What advocacy use should be made of DecodeME results?

[bobbler]

I think the off ramp is as described, a path of least resistance for people based upon new evidence and solid science. Public displays of damascene conversions are unlikely and probably not helpful.

Having prominent and respected people involved is part of the answer to me. As it looks as if is happening with SequenceME

I think you are getting the wrong end of the stick with what is being said and it's straw-manning inadvertently what people are talking about as important information that needs to be understood by those planning the strategy into suggesting somehow people have said that is the strategy. Or that you don't need to read this context and take it on board, awkward and squeamish as it might feel, to get the strategy effective to communicate to that audience.

It is important to dissect what is standing in the way of most even opening up an article or proper research paper on the subject of ME/CFS and if we can't be real about what some really do think and believe then we won't be as effective in working out how to crack through that nut. This misinterpretation is closing down this important contextual information (for the task of coming up with a plan of communication you need to know your target audience) that many haven't taken on board yet

 

[Sasha]

I see a fallacy in the big medical guns approach. My general view on things is big medical guns - my arse. The last thing to do is to appeal to authority because authority is always based on the lowest common denominator of intelligence

I was hoping that a letter from Douhami or similar would be the reverse, but:

Bob Douhami would understand the argument from DecodeME but he is not going to write a letter saying so, anyway.

Fair enough.

I would steer very well clear of arguments about all in the head because it may be, in at least one sense.

I was hoping it would be possible to focus on saying that it's clearly biological, as opposed to 'not all in the head', because that would be a huge step forward from where we are now, but:

I think what we probably is some rare gene data we can trust. [...] If someone can identify a rare gene that produces MECFS in 3 out of three children under 15 in a family and we know what it does then nobody can ignore it.

This implies that the DecodeME data isn't enough, but I'd like to understand why.

 

[bobbler]

Sadly with the degree of cognitive dissonance and sunk cost this will take time , which to be honest noone has- it's already been too long to get to this point.
It needs persuasion and an " off ramp" .
What would an " off ramp" look like to work?

I sort of agree. But it is more complex than this as a solution, bearing this in mind for some audiences might be useful.

I think that we have different audiences as well. Who all influence each other. The messages to each need to seem simple but need to be properly thought through from all angles and cohere with each other.

I'm sort of writing this as if it is in the original thread as intended so was really talking about how we get people to be interested in the DecodeME results and message at all. But people keep interpreting the first marketing task of understanding your target audience as 'emotional support' just because we have to use frank words about how things really are to do that job properly rather than glossing over the bits some don't want to believe/touch on etc.

In this context I'm concerned about what these people think and do because us being forced to pretend they don't think that way or do those things will mean we end up with another strategy/communication that doesn't work

1. There is the 'totally new to the area, as they thought it didn't apply to them and weren't involved at all' researchers and medical related that we need to come into the area and treat is as fresh. And yes they might be new because they thought CFS was just fatigue but yes who cares as they did no harm by that, happy to have them on board now.

2. Obviously we have the bps but whilst we have to be aware of what they think and will do we won't ever persuade them.
Even within this remember that we have the bps and group of 50 who make up the same orgs like coffi/oslo etc. and LPers bu then there is the BACME-types. And eg medics who apparently just think what they think but aren't involved in ME/CFS at all.

And I think it is very useful here to distinguish in the BACME type area between:

a. those who are more 'leadership' and have positions running businesses or kingdoms which have been grown based on business models selling very specific promises. And the equivalent in research/those trying to grow FND as a replacement bucket to do a rinse-repeat version of this.

b. those who are just 'staff' and I assume that they come on a large spectrum of skills, beliefs, ambitions and ability to think critically/see where the wind is blowing if it wasn't just the paradigm but also the future/next big market is vs just having been attracted to a job that is behavioural psychology (punishment and reward to change behaviours) and that's where they want [it] to stay


3. But the 'machinery' that currently blocks and works as a system to enable this is people who are eg in GP positions (who play roles in ICBs) and roles in hospitals and on research funding or ethics committees etc. will be getting messages from them so we need to be planning messages to them aware of what alt-view articles stoking that and other initiatives or 'offerings' they will be receiving from said bps

4. And a big mix of what you'd call bystanders which include laypersons, general public, and so on who might either agree that a thing is a good idea and would be a beneficial thing to happen/choose to fund etc or permit things bad to happen by turning a blind eye on the basis of 'there must be more to the story' or 'not get involved' etc. or don't depending on a complex mix of all sorts. This is the politics in the more general and 'demos' sense who might influence whether a normal politician might support one thing or the opposite as apolicy or initiative or general attitude to one group vs another in choices.

 

[bobbler]

Indeed it is that careful balance of clearing a way I think for something new and straightforward from new and straightforward people to have enough space to happen and not be landed with the old baggage.

