Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

[Sean]

I'm sure that's when my flue-like symptoms started.

You obviously need a clean sweep.

 

[Karen Kirke]

For an alternative view, I hope that clinicians and parents of children and adolescents with ME/CFS (and indeed, the adolescents themselves) will come across this open access paediatric primer, which includes Peter Rowe, Rosamund Vallings and Nigel Speight as authors. It is is well-referenced, wide-ranging and very practical.

http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full

(If someone has already linked to this primer in this thread and I haven't seen it, apologies!)

 

[TillyMoments]

Full text at http://adc.bmj.com.sci-hub.cc/content/early/2017/06/27/archdischild-2016-310622.full

The link is broken and just comes up with the pic below http://adc.bmj.com/content/early/2017/06/27/archdischild-2016-310622.full This link you have to ask permission

Have NICE decided to have ME as Unexplained Medical Symptoms? Countess Mar asked about FII with regards to children and they put the question as this?
https://hansard.parliament.uk/lords...74766C636C/HealthMedicallyUnexplainedSymptoms

 

[Valentijn]

The link is broken and just comes up with the pic below http://adc.bmj.com/content/early/2017/06/27/archdischild-2016-310622.full This link you have to ask permission

Now it's at http://dx.doi.org.sci-hub.cc/10.1136/archdischild-2016-310622, maybe due to it not being an "early" version anymore.

The best way to search sci-hub is generally by pasting the doi link into the search box.

 

[Dolphin]

They seem to be badly abusing the requirement of post-exertional "malaise or fatigue" in NICE, and are also misstating the suggestion to look for another diagnosis only if none of the listed symptoms or missing, rather than any of them:
View attachment 22193

Small correction:
They actually have it correct in terms of what NICE says:

The diagnosis of CFS/ME should be reconsidered if none of the following key features are present:

post-exertional fatigue or malaise

cognitive difficulties

sleep disturbance

chronic pain.

 

[AndyH]

Small correction:
They actually have it correct in terms of what NICE says:

PEM with a delay in onset of at least 24 hours or more being the norm is a prerequisite symptom for a NICE diagnosis. Only at the three or four month period should they then look for whether all the symptoms have gone or not to confirm ME or otherwise.

 

[RogerBlack]

There is no mention of the delay in onset on the NHS website:
http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Diagnosis.aspx

they only say:
".....the tiredness:
gets worse after activity or gentle exercise, such as a short walk

doing exercise or concentrating makes your symptoms worse"

but they do link to NICE so I suppose they think it's covered.

Is it my imagination or has the NHS page been updated to include these as I don't remember seeing them before?

I strongly recommend archive.org - and have donated.
Plugging in the above URL to archive.org gives
https://web.archive.org/web/*/http:...Chronic-fatigue-syndrome/Pages/Diagnosis.aspx

The Febuary version explicitly repeats the NICE list.

doctors should consider diagnosing CFS if a person has fatigue and all of the following apply:

• it is new or had a clear starting point (it has not been a lifelong problem)
• it is persistent or recurrent, or both
• it is unexplained by other conditions
• it substantially reduces the amount of activity someone can do
• it feels worse after physical activity

The person should also have one or more of these symptoms:...

This version is probably significantly better than what's there now.

The change was between Feb and july this year.

 

[Dolphin]

Competing interests
EC leads the Bath Specialist CFS/ME service. She is the principal investigator for FITNET-NHS, a trial investigating internet-delivered CBT and MAGENTA which is investigating the effectiveness and cost-effectiveness of Graded Exercise Therapy.

I thought this was interesting. I have rarely seen similar declarations in the ME/CFS literature.

 

[Dolphin]

I have read this paper and agree it is terrible.

 

[John Mac]

They are now recruiting for a:

Research Associate Trial Manager for Paediatric CFS/ME
https://uk.linkedin.com/jobs/view/447010619

 

[Dolphin]

For what it's worth.

Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

http://adc.bmj.com/content/early/2017/06/27/archdischild-2016-310622

1. Amberly Brigden1,
2. Maria Loades1,2,3,
3. Anna Abbott3,
4. Joanne Bond-Kendall3,
5. Esther Crawley1

Abstract:

Paediatric chronic fatigue syndrome or myalgic encephalomyelitis affects at least 1% of secondary school children in the UK and is very disabling. Treatment is effective but few children get a diagnosis or access treatment. This paper summarises what we currently know about diagnosing and treating this important illness in childhood

note: it is behind a pay wall. I did not look for the full text.

http://opus.bath.ac.uk/55202/1/ADC_...ronic_Fatigue_in_Childhood_Revision_clean.pdf