Jen Brea comments on Esther Crawley's behaviour

[Allele]

Petitions are usually addressed to someone with the power to stop a certain action.

I don't want to ask an institution to tell her what to say. That is unethical in my opinion.

The only person who is is pretending they have my and others consent to speak for me is Esther Crawley.
She uses this presumed consent to study us, and tell others what 'we' want.

The action I want stopping in this instance is her speaking for me.
I only hold her responsible for this action.

I hold institutions responsible for overlooking and/or ignoring other actions she does, but this 'spokesperson' laundering is hers alone.

It's an issue that can't be resolved without personalising, but I fully understand why people might not like it.

If a mass withdrawal of consent is seen as an attack, then that says more about the people who view consent as something that cannot be withdrawn.

If I was claiming to speak for anyone else and they do not consent to it, I fully expect them to tell me stop.

I'm fine with telling institutions she doesn't speak for us in addition. But they can just say 'x group' supports her, and wave it away.

I'm fine if nobody else agrees with my view. I realize that I'm in a minority in most of my views.

100% agree with this eloquent riposte. You speak for me

 

[Valentijn]

The purpose of the petition is generally to ask for an agency to take an action in a certain manner, or cease an action. Obviously Crawley will not cease her spiel of making a martyr of herself on our behalf, so we cannot expect a petition on the subject to result in the change which we desire.

In our case the actual purpose would be to make it clear that Esther Crawley does not speak for ME. This could then be cited to a variety of audiences (TEDx, Bristol, funders, CMRC, MRC, etc) to make it clear that she is not supported by the patient community.

Generally I agree about criticizing the science, not the person. But in this case the ME community has to deal with someone who is lying about us, and about what we want. Her lies are not about the science, but we are faced with talking about the liar rather than the science to refute the lies, or simply letting the lies stand unchallenged.

A petition seems to be the most effective way to set the record straight, as it can stay open indefinitely, any patient or carer can sign it, and it can be linked to in the future to refute anything Crawley claims to say on our behalf. An open letter is more limited as signatures need to be added manually, it needs to be sent to a specific audience, etc.

So I think the best solution is use a petition site to simply make the statement that Esther Crawley does not speak for ME, without the expectation that it might be effective in causing Esther Crawley to stop doing it, or cause any specific agency to withdraw its support of her. The statement/petition can then be used in the future to support any other advocacy opposing her work, funding, etc, as necessary.

I do agree that the focus for her not speaking for ME should be based on the methodological problems in her research, with the implication that the patient community would be very supportive of any ethical research done with rigorous methodology. If her bad behavior ceases, so would our opposition to her behavior.

 

[Wonko]

It's a pity the A Team is getting on a bit really

(and that they aren't real)

 

[BurnA]

A petition seems to be the most effective way to set the record straight, as it can stay open indefinitely, any patient or carer can sign it, and it can be linked to in the future to refute anything Crawley claims to say on our behalf.

This does make sense, but I am very sceptical of petitions at this stage.
I have lost count how many there have been over the last few years alone and none of them seen to have any effect.

The anti MEGA one is probably the exception, and was warranted mainly because we needed to refute the Pro MEGA petition. But it still didn't stop Crawley or Holgate in their tracks.

(although I'd like to believe it has some effect on them not getting funding, we don't know if it did)

So i don't know if another petition will be all that useful.

I think if we want to really make an impact we ask scientists to sign an open letter against pseudoscience.

 

[Allele]

So i don't know if another petition will be all that useful.

I think if we want to really make an impact we ask scientists to sign an open letter against pseudoscience

The reason it might be useful to try both of these now is bc the landscape is entirely more fertile at this moment. The momentum is building in a way that is adding credibility to us as a patient group and disease, as well as making it "safe", and even possibly "hot" for journalists to pick this up and report about it.

This is new terrain for us and I think we should sow seeds and watch them grow.

 

[Luther Blissett]

I would see it differently as a professor at Bristol university she is a senior member of staff and is making statements that are highly related to her professional activity at Bristol. Thus to me she is speaking as a senior employee of Bristol university and hence giving the institutions view.

I understand that view. I see her actions as unprofessional, immoral and wrong. I don't like leaning on institutions to clamp down on activity that is legal in their rules. In the case of Esther claiming to speak for us, she is not breaking any rules. In other activities she probably is.

I have personal experience of people wanting a firing or disciplinary action because of legal behaviour. A lot of people (for the situation) decided they didn't like the behaviour. It feels like bullying and harassment.

A simple declaration from us as @Valentijn suggests above has a few positives. It has us wielding our personal power without relying on institutions to come over to our side. No middleman required to get our point across.
It would mean we don't have to ask a lot of people to continue signing lots of petitions to different institutions. No paralysis by constant petitioning.

We can sign one petition then a single signposting in other situations to the petition is all that we need to show what a lot of people feel. (It would be harder to come out with PR fluff against, making them look bad if they tried.) Institutions are used to the usual petitions and have strategies of deflection and counter propaganda.

