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

https://valerieeliotsmith.com/2019/...strategic-communications-in-the-me-community/

 

I’m foggy today and struggled to see the points made, although I’m sure they were. She said PR isn’t enough but the narrative itself has to change? .

Is the narrative intrinsically related to name and criteria? in the UK if the name remains CFS, defined with an open to interpretation NICE criteria with a good portion of those responding to exercise , isn’t changing the narrative going to be hard? I think that as a community taking on all sources , including nhs websites, that start with the basis that CFS is basically persistent fatigue is worthwhile.

If someone can summarise the blog it would be appreciated

I think she was critical of the wait for the science to change things approach, I agree because it’s happening too slow. What I missed was how to change the narrative beyond the approaches already tried. She mentioned the SMC and the fatigue paper of late last year as an example of the wrong story being told and what the community needed to change, what she didn’t mention was the two main charities did little to highlight the issues with the paper or intervene in it in its process over the past years, we knew it was a fatigue paper years ago, so to me another point is the reluctant to be campaigning or critical when charities are “collaborating “ with the establishment.

 

On a first reading, here's what I took away...

To ask the question: "how should the myalgic encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?" seems entirely valid, but I'm not sure she answers it in this blog post - but there are still two more posts to come.

However, there is a danger of dichotomising. She splits advocates into those campaigning for more scientific research (predominantly men - raises sexism flag - which I don't think is helpful) and those more interested in the sociopolitical arena (predominantly women). This is somewhat of an oversimplification.

She points out that it is difficult to conduct an international campaign because the history of how the disease is viewed and treated differs by country. She suggests that the UK's ME communication strategy needs an overhaul, because of mistakes made in the past.

She says such a communications strategy needs to be "handled correctly" - but how do you do that? Maybe I'm reading too much between the lines, but there seems to be an underlying feeling that those who don't know what they are doing should shut up because they are making things worse.

 

This is just an intro to three further blogs. Stay tuned.

 

I look forward to hearing what VES has to say in the blogs to follow. I think it is a topic worth discussing.

 

I recall that she previously has complained that the contributions of males with regard to the criticism of the PACE Trial have got a disproportional profile when one looks at the gender breakdown in the community.

I decided to look at the gender breakdown of people who had authored or co-authored editorials for the Journal of Health Psychology special issue on the PACE Trial. I didn't include those that were supportive of the PACE Trial.

https://journals.sagepub.com/toc/hpqa/22/9

Male (11):
Jonathan Edwards
Keith J Geraghty
Leonard A Jason
Tom Kindlon
Keith R Laws
Steven Lubet
Graham McPhee
Charles Bernard Shepherd
Bart Stouten
David Tuller
Mark Vink

Female (5):
Susanna Agardy
Ellen Goudsmit
Sandra Howes
Karen D Kirke
Carolyn Wilshire

I not convinced this is a particularly unrepresentative list. There are certainly plenty of males who have also authored or co-authored papers on the issue who were not included (e.g. Alem Matthees, Simon McGrath, Robert/Bob Courtney, Sten Helmfrid, etc.).

Personally, I think bringing up the gender of advocates is likely to be divisive and cause more harm than benefit.
The community already struggles to stay together with lots of conflicting views on issues e.g. criteria, the name, charities people support, etc.

 

I am unsure where Valerie is going with this - especially the sexism angle, but I think we do need to change our approach. As it stands, as a community, we are always keeping our fingers crossed about how we will be portrayed in the media, then when we are unhappy we're on the back foot. We try to put counter arguments across, but everyone else has moved on, or our responses are seen as sour grapes.

Reading about AfME's SEE M.E. Project here earlier, demonstrates how it often feels that one of our biggest national charities is busy undermining us and working against patients best interests. For some reason they seem to have the most media clout of all the UK charities.

We do need to take control & get in front of our own narrative. I have no idea just how we do that. I await the next installments with interest.

 

I think it comes down to 3 potential routes:

Buy Media - pay big bucks to advertise an awareness campaign - we totally control the narrative.

Earn Media - through interesting / unique / new ME stories / bio research - we have some control over the narrative, but the news media is not known for accuracy on this topic.

Make Media - blogs, vlogs, podcasts, documentaries - we totally control the narrative.

I think it is the later Valerie is addressing and seems to be saying that organizing - and creating more and new - media under one overall media plan is what is needed. One aspect would be our version of the SMC. We essentially create our own media platform / outlet to create and counter.

ME Patient Media

 

I have a comment on there that directly addresses this. I wanted to do this six years ago then went into a crash that I have not recovered from. Physically I am OK, cognitively I am no longer capable of deep analysis. We need a large group dedicated to this too. No one person or even small group could do this.

However I am not sure we should preempt what Valerie is discussing. She may have a range of ideas. Certainly as a community we have many ideas.

On public relations firms, we had one some years back. It was expensive, and did not do much that was effective. There is a thread or threads on this on Phoenix Rising I think.

 

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.

 

How do we engage the medical profession when no speciality wants us? I have often wondered if the results from the 6 minute walking test in PACE were shown to cardiologist/ CPET in UK without them knowing the data source, what would they conclude? I've been trying for a year now to engage our local CPET specialist with no success, other than a vague agreement to read Systrom work when it is published.( I know we've had extensive debate on this forum about the value of CPET ). I am about to write to a young neurologist who thinks GET is great, but we can't pick them off one by one.

 

Who will control the narrative when Karl Morten paper is published?@RussellFleming,@EspeMor

 

I don't think the specialty issue is central. There are physician looking after PWME who understand the illness - under various specialties - just far too few.

I don't see it so much as engaging the profession as re-writing the narrative for the whole medical community - which I see as needing to be via the academic/quality control top level. That is the purpose of the NICE review and my own view is that there is a good chance of a major shift.

You already have people like me engaged, we just need more - lots more.

 

The medical community is a tough one to engage. Most won’t be educated by a patient. We are facing a shortage of every medical specialty here including family practice. Medical education is severely lacking. Clinicians who also do research face the tough choice to see patients to pay the bills, to the detriment of research, and then research money is not available.

Engaging new researchers is also very difficult when there is high competition for funding, and when reviewers are convinced ME is psychological.

Patients try to break down the barriers, but it takes a toll on our health.

There is so much work to be done.

 

I feel that what could help is more doctors publicly talking about how viewing ME/CFS as a kind of psychological disorder was a major mistake.

Dr Montoya has been saying something to that extent at several conferences. We need to get statements like these on TV and radio.

 

How do we get them?

 

It's not a rare illness, there must be many doctors who have some interest in it, but are afraid to come out in support of ME/CFS. Is it a guidelines thing or peer pressure?

 

I think it is mostly a question of people,including doctors, being sheep. People follow what they are told. And it is easy to follow the BPS narrative because it is essentially old wives' prejudice given fancy names. It also suits the doctors who like to think medicine is about ministering onto the sick, which makes them feel important. The key problem as I see it is that a more modern value for money based on evidence style of medicine has got lost in the dumbing down of the last few decades - typified by 'academic departments of primary care' etc..

The narrative needs to change to the sort of narrative that determines passenger aircraft safety - get the facts right and do what is necessary.

As far as I can see the crucial step is blocking the phoney narratives that are coming from phoney medical sources and Cochrane and NICE are central to that. I think progress has been good in levelling the playing field but there is more to do. The recognition by Cochrane of problems with the exercise reviews is an important step. More steps need to follow.

But I think this is the way to go. The sociopolitical context is that it is natural for people to believe the myth that ME is just unhelpful thoughts. I don't see a way to change that other than through scientific argument - the reasons why it does not add up.