Esther Crawley Paediatric Prevalence Study Funded by Action for ME

[Comet]

AFME 2013

"The priorities and themes were drawn from the top 5 patient priorities - determined by consulting the community through a survey in June (2013), which attracted the views of 1,000 people (900 of whom had M.E.). Together, these 5 priorities won 85% of patient first-choice votes:

Disease Processes and causes (underlying pathology)
Better Treatments
Better Diagnosis
Clinical course of ME, outcomes and prognosis (Epidemiology)
Severely Affected patients"

http://forums.phoenixrising.me/index.php?threads/action-for-m-e-placing-patient-views-at-the-heart-of-a-new-research-strategy.26865/

So, in response, they're giving us the same old crap. Way to be cutting edge.

 

[Dolphin]

AFME 2013

"The priorities and themes were drawn from the top 5 patient priorities - determined by consulting the community through a survey in June (2013), which attracted the views of 1,000 people (900 of whom had M.E.). Together, these 5 priorities won 85% of patient first-choice votes:

Disease Processes and causes (underlying pathology)
Better Treatments
Better Diagnosis
Clinical course of ME, outcomes and prognosis (Epidemiology)
Severely Affected patients"

http://forums.phoenixrising.me/index.php?threads/action-for-m-e-placing-patient-views-at-the-heart-of-a-new-research-strategy.26865/

As I have one before, epidemiological studies are often done by psychiatrists and others from the biopsychosocial school so it is risky to ask for them.


Also very often there will be doubt about diagnoses: when there are better diagnostic tools such as blood tests I have more confidence that all or virtually all of the patients and studies actually have ME or CFS.

So again I don't think it's the best time to do epidemiological studies.


Also estimates of numbers affected at this stage are unlikely to be very accurate again because of a lack of diagnostic tools.

We have quite a lot of estimates of how many people are affected. One more won't be that helpful.

 

[Sean]

AfME need to sever their association with Crawley. Immediately and permanently.

 

[rosie26]

But what about patient privacy? I'm sure the patient's legal guardian would not have signed a release of their child's medical information to the research group. I would also be concerned about the possibility of identification of the child from any information provided.

Good point. I am always asked to sign or give the OK for things like this in my country. Whenever I am seen by a trainee doctor I am asked if it is OK to be examined by them or given an IV and I also am asked consent to be part of anything research wise.

 

[Wildcat]

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16th may 2016
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Action for ME Statement on its Facebook - 6 posts down on the AFME FB (on the link below).
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Wildcat writes (here on PR, not on AFME FB): .... AFME have removed all posts from the thread about Dr Crawley's Paediatric prevalence Study. None of the posts were 'potentially defamatory' as AFME claims. I read them as they appeared and no posts were untoward.
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AFME FB's Modus Operandi over many years has been to remove posts to its Facebook which are perfectly polite and reasonable, but which question AFME's policy and actions. AFME used to (wrongly) claim the removed posts violated FB rules. AFME's actions of removing reasonable posts was quite distressing to the patients whose posts were removed. This has been going on for years.

Now AFME have moved up a notch and are excessivley suggesting that posters could be in violation of defamation and libel law. Its difficult to now view AFME as a patient representation charity. It appears that only the most aquiescent (to AFME) posts are allowed on its Facebook. Waving a big stick around and pontificating about Libel Law is not the most welcoming stance for a patient Charity to take towards sick and disabled (many actually vulnerable) ME sufferers.
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Action for ME Statement:
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https://www.facebook.com/actionforme/?fref=ts


"Action for M.E. The Action for M.E. office is not open over the weekend, so we appreciate your patience in waiting for us to respond to comments posted about the research funding we announced last Friday.

We would like to respond to questions about the paediatric severe M.E. study being undertaken by Dr Esther Crawley at the University of Bristol as follows.

Our decision to fund this study was made in 2014. The process of ethical approval for this study by the British Paediatric Surveillance Unit (BPSU), securing funding and establishment of a legally binding contract with the University of Bristol has taken two years.

