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

[Countrygirl]

I notice that the BBC reporter now says, A treatment that can 'treat' 2/3 of children with CFS........................???

Not cure or improve.................a treatment that can 'treat'................:thumbdown: Curious!

Edited to add: All change. It is now successful in 2/3rd of cases.

66% recover.

 

[Molly98]

I love that idea.

Perhaps we need to get planning for a year or two's time
You know what they say-
Fail to plan, plan to fail and all that.

Actually from what I have seen refugees and Asylum seekers get treated with a great deal of dignity and a very helpful and caring attitude by Norweigan authorities,( from what I have seen, there might be a side I have not seen) probably far better than any of us get treated here by health service, DWP etc

 

[Cheshire]

I don't know if this article has been posted, but the photos weren't...

Chronic Fatigue Syndrome: Online therapy trial to provide help to CFS sufferers

http://www.express.co.uk/life-style...ndrome-ME-discuss-Dr-Ranj-Dr-Zoe-This-Morning


Hum????

A new trend of illustrations for ME/CFS articles?

 

[slysaint]

I don't know if this article has been posted, but the photos weren't...

Chronic Fatigue Syndrome: Online therapy trial to provide help to CFS sufferers

http://www.express.co.uk/life-style...ndrome-ME-discuss-Dr-Ranj-Dr-Zoe-This-Morning


Hum????

A new trend of illustrations for ME/CFS articles?

Yes it says.........."We can get you from the Bathroom to the Boardroom in a few easy steps"

 

[Molly98]

24-hour BBC news is quietly talking to itself in the corner of my room, and the banner headline is moving repeatedly across the screen. A successful treatment for children with CFS is being trialled by the NHS.

OMG how can they say it's a successful treatment if it has not been trialled yet ?
If they are going to say are yes but it's been trialled and successful in Holland, well that sucks of double standards just a wee bit don't you think?
So when it comes to taking into account finding by the IOM and AHRQ and latest bio research and debunked PACE reanalysis to change the NICE guidelines "Foreign" research doesn't count only the views of the great, masterful, prestige and superior British institutions of doctors and psychiatrist count.

It quite OK though if a piece of research happens to fit with the views of those institutions, then it really does count.

 

[daisybell]

The truth is that a treatment that has been shown to have no long term benefit for children with ME/CFS is about to be tried in the U.K. So - wasting money on CBT that produces no long term improvement over doing nothing, is what we're going to do - because the Dutch showed that in the shorter term (6 months) they could fiddle the figures and report that 2/3 were within 2 standard deviations of the mean on the questionnaire about fatigue - which you may choose to interpret as abnormal, but it was the best we could manipulate out of the data.

 

[Daisymay]

24-hour BBC news is quietly talking to itself in the corner of my room, and the banner headline is moving repeatedly across the screen. A successful treatment for children with CFS is being trialled by the NHS.

OK this is SO, SO way over the top it is beyond bizarre.......you've got news headlines about the terrible fighting in Mosul, then Clinton emails, then news of FITNET........ for goodness sake!

 

[sarah darwins]

Hum????

A new trend of illustrations for ME/CFS articles?

The woman on the left has just finished reading the Guardian's report on the latest Esther Crawley project (and filing it appropriately). I know how she feels.

 

[CFS_for_19_years]

I don't know if this article has been posted, but the photos weren't...

Chronic Fatigue Syndrome: Online therapy trial to provide help to CFS sufferers

http://www.express.co.uk/life-style...ndrome-ME-discuss-Dr-Ranj-Dr-Zoe-This-Morning


Hum????

A new trend of illustrations for ME/CFS articles?

Going from SHIT to FIT?

 

[worldbackwards]

Is sitting on the bog in your undies part of the criteria? An improvement for Crawley.

 

[Molly98]

The woman on the left has just finished reading the Guardian's report on the latest Esther Crawley project (and filing it appropriately). I know how she feels.

Ha Ha, me too!
Sadly I have lost my faith in the Guardian following their recent coverage ( and lack of) on ME, I would have hoped for better, hoped they would have investigated thoroughly, in fact I would have thought that PACE being debunked and patients fighting for justice against powerful people and organisations would be right up their street.
Very das and disappointed

 

[Ysabelle-S]

OK this is SO, SO way over the top it is beyond bizarre.......you've got news headlines about the terrible fighting in Mosul, then Clinton emails, then news of FITNET........ for goodness sake!

