Search results

I was asked about my personal experience. I said that GET doesn’t work and backed it up with the survey that we had already submitted to Peter Barry (I am also a stakeholder representative of a national group of parents of children with ME/CFS). I said that I came to the conclusion that the...

I was told during the interview that my views on GET and CBT would be seen as a conflict of interest. Followed by a lot of questions about how I would handle other members of the committee who did not share my views.

I did not declare any COI.

Not that I am a doctor but I was interviewed for the lay member position and was told that my stance on GET and CBT is a conflict of interests. I obviously did not get the job. Peter Barry was one of the people interviewing candidates.

Anbu was on my table at the scoping meeting. I am horrified that he’s on the committee. There was a big argument between him and myself plus Tony Crouch on the other side. This is what I posted here at the time: We had a clinical lead of one of the paediatric CFS/ME specialist services in our...

We had a clinical lead of one of the paediatric CFS/ME specialist services in our group. I will refer to them as they, to avoid he or she, since we are not disclosing :). When I brought up the issue of there not being aids and adaptations mentioned for the guideline, they went on to say that...

I think we could start by looking at websites. There is often so much rubbish on there that I wonder if they are actually being serious. The Royal Free Hospital for example; hard to know where one starts on that. Promoting PACE, lumping depression and anxiety with CFS/ME and I especially ‘like’...

Being labelled with something else and/or dumped is actually the better option. You can also get accused of not engaging, not following what they say (they control every minute of the day and night) and therefore stopping your child from getting better (never mind that the current guidelines say...

Thank you

Thank you

It’s all psychology based. Been through the admissions “treatment” and have nothing positive to say.

If you want to learn more about dosage, circadian rhythm dosing, pumps etc, then the best place to read through is CAHISUS on Facebook. The posts are by Prof Hindmarsh. He also published a book. He addresses all types of adrenal insufficiency.

Well, UCLH run their paediatric CFS (never call it or diagnose anyone with ME) as MUS/CFS. Here’s a picture from the waiting room.

Thank you

I also attended the meeting (you might have spotted me as the 6ft tall woman with a scarf on her head! Lol). I was in the group that moved out of the room and Peter Barry spent the whole discussion with us. Let’s just say that he definitely did his homework and he is pushing for patient/carer...