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This has been a sad yet hopeful thread for me, and reinforces the lack of general medical knowledge. It' s clear from the posts that my daughter in fact had a relapse in Nov- Dec 2016 after having a diagnosis in September of that year from the paediatrician. We had been given sheets on...

For my daughter PEM kicks in significantly at 48-72 hours. Next day is " tired and sore" PEM is being confined to bed with every muscle aching, headache, flu symptoms, swollen glands, more brain fog than usual and no appetite ( and no energy to eat). Just coming out of such an episode after...

There is not a lot of robust evidence of it being effective for much

Are there any objective measures, or is this another questionnaire bonanza?

If the international paediatric primer could be used as an official resource this would be a step forward - whilst consensus documents are a compromise , this is better one, and is wholly different from the UK one. The removal of GET and CBT for paediatrics too, would be valuable for those that...

The problem with highlighting harm is that parents are unlikely to complain until their child is out of the paediatric system; such is the fear. EC does not believe that severe ME in children exists. She also did not believe POTS to be a potential comorbid condition and no doubt would have been...

If you have not already looked at it, then this analysis may provide a hint for a clue http://www.meassociation.org.uk/2017/09/dr-mark-vink-and-dr-simin-ghatineh-review-the-dutch-and-uk-fitnet-trials-for-cbt-in-adolescent-mecfs-04-september-2017/ Teenagers are very good at telling people what...

From the bits and pieces i have picked up from here and the other place there seem to have been a significant number of studies , many from 1980s and 2 1990s which have been " forgotten about". ( Eg blood cell shape, colour and stickiness, Behan' s ANT theory). Given the rate of technological...

Good points. I would appreciate if paediatric issues could also be raised if possible. The "Karina" experience is alive and well in the UK Social services involvement subsequent to school attendance issues also continues to instigate stress, fear and exacerbation of illness symptoms to...

Box ticking

Oh to be able to access such testing. ......

Online CBT is more effective simply because you don' t have to expend energy getting up, dressing, travelling, having a session and going home ( not to mention the extended emotional energy worrying beforehand) it' s not really related to cbt per se. You can see this in the Dutch study where...

Thanks @Iansbergen. I had thought it might be related to swollen lymph nodes/ glands as she has these virtually all the time ( and there are some in lungs)?

My aunt had 2 occupations with chemical exposure Hairdressing in 1960s - early 1970s ( dyes etc) Floristry 1970s to 2010 - widespread pesticides I think this background affected liver and immune functions. She did seem to be more prone to infections and take longer to get over them. She now has...

Attendance is reinforced like this because it is one of the parameters schools are " judged" on. It is a trigger for social services involvement too.

On twitter

Was also featured within Independent

I am a little dumbfouded by this. From a research team who have conducted the volume of research with children that they have, i would not have expected these kinds of questions to be raised? Ethics are clearly an issue. Is this just me?

Thanks for this succinct explanation. This is one of my daughter's more frequent symptoms which would perhaps indicate immune system issues?

would this also account for seemingly perpetually swollen lymph glands?