Crawley: How to deal with anti-science BRS2017

[Manganus]

Hi Dr Edwards and everyone here

I am this Sridharan fellow! I came across this thread as a result of replies I have been getting on twitter and hence, I thought I will clear some things up.

First of all, I am not employed by BRS to tweet nor do I know Dr Crawley. I have never heard of her before this morning. And certainly, I am not employed by her to tweet her session. You may have seen that I have tweeted other sessions as well from the conference and I have done this for many other meetings previously.

Dear dr Sridharan,
let's start there!

No, most of us have not seen your other tweets, and that's how Twitter works.
Another reason why most of us have not seen your other tweets is that many of us have to be careful where to waste the little mental capacity and energy we've left. Too much of that capacity has been destroyed due to individuals like the inspiring colleague whose presentation you reported from.

So? You having tweeted other sessions as well?

Then one could have expected more familiarity with social media in general, from your side, and with Twitter in particular.

All of us make mistakes on social media. Sometimes we learn from them.
As I see it, your mistakes had very little with medicine or science to do, but all with social media.
Physicians, scientists, and even quacks are in their full right to make presentations at conferences, regardless of how controversial they are.
And it can not be expected from tweeters, that they make meticulous checking of lecturers in advance. One may end up endorsing a quack. That's a risk one has to take.

None of the tweets I posted carried any of my personal opinion - it was just a statement of what was happening there just like I have done for other sessions. To clarify, I am not a paediatrician and certainly do not know about CFS/ME as much as you people do. Hence, I refrain from commenting on which research is valid regarding ME.

By replying to me and abusing me, nothing is going to happen. I don't know Dr Crawley and she is not in my network. By doing this, you are shooting the proverbial 'messenger'. None of my tweets endorsed her studies or her views. I am sorry I had to block some of you guys only because they were either abusing me or trying to abuse Dr Crawley through my tweets.

I hope you by now are wiser

1. not to confuse criticism with abuse,
2. realizing that tweets are public,
3. considering that parts of the public communicates in a less-scientifical, more working-class, way and
4. maybe most important: not to block critics

 

[Barry53]

Rather sad that so many doctors can’t be bothered to think.

I personally think it is something deeper than that, and that many people, doctors or otherwise, can be duped into not realising there is something that needs thinking about. It's almost a grooming process. It goes on all the time, in all walks of life.

 

[Barry53]

Edit to add: it seems like @Nephrofan removed his post. Unless told otherwise I will keep my post up because I thought it was a very sensitive post and I am very thankful he came forward and reached out over here.

No, @Nephrofan 's post is still here http://forums.phoenixrising.me/inde...anti-science-brs2017.51066/page-5#post-842834. And I agree with you Kati: I am very pleased Nephrofan has engaged with us here, and with the content of his post.

 

[Kati]

No, @Nephrofan 's post is still here http://forums.phoenixrising.me/inde...anti-science-brs2017.51066/page-5#post-842834. And I agree with you Kati: I am very pleased Nephrofan has engaged with us here, and with the content of his post.

It was likely removed by the mods for approval. They reinstated it earlier today.

 

[Barry53]

why apologise to this chap - he blocked me for simply retweeting his tweets and now he has the audacity to claim that those be blocked were abusing him or Crawley through his tweets

he needs to now apolgise to me for this statement - pass that on to him from an ME researcher

he quickly took the tweets down most likely because he saw patients and others were spreading truth ie what Crawley was writing

this chap has swallowed the Crawley teaching lesson hook line and sinker - saying he was abused, please him to give examples of the abuse he sufferered yesterday ?

I for one, would very much like to see some examples of any alleged abuse from KG. I really want to understand what fits the definition of such abuse.

 

[Kati]

maybe most important: not to block critics

Hi @Manganus please consider that live tweeting an event where you are also listening to the content of the presentation is not an easy feat, even for those who are healthy.

The way I see it, our friend the nephrologist wanted to share the event with twitter but also had to deal with very unhappy folks- us the patients- and we now know the context for why he did it.

 

[Keith Geraghty]

the first day of medical school Dr Crawley and Dr Nephrofan (Shrin.) would have been told to "listen to your patient and believe them" - once you stop listening or stop believing theres a problem; the psych lobby have had to devise a narrative to explain away the many many patients who reject the CBT-model of ME/CFS. The narrative they came up with is "these are militants" - hence giving them the rationale for ignoring patients. Whats worse is Crawley feels a need to promote this anti-patient narrative and Dr Nep seems to have bought into it. Although he is back-tracking now - thankfully.

 

[Barry53]

Crawley's talk was actually called "Should I just toughen up? How to deal with anti-science.".

Perhaps EC should join us here for some advice, being as so many have been dealing with the same issue for so many years.

