concerned parents, do if they disagree or want to protest something? - What avenues are open to them to express their views and why shouldn’t a person be allowed to ask for information on a trial or findings from a trial - these are publically funded trials shes had £3.2 million pounds.
Her position as deputy chair of the UK CFS/ME Collaborative is just untenable in my opinion based on the views she expressed today, which basically denigrate patients - painting all complainers or information requesters as militants
Her position on this national body - funded by the MRC and supported by Action for ME *a leading patient charity, - it just can’t be allowed to continue, she should resign in my opinion.
Compare this to a politician who called a police officer a pleb - the public outrage - v this doctor calling thousands of patients and their families - and other scientists, anti-science militants.
Can she continue in the CMRC with this revelation today? She doesnt speak for vast sways of patients - thus how can she continue to hold this position. If she was a politician she'd be gone by 10 pm
- She sees petitions to stop trials from concerned patients or parents as vexatious
- She sees complaints to University over ethics or complaints to GMC as vexatious
- She views blogs by other academics as false science
what does she propose patients, concerned parents, do if they disagree or want to protest something? - What avenues are open to them to express their views and why shouldn’t a person be allowed to ask for information on a trial or findings from a trial - these are publically funded trials shes had £3.2 million pounds.
Her position as deputy chair of the UK CFS/ME Collaborative is just untenable in my opinion based on the views she expressed today, which basically denigrate patients - painting all complainers or information requesters as militants
Her position on this national body - funded by the MRC and supported by Action for ME *a leading patient charity, - it just can’t be allowed to continue, she should resign in my opinion.
Compare this to a politician who called a police officer a pleb - the public outrage - v this doctor calling thousands of patients and their families - and other scientists, anti-science militants.
Can she continue in the CMRC with this revelation today? She doesnt speak for vast sways of patients - thus how can she continue to hold this position. If she was a politician she'd be gone by 10 pm
Large Donner
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I am totally innocent of that, I tell you!
However.......................I will tell you a little secret of mine as long as you don't tell anyone...........
One day........long, long ago.........dressed in my mini skirt.........(or bum frill as my mother called them)............and leather boots....................I with about a thousand students marched down Oxford's High bringing the city's traffic to a standstill ................waving placards........(I was marching...........unknowingly........... under the banner of the communist party with Prince someone or other from some exotic country alongside me)....................shouting 'Margaret Thatcher, milk snatcher'........... (no idea why..................she was threatening to arrange for the colleges to dole out our grants instead of direct payments at the time).....................until a little old lady jumped out and threw a bucket of water over me and my companions and called us a bunch of lazy layabouts. Much to my horror a BBC camera crew shot forward and filmed the whole sorry spectacle. It was on the six o'clock news that night. I just prayed my mother wasn't watching that evening. She said nothing so I probably got away with it.
Wow now that's a coincidence, I was the cameraman on that day and I still have the film in my personal archives. Now you behave yourself or I will be forwarding a copy to your mother!!
NelliePledge
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So as I understand it the BBC science reporters are basically an outpost of the science media centre bu what about channel 4 news are they not in the slightest bit interested in PACE??
NelliePledge
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"Pride comes before a fall" is a saying from my grandad that seems pertinent
Large Donner
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interesting question, but there's no doubt the BPS school have no problem getting on the BBC especially radio.
Kati
Patient in training
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From twitter:
To which David Tuller quoted:
Please like and retweet on Twitter.
To which David Tuller quoted:
Please like and retweet on Twitter.
Countrygirl
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You toad!
(Good luck with that.You will find her down church lane, go through the lych gate, turn right be the sign that says Prepare for Death !! , then right outside the belfry door you will find her.)
Large Donner
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You toad!
(Good luck with that.You will find her down church lane, go through the lych gate, turn right be the sign that says Prepare for Death !! , then right outside the belfry door you will find her.)
Oops. Sorry!
Research 1st
Severe ME, POTS & MCAS.
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Evidence based Anti Science - from which mental health disorder?
Mirroring is an interesting psychological trait that I've noticed people from all walks of life in denial of a critical part of their lives that needs to be recognized tend to engage in unconsciously. For example the most vehement of homophobes tend to be gay themselves, but in denial. E.g the ISIS killer in Florida, USA frequented gay bars before shooting dead 49 people because his religion forbids homosexuality. His murdering spree was thus a demonstration of self hatred.
What is interesting regarding ME denial, is the most vocal of protestors claim that PWME are X,Y,Z when they themselves display these exact traits, e.g Biological ME research is Anti Science, and non Science, is Science.