I think of it as more like a mass shunning. A common declaration of 'No'.

 

[Alvin]

I would not send anything to Bristol, it will be spun as harassment. They are not innocent victims here, they are enablers of her lies and seem to take any opportunity to bolster them and would likely use us to do it.

Arguing the science is not going to get us very far, most media outlets today have a false equivalence or bothsiderism mentality, and they don't have our understanding of ME/CFS, they only have the talking points from Ester vs ours and often post both to let the viewer decide (though notice how the "official" one is typically given lots of cover, the recent article posted here mentioned but did not dig into the important parts one of us would have if we wrote the article).

Media campaigns are quite effective because people respond to media narratives (hence what Ester is doing), and emotion changes more minds then facts. Though we should not be afraid to use the law, petitioning the government (if they have been shown to be friendly to science) might be worth it, they have the ability to rein in her power to take children away from their parents and "treat" them, and i bet most government officials don't know that she has done this to children and if made a huge news story may prompt action. Also the fact the inventor of LP was barred (legally?) from promoting LP for ME/CFS is worth fleshing out, she is doing it for him, her scamming is no more acceptable then him using the same lies.

Sometimes the legal system is also worth using, i would have liked to see her face legal consequences for taking away children and paralyzing them potentially for life with her quackery treatment and lies, and i believe there is one being fought right now where someone's child is under threat of forced "treatment" unless they improve by a certain date.

I fully agree with Derya Unutmaz. Jen has shown the sort of understanding of human nature that the so-called professionals seem so sadly to lack.

I think there is no real need for petitions now. The tide has turned. SMILE is so ludicrous nobody can defend these trials now. There will be some of the same rhetoric for a bit longer but not that much longer.

Happy New Year!

I don't think it has turned yet, but its in more peril then it was. She still gets lots of coverage for her quackery and benefits from a lot of open mindedness and "objective" reporting

 

[Jonathan Edwards]

I would personally not recommend any further petitions at present. The OMEGA petition stands as an indication of patient opinion. The process of producing the Buzzfeed article will have involved a number of people who will have had to re-think their position, like Dr Bishop. Recent events have also made it easier for scientists (and indeed Jen Brae) to express concerns without appearing to be attacking individuals. There have been other communications not in the public domain. Charles Shepherd and others have made a lot of progress on the NICE front. Cochrane will not be able to produce another turkey without a major response from the academic community. Michael Sharpe is tweeting himself into the deepest hole yet seen. I think Esther Crawley is unlikely to continue behaving the way she has. She is intelligent enough to realise she has scored an own goal now.

So I think we should take Jen's advice.

 

[dannybex]

Brea makes so many excellent points, but the following is the most powerful IMHO:

You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice."

We have voices and we use them every single day. We are speaking for ourselves *all the time.* The practice I believe you need to cultivate is that of listening. Try taking a media diet for one year. Stop attacking. Stop defending.​

 

[Skycloud]

I broadly agree with @Jonathan Edwards.

I understand the feeling of needing to do something about EC, but she's done herself no favours. The SMILE trial is a gift.

This thread went off at a tangent. Jen's tweets are great - she's a smart woman.

 

[Barry]

I would personally not recommend any further petitions at present. The OMEGA petition stands as an indication of patient opinion. The process of producing the Buzzfeed article will have involved a number of people who will have had to re-think their position, like Dr Bishop. Recent events have also made it easier for scientists (and indeed Jen Brae) to express concerns without appearing to be attacking individuals. There have been other communications not in the public domain. Charles Shepherd and others have made a lot of progress on the NICE front. Cochrane will not be able to produce another turkey without a major response from the academic community. Michael Sharpe is tweeting himself into the deepest hole yet seen. I think Esther Crawley is unlikely to continue behaving the way she has. She is intelligent enough to realise she has scored an own goal now.

So I think we should take Jen's advice.

I am very happy to take this on board. There are times when forces set in motion should be allowed to run their course, and other well-meaning actions not risk inadvertently jeopardizing that. Jonathan's advice that moves are afoot behind the scenes, convinces me we should watch and wait, a couple of months at least, before seriously considering any more petitions. I trust Jonathan's instincts and knowledge on this.

 

[Peter T]

I don't want to ask an institution to tell her what to say. That is unethical in my opinion.

I in general agree with @Luther Blissett, that we should not be seeking to censor academic debate, indeed that is what Creawley and the UK PACE appologists are seeking to do with their harrasment narrative.

I defend Crawley's right as an academic to make fallacious arguments based on bad science, even though it has been used by her and others to justify medical abuse of people with ME including adolescents and young children, however in the University context I do not defend her right to deliberately lie to suppress rational scientific debate. I would not want to ask the University of Bristol to suppress her academic freedom, but I do however want to ask them to prevent her from deliberately using false information to libel, slander and abuse national charities, other academics and whole groups of people in order to suppress rational scientific debate.

