Suggesting an additional advocacy direction

[Barry]

I’m wondering if we might be missing a trick. I’m sure history will show us to be in a period of considerable and rapid change (even though it may not feel like it to us). Change means that advocacy opportunities can arise, but possibly easy to overlook when in the midst of such changes.

We have highlighted for a long time the major defects in the BPS approach, PACE being a major example, and rightly so. There should, of course, be no let-up in this advocacy strand; it’s crucial to keep the pressure on, and not let it slip. But I think there is another advocacy strand we might be overlooking.

Without media involvement, TV in particular, we are on an uphill struggle. But the media are petrified of getting involved in PACE-bashing etc, and are by no means convinced anyway. But I think we should be coming at this from the side, not head on. Let’s forget about a PACE-bashing Panorama-style documentary for the moment, because it’s unlikely to happen any time soon.

What the media might be much more inclined towards, is a really informative Horizon-style science documentary about some of the fascinating new biomedical science and discoveries that have been made recently, in the field of ME. And above all, it's not about bashing anyone! Just doesn’t give them a second of air time. And if it doesn’t bash them one iota (by virtue of not mentioning them), there is no need to offer them space on the programme for ‘balance’. The whole thrust of such a programme would be on the biomedical discoveries and achievements, and what exciting science it is. It would not mention CBT or GET, but where the emerging scientific knowledge shows that exercise can be harmful, then that is simply part of the reporting of that science.

If the BPS crew then want to argue their case subsequent to the reporting of some real science, then fine, best of luck to them.

I think things are moving on. There is now a lot of really exciting research bubbling under, and maybe we could and should try to build on that. It could be beneficial for public awareness, funding, attracting researchers, etc.

I just get the feeling that attacking the BPS crowd has simply forced them to dig into their foxholes, and that we maybe now see if we can gain some media traction with what really counts in the end, biomedical research. A lot has been happening recently, so maybe now is the time to se if we can interest the media in reporting on it.

To reiterate: I'm suggesting this in addition to continuing the exposure of crap BPS science, not instead of it.

 

[Snowdrop]

I have no problems with continuing to bash PACE to the centre of the earth it's a very good point about creating an alternative media of biological research.

 

[Judee]

The only problem I can see in this is, if it is someone presenting this from media/tv who is not well informed about ME/CFS, they might still end up interjecting the PACE info thinking they are doing thorough research and "presenting all options" when really they're not.

We need someone who has personal experience and/or who has a loved one who has gone through this to get the more positive message out.

 

[Barry]

The only problem I can see in this is, if it is someone presenting this from media/tv who is not well informed about ME/CFS, they might still end up interjecting the PACE info thinking they are doing thorough research and "presenting all options" when really they're not.

We need someone who has personal experience and/or who has a loved one who has gone through this to get the more positive message out.

No, I fully agree with you, but I was thinking of it much more in the sense of being closely advised/supported (encouraged maybe) by people like @Jonathan Edwards and Charles Shepherd et al. If it were left to the media themselves to do unassisted, it would likely be a disaster.

 

[Milo]

No, I fully agree with you, but I was thinking of it much more in the sense of being closely advised/supported (encouraged maybe) by people like @Jonathan Edwards and Charles Shepherd et al. If it were left to the media themselves to do unassisted, it would likely be a disaster.

The problem resides in getting them (the media) independently verifying the information. Where will they turn? Science Media Center. Where the information is all ready and packaged for journalists. Then they will check reputable sources such as Cochrane (!), UpToDate (!) and the CDC (one is getting better but still). And lastly they will land in the offices of people who are not particularily friends of PWME. Broadbent, Wessely, Sharpe, Shorter and other softer targets.

And while we have made progress in science, it remains that we still don’t have a validated biomarker and the current published litterature is not quite convincing anyone yet. I hope this changes soon.

Edit to add: this said, we have a few journalists who are keeping up with the science and have done excellent reporting, one being Myriam Tucker who has published in NYT (I believe) and Medscape. She will be there when big news erupt.