What is unique about Doctors of course, is they sign up to a code of conduct where they aren't allowed to harm patients without penalty. Now the problem we have obviously is ME (aka CFS) is a potentially fatal disease, therefore to deny the disease ME exists, makes you as a non doctor, a xenophobe in denial and as a doctor - dangerous to the public who suffer from ME. Disease denial because of who is affected isn't be unique though. Plenty of doctors in America where HIV was being actively researched used to deny gays had HIV or if they did they deserved it (Gay Flu, Gay Cancer). By chance, when CFS was released into the USA in the late 80's by CDC as a complaint rather than a disease, ME became Yuppie Flu in the American press, when Yuppie is a British term from the late 80's too. What a coincidence was that.
With ME, the denial of disease is based on the belief ME patients are deserving of harm because there is an option of the table to treat them (psychiatry) which the patient denies, claiming it doesn't work. because it actually doesn't. This is identical to AIDS denial, where HIV victims were deserving of death, because 'gays are sinners', ignoring the fact anyone can develop HIV from a blood transfusion and unprotected sex. So both concepts are deranged, confused,muddled thinking fit for a mental health assessment.
Once you get into the realm of doctors, however, who 1) Deny a disease exists that has official recognition 2) Claim a null outcome therapy works 3) Claim patients are X,Y,Z and to blame for holding back research, then clearly the possibility of mentally ill doctors begins to make sense, specifically delusional thinking and flight of fantasy.
If an independent psychiatrist reviewed the mindset of such doctors who deny a disease affecting an estimated 17 million people in which: The PVFS, CFS, ME patient cannot donate blood, bone marrow or umbilical cord in the UK. That 1 in 4 patients (at least) are homebound, and that some develop nerve damage (neuropathy) multiple infections (immune suppression), inflammation and CNS disorders (POTS), then the conclusion would be some form of mental illness is probably at play, rather than simple acquired professional retardation.
Hypothetical psychiatrist report, documenting what a deluded doctor may say to them in confidence about PWME:
1) Deceased patients diagnosed with ME only believe they have a biological illness called ME.
They therefore aren't dead because functional somatizers take on the sick role for secondary gains: sympathy from the medical profession, time of work, benefits etc.
2) Patients with ME denied medical care and research and who fight their crippling disease 24/7 with no one approved medication aren't normal and are depressed by coping so admirably against adversity. In fact PWME who demand equal rights in health care are: extremists, militants, , conspiracy theorists and worst of all - anti science and more dangerous than Al Queda terrorists of course. I mean it's quite sane to claim bedridden and housebound patients famed for being barely able to stand upright or walk are more dangerous than the world's most dangerous armed group in a country Russia, UK or America couldn't conquer.
Subversive rabble rousers includes fellow academics (retired or otherwise) who support them on Internet forms, blogs, social media etc, and definitely American Scientists who outrageously produced the ME activist manual called: SEID. No one should read this silly book, as it dismissed entirely the far superior British Oxford Criteria which is the premiere, safe, and best way to care for Chronic Fatigue people ('ME') who suffer from aches and pains and feel generally tired. Clearly the Americans are mad.
3) Psychiatry via BPS theory of CFS works to treat ME as it has a null effect in PACE which was a thing of art work. Educated people able to analyze data and charts, including fellow academics and scientists are: spiteful, vexatious and also anti science, the worst offenders even have the gall to see if innocent researchers stand up to scrutiny by filing FOIA requests. What do they think this is, a democracy?!
ME activists and their enables, are in denial It is normal that recovered means to get worse, this is how the normal world operates operates after all, just thought I'd point that out. Why does no one understand, that by altering the meaning of language, we are simply enhancing it? For example if I didn't leave the house for 20 yeas from a bad knee, this is understandable clear proof I recovered from this ailment. Recovered as in to regress. See? Normal. Why am I being harassed with torrents of abuse by the way? The things I've had to endure, the suffering is immense.
4) Schizophrenics can behead, rape, mutilate and eat people when in an bad spell. They are not a threat to anyone. As a professional I will never mention slips ups, as it's not ethical, totally discriminatory and the GMC would probably suspend my medical license if I even made a mild non offensive quip.
