• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

Demepivo

Demepivo

Dolores Abernathy
Messages
411
Esther12 said:
He's sharing some okay stuff too. I didn't think his talk at the CMRC was great, but it's worth being cautious of those who may not have had time to look into all the details (at least when they're not getting paid for claiming 'expertise').
Click to expand...

Phil probably meant well with his endeavours with the MEGA PAG. He may have felt important & listened to.

Problem is he & the others were being used to gain credibility.

I think he's had a rude awakening with regard to the ways & whiles of Ms Crawley. Suspect he will act differently from now on.
 
Last edited:
S

Sean

Senior Member
Messages
7,378
Londinium said:
My theory is this: Prof Crawley and team genuinely never expected a positive result. Indeed, they went ahead with the trial expecting a negative result. They would then be able to trumpet this result as proof of 'we're good scientists really, see, and all those nasty ME patients who accuse us of manipulating trials are wrong.'
Click to expand...
Rookie error. Never set up an inquiry without knowing the outcome.
 
Esther12

Esther12

Senior Member
Messages
13,774
Demepivo said:
Phil probably meant well with his endeavours with the MEGA PAG. He may have felt important & listened to.

Problem is he & the others were being used to gain credibility.

I think he's had a rude awakening with regard to the ways & whiles of Ms Crawley. Suspect he will act differently from now on.
Click to expand...

I missed out a couple of crucial words in my post, so it may have been sounding as if I was saying the opposite of my intent! - edited now.

I agree that some patients can seem to over-value being listened to by authority figures, even when they're largely being used in ways thaty go against their own interests.
 
wdb

wdb

Senior Member
Messages
1,392
Location
London
PhoenixDown said:
This was not a blinded trial, patients knew what they were getting.

The quote is from Prof Alastair Sutcliffe.
Click to expand...
Didn't they try and pull this single blind misrepresentation on the PACE trial too on the grounds that the statistician was blind to the treatment groups even though neither the participants nor the therapists were in any way blinded.
 
Y

Yogi

Senior Member
Messages
1,132
He is a real dimwit. Completely out of his depth.

He has some crap 2.1 Philosophy degree. Impossible for him to understand science. Can't believe the low standards for newspapers nowadays

He has only been at Telegraph for a year. Before at some local crappy rags.

https://uk.linkedin.com/in/henry-bodkin-064b991a

Probably waste of our time and energy on this guy. We have David Tuller on our side.
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
Yogi said:
He is a real dimwit. Completely out of his depth.

He has some crap 2.1 Philosophy degree. Impossible for him to understand science. Can't believe the low standards for newspapers nowadays

He has only been at Telegraph for a year. Before at some local crappy rags.

https://uk.linkedin.com/in/henry-bodkin-064b991a

Probably waste of our time and energy on this guy. We have David Tuller on our side.
Click to expand...

He is totally out of his depth and behaving like a child. He also shows no curiosity about the subject, and doesn't understand either the importance of diagnostic criteria used, or what the CCC is. He's babbling about factions and conspiracy theories, but it seems to be a deflection tactic to avoid answering questions and betraying his deep-seated ignorance. He was warned about us - I'll bet he was. But he didn't have the nous to question why, or take a more objective position, or even check out the illness in question. No wonder an organisation as corrupted as the SMC is able to dodge the real science on ME.
 
Orla

Orla

Senior Member
Messages
708
Location
Ireland
slysaint said:
I'm trying to find the quote from Crawley (in one of these SMILE articles) where she says in response to why they did the trial on children; something along the line
"There have been some claims that it (LP) is dangerous, so we thought we'd better find out'

anyone know where it is?
thanks
Click to expand...

I think this is from the guardian article
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Yogi said:
He is a real dimwit. Completely out of his depth.

He has some crap 2.1 Philosophy degree. Impossible for him to understand science. Can't believe the low standards for newspapers nowadays

He has only been at Telegraph for a year. Before at some local crappy rags.

https://uk.linkedin.com/in/henry-bodkin-064b991a

Probably waste of our time and energy on this guy. We have David Tuller on our side.
Click to expand...

I'd just like to say:

While many philosophy degrees may be rubbish sadly especially in the UK where the school of analytic philosophy reigns supreme--(think words can mean whatever you want) Our civilisation would not be what it is without the likes of Aristotle and many others. I only bring this up because philosophy as it is often now practiced is bullocks (and it annoys me).

Also, good universities should have decent science ethics courses which would be helpful in our situation. Sadly I expect they have been taken over by analytics where anything goes.

There are deep problems inherent in journalism that need to be addressed. In planning to advocate for us with ME I'd go for the heart and aim for the SMC to see what can be done to discredit their use of non science in media reporting. Exposing the disingenuous nature of SMC around ME and other issues with them IMO would be our energy best spent.
 
snowathlete

snowathlete

Senior Member
Messages
5,374
Location
UK
Sidereal said:
BMJ piece is on sci hub now.
Click to expand...

She gave credit to Parker for agreeing to participate in a trial that could have ruined his business, had the outcome been different.
Click to expand...

I expect he is just a bit brighter than Esther and understood that with a trial methodology like that suggested for the trial the outcome would always be likely to result in a positive-looking outcome. No control group, LP compared to SMC which is known to be ineffective at best or harmful at worst. Weak diagnosis definition used which is likely to select kids with depression and anxiety rather than true CFS patients. Add to that the subjective measures and this became a no-brainer as LP basically manipulates what the children should be thinking and saying about their symptoms.
 
snowathlete

snowathlete

Senior Member
Messages
5,374
Location
UK
Yogi said:
He is a real dimwit. Completely out of his depth.

He has some crap 2.1 Philosophy degree. Impossible for him to understand science. Can't believe the low standards for newspapers nowadays

He has only been at Telegraph for a year. Before at some local crappy rags.

https://uk.linkedin.com/in/henry-bodkin-064b991a

Probably waste of our time and energy on this guy. We have David Tuller on our side.
Click to expand...

My impression is that he is young and inexperienced, basically very easily manipulated by people he looks up to which is probably everyone he speaks to in his roll at work. I feel sorry for him really, because the people who have told him what to think have managed to do that really easily and although he probably thinks they like him, behind their smiles they are actually laughing at him because he's been so easy to manipulate and they know he is totally unaware it's even happened.
 
You must log in or register to reply here.