Second edit: @dave30th is another most excellent journalist

 

[andypants]

My first thought was to ask the guy who made the documentary about the trial at Haukeland. He even started a fundraiser effort for ME research, he was so appalled by the treatment of PwME after making it. He got a major (Norwegian) network to sponsor that documentary. However it would need to be available on a bigger platform, and preferably in English.

The principle is the same though, find someone who already knows how to get it done, and who can be relied upon to not mistake power for expertise.

 

[Suffolkres]

I’m wondering if we might be missing a trick. I’m sure history will show us to be in a period of considerable and rapid change (even though it may not feel like it to us). Change means that advocacy opportunities can arise, but possibly easy to overlook when in the midst of such changes.

We have highlighted for a long time the major defects in the BPS approach, PACE being a major example, and rightly so. There should, of course, be no let-up in this advocacy strand; it’s crucial to keep the pressure on, and not let it slip. But I think there is another advocacy strand we might be overlooking.

Without media involvement, TV in particular, we are on an uphill struggle. But the media are petrified of getting involved in PACE-bashing etc, and are by no means convinced anyway. But I think we should be coming at this from the side, not head on. Let’s forget about a PACE-bashing Panorama-style documentary for the moment, because it’s unlikely to happen any time soon.

What the media might be much more inclined towards, is a really informative Horizon-style science documentary about some of the fascinating new biomedical science and discoveries that have been made recently, in the field of ME. And above all, it's not about bashing anyone! Just doesn’t give them a second of air time. And if it doesn’t bash them one iota (by virtue of not mentioning them), there is no need to offer them space on the programme for ‘balance’. The whole thrust of such a programme would be on the biomedical discoveries and achievements, and what exciting science it is. It would not mention CBT or GET, but where the emerging scientific knowledge shows that exercise can be harmful, then that is simply part of the reporting of that science.
.

I watched a piece on Newsnight BBC last night which was very interesting and relevant. 26 minutes into programme.

https://www.bbc.co.uk/iplayer/episode/b0bnb3jf/newsnight-09102018 "Plus a look at how Bellingcat beat the MSM and a review of the papers"
It's worth a watch especially in terms of it's relevance to ME, the media, SMC/BBC poor journalism (James Gallagher eulogy of EC.... last year)/ etc.

It's been around for a while but to my knowledge I am not sure if the ME Community has used it? https://en.wikipedia.org/wiki/Open-source_journalism

Citizen Journalism seems to be a way forward? It is in effect what is happening with Tom K and all the other warriors!, DT and others!

Citizen journalism. The concept of citizen journalism (also known as "public", "participatory", "democratic", "guerrilla" or "street" journalism) is based upon public citizens "playing an active role in the process of collecting, reporting, analyzing, and disseminating news and information."

https://www.sourcewatch.org/index.php/List_of_citizen_journalism_websites

 

[Barry]

The problem resides in getting them (the media) independently verifying the information. Where will they turn? Science Media Center. Where the information is all ready and packaged for journalists. Then they will check reputable sources such as Cochrane (!), UpToDate (!) and the CDC (one is getting better but still). And lastly they will land in the offices of people who are not particularily friends of PWME. Broadbent, Wessely, Sharpe, Shorter and other softer targets.

Again, why I think it would only succeed if they worked pretty closely with some of our people. The point I was making is that this would be a completely different kind of documentary. Not pointing out the flaws in the BPS stuff, but taking a very different yet highly relevant tack - an informative science documentary such as Horizon etc. There would be nothing risky in that for media reporting, so long as they kept it strictly to the biomedical research that is underway. And it could be an extremely good documentary.

I seem to recall @Jonathan Edwards saying some time back now, that there are journalists interested in reporting our issues, but the PACE crowd seem to have basically put the frighteners on them through the old boy network, and they are also not entirely convinced re PACE etc. Well I'm saying we can park that aspect for now, and work on a different tack that I think could be highly viable. And if that happened, after a while a different documentary aimed at PACE etc might then be more viable, if the first documentary (that I'm suggesting) managed to change the climate in preparation for that.

