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Low mood ( again) if the overriding focus was not on fatigue ...it is not the most debilitating symptom. Perhaps then we would get better understanding

I had thought Australian stats may have been more " solid" as diagnosis may be picked up / noted due to similarities with "Q" fever?

Crossposted with @Sasha Given stakeholder role to NICE guideline , it may offer an opportunity to hone arguments and widen awareness?

Perhaps an S4ME submission ?

Preferably back to front so that they can read it when they look in the mirror having other people try and read it the wrong way round will make them feel " under scrutiny"

Saw this on Twitter. Whilst it seems a good idea, it may strike the wrong chord with some for ME. On phone so can't cut and paste large bodies of text

The draft scope will be interesting. A good opportunity for some succinct comments- though probably not from me.

Yep, they have it down to a "T". Interestingly one of my friends has a son who developed OCD after his grandfather's s death. He attended CAHMS but did not seem.to make much headway. He simply got the gist of where things were going early on and gave them the " correct" answers to be discharged...

Teenagers in particular are very good at telling you what they think you want to hear to make you go away...

A fitbit type device would also give heart rate info - perhaps this would undermine the GET narrative ...

Thanks for clarifying My post had little to do with CBT- more that other physical issues could be treated and so improve overall functioning. However when these are not picked up/ given credence it is all back to " all in your head" .

My recollection is that the teenage girls have ME. Both had glandular fever as triggers and EBV is implicated in subsequent cancer. A bit like the chance Rituximab where the patient had ME and cancer. Swollen tender lymph glands were not examined as this was " an ME thing". Sadly there have...

I do think that people with ME have significant issues in accessing testing and treatment for other conditions which by being treated could improve function ( i think this is the gist of the Twitter feed) once an ME label has been applied This point will only be made worse as MUS takes hold...

Deckchairs....Titanic.....?

Thanks @Jan Not too technically conversant re posting full twitter feeds :emoji_thumbsup::emoji_thumbsup:

From twitter Hit link.to see thread

If you have a good therapist it can be good at confidence building and validation. Unfortunately our experience at CAMHS after bullying ( pre ME) was pretty awful.

Infant mortality is also increasing

Yes; taking a longer route also enables certain personalities to exit into different roles, or cynically make any investigative work into mistreatment a bit like the current contaminated blood issue - ensure the significant people are out of the picture and significant numbers of patients are...

great news.