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Here’s an article by ME research U.K. which mentions some research on ataxia in people with ME http://www.meresearch.org.uk/walking-co-ordination/

Money being spent on this “research” is a catastrophe

Definitely flu-ish and with a hint of hangover on worst days

An interactive paper based approach perhaps - all that jumping onto paper squares..........or is it circles

:wtf:

Yes brilliant news @Woolie Ties up with the NIH finding a number of people have other conditions. NICE and NHS to take note!!!

FITNET 5th Protocol sounds like some dystopian science fiction film.

I reckon I will never be able to see or think about a BP monitor without thinking ah the Moron

Read this and thought it ok until the last paragraph which spouts the usual this can be helped with GET/CBT. If they would cut that paragraph......

I think it will be beneficial for the perception of ME generally the more the message about the study gets out there through different routes.

Agree @MerryB. It’s like political parties and factions within parties. When it comes down to it its people that aren’t engaged with politics you have to get support from. The people who are engaged in the ME community have to reach out to those who aren’t.

Thanks so much @Andy

people with ME are at vastly different levels of engagement with the ME Community some live eat and breathe it so are aware of most things going on some who are actively engaged take particular stances or take on board a particular approach to ME which means they disagree with a lot of stuff...

May be of interest https://www.bbc.co.uk/news/health-50821327

Isn’t Edinburgh where the FND people are?

I would imagine most celebrities affected by ME are going to go to private places like Optimum and adopt the positive mental attitude think yourself better, steps to ‘recovery’ beliefs. Not helpful in explaining the reality.

@Robert 1973 John Siddle the ME Association press officer should be able to advise.

Need to make sure you’ve got the appropriate size cuff when you order.

It would be a pretty good idea I think. If people don’t want to give their contacts they could be asked for the first 3 digits of postcode. That way areas where people aren’t coming forward can be identified so more work can be targeted at reaching people in those areas. Eg in my current city...

I hope attendees take the opportunity to speak to her about the exercise review