Gizmodo Article:The Battle to Finally Understand Chronic Fatigue Syndrome

[user9876]

I understand why people have concerns about article. I have concerns about sections of it too. What I am pushing back against is the mistaken notion that the PACE people somehow manipulated this magazine and this writer into doing their evil bidding.

The biggest impression I get is that she doesn't quite understand the issues. But I noticed in the comments Mary Dimmock say she feels her comments were taken out of context and didn't reflect the point she was making. I felt that @Jonathan Edwards comments were taken out of context to suggest he or IiME were setting up a rival to CMRC when he has supported the CMRC and the European initiative is a different thing pulling in a wider group of researchers (and potentially EU money).

Then I wonder if Crawley was misquoted about FoI requests (as I've not seen ones aimed at her) and I assume she was repeating Whites standard messages.

She also repeated the line pushed out the recent line being spun by Sharpe pretending they had positive results for the long term follow up.

This phrase seemed strange

Amid the divisions and the infighting, two separate reports published in the USA in 2015 called for more coordinated research on CFS-ME and huge hikes in funding (in 2014, CFS-ME received about $5 million in research funding in the USA; many think $250m would be more appropriate).

It seemed to suggest that the two separate reports were intended to give rival positions. I never understood the links but there did seem to be some sense of co-ordination and that they were looking at different things.

Holgate reads a bit like a manipulative twat in the quotes but I would be surprised if those were the things he was trying to say or emphasize. He tends to want to talk about multiple pathways and the CMRC as a way of getting research going but his quotes come across as blaming patients and trying to find ways around the 'all powerful' patent groups - which is a narrative put in place by the SMC. Which seems to be a line being pushed by Crawley (who I really dislike having encountered her as a doctor!).

I guess its an article that covers too much ground for someone putting their toe in and trying to sort things out in a limited time as a freelance journalist. I worry that too many articles talk about divisions rather than what is being achieved and future directions for the science.

 

[RustyJ]

The biggest impression I get is that she doesn't quite understand the issues.

Yes. The use of Mary Dimmock quote is very troubling as It is difficult to see how a journalist who supposedly worked so hard on the article could have come away with such a wrong impression after an interview.

Sometimes you hear what you want to hear.

 

[user9876]

Yes. The use of Mary Dimmock quote is very troubling as It is difficult to see how a journalist who supposedly worked so hard on the article could have come away with such a wrong impression after an interview.

Sometimes you hear what you want to hear.

I think it is a complex area where different people have contradictory narratives of what is happening. So I can see how a journalist would find it hard to weave their way through it all and that is what I'm reading into this article.

 

[Wildcat]

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Can the quotes in this article from the UK CMRC Professor Stephen Holgate be explained away as the journalist 'finding it hard to weave through contradictory narratives' ?

I don't think so.
.

 

[RustyJ]

I think it is a complex area where different people have contradictory narratives of what is happening. So I can see how a journalist would find it hard to weave their way through it all and that is what I'm reading into this article.

It's part of the job. As you can see, the consequences of getting it wrong can be serious. BTW, it is why there are editors etc.

 

[user9876]

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Can the quotes in this article from the UK CMRC Professor Stephen Holgate be explained away as 'finding it hard to weave through contradictory narratives' ?

I don't think so.
.

Given Mary Dimmock thought her quotes were taken out of context maybe Holgate's were as well. Its not clear.

 

[worldbackwards]

Given Mary Dimmock thought her quotes were taken out of context maybe Holgate's were as well. Its not clear.

It's a lot easier to see how hers were taken out of context than his. Holgate has always been slippery, saying different things to different groups. I don't find it surprising that this is his line at all.

 

[Wildcat]

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@user9876 wrote: 'Given Mary Dimmock thought her quotes were taken out of context maybe Holgate's were as well. Its not clear.'



And the journalist was so lost in the 'contradictory narratives' that she managed to not only repeat, but amplify and grotesquely embellish, some of the most egregious media stories on ME and the patients? And even claim that a member of the UK Medical Research Council (Prof Stephen Holgate) said it to her?

If Stephen Holgate actually did say those things then we have a scandal of massive proportions in relation to the UK ME population trust in the MRC in general and in the accountability of the MRC Collaborative on ME in particular.
.

 

[Bob]

I understand that this is a lot of ask of a journalist. This is a complex issue and needs a lot of background knowledge to tackle it.

I think there is something we can learn from these articles. I honestly don't think these journalists set out to harm the patient community. When speaking to Isabel Hardman (Spectator) I was struck by how upset she was that people were criticising her article. She seemed to take it very personally and I think this was because she honestly thought that she had written a very balanced and fair article. Whereas, from our point of view it was fairly toxic. It shouldn't have taken her by surprise, but it did. I mentioned that it is an incredibly complex subject, and that these are issues that journalists couldn't begin to understand unless they'd been consulting deeply with the patient community. I suggested that in future she sought patient input before publication rather than reacting to frustrated patients afterwards. Notably, there's a glaring omission in both articles - a lack of a patient voice. Like we are invisible. Why are we invisible to journalists? Is this a failing on the part of our community? What can we do about it? We need to get ourselves visible and heard. Could we put any systems in place that make it easier for journalists to consult us before they publish rather than only after they publish? Can we make it easy for journalists to contact us when they're writing an article?

