Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

[Robert 1973]

http://www.sciencemediacentre.org/testing-a-controversial-treatment-for-cfsme-in-children/

is Prof Holgate of the CMRC actually travelling from southampton to London to speak about the Crawley Trial and so nice that the independent trial steering committee is led by PACE trial author Prof. McCrone who did analysis of the cost effectiveness of PACE. - very independent indeed

I see that Prof Holgate's name has just been removed from the list of speakers. Would be interesting to know why.

 

[Ysabelle-S]

I did not expect these BPS people to back down in the face of real science - they have spent years of their careers on this and won't want to be seen as failures. If it was me, I'd be mortified that this is what my career had come to - patients made worse, the patient community in uproar, foreign and even some domestic scientists sneering at me, my study shown up for what it is, and developments in international science snapping at my heels. I'd probably want to make a dignified exit, but I would have done it a long time ago, especially if I had any concern for patient well being. Why anyone would want to inherit the mantle from Wessely and White beats me. This is a scandal and it's just growing. It's like that old game pass-the-parcel. Who wants to be holding that parcel when the music finally stops? They are going to go down in medical history for all the wrong reasons.

As for MEGA, it's toxic. Especially if this study on children is what passes for high-quality research.

 

[chipmunk1]

I see that Prof Holgate's name has just been removed from the list of speakers. Would be interesting to know why.

Everyone knows that the Sciencemediacentre is biased and an industry funded lobbying organisation.

 

[Wildcat]

@AndyPR wrote "Comments are possible on the BBC article, did we know this?"

http://www.bbc.co.uk/news/health-37822068

We need more Comments about recent research .... uninformed idiots are out in force
.

 

[Countrygirl]

Prof. Paul McCrone, Chair of the independent steering group for the new trial and Professor of Health Economics & Deputy Director, King’s Health Economics at King’s College London’s Institute of Psychiatry, Psychology & Neuroscience

!

 

[Stewart]

Not sure if this has already been mentioned, but Crawley was also on the Victoria Derbyshire show this morning along with representatives of AYME and the Tymes Trust. If you're able to use the BBC iPlayer you can find it here (starts at 1:08:20 and lasts for about 12 minutes)

http://www.bbc.co.uk/iplayer/episode/b0817fqg/victoria-derbyshire-01112016

Be warned though - you might end up putting your fist through your computer monitor. The Chief Executive of AYME repeats the claim that PACE proved that CBT and GET help 60% of patients, before arguing that it's better to give children with ME some treatment - any treatment at all - even if we don't understand the illness yet or how to effectively treat it. And then at the end of the segment she says - completely oblivious to the irony in her words - that she hopes the programme has improved people's understanding...

Some interesting quotes from Crawley though, showing how the BPS school is adapting its' explanation to take account of the growing biological understanding of the condition : "I think chronic fatigue syndrome is very clearly a biological illness...triggered by a virus or a bacterial infection... we think chronic fatigue syndrome is several different illnesses with different underlying biologies and different mechanisms...".

I see that Prof Holgate's name has just been removed from the list of speakers. Would be interesting to know why.

I would guess that either Holgate has asked for it to be removed, or someone at the SMC has belatedly realised that highlighting Holgate's involvement was a bad idea.

 

[Gijs]

If my child had ME and these psychoquackers would abuse her, i would not know what i would do to them. They are no scientists they are very very very evil people. I saw the selection for patiënts is fatique for 3 months.... We all know that most of them will be better whitin 14 months natural course.

 

[Ysabelle-S]

I think it's more than a media blitz to regain lost ground. I think there's an element of panic. They are desperately trying to shift position in a way that does not admit past failure and wrongdoing.

 

[Marky90]

If these twonks ever come to Norway, they will taste my cake. I don`t care what anyone thinks about that.

What really disgusts me is that neither BBC or the guardian manage to produce any hint of critical journalism, which is their job!! How can England allow a biased "science media centre" to produce finished articles, which the papers then basically just publish ON THEIR FRONT PAGE. Misleading readers of a whole country about a debilitating condition. They should be prosecuted - the bastards!

 

[SilverbladeTE]

Those who systematically abuse children, who prevent them from being treated, who let some of them die horribly....
all in the name of "Science!" and "we're doing it for their own good!" and of course "the bureaucrats, health insurance company and fascist Eugenic loving murderous scum who've come back to haunt us all"...

well, once upon a time, the Bourbon and Romanov kings fell because their systems were so horrendously corrupt, out of touch and abusive
Rasputin, ring a bell?

this evil crap is par for the course for the British Establishment
accept it, people.
This isn't science, or compassionate healing
this is an evil that should have DIED, forever, at Belsen and Auschwitz

"media blitz" = powerful people pushing a MURDEROUS agenda
these "events" don't happen by accident, pushing modern day Eugenics for the same reasons for same kind of scumbags' desires they did nearly a century ago
victims may change but it's always the same crap underneath

if it weren't for the fact that innocent tourists and some decent folk still work there (who've prevented the UK so far from becoming a Hell on Earth), I'd be all for leaving the City of Westminster a radioactive glass memorial to Mankind's evil, and rid the world of few thousand vermin all in one go.