The British Paediatric Surveillance Unit, which is overseeing this study, was established in 1986 as a joint initiative of the Royal College of Paediatrics and Child Health, Public Health England and the Institute of Child Health. It has made a major contribution to paediatric medical epidemiology across the world, initiating more than 90 studies and publishing/ presenting more than 300 papers based on date from more than 3,400 paediatricians and doctors who see children in the UK.

The BPSU has a rigorous process for assessing methodology of all the studies it approves. This surveillance study of children and young people with severe M.E. complements the epidemiological programme of work studying populations undertaken by University of Bristol, which also includes the Grand Challenge (://www.actionforme.org.uk/.../ceo-blog-prof-george-davey...).

We actively encourage and accept donations from a wider number of sources, including individuals and companies. The £6,000 with which Action for M.E. is funding this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering. This sum has been match-funded by University of Bristol.

The study will examine incidence (the rate of newly diagnosed cases) as opposed to prevalence (the total number of current cases) of paediatric severe M.E. It is about numbers, not treatment: at no point in the study will the research team make a recommendation about, or be involved in, symptom management.

The paediatricians taking part in the study will report new cases of severe paediatric M.E. who fulfil the case definition using protocols developed by the BPSU, and complete postal/online questionnaires to record demographic, clinical and treatment data. This data will be anonymised so that individual patients cannot be identified.

Children and young people who have fatigue that can be explained by other conditions, or for whom routine blood tests and investigations (as set out on p 140 of the NICE guideline for M.E.) have not been completed to exclude other causes of fatigue, will not be included in the study.

All completed questionnaires will be examined by an expert panel to determine the how common severe paediatric M.E. is, how it presents and what symptom management approaches are offered.

While we welcome questions about our work, include the research we fund, we do not allow posts that are defamatory towards any individual or organisation. This is because we have a legal responsibility to now allow such comments to be hosted here and allowing them to remain could result in legal action being taken against us. We define defamation in our Terms and Conditions (www.actionforme.org.uk/about-us/terms-and-conditions; see Appendix A) as follows:

“Defamation occurs when the defendant publishes a statement which tends to lower the claimant in the estimation of right-thinking members of society. Defamation therefore has three requirements:

• the statement must be defamatory (ie. the statement must have a negative impact on the claimant's reputation);
• the statement must identify or refer to the claimant; and
• the statement must be published by the defendant to a third party.
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“Defamation is divided into two sub-categories: libel and slander.

“Libel is the publication in permanent form of a defamatory statement (eg. a newspaper article). Slander is the publication of a defamatory statement in transitory form (eg. a spoken statement). It is generally accepted that bulletin board exchanges on the internet are technically libel rather than slander.

“Ultimately there are shades of grey in this area of the law and so, in order to protect the charity, we will remove any statement that we feel is potentially defamatory.”

For this reason, we have deleted all comments and are no longer accepting comments on this thread. Any further comments will be removed."
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[Wildcat]

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Action for ME (above):
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"We actively encourage and accept donations from a wider number of sources, including individuals and companies. The £6,000 with which Action for M.E. is funding this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering. This sum has been match-funded by University of Bristol."

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Could be the Ashden and Linbury Trusts, which funded the SMILE Trial? . Or another Company/Trust completely.
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[Esther12]

While we welcome questions about our work, include the research we fund, we do not allow posts that are defamatory towards any individual or organisation. This is because we have a legal responsibility to now allow such comments to be hosted here and allowing them to remain could result in legal action being taken against us. We define defamation in our Terms and Conditions (www.actionforme.org.uk/about-us/terms-and-conditions; see Appendix A) as follows:

“Defamation occurs when the defendant publishes a statement which tends to lower the claimant in the estimation of right-thinking members of society. Defamation therefore has three requirements:

• the statement must be defamatory (ie. the statement must have a negative impact on the claimant's reputation);
• the statement must identify or refer to the claimant; and
• the statement must be published by the defendant to a third party.
.
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“Defamation is divided into two sub-categories: libel and slander.

“Libel is the publication in permanent form of a defamatory statement (eg. a newspaper article). Slander is the publication of a defamatory statement in transitory form (eg. a spoken statement). It is generally accepted that bulletin board exchanges on the internet are technically libel rather than slander.

