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I think the Chad (child health and disabilities) social work team have funding up to 23 or 25 and can fund some education they did fund some online tutoring for my child. But it was impossible to get anything from the schools or LEA prior to that even when the had committed to on-line education...

There is Nasai who run online lessons in the UK and have been used by some children with ME. They do live lessons and also record them in case the children can't make the lesson. But they are private and expensive. There are also on-line tutoring services for 1-1 tutoring. Both these options...

My assumption is that they are scared of their work being ripped apart by patients in the same way PACE was. But they may feel they can get away with it.

It could but there is no evidence for MUS no science to back it up so I think they won't go that direction. But expect them to slip in a MUS guideline which is contradictory to the ME one but claims the same space. (Have they already started on that?). I'm saying slip in because they will hope...

The bad reviews seem to be from ME patients saying ME isn't CFS and quoting Dr Hyde.

I thought one of the good things about the IoM report was they advised that a diagnosis should require 6 months fatigue but advice should be given before that.

I think there are also issues with the CFS services as they do not record when patients report serious deterioration from their treatments.

Is that a call for Red Panda therapy to be included in the NICE guidelines?

My wife was an OT and when she worked on a ward spend most of her time visiting patients homes with them and making sure they were safe and that patients could cope when they were discharged. From what I remember OTs specialise in different areas so maybe the wrong OTs are in the CFS services...

Also OTs can be helpful for things like equipment to help people with limited mobility. For example, we had extra stair rails put in and a bathlift with additional grab rails. Even things like advising about having appropriate seating in the bathroom and kitchen can be useful. Also the...

I think some of the doctors pushing Oxford would deny the neurological signs are neurological because the patient has CFS. Hence they could be included?

With PACE I think it is interesting to look at recruitment where they assessed 3158 patients but only ended up with 641. Reasons for drop outs included contraindication to trial treatments=84, Refusal to be assessed/Randomised=554...

There were issues with the data collection. They did phone calls to collect just the primary outcomes so there were more people not reporting the school attendance. However, since she had access to school systems this data would provide better coverage of school attendance - but she didn't use...

One of the points about doing a feasibility study would be to look at measurements. But feedback from the paticipants should just be one part of that. She should have been looking at do the measurements represent reality. Then using that information a fresh trial should be constructed - the...

I assume you could have "coping" CBT which tried to challenge depressive thoughts that were associated with being ill or other thoughts associate with not coping with being ill. But I suspect more general counseling or in some cases help with practical problem solving (e.g. how to get meals...

Do people have to physically attend committee meetings or is it done in virtual meetings (or options to join by phone) using a phone/skype.

We should also remember that FINE had a null result and was done after the NICE guidelines.

I don't think that is the issue. PACE and the other preceding trials used subjective outcomes when the trials were open label and the chosen interventions aimed at changing how patients thought about symptoms. Thus the results they are relying on for NICE are unreliable. This is demonstrated by...

I suspect they will want to cover their backs but would prefer not to have to deal with it.

I'm not surprised when scientists react badly to criticism. Sometimes you have to be quite single minded to push ideas through and in doing so ignore criticism. However, its good to listen and understand the criticisms as it can lead to strengthening the approach or the supportive arguments.