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

Dr Carrot

Dr Carrot

Senior Member (Voting Rights)
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

In the summer of 1989, Leonard Jason fell ill with the worst sore throat of his life. He couldn’t shake it. As the leaves turned red and gold that fall, his energy and weight dropped dramatically, eventually forcing him to stop teaching at DePaul University in Chicago. For 14 years, he had been a highly successful psychology professor, flush with research grants, president of the community psychology division of the American Psychological Association, and director of clinical training at DePaul. Now just a simple phone call was enough to leave him exhausted and bedbound.

The diagnosis? Chronic fatigue syndrome (CFS), a recently coined name for myalgic encephalomyelitis (ME). Jason preferred the original because it sounded less trivial. Confusion and disagreements over the disease’s name – now usually a hybrid abbreviation, most often CFS-ME in the UK or ME-CFS in the USA – have long reflected wider confusion and misconceptions about it.
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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.
 
Andy said:
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.
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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.
 
'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.
 
Jonathan Edwards said:
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.
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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
 
Robert 1973 said:
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
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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."
 
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So the blame for the discord lies with patients, and the way forward is for everyone to get in a big tent together.

No way.

Until organisations like the CMRC acknowledge that the blame for the discord lies squarely with doctors like Wessely, White, Sharpe and Crawley who do shoddy research, gaslight us and go about shouting 'harassment', there will continue to be discord.
 
Jonathan Edwards said:
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."
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:rofl:

This is such a well-deserved recognition of <<form field>>'s outstanding scientific work... etc etc.
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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.
 
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Jonathan Edwards said:
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."
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Likely a Freudian mix-up of Simon Wessely with the sometimes persecuted founder of the Methodist Church, John Wesely. John had a better stylist.


wesley.jpg
 
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Esther12 said:
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 least 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 to.
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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...
In the end, it took ten years. Jason and his colleagues called thousands of people at random and took them through a questionnaire of symptoms, eventually updating the official estimate of the number of people in the USA with CFS-ME from 20,000 to 800,000. (Due to population growth, estimates since have risen to 1 million in the USA and about 250,000 in the UK.)
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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.
 
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Lucibee said:
Mosaic (Wellcome Trust) seem to be promoting this article again on their Twitter feed for some reason...
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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.
 
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