Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

[trishrhymes]

Thanks, @jstash for your useful insights.

We have raised money for a journalist to do in depth analysis - David Tuller. And he's doing a great job. But being in America, it's likely it will be difficult for him to get a piece published in the British Press. He has in the New York Times among among others. Any suggestions as to how he could cut through into the UK press? People to contact etc. I'm sure he'd be pleased to hear.

 

[CFSTheBear]

Thanks, @jstash for your useful insights.

We have raised money for a journalist to do in depth analysis - David Tuller. And he's doing a great job. But being in America, it's likely it will be difficult for him to get a piece published in the British Press. He has in the New York Times among among others. Any suggestions as to how he could cut through into the UK press? People to contact etc. I'm sure he'd be pleased to hear.

Thanks Trish - I'm aware of Tuller - his reporting has been excellent, fearless and rigorous.

As for people to pitch to - I will have a think. I have friends in commissioning roles at some magazines here as well as several freelance friends who may be able to advise as to where being best to pitch. Off the top of my head, it may be that a political magazine may be a good start - maybe something like the New Statesman? But I will have a proper think and get back to you - am currently in the process of writing to my (very good) local MP re: NICE so am trying to save energy on that front.

Oh - I think one other thing is important to note - just because a publication has posted crap articles re: ME in the past doesn't mean it won't change its tune. Yes - editors tend to be longstanding and institutional bias exists...but staffs change, narratives look different after 5/10 years and things can move on surprisingly quickly if someone new is in the chair. Always worth re-pitching ideas to places and not writing them off.

 

[Marco]

OK, I agree with all of that. I guess I was just making the point that the problem in the UK is not the press being stifled by government. The press choose to stifle themselves as part of the cosiness you mention and ultimately the press run the whole show anyway.

Old-school investigative journalism seems to be a thing of the past for sure.

 

[RogerBlack]

Oh - I think one other thing is important to note - just because a publication has posted crap articles re: ME in the past doesn't mean it won't change its tune. Yes - editors tend to be longstanding and institutional bias exists...

Plus perhaps assuming bias which might be long-standing, in the face of a crap article which may have been driven by shoddy reporting, not a desire to push one side or the other is another issue.

I find it moderately unlikely that - on balance - all editors care enough about ME/CFS to actually bother to have a fixed position.

 

[Esther12]

I feel like there's now already so much good work out there that we don't really need to fund another investigative journalist... we just need people to fact-check, write up and publish the investigations that have already been done by others! There is more investigative stuff to be done, digging even deeper into things, but at the moment we're having difficulty getting the simpler stuff published anywhere.

 

[Barry53]

Plus perhaps assuming bias which might be long-standing, in the face of a crap article which may have been driven by shoddy reporting, not a desire to push one side or the other is another issue.

I find it moderately unlikely that - on balance - all editors care enough about ME/CFS to actually bother to have a fixed position.

Some day in the future looking back, people will (hopefully) see that attitudes did change thanks to all manner of advocacy and common sense endeavours, which by definition means that during that period of change there were people and institutions whose established positions were shifting. We are living that period of change, it is the present.

 

[Barry53]

I feel like there's now already so much good work out there that we don't really need to fund another investigative journalist... we just need people to fact-check, write up and publish the investigations that have already been done by others! There is more investigative stuff to be done, digging even deeper into things, but at the moment we're having difficulty getting the simpler stuff published anywhere.

I think the more investigative journalists (real ones that is) on the case the better. But I also think getting too carried away with crowd funding could be counter productive.

 

[CFSTheBear]

Does anyone here have a link to reach out to David Tuller? Have got a few names that may be useful for him to get in touch with in order to publish in the UK.

 

[AndyPR]

Does anyone here have a link to reach out to David Tuller? Have got a few names that may be useful for him to get in touch with in order to publish in the UK.

A couple of social media ways of getting in touch with him
https://twitter.com/davidtuller1
https://www.facebook.com/david.tuller.1

@Jonathan Edwards @charles shepherd @Tom Kindlon might have an email address perhaps they could pass on?

 

[charles shepherd]

A couple of social media ways of getting in touch with him
https://twitter.com/davidtuller1
https://www.facebook.com/david.tuller.1

@Jonathan Edwards @charles shepherd @Tom Kindlon might have an email address perhaps they could pass on?

I think I may have already been in contact with jstash…...

David does not participate in social media discussion groups but knows what is happening!

I am in regular contact with David and can pass on useful information - but it does need to be new and useful. He is well up to speed with PACE, NICE, and the political complexities of how the media covers ME/CFS here in the UK

CS

 

[Jonathan Edwards]

David does not participate in social media discussion groups but knows what is happening!

I am in regular contact with David and can pass on useful information - but it does need to be new and useful. He is well up to speed with PACE, NICE, and the political complexities of how the media covers ME/CFS here in the UK

Agreed, David is in the loop with a number of us here and we meet quite often. We also have contact with a number of freelance and paper-based journalists and I suspect we have a rough idea who might be helpful. One has to be careful because, as jstash will know, a journalist is under no obligation to make a contact look favourable when it comes to the story coming out. There have been issues before. Nevertheless, more names can do no harm. I think the climate is becoming more favourable quite quickly. I plan to have lunch with a couple of reliable people once I get back to town when summer is over. I think there may be scope for widening the agenda but one has to move step by step.

