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Just proving recycling isn’t always a good thing

I would think this should be very high up the priority list for tackling

So the follow up was for between 9/10 months. Over a 7 year period they only had that information for 316 patients, 45 a year. As usual I’m far more interested to know what happened to the people they didn’t have that data for………..

This

Any service including any element of exercise in what they promote to people with ME whether or not it is graded should be expected to demonstrate their protocol for informing the patient about the risks involved. If this can’t be shown how can they claim the patient’s consent was informed...

I did see at least one Twitter thread from people with mental health conditions who seemed to be unhappy with CBT so I think it does go wider. Would be good if it gets momentum beyond ME community :thumbup:

I would think @PhysiosforME are probably on to this

In the first sentence of the article it says the modality group covers 500,000 patients in total. Seems the article needed proof reading.

DOT?

It does. And Carol Monaghan is a member.

This area of research ethics oversight, research standards audit should be a topic for investigation by the House of Commons Science Committee.

Hopefully the organisers are in touch with the organisers of the German petition to get some ideas on promotion

It strikes me as a total non scientist that would be great if some of the engineering/systems perspective being written about on this thread could be formalised into some type of paper.

@PhysiosforME

@Haveyoutriedyoga community based means rather than one hospital based service that people may have to travel quite long journeys to get to even an hour or more each way the appointments are held at a wider spread of locations around the area so they are accessible to more people.

Wow that’s not exactly up to date is it CFIDS was a good few years ago wasn’t it? Looks like an old article from elsewhere on the web that’s been recycled

@JemPD the article on the bbc said you can book after 5 months but many people might have the jab around 6 months. Presumably assuming there will be a surge of bookings. So I think you can have the jab any time after 5 months you can get an appointment or presumably at your walk in venue too.

Not ashamed, bloody fuming

I booked my third yesterday as apparently Monday includes the previous weekend. having the jab next Monday which is 6months 3 days from jab2

Wow that is seriously impressive. I think the recent ME Action one for the NICE guidelines was the highest in the U.K. but was half as many signatures. It would be good if the team in Germany could eventually do some lessons learned on the work they’ve done on this petition that might help...