“Ultimately there are shades of grey in this area of the law and so, in order to protect the charity, we will remove any statement that we feel is potentially defamatory.”

For this reason, we have deleted all comments and are no longer accepting comments on this thread. Any further comments will be removed."

LOL - doesn't that mean that no criticism of a researcher's work is allowed to be hosted by @Action for M.E. ?

If an organisation has decided to prevent people criticising researchers then it should not be involved in medical research in any way.

 

[Sean]

“Defamation occurs when the defendant publishes a statement which tends to lower the claimant in the estimation of right-thinking members of society. Defamation therefore has three requirements:

• the statement must be defamatory (ie. the statement must have a negative impact on the claimant's reputation);
• the statement must identify or refer to the claimant; and
• the statement must be published by the defendant to a third party.

Even if the (allegedly) defamatory statement is, you know, true?

Really?

 

[BurnA]

Even if the (allegedly) defamatory statement is, you know, true?

Really?

Wouldn't a right thinking member of society already hold a certain view ( the right one ) ? So if you have the same view ( the right one ) it can't be defamatory.

if I view all principle investigators of the PACE trial to be pseudoscientists,
surely any right thinking member of society would already hold this view ?

 

[ronddejambe]

Wouldn't a 'right-thinking person' be horrified by the SMILE trial?

 

[soti]

truth is not a defense from libel in the UK, right? Did the Simon Singh trial change anything?

 

[Sasha]

truth is not a defense from libel in the UK, right? Did the Simon Singh trial change anything?

English law allows actions for libel to be brought in the High Court for any published statements which are alleged to defame a named or identifiable individual(s) (under English law companies are legal persons, and may bring suit for defamation[1][2][3]) in a manner which causes them loss in their trade or profession, or causes a reasonable person to think worse of him, her or them. Allowable defences are justification (i.e. the truth of the statement), fair comment (i.e., whether the statement was a view that a reasonable person could have held), and privilege (i.e., whether the statements were made in Parliament or in court, or whether they were fair reports of allegations in the public interest).

 

[Valentijn]

Defamation therefore has three requirements:
• the statement must be defamatory (ie. the statement must have a negative impact on the claimant's reputation);
• the statement must identify or refer to the claimant; and
• the statement must be published by the defendant to a third party.

What a load of horse shit. If the statement is true, it cannot be defamatory.

If Dr Esther Crawley wants a better reputation, she should cease to declare that sick children are cured when their symptoms remain the same, cease changing their diagnosis to a psychiatric one if they disagree about being cured, and cease bullying sick children and their parents into submission with threats of forcible removal of the child from his or her home to a locked psychiatric unit.

AFME was showing signs of actually listening to patients and changing its attitude, but this behavior from them is absolutely disgusting and unjustifiable.

 

[Chrisb]

The possible alternatives seem to be that, on the question of defamation, AFME have either:

1. been seriously misinformed, or

2. failed to take proper measures to inform themselves, or

3. been attempting to mislead.

The statement that " the statement must be defamatory (ie.....) may not be false in itself but in the context of everything that it omits it raises serious questions about the intent behind the message. There are doubtless text books full of descriptions of what constitutes a statement for this purpose, what is to be interpreted as defamatory and what the various defences are.

One is inclined to wonder whether membership of AFME provides any benefits other than the right to pay the membership subscription.

 

[Aurator]

It certainly didn't take long for AfME to hit the panic button.

Intimidating people into silence with lawyer-speak is a poor way of responding to criticisms, not least because it actually stimulates, rather than stifles, further criticism. You'd think they'd know that. Then again, given their evident lack of subtlety, maybe not.

I suppose it's the way autocracy inevitably operates. Fortunately there are plenty of other places besides the AfME Facebook page where legitimate criticism can still get an airing in this country. Like it or not, AfME can expect much more of it in the near future.

 

[SilverbladeTE]

It certainly didn't take long for AfME to hit the panic button.

Intimidating people into silence with lawyer-speak is a poor way of responding to criticisms, not least because it actually stimulates, rather than stifles, further criticism. You'd think they'd know that. Then again, given their evident lack of subtlety, maybe not.

