Crawley: How to deal with anti-science BRS2017

Countrygirl

Countrygirl

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Luther Blissett said:
The picture on the left of the slide represents the great unwashed, the girl on the right represents the type of people who do not get ME.

On the left, downtrodden, dirty, poorly maintained home, poor eye contact, drab, cheap clothes etc. The type of people the middle class look down on.

View attachment 21037

On the right of the the slide, confident, clean, glamorous, fashionable, tennis court, expensive handbag, etc. The type of person to appeal to the conference attendees.

It is a perfect example of Othering, making the people in the first slide unappealing, a group of people who are not like us. (Us being the type of person who enjoys yachting, fashion, etc)

It is an appeal to stereotypes and unconscious bigotries in my opinion.
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The people on the left aren't representative of Middle Eastern Christian refugees who are suffering extreme persecution, including crucifixion, are they? It does look like a war zone, to my view.
 
S

Sean

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Art Vandelay said:
This psychiatry stuff is confusing.
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Pfft. You will never make it in the public relations scam industry. :rolleyes:

Psychiatry is not confusing. It is flexible, adaptable, dynamic, moving on, entering an exciting new era, boldly facing the challenges of modern life and working together with the community to offer exciting new products, delivering an exciting new family-friendly future, using exciting and new and new and exciting technologies to enhance the client experience,...

Did I mention it would be exciting and new? :woot:

You get the idea.

Wessely certainly does. :meh:
 
trishrhymes

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Thank you for finding the origin of the photo, @Forbin. That makes it even more despicable misuse of other people's photos. Using the photo of a dignified and loving family who have the misfortune to be extremely poor and who have no connection with ME or with Crawley to illustrate her denigration of ME sufferers is horrible.

Edit to add - and it implies a connection with her descriptors including drug abuse and crime. Vile and libellous.
 
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Countrygirl

Countrygirl

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trishrhymes said:
Thank you for finding the origin of the photo, @Forbin. That makes it even more despicable misuse of other people's photos. Using the photo of a dignified and loving family who have the misfortune to be extremely poor and who have no connection with ME or with Crawley to illustrate her denigration of ME sufferers is horrible.

Edit to add - and it implies a connection with her descriptors including drug abuse and crime. Vile and libellous.
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Yes, thank you @Forbin .

I agree wholeheartedly with @trishrhymes . I find the exploitation of this tragic and suffering family as a means of promoting her dishonest and harmful agenda on another very vulnerable and sick community frankly abhorrent.
 
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2

2kidswithME

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Luther Blissett said:
The picture on the left of the slide represents the great unwashed, the girl on the right represents the type of people who do not get ME.

On the left, downtrodden, dirty, poorly maintained home, poor eye contact, drab, cheap clothes etc. The type of people the middle class look down on.

View attachment 21037

On the right of the the slide, confident, clean, glamorous, fashionable, tennis court, expensive handbag, etc. The type of person to appeal to the conference attendees.

It is a perfect example of Othering, making the people in the first slide unappealing, a group of people who are not like us. (Us being the type of person who enjoys yachting, fashion, etc)

It is an appeal to stereotypes and unconscious bigotries in my opinion.
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This photo, thanks @Luther Blissett , isn't even from this country, as far as I can tell. Any more than the tennis champion photo, which we know is from a US site.

ETA, thanks @Forbin for finding the source of the photo. (Might someone wish to let World Vision know someone has misused their photo? They do great humanitarian work in very difficult places.)

Having live for long stretches of my life in countries that are 'less developed', I can assure you that people are people wherever you go, good, bad and every stage in between (where most of us live if we are honest!) Some of my fondest memories are of the amazing and humbling hospitality we received when we were welcomed into homes of people who are very poor in monetary terms (as this photo implies), but rich in love. Where, incidentally, anyone with ME would have a cot in the corner of the room and be cared for with love and whatever resources the family had.
 
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U

user9876

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Crawley describes herself in these terms

Esther Crawley
NIHR Senior Research Fellow, University of Bristol

Esther Crawley, is a Professor of Child Health at the University of Bristol, a Consultant Paediatrician and an NIHR Senior Research Fellow. She is the clinical lead for the Bath specialist CFS/ME service for children based at the Royal United Hospital in Bath. This service provides assessment and treatment for over 450 children and young people each year. Esther leads a research team which investigates the epidemiology and treatment of CFS/ME in children and adults. The epidemiological work uses the Avon and Longitudinal Study of Parents and Children (ALSPAC) and a large cohort of patients (~18,000 adults, and 2500 children) to study the causes and different types of CFS/ME. Her team have developed expertise in delivering complex hard-to-do trials. They have just started recruiting to FITNET-NHS which will be the largest RCT in CFS/ME. FITNET-NHS will test the effectiveness and cost-effectiveness of internet delivered CBT throughout the UK. She is also running a large trial investigating Graded Exercise Therapy for children with CFS/ME. Esther trained in Oxford, did her PhD in London and lives in Bristol when she is not sailing or skiing with her teenagers.
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I was wondering about her claim that her team has expertise in delivering complex trials because as far as I can see she has not actually published any trial results yet. Also her trial protocols are poorly designed to have only subjective measures when treatments are unblinded.