Vs
PWME have never harmed anyone. So due to this, this means ME sufferers are indeed a grave danger to society and everyone should know. I should tell as many people as possible, as this is professional behavior of a doctor and their duty to cause divisions and suspicions of future doctors who meet PWME in society and in Emergency Medical Care situations. Make sure I talk to the press, remind me, whenever possible to talk about 'death threats' where the people are strangely never named, and the emails are never proven to have even been sent by a single genuine patient or even their country of origin. And if they were, why would someone do that? Were they abused by NHS staff? Sexually, physically or mentally ? I'm certainly not responsible for getting any hospital staff to believe PWME don't have a disease, after all, by calling a disease a 'myth' and a life style choice', you clearly are validating it and making sure other doctors believe in it fully. Certainly by doing this, when other staff come accross bedridden patients who cannot speak or move who are totally vulnerable to staff behind closed locked doors, I'm sure they are given exemplary care without the slightest chance of prejudice or untoward things occurring.
Thankfully no one was delusional enough in the world to change PVFS ME into CFS and CFS into Fatigue and recommend therapies for 30 years that don't work which kills some patients, whilst claiming they are victims of dangerous militant patients who don't exist.
Countrygirl
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No worries! Mum would enjoy the joke and, if her circumstances were slightly less incapacitating, she would give you a very feisty response. She is not sick enough for a reward of PIP though.
RogerBlack
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http://britishrenal.org/conference-2/#1476183698243-c4713ccb-53be
Discussing their speakers the BRS2017 conference - under the heading
It was described on the leaflet for the conference as http://britishrenal.org/conference-2/#1490623502421-f97eabdc-0562 "Should I just toughen up - how to deal with anti-science"
Nothing strikes me as surprising about the rest of the contents of the conference - mostly 'hard science' type papers.
https://www.ncbi.nlm.nih.gov/pubmed/26607452 - or similar seem to be exceptions.
Psychosocial and Clinical Correlates of Fatigue in Haemodialysis Patients: the Importance of Patients' Illness Cognitions and Behaviours.
Where "negative beliefs about fatigue (beta = 0.10, p = 0.01) and unhelpful behaviours (all-or-nothing behaviour [beta = 0.28, p < 0.01] and avoidance [beta = 0.16, p < 0.01]) explained an additional 36.4 % of the variance."
sounds very familiar indeed.
Discussing their speakers the BRS2017 conference - under the heading
which sounds very credible!
It was described on the leaflet for the conference as http://britishrenal.org/conference-2/#1490623502421-f97eabdc-0562 "Should I just toughen up - how to deal with anti-science"
Nothing strikes me as surprising about the rest of the contents of the conference - mostly 'hard science' type papers.
https://www.ncbi.nlm.nih.gov/pubmed/26607452 - or similar seem to be exceptions.
Psychosocial and Clinical Correlates of Fatigue in Haemodialysis Patients: the Importance of Patients' Illness Cognitions and Behaviours.
Where "negative beliefs about fatigue (beta = 0.10, p = 0.01) and unhelpful behaviours (all-or-nothing behaviour [beta = 0.28, p < 0.01] and avoidance [beta = 0.16, p < 0.01]) explained an additional 36.4 % of the variance."
sounds very familiar indeed.
Kati
Patient in training
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Kati
Patient in training
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Thank you so much for coming forward and for professionally sharing this.
Indeed patients and professionals are indignated about what dr Crawley presented. Imagine if someone presented about patients in renal failure had false illness beliefs and should be treated with cognitive behavioral therapy and not with dialysis and kidney function testing? We the patients with ME have been at this for 30 long years. This group of psychiatrists have been inhibiting science, drug development and access to biomedical treatments for 30 long years.
Sending best wishes, thank you for sharing the slides on social media, they are quite telling. i am sorry if you have been the recipient of abuse. Simply, patients have had it with science that doesn't add up (horrible methodology, outcome switching, and gross misrepresentation).
Edit to add: it seems like @Nephrofan removed his post. Unless told otherwise I will keep my post up because I thought it was a very sensitive post and I am very thankful he came forward and reached out over here.
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A.B.
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Hi and thanks for clarifying your role in this. Do you know by any chance how Crawley was invited to this renal conference?
PS: Patients have legitimate concerns about her work and are using legitimate channels to point out problems. I think it would be good if the British Renal Society apologized for mistakenly giving her space to denigrate critics which include many patients but also researchers and doctors.
Here's also a blog post by Prof. James Coyne, clinical psychologist, that describes Crawley's MAGENTA and SMILE trials in very negative terms. In particular he refers to the intervention in the SMILE trial as a "quack treatment": http://blogs.plos.org/mindthebrain/...tigue-syndrome-study-issues-to-be-considered/
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