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

[sarah darwins]

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.

Seriously, this is why I've lost patience. The Wessely School don't even bother with things like rationality, logic, scientific procedure. They don't have to. We can win the argument over and over again, and we still get nowhere in the UK. It's about power, and control within a healthcare system that is way too overstretched to tackle complex new challenges, and a political system that has lost its way completely and given rise to a sort of corporatised mandarin class that makes decisions based solely on budgets and careers and public relations; and a media that has lost all sight of the dividing line between news and entertainment and is, in my considered opinion, the worst in the free world.

I returned to the UK a couple of years back after many years abroad, and I find myself plotting an escape route already. This place is killing me.

 

[soti]

predominantly affects white females of higher socioeconomic status

Ah. Yes. There's the diss. What she means is that "ME" is merely a meme that us pearl-clutching types are exposed to.

I wrote a complaint to the BBC pointing out that if, as Esther Crawley said, their treatment "might as well be" a pill, shouldn't we use the same clinical trial guidelines that are used for pills to know if it works or not? And given that these guidelines have not been followed, isn't it a little disingenuous of the BBC to promote their press release?

 

[alex3619]

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

Question - was this on non-normalized data, again???

 

[mermaid]

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.

And what about that man on the right of the picture (Express) - he's looking a bit advanced in years for this teenage treatment/cure - has CFS (sic) so aged him? That nice young female psychologist with the clipboard will soon get him moving again

 

[Daisymay]

In these paediatric studies I never see mentioned the highly relevant fact quoted by Dr CS years ago that people under 18 who develop ME as a rule naturally recover in 4.6 years. How do they factor this into their research?

Shhhhh, don't tell EC or she'll do a follow up study in 4.6 years!

 

[CFS_for_19_years]

predominantly affects white females of higher socioeconomic status

Isn't that the same thing as "yuppie flu?"

 

[worldbackwards]

This is interesting, especially the end

https://twitter.com/i/web/status/793432357449719808

Is it time to hire a PR consultant? Some kind of organised response is clearly called for if we want to avoid getting creamed like this.

 

[Esther12]

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.

Has anyone got copies of the various versions to compare?

The 'could cure' headline is here:

https://twitter.com/i/web/status/793256562739580929

 

[Daisymay]

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)

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?

I'd think so too...where did you get the quote from? Do you have a link?

 

[Jonathan Edwards]

And what about that man on the right of the picture (Express) - he's looking a bit advanced in years for this teenage treatment/cure - has CFS (sic) so aged him? That nice young female psychologist with the clipboard will soon get him moving again

Er, is that a blue cardigan? Or maybe just a cashmere sweater - probably not fully trained yet.

 

[Countrygirl]

I'd think so too...where did you get the quote from? Do you have a link?

Here @Daisymay http://www.magonlinelibrary.com/doi/abs/10.12968/hmed.2006.67.9.21994

 

[Wildcat]

.
Just been informed that the author of the BBC article, James Gallagher, Health and science reporter, BBC News website ... is also on the Science Media Centre Advisory Panel

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

http://www.sciencemediacentre.org/about-us/governance/

.

 

[Molly98]

.
Just been informed that the author of the BBC article, James Gallagher, Health and science reporter, BBC News website ... is also on the Science Media Centre Advisory Panel

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

http://www.sciencemediacentre.org/about-us/governance/

.

I think we need an ME science Media centre, any takers on setting one up?

 

[A.B.]

.
Just been informed that the author of the BBC article, James Gallagher, Health and science reporter, BBC News website ... is also on the Science Media Centre Advisory Panel

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

http://www.sciencemediacentre.org/about-us/governance/

.

Speculation mode engaged: Wessely is probably behind this media spin, since he is director at SMC. Normally, a trial that's just starting isn't given so much attention, unless perhaps it was revolutionary.

I think we may be seeing the survival strategy of the BPS school. Crawley is denying that severe ME exists and has made a ridiculous 2% prevalence claim. MEGA, under BPS influence, wants to study fatigue using very broad criteria.

It seems they have decided to evolve towards treating the mildest cases, that have difficulties refusing treatment (kids in school, with pressure on parents by authorities), while also having high regression to the mean. It's quite suitable for a continued career publishing on fancy placebo treatments.

 

[Marky90]

.
Just been informed that the author of the BBC article, James Gallagher, Health and science reporter, BBC News website ... is also on the Science Media Centre Advisory Panel

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

http://www.sciencemediacentre.org/about-us/governance/

.

Wow wow wow wow.