It also lead me to think as someone who has just been promoted to professor she has remarkably little interesting research content to talk about.
 
Jo Best

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Forbin said:
The photo on the left is of a poor family living in Armenia. It appears on the World Vision International website along with the story "Hiding poverty - a matter of honour for Maria's family."
http://www.wvi.org/armenia/article/hiding-poverty-matter-honour-marias-family
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Thank you for finding the source of the other photo.
Makes it even more disturbing to me that the 15 year old Maria has cerebral palsy.
It is all so distasteful and disrespectful towards the people in both photographs as well as to the patient community that it is hard to put into words. I feel that the seemingly unwavering support given to Esther Crawley's (in my view unprofessional) conduct over the years by the establishment has encouraged an escalation in outrageousness and I wonder whether a tipping point will ever be reached where they agree that she has crossed the line.
 
Cinders66

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I think it stands to reason that the socially struggling and economically deprived might be more prone to ME and worse cases of ME, than those from happy, affluent backgrounds. Poor diet, early life stres, stress during infections, stressful miserable living conditions, general money and life stresses , over work and lack of support etc are all not going to help people if they are genetically predisposed and get a risky nasty infection and these are all associated more with struggling backgrounds. Then once people are sick, if you can go privately in the UK I think you have shorter waiting times, better care and better chances, especially inpatient care, which again might affect outcomes. If you can afford to immediately pay to get a nanny in or a care for your elderly relative to reduce the burden on yourself or pay yourself for the care you need , instead of struggling with the state benefit system it will help in those key early stages. The people I personally knew who did well with M.E, one was whisked off to the south if France as soon as sick for a year of convalescence and the other who was more severe was able to go immediately into good inpatient facilities thanks to private health insurance. If we imagine adverse circumstances of living with a drunk uncaring mother in a high rise building, battling the NHS and social care etc then I think we can imagine less fortunate outcomes.

Ofcourse that doesn't mean people from happy comfortable backgrounds can't get very ill and can't develop M.E or severe ME. In the UK the yuppie flu tag is still repeatedly dragged up, so pointing out that isn't a fair representation, in fact it's more likely the opposite, isn't a problem for me, although those pictures used are unnecessarily extreme.
 
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Jo Best

Jo Best

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slysaint said:
More true to life would be the pictures in reverse; ie happy, confident, full of life person before; then they get ME and are forced into a life of poverty, vilification and stigmatisation.
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Quite, she could have used this, another in the series of posters produced by someone with severe ME, as example of 'before' and 'after' combined with the point made earlier about patients raising funds for research that they want.

(5) MIRROR FINAL DESIGN 2.jpg
 
Countrygirl

Countrygirl

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slysaint said:
But then Crawley doesn't recognise the severely affected as having ME. Makes me wonder exactly what she considers 'chronic disabling fatigue'.
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I have 'heard' that she considers that only being able to attend school for two days a week is 'severe' People who are bedridden run the risk of being labelled with Pervasive Refusal Syndrome/PAWS.

I have also 'heard' that she considers that illness that does not resolve within a certain number of months cannot be a result of 'CFS'.
 
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Dx Revision Watch

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Dx Revision Watch

Dx Revision Watch

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Forbin said:
The photo on the left is of a poor family living in Armenia. It appears on the World Vision International website along with the story "Hiding poverty - a matter of honour for Maria's family."

http://www.wvi.org/armenia/article/hiding-poverty-matter-honour-marias-family
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So not only has Dr Crawley used a photograph without the consent of the young American blogger who owns the photograph's copyright, she has also used a photograph by Nune Hayrapetya, who is clearly credited on the site of World Vision International for both the article and the photograph.

http://www.wvi.org/armenia/article/hiding-poverty-matter-honour-marias-family

article • Tuesday, October 29th 2013
Hiding poverty - a matter of honour for Maria's family

Author Nune Hayrapetyan World Vision Armenia
Maria's family standing next to their house. Photo by Nune Hayrapetyan


Nune Hayrapetyan

https://www.linkedin.com/in/nune-hayrapetyan-804296109
 
Dx Revision Watch

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The CMRC Charter for Members originally included this clause:

https://www.actionforme.org.uk/uploads/pdfs/cmrc-charter.pdf

3.2 Applying for membership

3.2.3 Members will be required to sign a declaration that they will not take part in the harassment or abuse of researchers. Neither will they take part in orchestrated campaigns against those conducting peer-reviewed research.

Which by 2016 had been revised to:

3.1.3. All members must not take part in the harassment of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research. This does not prevent engagement in appropriate scientific debate.


Outside of the CMRC, it appears that Science Media Centre and certain researchers may collaborate in orchestrated campaigns against patients and professionals who advocate for them.

Well I'm sorry, but I do not buy into the MEA's "better to be inside the CMRC tent etc."

As Esther12 has said in the other thread:

With Crawley....smearing critics, including Tuller and many patients, as anti-science and libellous; directing limited research funding to indefensible junk science like SMILE... how much worse could she show herself to be before it was time to walk away?
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