@Nephrofan thanks for engaging with the community, and welcome.
Crawley: How to deal with anti-science BRS2017
- Thread starter Cheshire
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Yes, thank you @Nephrofan
I have seen this several times before - doctors and other academics hearing just one side of the story (about how awful ME-patients are who dare have opinions on faulty research, for instance) and I have been surprised and disappointed by how easily some have accepted and even adopted prejudices against a patient group who just wants to figure out what our disease is and how to treat it (which, before I got sick with ME, I thought was a mutual goal for all researchers, doctors and patients).
But rarely do I see anyone taking a step back when patients objects to how ME and its sufferers are described by people as EC, engaging with the patient-side - and listening!
Over the years (well, decades actually) I've learned to sincerely appreciate such open-mindedness and engagement with patients.
You didn't have to come here and make amends, this was very decent of you!
By the way - Jen Brea's TED Talk about ME has been mentioned before in this thread as a recommendation. Here it is. It is seen by over a million people by now and I think it is a great introduction to ME. Would love to hear your thoughts if you have the chance to watch it.
I have seen this several times before - doctors and other academics hearing just one side of the story (about how awful ME-patients are who dare have opinions on faulty research, for instance) and I have been surprised and disappointed by how easily some have accepted and even adopted prejudices against a patient group who just wants to figure out what our disease is and how to treat it (which, before I got sick with ME, I thought was a mutual goal for all researchers, doctors and patients).
But rarely do I see anyone taking a step back when patients objects to how ME and its sufferers are described by people as EC, engaging with the patient-side - and listening!
Over the years (well, decades actually) I've learned to sincerely appreciate such open-mindedness and engagement with patients.
You didn't have to come here and make amends, this was very decent of you!
By the way - Jen Brea's TED Talk about ME has been mentioned before in this thread as a recommendation. Here it is. It is seen by over a million people by now and I think it is a great introduction to ME. Would love to hear your thoughts if you have the chance to watch it.
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Thanks, Kati, for asking. And thanks, @JaimeS for answering.
It's always hard to know which abbreviations that are easily understood and which are not.
It's always hard to know which abbreviations that are easily understood and which are not.
With regards to Esther Crawley's work it might be good to note also that her SMILE trial involved using the Lightning Process as a treatment strategy.
http://www.meassociation.org.uk/201...ndor-specialist-medical-care-5-december-2013/
For me this rates as voodoo medicine.
http://www.meassociation.org.uk/201...ndor-specialist-medical-care-5-december-2013/
For me this rates as voodoo medicine.
Exactly. Anyone who collaborates with a charlatan such as phil Parker who sells a snake oil treatment such as the lightening process, is by association (or even directly) of unsound scientific judgement
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Now that would make a great tweet!!
You certainly don't want to be seen endorsing her abuse.
You certainly don't want to be seen endorsing her abuse.
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I see it as desperate effort to widen the propaganda area.
Seem to not realise that, in their increasingly desperate efforts to shore up their crumbling facade, they are actually shooting themselves in the foot, over and over again. Just do not realise that when you have dug yourself into a hole, you really do need to stop digging.
I think the term "anti-science" needs clarification, because it really means anti-good-science - something no normal person would need clarifying. All the people EC accuses of being anti-science are, in fact, just anti-bad-science, yet extremely pro-good-science.
So here we are with that conflation, misdirection and labelling thing yet again. Label people as anti-science who are, actually, just anti your particular brand of bad science, so the bad scientists look like the goodies, and whose who oppose them look like the baddies. It is the same old trick used over and over again; rather pathetic really. People who do this never seem to realise it eventually becomes their undoing.
But as they say, you can fool all of the people some of the time, and some of the people all of the time, but you cannot fool all of the people all of the time. In this effort to widen the BPS "catchment area", I think it just might backfire, and enlighten yet more people about what is really going on.
I wonder if EC would really be able to look JE in the eye, and accuse him of being anti-good-science, yet alone all those other top-flight scientists who have signed their open criticism of PACE?
Seem to not realise that, in their increasingly desperate efforts to shore up their crumbling facade, they are actually shooting themselves in the foot, over and over again. Just do not realise that when you have dug yourself into a hole, you really do need to stop digging.
I think the term "anti-science" needs clarification, because it really means anti-good-science - something no normal person would need clarifying. All the people EC accuses of being anti-science are, in fact, just anti-bad-science, yet extremely pro-good-science.
So here we are with that conflation, misdirection and labelling thing yet again. Label people as anti-science who are, actually, just anti your particular brand of bad science, so the bad scientists look like the goodies, and whose who oppose them look like the baddies. It is the same old trick used over and over again; rather pathetic really. People who do this never seem to realise it eventually becomes their undoing.
