Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

[TiredSam]

I think someone who contacts Valerie Smith with delicate information will do so because he/she will know that she'll keep to her word and treat this information with the needed care. It is known that whistleblowers don't have an easy life after they whistleblew, so I can understand that the person who provided the data wants to remain secret.

I'm not saying she should reveal her sources. I'm saying that if she can't, she shouldn't expect us to accept her evidence without question.

This is not a trial before court, it's a blog.

Critical readers will want to weigh up the evidence, so I think it's a fair analogy.

Everyone who's regularly before court as a lawyer - even "new" lawyers - tell me that's how it is.

It is, I've seen it in action.

I haven't referred to the fact that I'm a lawyer because I don't think it's relevant to this discussion. VES has taken a different approach, and mentions the fact that she's a lawyer repeatedly as if it gives her a special status or makes her a PR expert, and uses words like "allegations" or tries to sound vaguely menacing if someone disagrees with her. It's a problem, because as @chrisb has said:

VES worked in an adversarial environment

Approaching PR, or even sharing your views on a blog, as if it's an adversarial undertaking is not appropriate and is not going to work. Different skills are needed to communicate and do PR work than are needed when trying to win a legal case. Emphasising "warring factions" and treating feedback from fellow ME sufferers as if it's an adversarial battle to be won isn't appropriate. In fact I think it could do a lot of damage.

 

[Hoopoe]

Do most people think here the "ME community" has no problem at all, e.g. with the perception to the outside

The poor perception of the illness is largely the result of the efforts by the Wessely school, who has worked tirelessly to portrait patients in a negative way. Even well before the SMC existed.

A good portion of inappropriate patient behaviour is not actually inappropriate (for example complaints about PACE), it's just being perceived as such (anti-science militants) because of prior message about patients being so problematic.

Patient behaviour is at times inappropriate. This is in part because patients are emotionally labile and feel oppressed. I don't think by itself it justifies the poor perception.

Public perception is also changing and the Wessely school these days has to be more careful about what it says.

 

[Hoopoe]

I think it's part of their tactic to deliberately label patients as difficult. It creates a cognitive bias towards interpreting any problems as being due to the patient, rather than due to a dysfunctional treatment or policies.

PS: to be a bit more clear. If a person repeatedly hears that patients with ME/CFS are difficult then it creates a cognitive bias towards interpreting any complaints from ME/CFS patients accordingly. When they then meet a ME/CFS patient that complains about some problem, they're more likely to interpret this as the patient being difficult rather than there being a genuine problem.

I wonder if the person from the press complains office (or whatever it's called) called patients dangerous/militant/violent for that reason. Not because they witnessed such behaviour but because they repeatedly heard patients being described as such, and received a lot of complaints from ME/CFS patients (some of which undoubtedly unpleasant) which seemed to be consistent with that description.

 

[Inara]

I think it's part of their tactic to deliberately label patients as difficult.

Yes. They have an interest and they "fight" for it. And what do we do? What can we do? It's nice to know we have a perception problem (wasn't that known all along?), but we certainly don't have Wessely&Co's networks. Even worse, the biggest ME charities in UK and Germany propagate questionable content. I don't believe they would stand up against those people with whom they're (at least partially) collaborating. So what to do?

 

[Stewart]

I'm trying to resist the temptation to get involved with this discussion until I've read Valerie's third blog. I have many points of disagreement with what I've read so far, but I feel I should let her finish making her argument before I start critiquing it. I appreciate that other people feel differently (or this thread wouldn't have run to eight pages already...).

Having said that - I've got a question. This 'online video' that Valerie uses as a case study - had anyone here heard of it before Valerie published the second part of this series? From this thread so far the answer seems to be 'no' and (as others have already noted) the BPS/PACE crowd don't seem to have ever mentioned it when talking about the abuse and harassment they've received. So am I right to assume that was this the first that you'd all heard of it?

 

[Hoopoe]

Yes. They have an interest and they "fight" for it. And what do we do? What can we do? It's nice to know we have a perception problem (wasn't that known all along?), but we certainly don't have Wessely&Co's networks. Even worse, the biggest ME charities in UK and Germany propagate questionable content. I don't believe they would stand up against those people with whom they're (at least partially) collaborating. So what to do?

When someone witnesses angry patients, it seems to support the meme of unreasonable patients, but when the observers are given more context, they can understand that this anger is justified and indicative of a serious problem.

I'm angry, and I don't deny it, and I think there is in principle nothing wrong with it. It's not a defect or an inappropriate response, although it sometimes gets in the way of more measured responses. I think society can forgive sick patients for exhibiting less than perfect behaviour at all times.

I wonder if a PR campaign that explains why patients are angry would work. That would mean talking about injustice. If it worked, it would neutralize future attempts by the Wessely school to bias society towards viewing patients as being difficult rather than having legitimate complaints.

 

[chrisb]

So am I right to assume that was this the first that you'd all heard of it?

I think this is the whole point of the argument. It seems strange to make the case for ones opponents when they have been unwilling to make it for themselves. This seems to be carrying a duty of disclosure a little too far.The questions I ask myself are who, or what group would have had access to such a video, and why would they demand absolute secrecy as to its contents? And in whose interests could it be to disclose it now?

