United Kingdom: ME Association news

I'm given to understand that the magazine has not been delivered today.

 

Good idea @Hutan, sorry to be a pest but can we have a yes/no poll on that thread as well?

 

I agree, this is awful. This idea of needing 'balance' reminds me of the false balance we had for years of having climate-change deniers up against climate scientists every time that climate change was discussed on the news. The MEA seems to be seeking to balance a BPS view with a biomedical one.

 

Un-bloody-believable. They are going to try to ride this out, despite over 1000 people adding their names to a very measured letter.

 

If this reply is by the Magazine’s editor it repeats the Chair’s failure to understand what is going wrong, reinforcing the concern that the issues with the MEA are systemic.

It hints at a potential contempt for people with ME echoing their failure to address our concerns about Sarah Tyson’s comments here.

[edited to add final sentence]

 

This could reflect a problem of a small number of people in control for a long period, when it becomes ‘THEIR’ organisation and any criticism is seen either as a personal attack or reflecting the critics’ personal failings.

Undoubtedly the MEA has done a tremendous amount of good and a relatively few people within the organisation have historically done an immense amount hard work. However that alone is not sufficient when to the general public the MEA is seen as the voice the ME community in the UK.

 

Is the MEA not active yet at @meassociation.bsky.social.
There is an account with 106 Followers but no posts.

 

Yeah
WOW
I know I’m just a person, but I’m a person who used to have a corporate job. I just cannot fathom the emotive/personal feelings output with the MEA (and Tyson) organisations and their reps just don’t behave like that in my world! This language about people being “silly, nonsense, baying for blood” it’s wrong, it’s outdated, it’s unhelpful and unprofessional. That it comes from a charity to its so-called target demographic - sick people who have been maligned is crazy! This is the sort of naive reply I expect from the boss of small local business to a bad/unfair trip advisor review.

 

While looking to see if MEA had issued any further response to this I came across this Bluesky post containing an image of another curious Riley article, apparently from their newsletter way back in 1989, that I had never seen before:

 

is he suggesting everyone gets a trip to Australia at 2.5yrs?

The ‘5 weeks since I’ve arrived’ makes it sound like he’s preaching from the other side of the world in the sunshine to everyone in the Uk he left behind ‘fir his health’ and the main lesson seems to something different to actually doing as he did?

 

MEA cannot promote both NICE guidelines and anecdotal evidence.

 

“The MEA cannot listen only to the few who are baying for blood, or only to the many who welcomed Neil's editorial.”

If true, that is very surprising. Why would “many” people with ME use their scarce energy to contact the MEA to welcome an editorial repeating advice we have all heard a million times from doctors, family, friends, total strangers and medical know it alls of all stripes? “Many” people don’t write in to Sainsbury’s to thank them for selling milk. What would be the point?

And why are these people contacting the MEA but not commenting on social media? If there are so many of them, surely they would have no fear of pile ons? If they’re not on social media, how do they know the MEA is under pressure and that they need to express support?

Unless of course these “many” people are mostly not people with ME at all, but people professionally associated with the fear of movement belief i.e. MEA’s friends at BACME. They have every reason to welcome an editorial which might help to prop up their broken business model a little longer, and every reason to do it privately rather than publicly.

 

Aren’t four of those categories basically different ways of flagging the same issue: that Neil’s article was not on?

and i think they can assume that includes his non apology

so then there are apparently some who have sent praise of something (Neil and his article? Or eg Charles shrpherd?)

anyway they’ve a petition of 1000 so have they clocked (or got the petition in order to clock) is those emails are saying the same thing as tgsf petition as a whole message?

 

Eek I think he thinks that book was an actual psychology science textbook ?

the good thing for him is it tends to be a title one can pick up from the airport bookshops

yes that last one is better known from aesops fables isn’t it and commonly used at primary school assemblies as he will know full well, so I’m not sure he’s kidding anyone that the aim of his message is to ‘be helpful’

It seems it’s hard to come up with a comment that isn’t underplaying his own words. They are textbook in themselves

I second @Hutan in pointing people to read the full blog post