Further I feel that the University of Bristol has failed in its moral and potentially legal obligations in relation to the ethical aproval of the SMILE study and in relation ethical aproval of Crawley's studies using GET and CBT. The University needs to be further challenged on this.

in contrast to supporting her academic freedom to get things so drastically wrong, she does not have a clinical freedom to perpetrate what amounts to medical abuse. However challenging her and many others' clinical practice is not the responsibility of her University but is the responsibility of her NHS Trust, her Health Authority, the NHS as a whole, NICE and the BMA.

In summary I feel that is wrong to challenge an individual's academic freedom, but that it would be correct to challenge the Unviersity of Bristol in relation to her false narrative confounding legitimate criticism with harrasment and in relation to their ethical aproval for a number of her studies. So I support a petition or open letter to her University in relation to these issues.

It is right also to challenge her clinical practise, though given that she, although a prominent advocate, is not alone in recommending CBT and GET perhaps any petition or open letter should be more general than just Crawley.

(Added after first posting: sorry it took me quite a while to write this, not a good brain day, so it might be superseded by other comments that appeared whilst I was writing it.)

 

[Samuel]

And that is just one family that we know about, there will be more too frightened to even tell friends for fear of care proceedings.

even worse, there might be, as has been the case, parents who are all too happy to go along with authority.

these children are isolated and not being protected from their families OR the authorities.

they are children, so they do not know who they can trust. not even whether they can trust their grandparents. they are being told to not trust their own bodies or common sense. and they are being told that they are defective. light needs to be shed on this too.

 

[Sean]

Academics have the right to put forward new and controversial ideas. In fact that is almost their job description (on the research side, at least). We should always defend that right.

They do not have the right to demand that those ideas get implemented in the real world, on real living humans, before they have survived rigorous testing (including safety where applicable), nor against the wishes of those having the ideas shoved down their throats under duress, sometimes extreme duress and intimidation in Crawley's case. We should always deny that 'right'.

 

[guest001]

The anti MEGA one is probably the exception, and was warranted mainly because we needed to refute the Pro MEGA petition. But it still didn't stop Crawley or Holgate in their tracks.

Except that thus far they have been refused funding twice for their MEGA proposal.... it's hard to say to what extent OMEGA helped things along, but we can't know that it didn't.

 

[guest001]

Esther Crawley is unlikely to continue behaving the way she has. She is intelligent enough to realise she has scored an own goal now.

I'm not quite so assured of this tbh. But if she continues to behave so rashly it will only hurt her, life can't be much worse for pwme so her contortions of reality only serve to self-inflict.

 

[guest001]

I in general agree with @Luther Blissett, that we should not be seeking to censor academic debate, indeed that is what Creawley and the UK PACE appologists are seeking to do with their harrasment narrative.

I defend Crawley's right as an academic to make fallacious arguments based on bad science, even though it has been used by her and others to justify medical abuse of people with ME including adolescents and young children, however in the University context I do not defend her right to deliberately lie to suppress rational scientific debate. I would not want to ask the University of Bristol to suppress her academic freedom, but I do however want to ask them to prevent her from deliberately using false information to libel, slander and abuse national charities, other academics and whole groups of people in order to suppress rational scientific debate.

Further I feel that the University of Bristol has failed in its moral and potentially legal obligations in relation to the ethical aproval of the SMILE study and in relation ethical aproval of Crawley's studies using GET and CBT. The University needs to be further challenged on this.

in contrast to supporting her academic freedom to get things so drastically wrong, she does not have a clinical freedom to perpetrate what amounts to medical abuse. However challenging her and many others' clinical practice is not the responsibility of her University but is the responsibility of her NHS Trust, her Health Authority, the NHS as a whole, NICE and the BMA.

In summary I feel that is wrong to challenge an individual's academic freedom, but that it would be correct to challenge the Unviersity of Bristol in relation to her false narrative confounding legitimate criticism with harrasment and in relation to their ethical aproval for a number of her studies. So I support a petition or open letter to her University in relation to these issues.

It is right also to challenge her clinical practise, though given that she, although a prominent advocate, is not alone in recommending CBT and GET perhaps any petition or open letter should be more general than just Crawley.

(Added after first posting: sorry it took me quite a while to write this, not a good brain day, so it might be superseded by other comments that appeared whilst I was writing it.)

This seems reasonable to me. It's neither manic nor impulsive.

 

[Alvin]

But if she continues to behave so rashly it will only hurt her

I would like to see her face consequences for her lies and harm she has caused and legal consequences would be appropriate in some cases

 

[Ysabelle-S]

Michael Sharpe is tweeting himself into the deepest hole yet seen.

 

[guest001]

I would like to see her face consequences for her lies and harm she has caused and legal consequences would be appropriate in some cases

Oh gosh, I don't disagree. But I do feel in terms of creating an 'evidence base' of her misdemeanours leaving her to her own devices will provide the greatest haul. ie she is her own worst enemy but hasn't the insight to realise it.