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If anyone can find the PROMS scale from the adolescent research to compare with CFQ it may be worth doing. It may flag up if there is a difference when involving those with the illness when defining a questionnaire/ scale ( or not)

I haven't looked at references...bristol/ holland/ Denmark as a guess? When will this narrative change?

Why can't we accept that people are not all the same? Isn't cyclophosphamide pretty risky in itself?

Wood....trees... Life seems to gave been boiled down into parametric boxes to be ticked. In the process of dissection the importance and coherence of the whole is lost. This reminds me of a scene some ten years ago in a primary school playground. There was a group of childminders comparing...

Remember though that severe in paediatrics us being able to attend school for an hour. Otherwise its classed as PRS

My aunts cousin died from sepsis this year aged 67. I don' t know what the underlying trigger was. Felt unwell, brushed off by GP. Felt really unwell a week later and presented at A and E. Rushed in, died around a week later. Is this potnentially another Male/ female split re being taken...

Perhaps that this process had not been done before, and that simple aspects had not been appreciated explains the viewpoint informing the terms of engagement for NICE review for children and young people. Not a clue .

I find this sad. That research has been done for years with no patient informed context. That so little has been appreciated re effects of this illness, as demonstrated by the many changes throughout the process. Any clinician who listens to patients would have had a handle on most of the...

I thought the Havana incident had subsequently found to be related to pesticide use against Zika virus? The place had been doused with 5 times the normal amount to be on the safe side? Perhaps I am confused with something else.

Was infra sound ( low frequency wavelength) not researched as a potential weapon in 1950s?

MUS bedding in nicely?

Eyes " not working" is more a normal situation these days. It is related to energy and effort. Lack of sleep probably adds to this. Pain related I think to muscle tightness ( as well as headache) as facial muscle tightness/ pain seems the norm.these days. Optician noted that eyesight has...

One of the reasons Ron Davis advises against anti virals ?

This

Thank you @Trish , and @Action for M.E. it is encouraging that changes have been made. As you say there are still concerns, but this is a welcome step that has been addressed relatively quickly. I hope an ongoing dialogue can inform future input.

I think this may have similar issues to the engagement issues with young people with ME. Communication may be an issue, asymmetric power relationship, and their experience with authority . It's not impossible, but would have to be well thought out.

Yes, but if you cannot access testing for differential diagnoses? Here we have standard blood panels, very limited thyroid function testing and not a lot else. Medics with no knowledge and many with no interest in learning. Medics are being directed to MUS pathways. I would love my daughter...

https://www.newscientist.com/article/dn14593-wind-turbines-make-bat-lungs-explode/ Air Pressure is a trigger for my daughter - who knows what living near a wind farm may do...

Comments @PhysiosforME ?

Demonstrations have to be a bit different to stick in the collective conscience and get coverage. One of the most effective I can remember recently to make a point was disabled people " parking" their wheelchairs in parking spaces to highlight the fact that ise of disabled spaces was widely...