Are there no laws in UK against such obvious conflicts of interest?

 

[eafw]

I think we need an ME science Media centre, any takers on setting one up?

Have been interested in this for a while - can we take it into new thread as is getting v. off topic for fitnet as such ?

ETA: here we go http://forums.phoenixrising.me/inde...earts-and-minds-patient-activist-group.47697/

 

[Hip]

Is it worth writing to the Independent Press Standards Organisation (IPSO), which is an independent regulator for the newspaper and magazine industry in the UK, complaining about the gross inaccuracies these journalists have made in their articles.

The type of complaints the IPSO accept are the following:

Who can complain?
Accuracy (Clause 1 of the Editors' Code)

Anyone can complain about a significant inaccuracy which has been published on a general point of fact under Clause 1 of the Editors’ Code. Where an inaccuracy relates to a specific individual or organisation, IPSO may be able to take forward a complaint from a third party but will need to consider the individual or group directly affected:

• Can IPSO properly investigate the factual position?
• Is the material in dispute in the public domain?
• Has the person/people directly affected complained and are they likely to complain on their own behalf? If not, what is the likelihood that they would cooperate with IPSO?
• What is the likely impact of a complaint on the person/people directly affected?
• Would there be a legal difficulty in publishing any findings?

Source: Make a complaint

Note that you cannot use the IPSO to complain about inaccuracies in the TV or radio; for these you need to contact:

• Complaints about TV and radio – contact Ofcom
• Complaints about the BBC – contact BBC Complaints

The Guardian article states:

Up to 2% of young people are affected by CFS, also known as myalgic encephalopathy (ME).
...
Treatment given to young people in the Netherlands has had remarkable results, helping 63% recover within six months and return to school and a normal life, compared with 8% of those who had other care.

Clearly that is wrong (see @ZeroGravitas's earlier post).



The Guardian seems to have disabled the option of posting comments on most of its articles, so a complaint to the IPSO is one of the few ways of trying to counter this disinformation about ME/CFS cure rates from psychological therapies.

 

[Countrygirl]

Secondly, FITNET involves parents in the treatment of adolescent CFS. Earlier studies from Chalder et al showed the importance of family-focused CBT to achieve treatment success in adolescents

(from the Dutch paper)

So they consider it a 'biological' illness? Why then do they need to treat the parent?

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-23

 

[Countrygirl]

Fitnet's brainwashing schedule:

Cognitive Behavioural Treatment Modules

1. 1.
   To introduce myself
   
   
   
2. 2.
   How does this treatment work?
   
   
   
3. 3.
   Assessing my present possibilities
   
   
   
4. 4.
   My parents
   
   
   
5. 5.
   My goals
   
   
   
6. 6.
   My sleep routine
   
   
   
7. 7.
   My thoughts
   
   
   
8. 8.
   Changing my attention to fatigue
   
   
   
9. 9.
   Step up my physical activities (passive patients)
   
   
   
10. 10.
    Balance between activity and rest (relative active patients)
    
    
    
11. 11.
    Step up my physical activities (relative active patients)
    
    
    
12. 12.
    Recognizable problems with the treatment
    
    
    
13. 13.
    Step up my mental activities
    
    
    
14. 14.
    My schedule for school
    
    
    
15. 15.
    My social activities
    
    
    
16. 16.
    To reach goals
    
    
    
17. 17.
    My schedule for work
    
    
    
18. 18.
    To have a night out
    
    
    
19. 19.
    Do I still see myself as a patient with CFS?
    
    
    
20. 20.
    My evaluation
    
    
    
21. 21.
    Follow-up
    

 

[Countrygirl]

FITNET is derived from the protocol for CBT that was developed on the basis of a model of perpetuating factors of CFS[2]. It has been tested in several studies [3, 17, 39] and is aimed at changing fatigue related cognitions and a gradual increase of activities.

!!

Most do not attend school at all. For them, the treatment program starts with a systematic build up of activity as soon as possible, while addressing and challenging their beliefs that activity would aggravate symptoms.

Parents will be actively involved in supporting their child and parents' beliefs and behaviours regarding the condition of their child will be explored and addressed. The aims of therapy take into account the specific developmental tasks of adolescents. In children younger than 15 years, parents often act as a coach; for older participants, parents have to step back and encourage their child to take responsibility for the treatment.

Modules 6 to 19 focus on cognitive behavioural strategies and include instructions and exercises on how to identify, challenge and change cognitive processes that contribute to CFS. There are two treatment protocols, depending on the pattern of physical activity of the patient[16].