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

Esther12

Esther12

Senior Member
Messages
13,774
Doesn't look good to me.

Testing a ‘controversial’ treatment for CFS/ME in children
In England up to two in 100 children have Chronic Fatigue Syndrome (CFS/ME), the illness means they are unable to go to school or do other activities for more than three months. In fact 1% of secondary school children miss a day a week or more because of it. Unfortunately controversy rages around the illness and the treatment. Most children will recover if they receive specialist treatment; however, there is very limited specialist care in the UK and approximately 90% of children live too far away to receive the treatment they need.

Cognitive Behavioural Therapy (CBT) is known to be effective for children and a very successful trial in the Netherlands showed it can be delivered over the internet, meaning children can be helped wherever they live. However, we do not know if the results can be replicated in the UK so researchers, amidst rising tension from some people who do not support treatments such as CBT or Graded Exercise Therapy, are now starting a large clinical trial to test whether this treatment would work in the UK and should be available on the NHS.

Journalists came along to the SMC to discuss issues such as:

  • How much of an impact did this treatment have in children in the Netherlands? Why would it be different over here?
  • What will the trial involve and when will you know whether the results are positive?
  • Why is there such hostility around trials in children from some patient groups?
  • What barriers are being put in the way of trials like this from going ahead?
  • What do children with CFS/ME want and why is their voice not being heard?
  • What are the next steps for this trial to proceed and, if they are successful, how quickly could the treatment be rolled out?


Speakers:

Prof. Esther Crawley, Professor of Child Health, School of Social and Community Medicine, University of Bristol

Prof. Stephen Holgate, Chair of UK CFS/M.E. Research Collaborative and Medical Research Council Clinical Professor of Immunopharmacology, Faculty of Medicine, University of Southampton

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
Click to expand...

http://www.sciencemediacentre.org/testing-a-controversial-treatment-for-cfsme-in-children/
 
Esther12

Esther12

Senior Member
Messages
13,774
Dolphin said:
Landmark chronic fatigue trial could cure two-thirds
By James Gallagher Health and science reporter, BBC News website
http://www.bbc.com/news/health-37822068
Click to expand...

That's pretty appalling.

Prof Crawley is leading the FITNET-NHS trial, to see if online consultations work and are cost-effective for the health service.

Trials of the scheme in the Netherlands showed 63% of the patients given therapy had no symptoms after six months, whereas just 8% recovered without it.

The scheme offers behavioural therapy sessions to change the way children think of the disease and aims to reduce the time spent sleeping and sometimes cut activity levels.

The approach regularly receives criticism from some activists who argue it treats chronic fatigue syndrome as a disease of the mind.
Click to expand...

I am surprised that coverage this bad is still being promoted by the SMC.
 
J

JamBob

Senior Member
Messages
191
The Empire strikes back.....:bang-head:

  • Why is there such hostility around trials in children from some patient groups?


I suppose this will have involved more anti-patient propaganda such that all British journalists who attended will now be on-message for Magenta.


If EC really cares about helping kids with ME - why didn't she fly to Florida this week to listen to the current developments in research instead of spending the time organising a press conference to promote yet more psych propaganda?
 
Esther12

Esther12

Senior Member
Messages
13,774
alex3619 said:
I wanna see the published research. That is needed so we can analyze it. I wonder if the long term results are nada just like the last study.
Click to expand...

Sounds like it's only just starting, so won't be due for a while. If it's another poorly designed waste of money I'm not desperately keen for results!

http://forums.phoenixrising.me/inde...for-children-media-blitz-november-2016.47677/

The media coverage in Dolphin's thread makes it look like this was the sort of anti-patient propaganda you'd expect. Disappointing Holgate was involved, but I think it has finally woken me up to the CMRC being a mistake. I think I let desperation/hope lead to some wish-thinking there.
 
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alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Esther12 said:
Sounds like it's only just starting, so won't be due for a while. If it's another poorly designed waste of money I'm not desperately keen for results!
Click to expand...
I wouldn't fund it, but its just as important to have independent analysis, and particularly to look for objective outcome measures. I wonder if they will include school grades. Its not enough to get students back to school if it means they are failing or doing much worse than before.
 
R

RogerBlack

Senior Member
Messages
902
When trying to contact reporters involved, try to keep your responses brief, and point them to factual sources (not ranty threads). For example, discussions of what the recovery criteria actually means, and actual rates from PACE, not personal attacks on the BPS crowd.
 
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