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Yes, it seems to be another condition where diagnosis is a huge issue. I have a friend who took years to be diagnosed, and only through her own persistence. ETA subsequent reports of pain were then dismissed as related to endometriosis for over a year. When she managed to get investigation...

I think the Jenga game may be about to commence in earnest. If there is replication with a different control does the cognitive dissonance get worse? How many sticks have to be removed before the whole thing falls down?

Oxford/ Fukada for CFS?

In a row?

I would love to concur Barry, but given the prolonged feet dragging re more than one paedophile enquiry it would seem children and the establishment are not a match made in heaven in the UK Power is a very asymmetric construct as manifest here .

Yep. Sore throat. Multiple swollen glands ( i never knew there were so many prior to my daughter getting ME) PEM brings sore throat on but glands in some form being swollen seems to be a pretty constant feature - just the degree of inflammation that changes. Voice getting croaky/ hoarse...

Definitely worth tweeting

Yes that is a good point. Also deflects scrutiny from Bristol - breathing space before MAGENTA reports/ publishes. There also has to be a published evidence base for NICE - cue recent flurry of child and adolescent papers , sadly not really worth much given money spent.

Is it worth tweeting to Coyne with smile data ? He has quite a few followers. @JenB - this is kids! Dr Geraghty had been prolific recently too - I don't know if he can comment too? A critique is needed of both If these are the quality for an evidence base for NICE then not much positive change...

That is what makes this more concerning. Overall reputation of the institution bestows a confidence that may not be merited

That supposes you consider the underlying condition to be real

I think a non understanding of PEM underlies this. My daughter on this scale is 25-30. On a good day, yes she could potentially walk with a cane to the top of our road and back, resting en route ( the road is approx 70- 80 m to top). She would then not be able to do much else for the rest pf...

We did have a member with direct experience - not positive. She was also deemed to have a COI for NICE Guidelines ( potentially due to stated views on CBT/GET) Sorry can' t remember her name

Shared amongst Facebook closed groups with suggestion that Glasgow venue could use it on 11th ( George Square so big footfall potential) How much would it cost to screen on OMF Times Square pitch ?

Brilliant article @chicaguapa

Thanks @Adam pwme . this is a very powerful advocacy resource. we need to get it beyond the ME sounding baord that is sufferers and their families and into mainstream .How should it best be used? can it be projected onto buildings for ME awareness on 11th?

H Here there is a coded system. with specific codes for authorised and unauthorised attendance - separate codes for medical appointments etc. It can break down if you are on a reduced timetable - there is a signing in and out process at the front desk and this data is entered onto the...

In Scotland all hell broke loose over illegal data sharing between schools and third parties ( including health , social services) a few years ago. There has been a significant court judgement regarding this and some parents are pushing for and enquiry. Politically it is too sensitive and i...

me neither.

well done @Tilly