 

[Jonathan Edwards]

I think there is confusion about what problem there is with perceptions of the 'ME community'.

I strongly suspect that the perception of the general public is not that there is an 'ME community' but just there various people have ME. The perception problem, if there is one, is that a lot of the general public are not convinced there is much wrong with PWME. Trying to persuade them otherwise is an important task which a lot of people are trying to focus on.

As far as I can see, the only people who have a perception of an 'ME community' that is truculent and abusive, are those who have a vested interest in claiming that because it suits their empire building. I do not see that there is any point in trying to persuade these people otherwise because they do not want to be persuaded.

So to issue a statement distancing an 'ME community' from a past instance of abuse seems to miss the point. The general public will just think it peculiar.

I suspect that the legal reason for not having public information on the video is that it would breach medical confidentiality (i.e. the person was a patient of someone involved) or that the person was known to be mentally ill (i.e. insane). In either case it seems that Simon Wessely should never have mentioned the episode and it seems inappropriate for PWME to refer to it as well.

 

[Inara]

I wonder if a PR campaign that explains why patients are angry would work.

I totally agree with you (as I posted earlier). When I wrote about these issues somewhere else, I tried to show that
1) sick people, and thus people with ME, are discriminated,
2) after World War 2, society decided not to discriminate sick people anymore,
3) people with ME fight against this discrimination and for democratic values.

 

[ME/CFS Skeptic]

I posted the following comment on Valerie Eliot Smith' blog before reading this thread (the title suggests it's a discussion of the first blog post only). I see that my skepticism of some of her proposals are shared by others.

"Interesting blog. Thanks for touching this difficult subject. Just want to make one remark.

At the time, Charles Shepherd from the ME Association confirmed there was harrasment and abuse by some individuals in the community. He himself had been the victim of this and in one case consulted the police. But he also made clear that these threats were coming from only a few individuals who cannot be seen seen as representative of the approximarely 250.000 ME patients in britain. Action for ME responded in a similar fashion for example by stating in a daily mail article: “We too do not condone death threats or abuse and emphasise that such action comes from a very small minority of the 250,000 men, women and children across the UK who are affected by this very debilitating illness.”

So they recognised the harassment and condemned it. They could have gone one step further by making a joint press release about the threats and harassment, but without hard evidence about the prevalence and seriousness of these threats (even today we do not have a clear view on this as you cannot reveal your sources) I doubt if they’ve made a mistake in not doing so. A press release would give the impression that harassment of researchers is part of the ME community. The charities wouldn’t be reaching for the press to condemn and stop these threats, one could think, unless they think and acknowledge it is the work of many in the community unstead of only a few deranged persons.

To me it seems that the charities have acknowledged the existence of the threats and harassment you describe and that they have condemned it in the press. They do not however see it as representative of the ME community, or as a problem the ME community needs to solve. If some of the threats were truly horrifying that doesn’t necessarily change the situation if they are made by only a few deranged individuals. In my opinion, that would still be a problem the police needs to solve, not the ME charities."​

 

[Stewart]

I think this is the whole point of the argument. It seems strange to make the case for ones opponents when they have been unwilling to make it for themselves.

I think there's a much more important point than that to be made. Valerie's intent in bringing up this video - and talking it about it at length - seems to be to illustrate how it was the patient community's failure to respond quickly and appropriately that led to the 'abusive patient' narrative taking hold. But if no-one - or next to no-one - in the patient community was actually aware of this video before it was taken down, how could there possibly have been *any* patient response to it, let alone the platonic ideal of a rebuttal that she sets out?

Even if you assume that the video was genuine and passed to her by someone she considers reliable (which I'm happy to do) Valerie doesn't seem to know who made it, when it was posted online, how long it was online for, what the exact circumstances were that led to it being removed or whether the video was referred to the CPS or police. If she doesn't have those details how can she know for certain that it was ever online - or that Simon Wessely saw it and that it was one of the threats that he took legal advice over?

It's a terrible case study to use because it's *not* a case study - it's a 'hypothetical scenario' (to use Valerie's own words) that she's extrapolated out from the existence of the video with the express purpose of emphasising the point that she wants to make. It's legitimate to ask why she's done this rather than cite another, better evidenced example to support her case. The answer, of course, is that there aren't any better evidenced examples that she can draw upon because the evidence supporting the death threats narrative was always non-existent (which is not to say there were no death threats - just that no credible evidence of them was ever placed in the public domain, so it wasn't possible for patient groups to 'confirm the existence of the evidence' as she suggests they should have done).

If you want to demonstrate the need for the main patient organisations to work together to reframe the media narrative (which may well be a very good idea) then I think you need to do better than theorising about the possible effects of an online video that no-one seems to have seen.

And on that note I'm going to return to biting my tongue and awaiting part 3...

 

[Sean]

Au contraire, history is replete with unscientific claims dominating because of a good PR campaign. PACE comes to mind.

A good PR campaign and hard science is best. The former is necessary in any instance, the latter not so much.

Depends where you sit in the power tree. We are down near the bottom, without the luxury of protection by powerful patrons, so our scientific case has to be rock solid.

