Talk:Pediatric myalgic encephalomyelitis/chronic fatigue syndrome

People with pediatric ME/CFS

All the examples are very severely ill people who died or didn't recover, which is not typical. Examples of some who are less severely affected, and perhaps a graph on severity would make this page far less depressing (and more accurate) notjusttired (talk) 14:43, 17 February 2019 (EST)

I can't find examples of people that onset as children that only have SEID, but if you can then reference them. Everyone we have examples of on MEpedia are very sick.--77.111.245.208 10:11, 25 February 2019 (EST)

Not child friendly

MEpedia's main audience won't be children but it would be nice to have a bit more visual appeal on this page, as well as breaking up any large chunks of text for easy reading.

Is it worth having a page on ME/CFS aimed at young people? I've noticed that the Tymes Trust has done useful leaflets, perhaps a one page primer? notjusttired (talk) 14:43, 17 February 2019 (EST)

Start the Primer based on Tymes Trust information.--77.111.245.208 10:11, 25 February 2019 (EST)

Adding videos and images

I think this would help readability and appeal to younger people reading. It may be worth setting up a YouTube Playlist on MEAction's YouTube channel about this. Some millions missing photos involving children or their shoes too. Is consent needed for children's photos if they are not identified by name? notjusttired (talk) 14:43, 17 February 2019 (EST)

I have looked for images and can't locate any of children. There is one child on the PEM page that you might want to post.--77.111.245.208 10:11, 25 February 2019 (EST)

Avoid referencing MEpedia itself

Please link to the relevant page instead of using a reference (eg for those with ME), or visit the page and find copy the reference used instead. MEpedia should try and avoid referencing itself, especially because it then becomes difficult to find where the original info came from if it's factual. notjusttired (talk) 14:43, 17 February 2019 (EST)

I guess you should go to the page and get the reference and post it.--77.111.245.208 10:11, 25 February 2019 (EST)

Rimes study

Not cited in page, is it Rimes 2007? Issues with prevalence by Rimes described in Jason et al (2015)

• 2015, Issues in Estimating Rates of Pediatric Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in a Community-based Sample (Full text)

"One problem with population based efforts (e.g., Rimes et al., 2007) is that the small number of identified patients with CFS resulted in very wide confidence intervals around the prevalence estimates. For example, in the Rimes et al. (2007) study of British general practitioners, the point prevalence of pediatric CFS was 0.5%, but the 95% confidence interval around this ranged from 0.01 to 0.9, which would result in estimates of anywhere between 10 and 900 per 100,000. Thus, the true prevalence rate is unclear. Also, physician samples tend to be biased, generally under- estimating the true prevalence rate." notjusttired (talk) 06:46, 25 February 2019 (EST)

Post it.--77.111.245.208 10:11, 25 February 2019 (EST)

References

References not needed as citations were created through the wizard

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)