 

[Kati]

Perhaps EC should join us here for some advice, being as so many have been dealing with the same issue for so many years.

I would not be surprised if she actually read everything up to now.
Hello Esther, mind the [science] gap! Oh Simon... you too?

 

[Barry53]

I'm in two minds (don't tell the psychs ) about whether to give this chap (I thought he was "this fellow" - oh well) a break or not. So I'm just rambling without having made my mind up yet.

On the one hand the only correct response from any scientist sitting in the audience listening to Crawley's offensive crap would be to be appalled. Never mind the ME stuff, but just as a scientist, at least one person should have thought "hang on a minute, is she really telling us to hide our data and to treat any requests to share it or any questioning of our findings as vexatious - what about open data and how science is supposed to work?" And then perhaps to stand up and say "excuse me, but who are you and what the f*** are you talking about?" before everyone walking out (sorry, dreaming there).

Even if he chooses to look the other way because he doesn't have the time and inclination to give a toss about ME sufferers, he has a duty to his own kidney patients to find out what's going on, why EC was invited to speak, what it all means for his own field. Who are the BPS brigade, how have they treated other patient populations, and why are they now hanging around kidney patients? Will they be telling the NHS, the insurance companies and the government what they want to hear - ie that there's money to be saved here and no-one has to feel guilty about it because it's going to be the patients' fault?

So even if @sayintmyway has unwittingly found himself at a presentation from someone he's never heard of and got caught in the crossfire of a battle that isn't his, if he chooses to look the other way and be part of the deafening silence that allows Esther to @sayitherway then he's letting his patients down.

On the other hand ...

Oh never mind that, I think I've made my mind up after all. Time for him to man up. Which I thought was a prerequisite for going on twitter anyway - abuse indeed - he has no idea what abuse is. Let's hope his patients aren't about to find out because he didn't slam the door in Esther's face when he had the chance and was warned.

Sometimes the truth can take a while to sink in - it's not always about intelligence, but more about how convincing the spell-caster was at the time. This is something I do know. The best of good decent people can get fooled in the short term at least. Let's all give this chap a chance to catch his breath.

 

[2kidswithME]

Can somebody please give me a slap if the following sounds a bit far-fetched? Thanks.

.....
The patient is officially “cured” (PACE / BPS definition – meaning we think they should be able to stand up and walk around now that they’ve had their operation / dialysis) – any lingering fatigue is psychological, due to false illness beliefs following an assault on the body (we’ve seen it all before– with ME patients it was a virus). Graded Exercise Therapy and CBT is what they need. I’m an expert.

In a past life in a country far away, I worked one summer on the till in a pharmacy in a medical uilding with all sorts of doctors offices, including a dialysis clinic. Those patients were regulars in our pharmacy as most were on multiple prescriptions, and it became apparent to me very quickly that these people were in no way 'cured' by dialysis, it only kept them alive, some would get transplants, the rest struggled along. We had a couple chairs available and they would collapse in them to rest while waiting for the prescription to be filled. I'm sure treatments have improved over the years, but based on those few months I decided that having working kidneys was one of life's great blessings. I'd hate to think that CBT and GET might be being pushed on this group as a 'cure' to the toxic effects of non-functioning kidneys.

 

[Barry53]

Hi

I have gathered many links and references here regarding ME research that have been pointed out to me. I do intend to take time to look into these links and form my own opinion regarding this. Many thanks.

If you seek to find the truth, the whole truth, and nothing but the truth @Nephrofan, about ME and research into it, and encourage others to do the same, then not only will the patient community benefit, but so also will the medical profession itself.

 

[deboruth]

As my brain slowly digests all of this another thought occurs.

A real danger for EC are those in the scientific community who come to her aid without looking further at the 'debate' between her and ME sufferers.
Should they find out at some point that her version of this story is not quite validated -- those whose careers are not tied to PACE may choose to dissociate from her and will possibly be more vocal and more of a problem in the end then most of us pesky PwME.

Nobody likes being duped.

Sorry to say this, but the UK ME charities seem to be unable to do any public relations to get out the truth about the situation, while the Science Media Center has done a high-powered bang-up job of getting out falsehoods along the lines EC was promoting to the nephrologists -- ideas developed by SMC and her elders in the biopsychosocial chumocracy, such as W&W . As things are going, no one in the UK is ever going to find out that EC is on the wrong side of the truth, as are the famous and prestigious colleagues W&W. No one in the UK is ever going to ask publicly why the Nobel prize winners and internationally famous virus hunters and so on are all on the other side, why they are all arguing against the bio-psycho-social claptrap that predominates in the UK. The truth: no PR, no decent media, no public knowledge. The bio-psycho-socials are winning every season in the UK because the True Science Side has yet to field a team in Public Relations in the UK. The excellent material produced by True Science -- by Kindlon, Geraghty and so on -- now needs to be hand fed to the press or it will never be known in the UK. No one in media remembers the likes of Behan and Ramsay and Richardson -- UK doctors who knew and studied ME for the disease that it is. The Science Media Center has been force-feeding the press like Perigord geese for the past decade; there's a lot to make up for.