I suppose it's the way autocracy inevitably operates. Fortunately there are plenty of other places besides the AfME Facebook page where legitimate criticism can still get an airing in this country. Like it or not, AfME can expect much more of it in the near future.

Standard Operating Procedure of the British Establishment, well and of course, almost any Human "power structure", see how groups like churches hush up their crimes, crimes and cover ups which are in direct violation of their spiritual founders.
over the centuries the British Establishment has calcified mentally (to the great endangerment of the country), and worked out a set of methods for dealing with "non-conformists"

Also as I've said before, AfME is likely to have been a target of another part of the British Establishment's methods for silencing criticism and issues:
they infiltrate and take over protest groups, both by direct misuse and abuse of security and police services,
and primarily by the "old school tie" leaning on people telling them which line to toe, getting only the "right people" put in charge of charities etc

and it's proven historical and criminal fact now that the UK's police and security forces have been criminally misused to monitor, infiltrate and subvert legitimate peaceful protest groups and others.
http://www.theguardian.com/uk/2011/feb/07/judge-should-approve-undercover-police-operations
heck the French secret service even bombed the Greenpeace research/protest boat, so what does that tell you about the reality of our systems?
https://en.wikipedia.org/wiki/Sinking_of_the_Rainbow_Warrior

UK, in a way, is a run like a bizarre mirror image of the Soviet system post Stalin

 

[Snowdrop]

Isn't this issue of defamation related to a document Sonya Choudhury signed.
Forgetting details here but the one that Stephen Holgate also signed as part of MERCUK? Can't remember.

I don't have a lot of faith in the organisation they have allowed themselves to be hog tied and gagged.
This is fear at work. AfME is afraid of BPS crowd. Perhaps they are still beholden in ways we don't know--financial ties or whatever.

 

[TiredSam]

I didn't want to be the first to say it, mainly because I have no knowledge of the matter, but the way AfME is behaving makes it look like a front for the BPS crowd. Labelling reasonable critics as "vexatious", or "defamatory" in this case, refusing to debate anything they don't agree with, all classic BPS techniques. And how on earth anyone who is supposed to care about PWME could even consider working with Esther Crawley ...

 

[Jo Best]

Isn't this issue of defamation related to a document Sonya Choudhury signed.
Forgetting details here but the one that Stephen Holgate also signed as part of MERCUK? Can't remember.

I don't have a lot of faith in the organisation they have allowed themselves to be hog tied and gagged.
This is fear at work. AfME is afraid of BPS crowd. Perhaps they are still beholden in ways we don't know--financial ties or whatever.

I don't think it's fear on their part. I think they were infiltrated so that they actually represent the interests of proponents of the biopsychocial illness model. As I understand it, all members of the CMRC jointly produced the CMRC charter, they didn't just agree to sign up to it (I could be wrong, happy to be corrected on that).

 

[Jo Best]

I didn't want to be the first to say it, mainly because I have no knowledge of the matter, but the way AfME is behaving makes it look like a front for the BPS crowd. Labelling reasonable critics as "vexatious", or "defamatory" in this case, refusing to debate anything they don't agree with, all classic BPS techniques. And how on earth anyone who is supposed to care about PWME could even consider working with Esther Crawley ...

I believe this open letter by Dr. Nigel Speight is from October 2009. I'm hesitant to post it, given his current situation with restrictions on his practice imposed by the GMC, but it has been in the public domain for all these years.

QUOTE

Dear all

I just thought I should inform you officially that after a long
andhappy association with AYME I have decided to resign as their
Patron.Without going into too much detail I would say that over the
last couple of years I have become aware that they have changed their
position on several areas and that our views have accordingly diverged.
In particular AYME seem to have become more willing to collaborate with
the medical and psychiatric establishment in order to appear respectable.
This appears to have been the cause of AYME's relative enthusiasm for t
he NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET.
This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated
themselves from most of the other ME charities (with the exception of
AfME who appear to be taking a similar position). In this controversy I
feel more in sympathy with the rest of you. I have gained the
impression that AYME no longer appreciate my opinions and prefer my status
as their figurehead to be a largely silent one. It is a combination of all these factors
that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

QUOTE ENDS