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Symptom improvement at the start of the year has been reversed for my daughter. ( age 17) The brief hydrocortisone experience appeared to be the turning point ( backwards). However this may be coincidence. Within the past month the following have ramped up in intensity Jaw and neck neck pain...

Wow! Amazing work. I hope that you have not deteriorated doing this. Thank you.:trophy@:balloons:

CFS comes under psychological therapies remit under CAMHS in Scotland.

Such a project exists http://www.luminarybakery.com

The direction ofvtravel has been signposted by research funding. CBT has had so much money it must offer some bang for the bucks Check out @Keith_Laws’s Tweet:

From the other place- a couple of interesting links re phenylalanine / endocrine system/ trytophan. https://www.nova.edu/nim/broderick-and-craddock-article-in-intl-innovation.pdf https://phoenixrising.me/archives/5396

I think the lack of defined recovery (and potentially lack of consistent recovery definition) and relative stats is something that NICE should be made aware of during the guideline process. How can you claim recovery without such basic information?

Perhaps something for @Jonathan Edwards notebook

Is there a definition as to what constitutes recovery ?

Is there no PVG process in England / Wales/ NI? In Scotland if you work/ regularly volunteer with groups classed as vulnerable , you have to be vetted via a national scheme: there are degrees of checks depending on the interaction. It is only as good as the records that are checked. I have to...

In our case it was under the direction of an endocrinologist. The head if dept and a professor.Main focus diabetes as i suspect is the case for many UK endocrinologist s. I think he did want to be able to do something, but seized on a lowish base cortisol level without trying to understand why...

This may be interesting for some given the changes in metabolism . Tagging @mariovitali re LXR role https://www.cell.com/cell-reports/fulltext/S2211-1247(18)31696-6#.W_Qs9gPOjZg.twitter

Thanks @Hutan. I did wonder re the time period represented. We have done hair testing for electrolyte balance and this was simply dismissed by medics. Showed significant issues.

I hope that you fully recover from the experience.

Is hair a good indicator of cortisol status?

Yes. Low barometric pressure is a huge issue - used to also spark migraines ( though not so many of these now)

Yes to increased pain/ symptoms before and during. Reported as feeling " ill" or as if about to come down with something. Periods have been erratic and of differing length, but seem to have settled to within a week or so of previous cycle lengths- that said it could change again!

Very interesting . I will discuss this with my daughter, but would agree from standing on sidelines that cognitive overexertion seems to have a different manifestation - subtle but different. We are finding that pain is ramped up at certain times of monthly cycle, so PEM then is more acute ...

All the more important that @dave30th makes an appearance .

The neurocognitive functioning being classed as normal in the CFS comparison sticks out ( until you perhaps realise that this is probably children with chronic fatigue), and this is a big issue, particularity with published papers being reviewed by NICE. I do not know of any parents of kids...