Hyperbole? Excessive? No, only to those who're wilfully ignorant.
Suggest you count up the death tolls, abuses, etc in last 30+ years *points to the utter ruin much of the Middle East is now, for example, all spun from the same power brokers/control freaks/sociopaths at the top*

Sigh.

 

[SilverbladeTE]

I think it's more than a media blitz to regain lost ground. I think there's an element of panic. They are desperately trying to shift position in a way that does not admit past failure and wrongdoing.

yeah just like Fukushima
"NO there's NOTHING wrong with the reactors!" ~says Mr Corporate Suit

BOOM!

and those monsters, traitors on an appalling scale, denied one of the reactors truly utterly melted down, "China Crisis", hence long term production of incredibly lethal radioactives that did NOT fall off if as it should have if was merely a case of varying damage and prompt criticalities (which would be a short term event and thus, radioactive decay would set in, instead it kept going ad they denied this....basically they have had the equivalent of 300 tons of nerve gas building up there for years since that screw up...)

my point being that this insanity, this wilful evil, denial of truth, is how people in power routinely behave



well Crawley and lot of others have stuck their necks WAAAAAAY out
one can only hope justice may finally actually occur in this poxxed up sick evil country (leadership/Establishment that is, worst shower of evil scum and loons since Caligula or the Nazi party's cadre of warped gits, jeesh!)

 

[Old Bones]

I, too, had a "Groundhog Day" moment when searching for ME news on awakening this morning. Remember the 1993 movie starring Bill Murray in which a TV weatherman finds himself living the same day over and over again until he "gets it right"?

Last year in November, my web searches for ME news began on the exact day the "ME patients are afraid of exercise" articles started being published by the dozens. And here we are, November 1 one year later -- already enough variations of the same drivel to crowd out news of the worthwhile advancements being made in the field.

Here are a few more examples:

http://www.itv.com/news/2016-11-01/chronic-fatigue-syndrome-online-treatment-to-be-trialled/

http://www.bris.ac.uk/news/2016/october/fitnet-trial.html

http://www.geelongadvertiser.com.au...e/news-story/442b58bc908c238451ad4060a7b0f4f9

If "good news travels fast", "bad news travels faster" in this case.

 

[Wildcat]

.
Opposing MEGA (OMEGA) petition link in case you want to sign it after reading todays media blitz on Crawley's 'research'
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
.

 

[Dolphin]

https://twitter.com/i/web/status/793458331599966208

https://twitter.com/i/web/status/793453997013237760

 

[Tuha]

Unbelieveble - you wake up and you see such news after getting a bit of hope after ME conference in Florida. I always thought that Holgate can be usefull for ME community but now.....? What I never understood is that he always said that ME in fact it can be at least 15 diseases - so regarding this maybe he always took ME just for chronic fatigue.

How can this happend in 21st century that we have again and again fight for biomedical recognition of ME :-(

 

[slysaint]

Crawley was also on the Victoria Derbyshire show this morning along with representatives of AYME and the Tymes Trust.

I felt very sorry for Jane Colby; she was outnumbered and made out to be the wicked witch, she'd only just managed to get started before they 'ran out of time' and AYME got the last word.
I feel quite sick

 

[Molly98]

We so need a very savvy, well-connected PR ( as in Public relations not rather than Phoenix rising) person, or two or three, or how about a whole office even, in the UK who can play them at their own game. They are very accomplished at spinning shit into Gold.
All the good research and news from the conference in Florida, which should have been news worthy, not even given a second glance while this spin is up there on the front page. If I only bloody knew the art of spinning I would spin their shit right off the face of this planet.

 

[ash0787]

you guys have done quite well so far though by bypassing the uk government and going straight to the scientific community

 

[AndyPR]

Blog by Utting-Wolf Spouts (which is just an awesome name)

Pace Part II? Esther Crawley and FITNET

In case you missed it, unlikely but kudos if so, today (1 November) has seen considerable media coverage of the proposed FITNET trial[1] (of course the acronym has to include the word ‘fit’) being run by Professor Esther Crawley. Costing £1 million, we yet again see large sums of money being spent on studies promoting the biopsychosocial (BPS) model of the disease rather than decent biomedical research. Crawley’s trial draws on a Dutch study which showed no difference between treatment cohorts at long term follow up[2], though the BBC and their scientifically illiterate journalists imaginatively and dishonestly spun this as a 2/3rd cure rate. Again the laziness and uncritical reporting of any story concerning ME, promoted as usual by the Science Media Centre (SMC), by the UK media is glaring. They even dragged out their old canard, supposed victimisation of the brave researcher (that would be Crawley) by nasty ME activists, said researcher ‘heroically’ carrying on despite abuse from a minority of patients. Such claims were conclusively debunked by the recent First-Tier tribunal Judgement[3], which ordered the release of the PACE trial data but apparently no one told the BBC.

https://uttingwolffspouts.com/2016/11/01/pace-part-ii-esther-crawley-and-fitnet/

 

[worldbackwards]

If these twonks ever come to Norway, they will taste my cake

It's nice that you'd be prepared to go to all the trouble of making a cake for them. Letting bygones be bygones