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Recommended reading for doctors about pediatric ME?

Messages
41
A friend of mine is looking for info about pediatric ME, for a doctor (in Sweden) who wants to learn more.
She's only interested in biomedical, high quality information.

Is there perhaps something similar to IACFS/ME's Primer for Clinical Practitioners, but focused on children?
Tymes Trust's website seems great, too.

What articles, books etc would you recommend?

Any help or suggestions would be very much appreciated, because we're both too ill to research this in-depth ourselves right now.

Many thanks in advance :)
 

Denise

Senior Member
Messages
1,095
A friend of mine is looking for info about pediatric ME, for a doctor (in Sweden) who wants to learn more.
She's only interested in biomedical, high quality information.

Is there perhaps something similar to IACFS/ME's Primer for Clinical Practitioners, but focused on children?
Tymes Trust's website seems great, too.

What articles, books etc would you recommend?

:)


A pediatric primer is awaiting publication.
In the meantime the IOM report has a good section on pediatric patients. The Tymes Trust is a big help.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Funny, in looking up how to find The Journal of Chronic Fatigue Syndrome (in press 1995-2007) for another thread, I happened across this article and wondered if someone might find it useful. Then I saw your post. Maybe this will be of use to you (or the Swedish doctor):

A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
Leonard A. Jason, Karen Jordan, Teruhisa Miike, David S. Bell, Charles Lapp, Susan Torres-Harding, show all
Pages 1-44 | Published online: 04 Dec 2011

The whole article can be found here (given that the Journal of CFS is out of print, and you really can't get its articles anymore).
 

me/cfs 27931

Guest
Messages
1,294
You could search for anything written by Dr. David Bell, a retired pediatrician who specialized in treating ME/CFS:

https://en.wikipedia.org/wiki/David_Sheffield_Bell

http://me-pedia.org/wiki/David_Bell

Books and articles are at the bottom of the pages.
I keep referring back to the following fantastic article, as it describes so many of my (at the time undiagnosed) pediatric symptoms.

ME/CFS in Children
By Dr. David S. Bell • May 13, 2016
http://www.prohealth.com/library/showarticle.cfm?libid=28892

In particular, Dr. Bell discusses "facial flushing", which I experienced in high school and had not connected to my ME/CFS before. If only my doctors at the time had this knowledge. If only!
Dr. Bell:
"There are minor differences between adolescent ME/CFS and the adult ME/CFS. One is that abdominal pain is more common while this symptom is not even a part of some adult symptom criteria. In addition, facial flushing is more common in teens."

Also, Dr. Bell talks about onset.
Dr. Bell:
"However during adolescence the symptom pattern coalesces into that of ME/CFS, so that it becomes possible to say that ‘in retrospect’ the illness began in early childhood. The cognitive symptoms from age 3 to age 12 are indistinguishable from attention deficit disorder, and this is another area that has never been adequately studied."

Although I've usually considered my disease onset at age 15, I can trace neuro and vision symptoms all the way back to kindergarten. Everything kind of "coalesced" into full blown ME/CFS following a viral infection at age 15.

I was also diagnosed with ADD from ages 7-12, but never felt my symptoms were anything like the other ADD kids I knew. More like having difficulty concentrating due to fluctuating brain fog.

For completeness, I would have liked Dr. Bell discuss to have discussed vision-related symptoms, as I think these are also key to pediatric diagnosis.
 
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