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Certainly the CFS clinics are not all that either and only a small minority have any medical involvement. The best thing probably @Tara Green may be to seek out others in your area - maybe a local Facebook Group? who may have had contact with the CFS clinic to find out what actually happens.

Surprised at the suggestion the CFS clinic would do any tests at all I don’t think that’s the norm. Unless they count the questionnaires as tests. Maybe they got it the wrong way round.

Ausgezeichnet

Well done @Ariel

Maybe worth contacting him to see if he’s got it on his radar again

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.