Clearly, someone somewhere considers this story a priority, scientific crap though it may be. You wonder what the back room discussions have been to get it up there... what's been said, and the bigger question of what's not been said... about all the biomedical research going on elsewhere. Or the huge criticisms of the PACE trial. The UK media, and the BBC in particular, have never been as bad as they are now. And it's not just ME, which barely gets a mention anyway. It's a whole host of issues.

 

[Molly98]

Going from SHIT to FIT?

Ha Ha ...Brilliant, exactly
SHITFIT its all the rage here in the UK

 

[sarah darwins]

Ha Ha, me too!
Sadly I have lost my faith in the Guardian following their recent coverage ( and lack of) on ME, I would have hoped for better, hoped they would have investigated thoroughly, in fact I would have thought that PACE being debunked and patients fighting for justice against powerful people and organisations would be right up their street.
Very das and disappointed

Ditto. Your last line is how I used to think about the Guardian. But I now realise that they have a zealous regard for all things psychological and this trumps everything for them, even in the face of blatant evidence of very vulnerable people being neglected and actively harmed.

The Guardian has let us, and itself, down really badly over this illness. In fact it has often been the most actively harmful media outlet in the UK for us, giving frequent platforms to the BPS crowd with no balance, no fact-checking or challenging. There has been no more effective propaganda platform for these self-serving, career-building, narcissistic charlatans.

 

[slysaint]

G

Ditto. Your last line is how I used to think about the Guardian. But I now realise that they have a zealous regard for all things psychological and this trumps everything for them, even in the face of blatant evidence of very vulnerable people being neglected and actively harmed.

The Guardian has let us, and itself, down really badly over this illness. In fact it has often been the most actively harmful media outlet in the UK for us, giving frequent platforms to the BPS crowd with no balance, no fact-checking or challenging. There has been no more effective propaganda platform for these self-serving, career-building, narcissistic charlatans.

Good to have you back SD

 

[Molly98]

Ditto. Your last line is how I used to think about the Guardian. But I now realise that they have a zealous regard for all things psychological and this trumps everything for them, even in the face of blatant evidence of very vulnerable people being neglected and actively harmed.

The Guardian has let us, and itself, down really badly over this illness. In fact it has often been the most actively harmful media outlet in the UK for us, giving frequent platforms to the BPS crowd with no balance, no fact-checking or challenging. There has been no more effective propaganda platform for these self-serving, career-building, narcissistic charlatans.

Oh BLLCKS, that's it I am Boycotting the Guardian too, now there is no British Newspaper I can read. Sooo depressing

 

[sarah darwins]

G

Good to have you back SD

I've been on a break ;-)

Now I'm back. And I'm thoroughly pissed off.

 

[sarah darwins]

Oh BLLCKS, that's it I am Boycotting the Guardian too, now there is no British Newspaper I can read. Sooo depressing

Try the Washington Post, just to remind yourself what an actual newspaper looks like. British journalism died a long time ago.

 

[Countrygirl]

I'm still musing over the significance of this statement from Prof Crawley's paper CFS in young people: the spectrum and the myths (I would like to read the full paper and not just the abstract)

Large telephone surveys in both the UK and USA suggest that chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) in children is both surprisingly common (0.19–2%), and indiscriminate in who it affects (Jordan et al, 2000; Chalder et al, 2003; Jones et al, 2004). There is no gender preference, no social class gradient, and all ethnic groups are affected. The CFS/ME described in studies where patients are recruited from specialist care is much rarer and predominantly affects white females of higher socioeconomic status (Patel et al, 2003)

To my view, she clearly differentiates between her fatigued youngsters and the type of ME represented in clinics. She is clearly saying that she is studying a different condition altogether. This is highly relevant, surely?

 

[slysaint]

What none of the media seem to be asking is "Why do you need to do trials for online therapy?; it already exists"
http://www.nhs.uk/Conditions/online-mental-health-services/Pages/introduction.aspx
So she (EC) needs to make up her mind; is she saying paediactric ME/CFS is a mental illness so FITNET will come under the same heading as these existing online therapies, OR is it biological in which case CBT can only at best help with management. The whole thing is a contradiction in every sense.