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Slightly off putting that Sadie has the initials SW! Seriously though a great interview and transcription. Thank you both.

Liking your comment on the end of this @Graham

The 250 K figure has been around for ages, certainly since my daughter became ill in 2010. Still, if it is c 0.4%, then a current population of 66.04 million, only gives 264,360. Maybe we could say at least 250k or stress that record-keeping is abysmal...

So what is Low Frustration Tolerance: Doctor's view: "Frustration tolerance is the ability to withstand obstacles and stressful situations. Decreased frustration tolerance is a common behavior problem of people who have brain injuries. Low frustration tolerance can be a direct result of brain...

Excellent article @chicaguapa

Well done @JohnTheJack, you are a star :emoji_boom::sun:

I know a mum who has an appointment on Tuesday. They say will then discharge her daughter if she does not follow their GET/CBT program, The daughter has found GET pointless previously and resents the 10 min diary-keeping aspect. If sh eis discharged ,who will write letters for EHCPs for 16-19...

Unbelievable - AGAIN :banghead::banghead::banghead::banghead:

Thanks Andy. We were away celebrating my daughter's birthday o/n in Brighton, so could not attend the event. Another time I may well be able to go as Oxford is quite drivable for me. However looking at the program, I'm not sure my last century Physiology and Biochemistry degree would have been...

My daughter and I felt and looked much healthier after 2 weeks in Crete in an all-inclusive hotel in July 2015. No food/drink shopping as all included Able to follow a holiday routine. Up at 10, some of the aquacise in the pool. Lots of sunbathing and lounging, eating and drinking Some days 15...

It is VERY INTERESTING that UCL/Gregorowski team is publishing NOW. AFAIK Anna G has not done much "research", other than that relaing to her PhD, which I assume is covered by a paper in Arch Dis Child 2004. https://adc.bmj.com/content/89/7/615 Basically it says that their "rehabilitative...

Enough about us for now, but I will post more re current UCL approach another time.

One of GOSH/UCL recommendations is to limit all screen time to a max of 4 hrs/day. Other than avoiding it for an hour or so before bed and not being glued 24/7, this seemed impractical and harsh, especially for teens who are unable to attend school or socialise for more than an occasional few...

Why did we go for 6 months: For a medical letter explaining her illness and thus delay in education, for when she recovered and applied to Uni. Anna G actually rang and explained the reality and implications of the illness to a family member who did not "get it" at the time. This did help. We...

The clinical psychologist chats were OK. Anna Hutchinson never gave the impression that A had anything other than a REAL illness. She was generally very supportive and we did find out that A was now feeling responsible for her younger brother helping/behaving when my back was bad. Older bro had...

The sessions, monthly for 6 months comprised a one to one "goal setting" session of A with a physio, followed by a family chat session for a second hr, with a clinical psychologist. I think A was relatively happy with the physio sessions. They were talk, not exercise, based. I was allowed in...

At her initial assessment we were asked if 2 other people could sit in. One was doing research (prob PhD) on cortisol levels, which seemed reasonable. The other one said at some point that she had been reading research on how deconditioned people became after weeks of bedrest. Having been...

I had forgotten that the appointment began with questionnaires. I think we completed them at GOSH, some for A and some by us. Then A was taken for a physio assessment, on her own. We did not realise that this included sit-to-stand, cycling and some other exercises which she was encouraged to do...

Our initial appointment, to confirm that A had ME, was a discussion with Anna G and the three of us. I got to the room slightly after A and her dad had begun. This is only significant because Anna had already asked them to decide where on a scale of 1-100, where A's current activity or...

We have direct experience of GOSH. My daughter went there, with us(parents) in spring 2011 The team there under Anna Gregorowski (nurse specialist who did a PhD in ME and is sometimes referred to as Dr Gregorowski now) subsequently relocated to UCL. As a member of a couple of Parents Facebook...