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Ah - this is patient engagement. Ticky box

Shared on whatsapp and Facebook and has got to Sweden, France, US so far

I do not have a scientific background, and am particularly grateful for this forum for the clear explanation of the multitude if affected systems and factors. Being relatively new to ME, with little statistical background, some threads are more challenging than others. My main concern with...

Perhaps illustrates the gulf between theory and evidence.

No doubt a PFI building

I hope that you get something positive out of this, and treatment if required.

We didn't get a copy of my daughter's. Noted as " inconclusive" as the amount of breath eas not consistent enough ( is this not oart of the reason to do this?). Nurse also did not believe that she was trying her hardest- she simply could not exhale over a long timeframe - ran out of puff. No...

Watch out- that often lulls you into a false sense if security...from the other post re liME letters, confirmation bias and cognitive dissonance are still alive and well

Royal Free outbreak was not benign either. When Prof Behan tracked down survivors decades later it was clear that few if any had " recovered". Ongoing illness had been a part of their lives .

My daughter had test done last Monday. The test itself is very straightforward. As her sleep cycle is out of phase this had a larger PEM effect than others may experience. She was in bed for 2 days afterwards . Happily back to " normal" level by Friday.

The push here is to have CAMHS staff in schools. Putting the onus on teachers just dosn' t work.

My aunt is severe ( function around 7-10%). She can' t even get a home visit, or the yearly bloods she is supposed to get. She has POTS symptoms, heavy metal issues (lead), and GP has basically said that there is nothing more to be done for her .....

In the third pig's brick house

And in the tradition of Roald Dahl, Little Red Riding Hood has set down her Revolver, lit a fire, put her feet up on her pigskin travelling case and no doubt is enjoying a large gin

I have met Keith and he does seem clued up. He is aware of the impact GET has, and the effectiveness of some supplements, complementary therapies for pain etc. His experience could be useful educationally as GPs are not clued up at all ( at least where i am). He does seem to have the respect of...

Sounds similar to some psychiatrists

I feel the effectiveness of any CBT is critically dependent on the person delivering it and the willingness of the person trying to engage with it. My experience is related to adolescents (6), mainly for anxiety, 2 with private providers 4 with NHS. Of the 2 private attendees, 1 subsequently...

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