This is not a trial before court, it's a blog.

It is an extremely serious allegation-by-association against our reputations.

 

[Roy S]

 

[Guest 102]

I agree that there is a need to change the narrative but the trouble is that everyone has a different personal take, and Valerie E-S's is not mine. If the aim is to get recognition as a medical condition it needs to involve a rigorous re-writing of the narrative within the medical community and that means sticking to science, in the broad sense of basing things on facts and evidence. The rest, it seems to me, IS just PR.

I don't buy the sexism bit. If there are fewer female advocates that is not sexism, it is a reflex ion of women not shouting so loud. And it does not seem to be the case anyway. Who is the most high profile advocate - JB most would agree. And the highest level advocates in the U.K., in Parliament, are three women, Monaghan, Mar and Morgan.

Many women advocates in UK including myself have been shouting loud - in a ‘quiet’ way - for decades. ie. long before social media was able to harness advocacy more effectively. The problem is the Wessely narrative, far more powerful and influential, became dominant. Once that narrative is truly toppled - and it will be - and the *political* will is there for change, we will truly make progress. Carol Monaghan is a star.

 

[Hoopoe]

Part 3

https://valerieeliotsmith.com/2019/...ment-and-a-pathway-magic-bullet-not-included/

 

[Lucibee]

Part 3

https://valerieeliotsmith.com/2019/...ment-and-a-pathway-magic-bullet-not-included/

Since I started publishing this series of posts, I have received mixed feedback. I’m grateful to those who have provided positive and constructive comments.

There have also been some less helpful reactions to the previous post. My personal integrity and professional competence have been called into question. The existence of evidence to which I referred has been doubted, thereby implying that I am a liar or a fantasist. I have been accused of being on a “one-woman ego trip”. It has also been suggested that I am now in the thrall of the “SMC/BPS” group.

Because of the complex and contentious nature of this series, which I flagged up from the outset, “Changing the narrative #2” was a particularly difficult piece to write. From my own perspective, and that of some readers, most of the criticisms raised had already been covered in the post or in the links provided but I accept that this may not have always been as clear as it could have been.

I don't think anyone implied she was "a liar or fantasist", did they?

 

[chrisb]

I don't think anyone implied she was "a liar or fantasist", did they?

Certainly not here. Who knows what might have been said elsewhere? It is disappointing that the only response to the comments appears to be to suggest that they arise from an inadequate reading of what she wrote before.

The difficulties surrounding the questioning of the existence of the "evidence" appear to arise from the ambiguity of the term.

 

[Hoopoe]

The main points in this blog (in my view):

A SIMPLIFIED PATHWAY

1. Create a media steering group constituted by a coalition of representatives from the main patient organisations in the UK
2. Obtain funding by inviting those organisations to donate to a seed fund in order to engage a professional fundraiser. The fundraiser should raise the fund to a realistic amount* for appointing a strategic communications consultancy for a minimum of three years
3. Carry out a search for an appropriate consultancy which is competent to take on this representative grouping of the ME community as a client
4. Brief the consultancy on the basis of a) advising generally on media, communication and lobbying strategies and b) addressing the wider reputational problems faced by the community
5. Establish an easily-accessible centralised media point of contact for dealing with day-to-day enquiries. An identifiable media spokesperson (with a back-up) should be in place as soon as possible.

Increases in the number of nonprofits and lobbying expenditures are both significantly associated with increases in research funding, with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year.

This seems useful and could bear fruit, but I feel a lot of uncertainty too.

How will the media steering group begin to change the narrative? I agree with the call to reformulate the language surrounding the illness but that isn't going to do much by itself. Some concrete ideas would be useful here.

Edit: VES proposes "Establishing a centralised media point of contact". Hasn't the ME Association always been available to journalists? I think they did a good job but couldn't stop the SMC from controlling the narrative.

A discussion of alternatives would also be useful. We could for example attack the SMC, rather than attempt to compete with it over control of the narrative. Something like this may seem unthinkable, but PACE appeared invincible too for a while. We could focus on changing policy and raising money for pilot studies, based on the idea that these are what ultimately matter, and that the narrative at societal level will change on its own.

 

[NelliePledge]

I totally see the point of the suggestion in part 3. Not convinced that we needed all of part 1 & 2 to get there though. Something more succinct would have done the job.

 

[rvallee]

I don't think anyone implied she was "a liar or fantasist", did they?

I've only seen suggestions that she may have been mislead. I have not seen anything that could be construed as calling he a liar or fantasist on this forum. I absolutely don't think she is either. She has a perspective. It is accurate on some points, less so on others. She seems to take at face value claims that were made by people with a very poor record of integrity. That's being mislead, not a personal failure.

There has been a lot of disinformation surrounding this disease so it's unfortunately difficult to wade through and be certain of what is real and what isn't. Typical case of the victors ensuring their own perspective as the only valid one. We will only really know the full story if there is a serious investigation that isn't hampered by politics. I personally assume that nothing from Sharpe, Wessely et al is sincere and should be taken at face value. Doesn't mean it's 100% wrong. The best lies are built on a foundation of truth.