But as they say, you can fool all of the people some of the time, and some of the people all of the time, but you cannot fool all of the people all of the time. In this effort to widen the BPS "catchment area", I think it just might backfire, and enlighten yet more people about what is really going on.
I wonder if EC would really be able to look JE in the eye, and accuse him of being anti-good-science, yet alone all those other top-flight scientists who have signed their open criticism of PACE?
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I think by abuse they mean 'any scrutiny of statements I make smearing a patient community'. Any convo you enter into with them they count as harassment/abuse. Been doing it for decades
We do appreciate you coming back here and providing those thoughtful responses.
I will say that while some researchers have unfortunately had some bad experiences due to a very small number of abusive people, some of the criticisms of Dr Crawley are genuine and should be considered "pro-science", not "anti-science". Nor is it specifically criticism of psychology as there are psychologists in the field such as Dr Leonard Jason, that are much loved by the community because, well, he actually listens to our needs and concerns and has contributed a breadth of high quality biological, sociological and psychological studies over the years, including the best epidemiological/population based studies so far. I'll repeat for emphasis: despite the fact that he has himself conducted randomised CBT and graded exercise trials, he is still highly respected in the community.
Very briefly, the criticism of Dr Crawley: Specifically criticism of her promotion of the quack therapy "Lightening Process" (there was a petition in an attempt to stop a trial based on this quack therapy) and questionable research practises, specifically selective reporting/cherry picking data in studies (and refusing to use objective measures of functioning, eg. actigraphy despite patients repeatedly insisting these measures are more trustworthy and useful than self report questionnaires), not publishing primary outcomes specified in protocols (with no valid reason provided for not publishing) etc. These are the basis for many FOI requests in this field made by patients and scientists, for example.
I will say that while some researchers have unfortunately had some bad experiences due to a very small number of abusive people, some of the criticisms of Dr Crawley are genuine and should be considered "pro-science", not "anti-science". Nor is it specifically criticism of psychology as there are psychologists in the field such as Dr Leonard Jason, that are much loved by the community because, well, he actually listens to our needs and concerns and has contributed a breadth of high quality biological, sociological and psychological studies over the years, including the best epidemiological/population based studies so far. I'll repeat for emphasis: despite the fact that he has himself conducted randomised CBT and graded exercise trials, he is still highly respected in the community.
Very briefly, the criticism of Dr Crawley: Specifically criticism of her promotion of the quack therapy "Lightening Process" (there was a petition in an attempt to stop a trial based on this quack therapy) and questionable research practises, specifically selective reporting/cherry picking data in studies (and refusing to use objective measures of functioning, eg. actigraphy despite patients repeatedly insisting these measures are more trustworthy and useful than self report questionnaires), not publishing primary outcomes specified in protocols (with no valid reason provided for not publishing) etc. These are the basis for many FOI requests in this field made by patients and scientists, for example.
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This so deceptively simple question desperately needs to be answered. Last couple of days I have benefited from the skills of my doctor, various nurses and hospital consultant, as is part and parcel of getting slightly long in the tooth, and my admiration and respect for these people is boundless; they really are a fantastic body of highly dedicated, compassionate professionals, working under immense pressures sometimes.
So I find it absolutely appalling that people such as the PACE-pervaders can really purport to be part of this same profession, and lay claim to its high ideals. Something is indeed very wrong.
So I find it absolutely appalling that people such as the PACE-pervaders can really purport to be part of this same profession, and lay claim to its high ideals. Something is indeed very wrong.
I worked very hard to gain my degree and was on course to be ..........................(huge shame!.......but one can be permitted a little foolishness in youth ) a psychologist.....................when ME struck
) a psychologist.....................when ME struck
Exactly. Public audit trail. Pattern of behaviour. Implausible deniability. It is actually a good move from our perspective.
I imagine EC has now introduced many more medical professionals to an issue they were unaware of, and many of those will not be fooled, or at least sufficiently interested to understand more.
I imagine EC has now introduced many more medical professionals to an issue they were unaware of, and many of those will not be fooled, or at least sufficiently interested to understand more.
Sorry, can't resist my own caption: "Where the hell did that other tennis ball go?!"
I so wished she'd used this :
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Seem to not realise that, in their increasingly desperate efforts to shore up their crumbling facade, they are actually shooting themselves in the foot, over and over again. Just do not realise that when you have dug yourself into a hole, you really do need to stop digging.
NO, please let her keep digging as long and deep as she and her cronies like!
NO, please let her keep digging as long and deep as she and her cronies like!