ME/CFS contributions at Royal College of Paediatrics and Child Health conference, May 2019

MeSci

MeSci

Senior Member (Voting Rights)
Source: Archives of Disease in Childhood

Volume 104, Suppl 2

Date: May 2019

URL: https://adc.bmj.com/content/104/Suppl_2

Royal College of Paediatrics and Child Health
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Abstracts of the RCPCH Conference and exhibition 13–15 May 2019, ICC, Birmingham,

Paediatrics: Pathways to a brighter future

Robertson D, Mansfield K, Dennis H, Wilson C, Kumar Y.

G142(P) 

Prognosis for childhood CFS is excellent.

https://adc.bmj.com/content/104/Suppl_2/A58.2

McCourt A, Maile E, Gregorowski A, Hargreaves D, Segal T.

G599(P) 

Characteristics of a patient population attending a specialist outpatient service for chronic fatigue syndrome.

https://adc.bmj.com/content/104/Suppl_2/A242.1

Doukrou M, Hiremath S, Ferin K, Jones S, Begent J, Segal T.

G612(P) 

Characterisation of population, review of service provision, and outcomes for young people with chronic fatigue syndrome in a tertiary care inpatient setting

https://adc.bmj.com/content/104/Suppl_2/A247.2

Bashton D, O'Connor L, Meyer S, Gregorowski A.

G614(P) 

Tea and cake: an opportunity for young people and their parents/guardians to eat cake and share ideas.

https://adc.bmj.com/content/104/Suppl_2/A248.1

Moeda S, Gamper L, Gregorowski1 A, Segal1 TY.

G615(P)

When chronic fatigue syndrome leads to mutism.

https://adc.bmj.com/content/104/Suppl_2/A248.2

Mod note: See below for links to separate threads on each abstract.
 
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MeSci said:
an opportunity for young people and their parents/guardians to eat cake and share ideas
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ah the cake therapy trial.
Aims To provide an informal client led forum for young people and parents/guardians to share ideas, experiences and provide feedback to the service, whilst eating cake.
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A bit confused as I looked at the program a couple of days ago and couldn't find anything relevent
https://www.rcpch.ac.uk/sites/default/files/2019-05/Conference_Programme_Final_Website_0.pdf

where was all this stuff?
 
 
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MEMarge said:
@Trish, there is also a fifth.

Doukrou M, Hiremath S, Ferin K, Jones S, Begent J, Segal T.

G612(P) 

Characterisation of population, review of service provision, and outcomes for young people with chronic fatigue syndrome in a tertiary care inpatient setting

https://adc.bmj.com/content/104/Suppl_2/A247.2
Click to expand...
Further work is needed to define quantitative markers of positive outcomes, in order to assess the relative efficacy of different treatment options.
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Those services have been in place for well over a decade and are still unable to provide objective evidence of anything, are still saying they need more time to come up with a useful measure, which they avoid like the plague because it would falsify the subjective outcomes they cherry-pick. This is usually step 0, the one you do before implementing services because otherwise you find yourself unable to measure whether you are doing anything useful.

Beyond embarrassing. At some point it becomes misuse of public funds and medical malpractice.
 
These groups' (Young Persons Health Special Interests Group and Paediatric Educators’ Special Interests Group) conference program :

https://www.rcpch.ac.uk/news-events...-interests-group-paediatric-educators-special

I was surprised by the absence of Bristol / Crawley in this section.

Didn't search the entire program though.

The ADC's conference issue's list of authors isn't free access, so didn''t search there either.

https://adc.bmj.com/content/104/Suppl_2/A270

Among the exhibitors and supporters is action for me:

https://www.rcpch.ac.uk/news-events/rcpch-conference/exhibitors

Edited to add:
At least one poster covering ME (or attributed ME) was presented in/by an other section/ group, the
"Prognosis for childhood CFS is excellent" poster in the British Society for Paediatric Dermatology and British Society for Paediatric and Adolescent Rheumatology section:
https://www.rcpch.ac.uk/news-events...atology-british-society-paediatric-adolescent
 
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MSEsperanza said:
These groups' (Young Persons Health Special Interests Group and Paediatric Educators’ Special Interests Group) conference program :

Edited to add:
At least one poster covering ME (or attributed ME) was presented in/by an other section/ group, the
"Prognosis for childhood CFS is excellent" poster in the British Society for Paediatric Dermatology and British Society for Paediatric and Adolescent Rheumatology section:
https://www.rcpch.ac.uk/news-events...atology-british-society-paediatric-adolescent
Click to expand...

This one has already been given a thread.
 
SallyC said:
This is from the second one. Not my idea of recovery.

"Regarding outcomes, 39.1% of patients recovered (defined as discharged due to recovery or increasing school attendance by >25% at 6 months)"
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Huh?! Recovery can only be full attendance surely, subject to normal absences?! One day a week increasing to 1.25 days a week would be only marginal improvement, let alone recovery. It's real cart-before-the-horse toy science.

We want to be able to claim recovery; what findings have we got; in order to claim recovery we will have to define it as this.
​
And even with that absurd definition, over 60% still did not achieve it!

This is 'science' divorced from the most elementary qualification of all - common sense.
 
MEMarge said:
This one has already been given a thread.
Click to expand...
Thank you. I was aware of that. :)

I just wanted to link to the context within which this and the other contributions were presented on the conference.

P.S. I am also aware that even though EC seems to have not presented anything herself, her and other cognitive behavioral concept proponents' impact seems to be apparent in the contributions on ME presented on the conference.
 
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