 

[Trish]

@Barry I'm all for effective advocacy, but I'm not clear what you are suggesting and why you think the media would be interested enough to do a story that would cut through in a big way.

Do you mean a documentary about what life is like with ME and the lack of access to care for many pwME. Or one about new discoveries in ME science?

If the latter, we really need a big discovery such as a biomarker, or, even better, a drug that is demonstrated to work. Just another study of metabolites or immunological factors or confusing looking brain scans that might distinguish some of us from some other people is not enough to catch the media's attention.

Take for example stomach ulcers. The discovery of H pylori was a game changer. We need one of those.

 

[arewenearlythereyet]

@Barry I'm all for effective advocacy, but I'm not clear what you are suggesting and why you think the media would be interested enough to do a story that would cut through in a big way.

Do you mean a documentary about what life is like with ME and the lack of access to care for many pwME. Or one about new discoveries in ME science?

If the latter, we really need a big discovery such as a biomarker, or, even better, a drug that is demonstrated to work. Just another study of metabolites or immunological factors or confusing looking brain scans that might distinguish some of us from some other people is not enough to catch the media's attention.

Take for example stomach ulcers. The discovery of H pylori was a game changer. We need one of those.

This

 

[Graham]

I think that's a good idea @Barry. I think the way to kick that one off is to find someone at the forefront of biomedical research into ME, someone with a good screen presence and style, who can talk directly to the science side of Horizon, bypassing the usual health folk.

I don't know much about the biomedical side, nor about the researchers, but the two aspects that strike me that would make good TV are those on collecting and linking large quantities of data, and those looking at performance within cells.

The ME benefit would be "incidental" to the programme, but that's no bad thing, because it would give the impression that of course ME is linked to this exciting work. Who knows, it might even stimulate more interest among new researchers.

The first question is who among all the researchers is a good candidate – quick, lively, and able to communicate easily? If we could get a couple of names, we could put a case together.

 

[Barry]

I think that's a good idea I don't know much about the biomedical side, nor about the researchers, but the two aspects that strike me that would make good TV are those on collecting and linking large quantities of data, and those looking at performance within cells.

The ME benefit would be "incidental" to the programme, but that's no bad thing, because it would give the impression that of course ME is linked to this exciting work. Who knows, it might even stimulate more interest among new researchers.

I certainly had the cellular research in mind, but had not really picked up on the big data side. I also like the notion of not 'majoring' on the ME angle.

Or one about new discoveries in ME science? ... we really need a big discovery such as a biomarker, or, even better, a drug that is demonstrated to work. Just another study of metabolites or immunological factors or confusing looking brain scans that might distinguish some of us from some other people is not enough to catch the media's attention.

I'm pretty sure that down the years I have seen very interesting very informative cutting edge science programmes (including health ones) where the thrust of the item is about promising and fascinating areas of new research, and why they are promising, even though there is still a long way to go. But I concede I cannot recall anything specific. I don't have time at the moment to look in more detail, but I'm sure our own research forums will have useful info. But I do not have the necessary insights into how our media really works, and was hoping someone with better understanding would be able to say if I'm right or wrong.

I'm not yet convinced all the answers have to be in place before such a programme is viable, simply enough of a science story to make it fascinating, in this case the pulling together of quite a few different science stories. If it were viable it just seems to me it might help ease the path for researchers to chase down the answers.

I'll do a little more digging anyway.

 

[Graham]

The linking of large quantities of data is something that is at the forefront of a number of very different fields, and fits well with exploring cutting-edge technology, and high-powered computing.

My feeling would be that we could present the Horizon programme with a short, edited clip of a couple of "our" researchers talking about their work, and attach a very short introduction, focusing more on the analysis than on the ME: perhaps along the lines of "this is how exciting new techniques are proving invaluable in neglected and baffling areas of research such as ME, ..." and others that we can come up with. That way we introduce them to two presentable experts who are already working on ME. We could then add a couple of links to other areas.

