Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

petrichor said:
Well, here's a twitter account: https://twitter.com/estherpouts?lang=en pretending to be esther crawley, saying things that portray her in a bad light. That's what I'd call harassment. And that's just on the first page of googling her name. To anyone that even googles her name, it will look like she's been harassed.
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That's what you'd call harassment?

A parody twitter account that says in the account details "PARODY ACCOUNT" and has 36 followers?

I always thought that twitter account was a bad idea, and I never understood how anyone could think it was likely to do any good, but if that's harassment then what is Donald Trump facing on-line? Do you think that all of the people with parody Trump accounts are engaging in harassment?

Do you think that you claiming it was a "fake account", when actually it clearly states it is a parody account, is on-line harassment? How loose are you willing to be with this.

petrichor said:
And public figures like researchers aren't used to the kind of attention that other public figures get, so they are much more likely to interpret it as harassment.
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They can interpret it as harassment if they want, but that doesn't mean we should say it's harassment.
 
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petrichor said:
Well, here's a twitter account: https://twitter.com/estherpouts?lang=en pretending to be esther crawley, saying things that portray her in a bad light.
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That's a parody account, not harassment. It happens dozens of times every weekend on Saturday Night Live alone, and I'm pretty sure it's not considered illegal or even inappropriate - at worst such parodies might be described as tasteless :rolleyes:

petrichor said:
That's what I'd call harassment.
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Could you cite to something which supports your belief that a parody is harassment?
 
Well, here's a twitter account: https://twitter.com/estherpouts?lang=en pretending to be esther crawley, saying things that portray her in a bad light. That's what I'd call harassment.
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Seriously, is that the best you can do?

How do you know it is a genuine patient or BPS critic behind that account? You seem very ready to uncritically accept that it is.

If those claiming harassment and threats are serious then they should be asking for a full public inquiry into the matter, with proper investigatory and subpoena powers. As I have said before more than once, I do not approve of harassment or threats, apart from any other reason they only hurt our cause.

If there is a genuine problem then the patient community needs to own it and deal with it. If there isn't, then those in power knowingly making false accusations to prevent being held to account need to be exposed and shamed for their cowardice.
 
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petrichor said:
If you aren't willing to recognize that is a form of harassment, then, I've got to say, you aren't portraying ME/CFS sufferers in a very good light.
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If you're not willing to recognise that accusing someone running a clearly labelled parody twitter account of running a fake acount is a form of harassment, then I have absolutely no choice but to say that you aren't portraying petrichor in a very good light.

What else could I do?
 
I think the point here is that everyone gets "harassed" on the interwebs. Everyone is subject to every possible flavor of response.

Whether you interpret something as harassing or not, if you post in a public place, or have a public life in any way, you are going to get pushback. Some of it ugly and stupid. It's a part of life now, it just is.

I've had a number of good laughs with a friend who does worldwide public lectures and has his snail mail sent to an offsite address.
When he returns from tours he collects his big stack of mail, and we read through some crazy shit. For years one lady kept asking him to marry her and including increasingly bizarre objects with her letters.

I have to laugh when EC thinks she's being "cyberstalked." I've been stalked IRL, so I find her trip somewhere between sad and irritating. I wonder what rock she's been living under, or thinks the general public lives under, that she hasn't noticed that the
atmosphere out there on the internet can be brutal if you show up.

Most people barely think twice about it and just get on with life. She's trying to make herself into a martyr for something we have all had to deal with, probably to greater degrees.

I don't think she realises how foolish this makes her look to the rest of us who just deal the f*^& with it.
 
Yea, I'm starting to get angry now too. The work this woman does harms children and ruins families. Its dangerous and misguided.

Everything else pales into trivialities compared to that.

If you want to have a discussion about the best strategies for advocacy, @petrichor, then we have that. I think we'd probably agree on a lot of things, including the (dubious) value of parody twitter accounts. But we must stop using patients' angry reactions to her awful work as an excuse to turn the narrative around and make her the victim.
 
Woolie said:
Yea, I'm starting to get angry now too. The work this woman does harms children and ruins families. Its dangerous and misguided.

Everything else pales into trivialities compared to that.

If you want to have a discussion about the best strategies for advocacy, @petrichor, then we have that. I think we'd probably agree on a lot of things, including the (dubious) value of parody twitter accounts. But we must stop using patients' angry reactions to her awful work as an excuse to turn the narrative around and make her the victim.
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I'm absolutely not making her the victim. I'm just making the very mild point that we shouldn't deny that she has experienced at least some degree (even if very small) of harassment. It simply isn't productive, and it makes us look bad.

Jennifer Brea, for example, made a very good series of tweets recently relating to Esther Crawley, which I think were all the more effective because she doesn't deny that she may have experienced some degree of harassment.
 
I would find it most surprising if she hadn’t been harassed, but to me there are two issues to be drawn from her reaction - firstly, the fact that she doesn’t ever seem to engage in any critical self-reflection as to why this is the case, when other researchers aren’t....(and she can’t claim it’s because it’s ME/CFS, because not every researcher in the field gets the ‘harassment’ she does), and secondly, that she is very happily tarring us all with this brush for her own ends.

