"Fighting over fatigue", Interesting long read on ME by Mosaic, who are funded by Wellcome

Hi there,

This is my first post so I wasn't sure which section exactly to post in - feel free to move this if it's not appropriate. I hadn't seen this piece before, it's from 2015. I was posting it here because:

- It contains some really good viewpoints and information (but also some stuff about Esther Crawley's 'abuse' narrative)
- While there seem to be some good articles coming through in the wider media about ME/CFS, a lot of them strike a similar tone to this (hope is on the horizon), but this was written over two years ago
- It's published by Mosaic, who are funded by Wellcome. My head is fuzzy and I'm not exactly aware of the connection between Wellcome and ME/CFS funding, but wasn't there some controversy / debate about them funding some poor research? Apologies if I've got the wrong end of the stick.

Anyway, here's the piece: https://mosaicscience.com/chronic-fatigue-syndrome-me

 

Welcome @Dr Carrot ! Great name.

With my admin hat on (which means my text turns bold orange), I have amended the title of this thread to include the title of the article. This is to make it easier to find if people search for it. I'll also move it into the General ME/CFS News sub-forum, which tends to be our catch all sub-forum for articles, even older ones like this.

 

Thanks Andy - yes I wasn't sure where to place it because it was an older piece, thank you for clarifying / sorting it out

 

Now, my personal opinion on the article. Maybe I'm being over-sensitive, or I'm comparing it to more recent articles that are more openly pro-patient, but to me it seems that there is still a bias towards the researchers even when there is discussion of the conflicts between patients and researchers.

And in regard to Wellcome, they have(had?) an observer on the executive board of the CMRC (http://me-pedia.org/wiki/UK_CFS/ME_Research_Collaborative#Executive_Board_-_2017). They are also major funders of the SMC (http://www.sciencemediacentre.org/about-us/funding/), and share the same address.

 

I do not remember reading this, despite being quoted in it several times.
It is quite interesting to see how things stood at the end of 2015.

 

'But Esther Crawley credits the collaborative for improving the relationship between patient groups and researchers. “You can question or debate, but no coordinated attacks,” she explains. And because of its ability to secure external funding, everyone sees it as worthwhile to work together.'

I would really like to know what the attacks on Esther Crawley have been.

I can understand that personal attacks in the sense of hate mail might be problem, although if it is coming from people thought to be suffering from irrational beliefs about illness based on emotional trauma I think that would be part of the job of being a doctor.

But the quote from Dr Crawley suggests that the problem is 'co-ordinated attacks'. Now, I would have thought that co-ordinated attacks would be things like letters to editors signed by a number of academics, or petitions from a number of patients, which are going to consist of argued criticism of research methodology, not hate mail. I find it hard to see how it is legitimate for one academic to critique a piece of research but not for six to all sign the same carefully worded letter.

The last sentence is also intriguing. In what sense did the CMRC have an 'ability to secure external funding'. All I can think of is that somebody thought that someone involved could pull some strings. But that would be pulling the strings for one group in favour of another group. So how could 'everyone' see it as a good thing? Sometimes the mask slips.

 

Do you think this 2012 letter to the Independent, signed by the chair and vice-chair of the CMRC, as well as most of the usual suspects, would count as a “coordinated attack” on those who disagree with Simon Wessely’s views (ie ME patients)?

http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html

 

Yes, I think one would have to regard that as a co-ordinated attack.

Edit: I see this was in relation to the Maddox prize. Intriguing to see that the supporters knew so much about Dr Wessely' fine work they even got his name wrong.

Sir Ralph Kohn FRS of the Kohn Foundation, which contributed to the prize said: "This is such a well-deserved recognition of John's outstanding scientific work for many years and we are privileged to be associated with this initiative."

 

When acclamation bots go wrong!

 

This came out soon after Tuller's big Trial by Error pieces.

To me, it read very much as if it was going to be a standard Wellcome spin piece, but then they had to change it at the last minute, so it came out as a bit of a mess. I think that the author and their editor said some things to indicate that this was the case too.

 

Likely a Freudian mix-up of Simon Wessely with the sometimes persecuted founder of the Methodist Church, John Wesely. John had a better stylist.

 

I seem to remember after being interviewed on the phone that I thought the result would be a standard spin piece. The author seemed to find it hard to believe that my critical comments could be realistic. Why would they do that? sort of thing. The end result actually looks a bit like what good journalism perhaps should be - quoting everyone and letting the reader decide.

 

This is a really excellent article. One way you can tell...

Almost no one gets this detail right, even the official agencies. In 1999 Leonard Jason estimated the number of adult US case at 836,011, but this was based on population data from 1997, 21 years ago.

The adult (18+) US population in July 2016 was 251,455,205. Using Jason's prevalence rate of .422%, that translates to 1,061,141 cases by mid 2016; an increase of 225,00 cases (↑ 27%) since 1997. This assumes the prevalence rate has remained constant over time.

 

Mosaic (Wellcome Trust) seem to be promoting this article again on their Twitter feed for some reason...

 

They are heavily linked to the SMC. They sometimes seem to play that down in relation to CFS, but I think that there are quite a few hints that they're stuffed full with SMC style prejudices.

 

Do you think they have not heard about the delay in publication of "the article"?