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Given the comments here I haven't had the nerve to read the whole thing yet. This quote caught my eye though and I am not clear on what it means. "….For children and adolescents who are sufficiently unwell to be continually away from school, on-going care should also involve a paediatrician...

Another thing about orthostatic intolerance - patients who are deriving (at least) some benefit from treatment of OI may still have very severe ME.

Honest question - In this day and age is phone sampling the best way to begin epi studies? (Given the portability of cell phone #s in the US people may have gotten a phone # when they lived in the Chicago area. But if they are no longer in that area or have access to that area many wouldn't be...

The onset of ME for many pediatric patients includes not just the physical but the serious cognitive symptoms as well. Those cannot be explained away as "teenage sleep patterns", "exercise avoidance".... When a 12 year old abruptly cannot do the mental math they could do effortlessly at age 5...

Just an unscientific guess on my part and a bias towards things related to OI - I think some of it has to do with blood flow to the brain. If impeded when sitting/standing, the brain has to struggle more than when one is lying down. This uses energy that PwME don't have enough of and results in...

How long will it take til there's "tongue reduction surgery"?

WELL done!

I am not aware of any but I believe people with EDS may have slow wound healing (and raised scar tissue).

Yes.

If I recall correctly, last year the ME/cfs Clinician Coalition said they think an LDN trial is a priority.

The health assessment asks about hours of upright vs feet up activity, it does not ask about hours of cognitive function and only asks in general about brain fog. I find it frustrating that describing cognitive function is not given more importance. The pdf about how to communicate with HCPs...

And those unhelpful teaspoon beliefs may be exacerbated by the lack of control group in their study. They didn't see if there were similar losses of things like soup spoons....

https://www.bmj.com/content/331/7531/1498

I looked back through some notes. In 2017 CDC put out a solicitation about the ped. portion of the multi-site study. Sometime after that (don't recall exactly when) I believe OMI was given a sole-source contract for this portion of the study.

This flyer is probably about the pediatric portion of the CDC multi-site study.

Fukuda? In a publication dated 2020? With L Jason as an author? :banghead: Wha?

Uh......... Appalling. Reprehensible. (I can't come up with additional publishable words about this. Among other questions - *Where*do these people grow up?)

I too have never met anyone who was afraid their child might develop ME. Not parents, not people in social settings..... no one seems afraid of getting it despite descriptions of how disabled patients can be.

fwiw - from the other side of the Atlantic - A former US Senator died yesterday of tick-borne encephalitis (contracted a few years ago). https://www.cnn.com/2019/10/28/politics/kay-hagan-dead-north-carolina-senator/index.html

It felt as though they were going to develop a plan, to develop a plan, for developing the plan, to make a plan, to generate a plan that may end up working on a strategic plan. (Either that or I was not hearing that they feel a sense of urgency....)