Neither one of those two things paints her in a good light. And I think those are strong points for anyone new to the field to realize.
 
I suggest we do not discuss the issue of harrassment any more here. By doing so, we are allowing it to sidetrack the more important issue - the damaging research and political agenda being described in this talk. And its potential harms to children and families. By continuing to discuss the harrassment issue, we are actually feeding that dangerous agenda.

Could someone knowledgeable describe to newcomers some of the real harms that Dr. Crawley's work has done to patients and their families?
 
petrichor said:
Finding it's five times more effective, even just in the short term, is still a fairly bizarre finding.
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If you have not already looked at it, then this analysis may provide a hint for a clue

http://www.meassociation.org.uk/201...or-cbt-in-adolescent-mecfs-04-september-2017/

Teenagers are very good at telling people what they think they want to hear to make them go away - in a counselling session , if not engaged with the process, many do exactly this .

I have only done a basic " statistics for science" undergraduate module and have methodological concerns.
Academic staff i know cannot understand why such trials go ahead with such obvious flaws.
 
The problem with highlighting harm is that parents are unlikely to complain until their child is out of the paediatric system; such is the fear.

EC does not believe that severe ME in children exists. She also did not believe POTS to be a potential comorbid condition and no doubt would have been uncomfortable with Dr Rowe's talk at CMRC this year.

The " somatisation" of the illness impacts complaints and the legal process.
Thread from PR - this is current and very real
http://forums.phoenixrising.me/inde...tient-treatment-for-failing-to-recover.56366/

This is the reality for many.
 
Woolie said:
By doing so, we are allowing it to sidetrack the more important issue - the damaging research and political agenda being described in this talk.
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Yeah, thats the point, its common use these days to use cop out or distraction talking points to avoid the real issue or make it less important. Politics maneuvers. As @Valentijn said this whole narrative is meant to discredit us and make her look like the hero. We can either get wrapped up in it which lets her divide and conquer or we can move on to the more important issues.


@petrichor I can't control or claim responsibility for what others do or don't do, i can speak for myself when i say i don't harass her or others, i am interested in science and fighting the lies that harm us and getting to a real treatment. Feeling sorry for her so she can continue attacking us serves no purpose and the minutiae of her claims has little bearing on our real goal of finding treatments for this disease
 
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One has to accept the possibility that Crawley has been harassed. There is no way of knowing. It is pointless trying to discuss the matter in such terms.

The question that matters is, has she made the case that she has been harassed in such a way as would persuade a reasonable audience? Let us take the "balance of probability" as the standard of proof.

She had the opportunity to provide her evidence to the Sunday Times journalist. He concluded with words to the effect (from memory):
Does this amount to harassment? Professor Crawley thinks it does.

This was hardly an endorsement.

The image created by the newspaper to support its article was an assembly of phrases clearly edited from different sentences, probably from different communications, presented in a lurid manner unworthy of a serious publication. (One cannot blame the journalist for that presentation.)

When given a platform, Crawley has raised the question of harassment, but merely adduced in evidence that image and presented it in a way which might be considered to have an intention to mislead with regard to its provenance.

If she now provides evidence of harassment we should take her claims seriously. Until she does we should disregard the claims.
 
chrisb said:
The question that matters is, has she made the case that she has been harassed in such a way as would persuade a reasonable audience? Let us take the "balance of probability" as the standard of proof.
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I don't think that is the important question. She may have been harassed by some individuals or may not without evidence and prosecutions we will never know.

But there are two things that the harassment stories seem intended to lead to
1) A protection of the research/ethics from people looking too closely. But that would be unacceptable. Bad research is bad research not getting ethics approval is just bad as is playing the system and switching trials from feasibility studies to full scale trials. That needs to be examined in detail. It shouldn't be up to patients but it should be done by Bristol University and the REC and they are failing in their duty to ensure good governance.
2) She paints the whole community in a bad light due to possible actions of a few individuals. That is not acceptable it is one way hate speech is formed (to take examples of bad things an individual has done and paint it as if a whole minority is doing that or supporting that).

The basic subtext is one of don't look at the work any further and that it is not right to examine research in detail. This is really dangerous. Research especially when the results affect peoples lives should be analysed and understood so that sensible decisions can be made.
 
petrichor said:
I'm absolutely not making her the victim. I'm just making the very mild point that we shouldn't deny that she has experienced at least some degree (even if very small) of harassment. It simply isn't productive, and it makes us look bad.

Jennifer Brea, for example, made a very good series of tweets recently relating to Esther Crawley, which I think were all the more effective because she doesn't deny that she may have experienced some degree of harassment.
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Important people read that full sequence of tweets for the correct context.
 
@Woolie you've missed off half the thread, including some very telling tweets. I'll have a go at posting it.



Edit - I can't work out how to show the whole Twitter thread, but if you click on the blue bird logo, top right of the tweet it takes you to the thread on Twitter.
 
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