 

[trishrhymes]

I think the suggestion was that @jstash has contacts with media people who commission articles and could put David Tuller in touch with them.

 

[A.B.]

Let's all start calling PACE what it is: fraud, and an important piece of a larger agenda to exploit and oppress patients for financial gain.

 

[Jonathan Edwards]

- the charges of Murdoch running the government are, I've got to say, fairly hyperbolic.

- when it comes to journalists etc, I think it's helpful for me to explain a little how structured a reporter's day typically is.

Thanks for the insights jstash. I might respond that since our Secretary of State for Health presumably only has that job because he covered Cameron's backside, along with Murdoch's, any chance of Murdoch not influencing Health policy is remote. OK Murdoch may not be selling the papers he did but that is not the point I was making.

Note that Jerome is freelance and submitted this as a proposal because he is interested in trust between doctors and patients on a wide basis. He does not produce copy to order as far as I know.

I think there is a problem with crowdfunding an investigative journalist in the UK because the targets will just turn around and point out that the patients are so malicious they even put private spooks on to you. And the public is quite likely to swallow it. David is fine because he started off on his own initiative. There are some investigative journalists in the wings who might come on board but I think it would be best if it is their initiative too.

In a sense we now have the story out there in print for all relevant audiences. The public do not really need (or want) to know more I suspect. The professionals and bureaucrats who are stalling the process of change will be informed by the JHP issue and from patients via DM.

Media people have expressed interest in digging deeper but at the moment are sitting on the fence. Something which I think may be an issue is that the media are seeing the case from ME/CFS advocates presented in various forms, which do not necessarily quite line up. That is bound to happen a bit but media people like to present a group of people singing from the same hymn sheet - certainly for TV. And ME is hard for people to understand so there is caution.

My feeling is that fairly soon there will be an opportunity to raise some deeper issues. And I think both advocates and journalists are now reasonably well primed about how to respond. Up until now it has been standard for anyone putting their head above the parapet to get a drubbing from a knight of the realm. I think that may change.

It isn't really that anyone has been afraid of being sued for libel by these people in the past - some they thought they WERE the experts and some did not want to get sacked for rocking the boat. That looks a bit different now.

 

[A.B.]

In a sense we now have the story out there in print for all relevant audiences. The public do not really need (or want) to know more I suspect.

I think the public does want to know how bad the situation is. Many other patients will sympathize, and this is all happening in the context of politicians that seemingly want to destroy the NHS. Offering cheap but ineffective/harmful treatments for a serious illness, based on fraudulent science is in line with the apparent plan to destroy the NHS.

This kind of bad science threatens everyone, not just ME/CFS patients.

 

[Jonathan Edwards]

I think the public does want to know how bad the situation is. Many other patients will sympathize, and this is all happening in the context of politicians that seemingly want to destroy the NHS. Offering cheap but ineffective/harmful treatments for a serious illness, based on fraudulent science is in line with the apparent plan to destroy the NHS.

This kind of bad science threatens everyone, not just ME/CFS patients.

Those are the deeper issues to tackle next. To do that effectively I think there need to be specific opportunities to react to. News has to be NEWS. Channel 4 documentaries are a bit different but they need investment and the media people have to be happy they have a story that will pan out.

I think the way things shape up with NICE and Cochrane may provide some opportunities. These organisations have got the message that all is not quite as cosy as they thought. The question is which way they jump.

 

[A.B.]

Those are the deeper issues to tackle next. To do that effectively I think there need to be specific opportunities to react to. News has to be NEWS. Channel 4 documentaries are a bit different but they need investment and the media people have to be happy they have a story that will pan out.

I think the way things shape up with NICE and Cochrane may provide some opportunities. These organisations have got the message that all is not quite as cosy as they thought. The question is which way they jump.

A relevant point is that there clearly are efforts to expand this Alice in Wonderland medicine to a range of other conditions (MUS, psychosis, MS, and probably many others).

 

[Marco]

I think the climate is becoming more favourable quite quickly. I plan to have lunch with a couple of reliable people once I get back to town when summer is over. I think there may be scope for widening the agenda but one has to move step by step.

I don't know what's in the pipeline or what leverage can be brought to bear - I don't need to know and I'm happy to sit back and let things take their course. But I'd also like to voice my appreciation for people like you who have no dog in the fight per se and also can't be hand-wavingly dismissed, for voluntarily getting involved in all of this.

So... thanks!

 

[A.B.]

A relevant point is that there clearly are efforts to expand this Alice in Wonderland medicine to a range of other conditions (MUS, psychosis, MS, and probably many others).

Just published: feasibility of PACE-style CBT for stroke victims with fatigue.

https://twitter.com/i/web/status/898287248822591489

 

[alex3619]

I find it moderately unlikely that - on balance - all editors care enough about ME/CFS to actually bother to have a fixed position.

I think this is likely. Once the political climate around ME and CFS starts changing then we might see a big change in media responses. This is most likely to happen after major news events, probably on the science, especially if there are a few of them in a short time frame. I wonder how they will respond if the Rituximab phase 3 trial has remarkable success?