 

[Snowdrop]

Sorry to say this, but the UK ME charities seem to be unable to do any public relations to get out the truth about the situation, while the Science Media Center has done a high-powered bang-up job of getting out falsehoods along the lines EC was promoting to the nephrologists -- ideas developed by SMC and her elders in the biopsychosocial chumocracy, such as W&W . As things are going, no one in the UK is ever going to find out that EC is on the wrong side of the truth, as are the famous and prestigious colleagues W&W. No one in the UK is ever going to ask publicly why the Nobel prize winners and internationally famous virus hunters and so on are all on the other side, why they are all arguing against the bio-psycho-social claptrap that predominates in the UK. The truth: no PR, no decent media, no public knowledge. The bio-psycho-socials are winning every season in the UK because the True Science Side has yet to field a team in Public Relations in the UK. The excellent material produced by True Science -- by Kindlon, Geraghty and so on -- now needs to be hand fed to the press or it will never be known in the UK. No one in media remembers the likes of Behan and Ramsay and Richardson -- UK doctors who knew and studied ME for the disease that it is. The Science Media Center has been force-feeding the press like Perigord geese for the past decade; there's a lot to make up for.

Bleak but I hear you. It has been that way up to this moment.
I think there is some small reason to be optimistic for the future.
We'll see.

I'm hoping that Jen Brea's film Unrest manages to get to a UK film festival.
London would be a good start.

 

[Woolie]

am unaware of work of EC and existing evidence discrediting her work. And also, there was no mention in the presentation that the patient groups were the ones being pointed as anti-science.

Thanks @Nephrofan, for the apology.

There's a good take-home message here for all conference tweeters. If you are tweeting the conference, and sharing the slides, don't try to comment or evaluate at the same time.

I was really interested in @Nephrofan's comment here - that Crawley omitted that it was patients with MECFS and their parents that were doing the "abuse and harrassment", and she fondly calls it. That's a clever manoeuvre, which spares her from looking anti-patient.

 

[PhoenixDown]

Crawley showed no evidence in her dismissive comments on the recovery re-analysis that she understood a fecking word of it.

Which doesn't mean she isn't also, um, less than pure in her motives.

Hanlon's Razor is once again relevant - https://en.wikipedia.org/wiki/Hanlon's_razor

Hanlon's razor is an aphorism expressed in various ways including "Never attribute to malice that which is adequately explained by stupidity"

 

[Esther12]

I was really interested in @Nephrofan's comment here - that Crawley omitted that it was patients with MECFS and their parents that were doing the "abuse and harrassment", and she fondly calls it. That's a clever manoeuvre, which spares her from looking anti-patient.

To me it looked as if she was indicating it was, at least partly, patients, but maybe no 'patient groups'? I don't know. Would love a video of the talk! I wonder what possible reason she could give for people being opposed to her work, if she was implying she does good quality work?

There was no mention of which group of people were against her and certainly, I was not left with an impression at the end of the talk that patient groups were themselves not happy with her work.

 

[Sean]

This so deceptively simple question desperately needs to be answered. Last couple of days I have benefited from the skills of my doctor, various nurses and hospital consultant, as is part and parcel of getting slightly long in the tooth, and my admiration and respect for these people is boundless; they really are a fantastic body of highly dedicated, compassionate professionals, working under immense pressures sometimes.

If you take out the ME/CFS related issues, I have no complaints about the way the medical profession has treated me.

I am a huge fan of genuinely science-based medicine. It is one of the great achievements of the human race and has saved countless lives and relieved untold suffering.

I just wish there was more of it.

 

[Sean]

Although he is back-tracking now - thankfully.

Credit where it is due. He has engaged with us and been prepared to listen.

That is all we can ask of those unfamiliar with the field and controversy, and I am happy to leave it at that.

 

[Countrygirl]

Perhaps EC should join us here for some advice, being as so many have been dealing with the same issue for so many years.

Perhaps Prof Jonathan would be prepared to invite her on here so we can have an open discussion where she and we can present our viewpoints?

If she is confident of her interpretation of ME and the tone of both sides remains respectful, what reason could she have for refusing to engage with us?

Maybe it could take the form of a debate between one patient rep. (Tom/Keith?) who could present our views and Prof Crawley?

Frank and open communication is always key to solving disputes, after all.

(Yes, I know and pigs might fly....................but the offer could be made and if she genuinely cares about patients she should be prepared to engage. )