 

[user9876]

I suggested that in future she sought patient input before publication rather than reacting to angry patients afterwards. Notably, there's a glaring omission in this article too - a lack of a patient voice. Like we are invisible. Why are we invisible to journalists? Is this a failing on the part of our community? What can we do about it? Could we put any systems in place that make it easier for journalists to consult us before they publish rather than only after they publish?

I think there is a problem in that where do journalists go to get patient opinions. AfME seem to pick up quite a bit but .....
There have been some better recent articles where journalists seem to know patients.

 

[Sasha]

Notably, there's a glaring omission in this article too - a lack of a patient voice. Like we are invisible. Why are we invisible to journalists? Is this a failing on the part of our community? What can we do about it? Could we put any systems in place that make it easier for journalists to consult us before they publish rather than only after they publish?

Superb comment, Bob.

I think we need them going to an organisation run by patients that doesn't have its hands tied by any other considerations. #MEAction would be my favourite - it's patient-led activism, basically, and that's its entire focus.

I don't know how to get journalists aware of it.

What do you think, @viggster?

 

[Dx Revision Watch]

It seems that in the UK, challenging authority is considered threatening or should I say vexatious. Would members of the press or the UK scientific community consider the exchange between Countess of Mar (House of Lords & ME/CFS sufferer) and Sharpe et al, vexatious? Need I go on?

http://www.meactionuk.org.uk/Latest-Independent-on-Sunday-correspondence-130113.htm

 

[Dx Revision Watch]

Here is a detailed account from a QMUL FOI claimant regarding his experiences and analysis of ludicrous vexatious claims against the PACE authors. If there was orchestration of this issue, his findings are relevant to this discussion.

Bit of content here from Outcomes Tab > Policy Influence Tab

http://gtr.rcuk.ac.uk/projects?ref=G0200434

Description Information Technology Act of 2014
Geographic Reach National
Policy Influence Type Participation in a national consultation

Impact The IT Act of 2014 includes an exemption to the existing Freedom of Information Act 2000, to exempt current research from the FOI act requests, so long as release of data can be shown to be detrimental to the research. This will protect UK research in the future, and the PACE trial, which has taken 168 FOI requests since 2011, with some damage to the trial as a consequence, provided a precedent that helped to move this exemption forward.
URL http://www.justice.gov.uk/downloads/information-access-rights/foi/foi-exemption-s22a.pdf

 

[worldbackwards]

Notably, there's a glaring omission in both articles - a lack of a patient voice. Like we are invisible. Why are we invisible to journalists?

For patient opinions, journalists will take the obvious short cut of going to support groups. If, like Hardman, they go to AfME, is it any surprise that they come away with a load of rubbish that denigrates patients? It's been notable that AfME types on Twitter have been occupying a three wise monkeys attitude over the Tuller article. I'd be happy enough if they came away with quotes from Charles Shepperd and Neil Riley.

 

[Bob]

I think we need them going to an organisation run by patients that doesn't have its hands tied by any other considerations. #MEAction would be my favourite - it's patient-led activism, basically, and that's its entire focus.

Yes, I was thinking that the same about ME Action. Phoenix Rising could do the same, but we haven't put the systems in place for that sort of thing.

 

[RustyJ]

Impact The IT Act of 2014 includes an exemption to the existing Freedom of Information Act 2000, to exempt current research from the FOI act requests, so long as release of data can be shown to be detrimental to the research. This will protect UK research in the future, and the PACE trial, which has taken 168 FOI requests since 2011, with some damage to the trial as a consequence, provided a precedent that helped to move this exemption forward.

I am getting a bit tired. Am I reading this right? They passed legislation to protect the PACE trial data?

 

[Sidereal]

Bit of content here from Outcomes Tab > Policy Influence Tab

http://gtr.rcuk.ac.uk/projects?ref=G0200434

Description Information Technology Act of 2014
Geographic Reach National
Policy Influence Type Participation in a national consultation

Impact The IT Act of 2014 includes an exemption to the existing Freedom of Information Act 2000, to exempt current research from the FOI act requests, so long as release of data can be shown to be detrimental to the research. This will protect UK research in the future, and the PACE trial, which has taken 168 FOI requests since 2011, with some damage to the trial as a consequence, provided a precedent that helped to move this exemption forward.
URL http://www.justice.gov.uk/downloads/information-access-rights/foi/foi-exemption-s22a.pdf

Disturbing.

 

[user9876]

I am getting a bit tired. Am I reading this right? They passed legislation to protect the PACE trial data?

I think White did claim this at some point. But looks like the FoI act will be scrapped in the UK or severely limited as there is a commission sitting in secret looking at it.

 

[RustyJ]

I think we need them going to an organisation run by patients that doesn't have its hands tied by any other considerations. #MEAction would be my favourite - it's patient-led activism, basically, and that's its entire focus.

What's wrong with IiME or for that matter the 25% Group which actually focuses on serious patients. It's not a matter of good voices being available. The SMC is feeding prepped scripts etc to the media.

 

[RustyJ]

MRC are well aware of the constituency of the various orgs: http://web.onetel.net.uk/~kickback/rime mrc meeting.htm

P.D. You could ask the 25% Group and/or RiME for help. Severely affected PWME have specifically requested that the MEA and AfME are not involved in this process. They believe their membership lists are not representative of PWME, especially the severely affected.

J.A. The process would be inclusive and involve other patient groups.

P.D. The aims of RiME are different to the MEA and AfME. Whereas the latter are perceived as representing PWME and CFS, RiME is about strictly defined ME.