 

[Graham]

Thinking further, another possibility is looking at the way in which different specialities are beginning to work together to study ME: this collaboration is quite unusual.

I was thinking that @Simon M might be a good person to ask: his blog on current advances is so well-written, even I can understand it.

https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research/

 

[Barry]

Thinking further, another possibility is looking at the way in which different specialities are beginning to work together to study ME: this collaboration is quite unusual.

I was thinking that @Simon M might be a good person to ask: his blog on current advances is so well-written, even I can understand it.

https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research/

Absolutely, which is why I was thinking along the lines of several science stories potentially forming parts of a bigger picture. And yes, @Simon M has been in the back of my mind. Do you have any thoughts on this Simon?

 

[RuthT]

Agree & think a positive story about new research fields opening up would gain traction & interest: lots to learn through studying ME that would open lots of doors. Also new tech to explore & data angles. Good to cover lots of different angles. I do think Ron Davis, though US, is powerful example & of research collaboration & focus on patients not publication (given issues with research publications in this & other fields).

Could allow journalists who have been towing SMC line to head in the new direction without forcing them into confrontation/admission of failure on their part to challenge.

 

[Jonathan Edwards]

I think this makes sense once we have a solid finding to be a news focus.

The problem with several science stories forming parts of a bigger picture is that at the moment it is not clear that they do form a picture. We want to make sure that message that goes out is the real thing. I think we are not quite there yet.

 

[Barry]

I think this makes sense once we have a solid finding to be a news focus.

The problem with several science stories forming parts of a bigger picture is that at the moment it is not clear that they do form a picture. We want to make sure that message that goes out is the real thing. I think we are not quite there yet.

One to keep an eye on for the moment then, though I imagine you will have been anyway.

 

[Peter]

Advocacy is complex, and given the situation, there is really no way of slowing down here or there. But I think Barry makes some important points. PACE and BPS (and a ton of other things gs) still needs to be contradicted/fought in good ways, but I very much support the idea of trying to set the agenda, change focus, if possible. I get the point that science is still struggling in many different ways and directions, but at least there is a shift. If we could get media’s attention to this and what really goes on, it would be good instead of more of the same old conflicts. That’s not a very original thought, but how to do it?

Maybe one should not engage in everything that comes around? I wonder if we now or very soon, reaches the point where silence or a lower voice could be well as effective? An example that comes to mind is engaging with MS. This is a tricky stand, because M Sharpe really shows he’s true nature in Twitter one liners, but I wonder if it’s worth engaging in it? It’s a little like feeding the Troll when opposing him in all and everything. He gets his attention and keeps babbling on. That could be good for the whole world to see, but maybe not giving him attention, turning the corner and ignoring the poor man would be just as good? Just a thought.

 

[Forbin]

It is possible to do a documentary on the potential of a scientific breakthrough. You give the background/history of the subject in question. You interview scientists/researchers on the approaches they are developing and why they think they will work. You highlight the controversy and the tantalizing evidence which may or may not be the way forward. You explore the subject's wider implications. In the case of a medical condition, you can also make it personal by profiling some of the patients who are affected by the problem.

The search for answers highlights the powerful scientific tools and innovations that are being brought to bear. The lack of definitive findings just makes it one of the more challenging scientific mysteries to be solved.

I know I've seen more than few documentaries on NOVA that have followed scientific endeavors that had yet to bear fruit. In a way, it makes a documentary more compelling when you're watching a scientific struggle that's under way, as opposed to a victory lap. The ME story covers a good part of the last 100 years, and a lot of it would make excellent fodder for a compelling scientific "drama" in documentary form.

[I realize that "Unrest" and other ME documentaries have tackled the subject, but I'm thinking of something more narrowly focused on the cutting-edge science and technology now being directed towards the problem (after decades of general disinterest).]