(UK) Esther Crawley and all the money she is getting from the NIHR

Dolphin

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I came across this last night. From what I have seen in the past, Dr. Crawley does little biological testing - most of her studies are just questionnaires.

http://www.nihr.ac.uk/files/Publications/296542_DeliveringHealthResearchReport_acc3.pdf


Delivering Health Research
National Institute for Health Research Progress Report 2008/09

[..]

Focus on… clinician scientists

Answering the questions that patients want answered

“Myalgic encephalomyelitis (ME or chronic fatigue) is a disabling condition that may affect as many as one in 25 children and young people. Yet it is often under-diagnosed because parents think children are just being lazy or don’t like school.

“The work we are doing, thanks to the 900,000 received from the NIHR, is providing a bridge between academic research and the world of the clinician.

It is enabling me and a research assistant to discover exactly how common ME is among children and young people, triggers of the condition, such as lack of sleep, what services help most and what we can do to prevent it. In short it is helping us to answer the questions that children and young people and their families want answered.”

Esther Crawley
Paediatrician Dr Esther Crawley received one of our clinician scientist awards to investigate chronic fatigue syndrome (CFS/ME) in children and young people. These awards help individuals to establish themselves as independent scientists. See the patient experience story on page 53


[..]

Patient experience story

“My son Ben, nine, was diagnosed with ME or chronic fatigue after many
frustrating months of trying to find out what was wrong. I was at my wits’
end as to what to do and family life as we knew it slowly disintegrated. No
more outings, no more holidays. Ben was too tired to do anything and worse
still did not seem to be getting any better.

“The help we got from paediatrician Esther Crawley has been tremendous. She
worked out a strict management plan for me – Ben was only allowed to do so
much and no more. Slowly he got better but it was a long journey. Dr
Crawley’s support and encouragement meant so much as being the parent of a
child with ME is a lonely experience. There is very little help and
information out there and more often than not you are just left to get on
with it by yourself.

“I would do anything to help the NIHR to fund the work that Dr Crawley is
doing to further ME research. Ben is now back at school but I don’t think he
would have been without the NIHR research project. I was lucky but others
aren’t so fortunate. We urgently need more doctors like Esther to help us in
our search for a cure for ME.”

Jules Wright, Ben’s mother

Dr Esther Crawley’s research is providing a better understanding of the
cause, treatment and prevention of chronic fatigue syndrome (CFS) or ME in
children thanks to an NIHR Clinician Scientist Fellowship. Her study is the
first to examine CFS/ME in children in such detail. See page 42 for further
details. 53
 

Dolphin

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Dr. Crawley previously dismissed concerns that GET could make people worse

A similar percentage of the people who did GET under a NHS specialist reported it made them worse as the percentage made worse in other situations (there was no statistically significant difference) (both percentages were in low 30s)

http://tinyurl.com/6bmfoq i.e.
http://www.thisisbristol.co.uk/displayNode.jsp?nodeId=144913&command=display
Content&sourceNode=231190&home=yes&more_nodeId1=144922&contentPK=20638888

TREATMENT IS MAKING TEENAGER'S ME WORSE
1 reader has commented on this story. Click here to read their views.
BY ALEISHA SCOTT EPNEWS

07:00 - 16 May 2008



A young ME sufferer says a treatment recommended by the Government makes her
feel worse, not better.

Helen Wood, 18, from Thornbury, is not alone. A survey by Action for ME
revealed a third of people with the condition who had a treatment called
graded exercise therapy, also reported it made them worse.

ME, also known as chronic fatigue syndrome, causes a range of symptoms
including muscle pain, tiredness, headaches, sleep disturbances and
difficulties with concentration.



The charity, which released the figures as part of ME Awareness Week, also
said GPs were still largely unsupportive towards patients who had ME.

Helen was diagnosed with ME in 2005 but is thought to have had it for at
least 10 years.

The condition makes her immune system weak and vulnerable to infection and
she said she was constantly exhausted and suffered from aches and pains.

She has not been to school since April 2004 and despite having home
education, has not been able to finish her GCSEs because of the illness.

She sees a psychologist at Bristol's Frenchay Hospital and also a dietician,
but is rationed to just one appointment a month with her GP.

Her graded exercise therapy involves her walking up and down the stairs or
getting in and out of the bath - easy enough for most people but not for
Helen.

"I have been told to walk up and down the stairs a few times a day to get my
muscles working but sometimes it makes me feel bad and sometimes I feel
worse afterwards," she said.

"I'm not able to do much at all and I feel really achy all the time and
tired, I would really like to go out more but I just can't manage it."

She added: "Talking helps the most because I can get things off my chest.

"But I would like people to understand ME better, I don't think that doctors
do at all because they think it is all in the mind but it's not, it's a
physical thing."

The National Institute of Clinical Excellence (Nice) guidelines tell doctors
to develop a personal plan for each of their patients, recommending
cognitive behavioural therapy and graded exercise therapy as treatments.

Graded exercise therapy encourages patients to gradually increase physical
exercise or daily tasks irrespective of how they feel.

But while Action for ME accepted the treatment could help some, it said that
34 per cent of ME patients in its survey said graded exercise therapy had
made their ME worse.

However Dr Esther Crawley, an ME specialist based at the Royal National
Hospital for Rheumatic Diseases in Bath and who helped to draw up the Nice
guidelines, dismissed the findings, saying the survey was unreliable.


"This survey is based on a biased sample of people who have had an issue
with treatment and we cannot deduce who had graded exercise therapy
delivered by a specialist, as Nice recommends," she said.

"Delivered by a specialist, it actually reduces activity to a stable level
and then to a small amount each day. We have had above 85 per cent of people
who said they have been happy with their treatment.

"We do not say to people they have to have the therapy, we give them a range
of options and they choose."
 
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Is this different to her supposed 'data' collection study that AfME are (part?) funding?


I live in the area she covers and have heard some heartbreaking stories from parents of her patients.
 

Mithriel

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This is the woman who claimed she was the only paediatrician working with children with ME in the UK a few days before Dr Nigel Speight, a great champion of children with ME for many years, was "involuntarily" retired.

She makes my blood run cold.

Mithriel
 

Dolphin

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Is this different to her supposed 'data' collection study that AfME are (part?) funding?.
Just to clarify:
The AYME/AfME survey 2008 is nothing to do with that.

As I recall, the AfME gave her (and Barts!) some money to review clinics. Given how dismissive she was of the reports of adverse reactions from GET (and we know that Barts would be similar), I don't think it was a good way to spend money.
This review of services has taped into more money - but not sure it's the NIHR money as I think the NIH money is for children (could be wrong) while she is involved in a more review of clinics/services generally.

I live in the area she covers and have heard some heartbreaking stories from parents of her patients.
Interesting.

Some of the statements I've heard her say aren't as hardline as some people. But I think a problem is that lots of children will get better anyway in time and a bit of support. So she believes that this will work for all children as well as adults (who are less likely to get back to full/near full health with just management strategies).