Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

The system is a self protecting, "if you tell on me ill tell on you".

Basically as peer review is broken, keeping your job relies on pumping out papers to bring in money for your institution and conflict of interest run ripe, the whole thing is a bloody farce.

 

Why the hell didn't she say this before then when she gave her comments for the SMC? And why should Crawley not get more heavily criticized for this on the basis she is doing her best? Vulnerable, sick people, hand over lots of money they don't have on the back of this sort of shoddy research for them, or worse, for their own children to have this "treatment" and Esther Crawley is not some kind of inexperienced trainee she's a professor at a reputable university who has worked for years in the field, clearly she ought to know better, or display far far more caution. I see no justification for making allowances for it because in Bishop's opinion Crawley is trying her best - what a load of cobblers, this is nothing more than an excuse not to be more critical of someone she's already shown support for in my opinion.

 

Thanks to everyone who made the article happen. (Whether seen or unseen)

I liked the way the piece is written. Lots of interesting information but edited down to manageable chunks.

 

I should also add my thanks to whoever chose the pictures.

It's a nice touch to avoid the usual ones. I only really notice the pictures when they are the stereotypically bad ones.

It's a small thing, but a little thought goes a long way.

 

Yes if this is her level of trying her best as an experienced professor her PHD thesis as a student must be fascinating.

 

Those who "agreed it was a mental illness" no doubt did have a mental illness, with chronic fatigue as a complication of it. They did not have ME, even though convinced they did; and of course convenient for some to let others believe it was ME that LP fixed.

[my bold]

Since when has "chronic fatigue" been a disease? Chronic fatigue syndrome yes, but "chronic fatigue" ... symptom of many things.

 

Jen Brea with a great thread on twitter directed towards prof. Crawley
https://twitter.com/user/status/947170518825758720

 

I'm not entirely convinced that anyone recovers from using the LP from anything. There is another complication. A family member did a similar program to the Lightning and part of the brain washing was to convince the PWME that they really were well again. She never went back to her old job after completing the course or any sort of full time job. Their mother says that they are just as sick as they were before. Leading a restricted life and pretending it is something they have chosen to do.

This particular PWME had remissions as part of her disease normally and then a couple of children after the program. She improved with the pregnancies as well. If you talk to her it was a full recovery though using the same "stop" messages and her life now "normal".

It is a good point that we don't know what disease these people claiming recovery actually had. It's also fair for us to question if they have actually recovered from anything or just programmed to say that they are.

 

Bl**dy hell ... does Jen Brea know how to get a point across! . (You have to read all her tweets).

 

Posting the whole thread mentioned by @Kalliope, as it's that good.

I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researcher.
26 tweets an hour ago

Embed Jennifer Brea @jenbrea Follow Read on Twitter

And because I think I still entertain a fantasy of one day sitting down to lunch with her and saying, "woman, if you mean as well as you say you do, what on earth are you doing?"

I'm also uncomfortable with personalizing scientific disagreement. I think good science does eventually win out (even if it takes decades) and that disagreement and radically different POVs are important, constructive, and worth defending.

But here's the thing – she personalizes her work and the criticisms of it in the media *every single chance she gets.* It's astonishing.

Rather than defend her work on the merits, or critique her critics on theirs, she constantly seeks to delegitimize them by portraying herself as a victim of harassment, a martyr on the altar of scientific truth.

And she may genuinely feel harassed and emotionally hurt by the emails and tweets she receives. She may feel bullied. She may deeply believe in the truth of her work and potential to help.

She may feel besieged. And the psychology of feeling besieged is to triple down on your belief that you are in the right.

And so the way she has responded to vociferous criticism is on the one hand, only human. And yet I find it completely shocking behavior in a scientist, and even more so in a healer.

Here's the thing, Esther. I too have been the "victim" of "harassment." I've been called all manner of horrible things, received the most appalling emails, and have been the victim of textbook cyberstalking.

I am pretty sure I have received as bad or worse. And you know what? ‍♀️
This is the internet. Humanity in its full diversity and spectrum of personality. And some of the people I've encountered are truly awful. So what?

I get on with it. I get on with the work because the task of reforming culture, medicine and science so that we can return millions to lives worth living matters more than anything anyone can do to try to hurt me.

The absolute worst thing you can do in response to ill treatment is to wrap it around yourself like a mantle. Or use it as a cudgel against legitimate critics in the media and on stage to score points with people who don't know better.
And that is what I see you doing every chance you get.

I find this even more disturbing than unblinded trials with subjective outcome measures or your complete disinterest in the methods and findings of the biomedical research of the last decade.

That at least one could confine to the realm of legitimate scientific difference. I'd say you're using an outmoded and weak epistemology. But that's at least a principled argument to have.

What I cannot abide is the way your response to legitimate criticism *every single time* is to throw a deeply disenfranchised group of disabled people under the bus. It's the ugliest form of punching down I've ever seen.
You have no problem getting quoted in almost every piece about ME (in which you never fail to talk about "death threats" and harassment).

And yet you claim you are being silenced.
You say you are being cyber bullied (in other words, we raise our voices too loudly) AND you claim to be the voice of the "voiceless."

Every time you are given a platform, you never fail to use it as an opportunity to add to our stigma, to add to our pain, to add to the public perception that there is something different about us as a class of people.

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.

As a curious person, ask yourself, without judgment, why are tens of thousands of people so angry at me? Is there something I can learn from that anger?

Or at least, engage with your critics in a way that is intellectually curious and rigorous. Hint: the answer to "why unblinded trials and subjective outcome measures" is never "death threats."

Just as the answer to "we need to provide a voice to the voiceless" is never "because, death threats." Replace that mantra with "nothing about us, without us" and you are halfway there.​

 

Nicely done @Luther Blissett.

 

Seems like Jen is coming around to the idea of criticising Crawley.

 

I wouldn't place too much credence into the claim that Crawley has encountered any real cyber stalking or "death threats" even from a tiny minority.

Shes just a born fucking liar.

 

Too true!

 

Why do we have to rely on US researchers to challenge Esther Crawley? I know they do it very well but have we none of the home grown variety to do it? Or have the SMC and bio psychosocial school got all the power wrapped up?

EDIT: the last question was a rhetorical one of course.

 

Wow! Shame our own media are not up to the task

 

It sounds like classic narcissism to me - it's more about how she feels and the voices of the patient community are unimportant.

 

Given the insights into her childhood she shared on her TEDx talk, i think there is a whole other level informing her actions.

 

I think EC may have finally dug her spade into the hole one time too many. Jen Brea has a wonderful talent for presenting her arguments very calmly, civilly, and cogently. I suspect Jen might have left EC alone if she had stopped digging, but now EC has no place left to go except talk science to scientists ... equals no place left to go. I think EC needs to take a sabbatical and do some serious thinking.