But the other difficulty is that we have to be honest that the following truism is a cliche for a reason:

"if it ain't broke, don't fix it"

when everyone has a lot on their plate it becomes like 'do I seem like I'm looking to do more work?'


And I flag this because this one feels like the most here and now issue we need to be making ourselves alert to, in relation to whether the DecodeME results can be made into a big impetus and change going forward or not.

Particularly given what has happened with the implementation plan too.

That is one of the cognitive dissonance issues that we are competing with.

I think that we need to keep remembering and checking in with this point when we are thinking of all the audiences above (because changing the position of either of those audiences 1-4 will knock-on and start to help indirectly support change in another of those audiences etc)

And mark my words that seems to be where if we do not open our eyes is the default box that we are being put into. The bold carry on regardless using that, and then suggest that tweaks that are sold as improving delivery of something terrible through eg 'neighbourhood stuff'. Most people just want a reason to think 'oh yes that is half-sorted' and not have to hear or think about it.



Recent conversations I've had with old friends have been ironically amusing, where they've said eg about their work area:
"you've probably seen the articles in the press about it, big newspapers criticising it, and it's all over social media"
and then told me about something that I'd only even known a tiny bit of as a development because another friend had mentioned it but I didn't know there was backlash.

And then I've realised I'm planning to say:
"you probably saw all the DecodeME stuff in the news"
which 10secs before I believed and now I realise they probably saw as much as I did of theirs.

So there can be a 'bubble' issue. And it isn't just one friend btw, we are all talking on and looking at different things.

and then there is another level in a context where a lot isn't great for everyone and people are being taught 'it is fine not to care about other things when you've a lot on your own plate' as a mental health strategy. And the idea that there is a long list of deserving and urgent issues and everyone thinks their own thing should take priority in time, headspace, funding.

NB: I do feel the need to caveat here I am definitely not suggesting that everyone therefore goes off and hammers the sob stories etc. to 'make noise' - truth is that they don't work without the correct framework.

It's not about choosing between the what [next], how, why but needs all 3 of those elements made into audience-tailored (different messages to different audiences), coherent (but still makes sense as a big picture), stage-wise, digestable but also appetising chunks.

 

[Ariel]

I see a fallacy in the big medical guns approach. My general view on things is big medical guns - my arse. The last thing to do is to appeal to authority because authority is always based on the lowest common denominator of intelligence (in fact it is the highest common factor but bywords are bywords). When my work on RA made an impact it was nothing to do with authority. It was because people saw some data you could not ignore.

Bob Douhami would understand the argument from DecodeME but he is not going to write a letter saying so, anyway.

I think what we probably is some rare gene data we can trust. There seems to be doubt over the Zhang data maybe largely because of sample size. If someone can identify a rare gene that produces MECFS in 3 out of three children under 15 in a family and we know what it does then nobody can ignore it.

I would steer very well clear of arguments about all in the head because it may be, in at least one sense.

Is what you are saying here that there needs to be more evidence to persuade people? What would the strategy be at that point? Would we be having the same conversation?

I am having trouble understanding what it would take to move interest or opinion from medics, and although I agree with it being a bad idea to appeal to authority (who knows where that leads), there needs to come a point of mainstream acceptance or orthodoxy. How to get there? Are there a bunch of people behind the scenes who are sympathetic who need more evidence, or is there just nothing and noone much out there?

 

[Jonathan Edwards]

There are just ordinary over-busy people who may or may not care. Like life.

 

[Trish]

I think one of our biggest problems is the lack of an appropriate medical specialism taking ownership of ME/CFS (and Long Covid triggered ME/CFS). We seem to have moved over the last few years from the psychosomatic wing of psychiatry to rehabilitation medicine, with a branch off into the FND wing of neurology. The worst possible of all worlds.

Until some really enthusiastic and wise physicians decide to take it on and make it their own, and persuade their funders to fund them to provide clinical care including, and especially for severe and very severe ME/CFS as a priority, I think we're doomed.

 

[Jonathan Edwards]

We may or may not need more evidence. If we can see a thread in the evidence so far - maybe like both the OLFM4 and CA10 genes from Decode are already linked to sleep disruption - then maybe interest will catch on. Maybe we need some rare gene data. But nobody was suggesting that DecodeME alone would suddenly solved everything.

What I suggest effort should focus on now us not public relations guff but working on that the data mean. Recruiting colleagues to help with that - which those of us in academia will do - is part of it but the team here have impressive analytical skills. Sonya Chowdhury will be making the right noises in public places. I think we have a different contrihution to make. And as Chris P has emphasized, this isn't just DecodeME . We need to make use of everything coming out.

 

[Sasha]

I think we have a different contrihution to make. And as Chris P has emphasized, this isn't just DecodeME . We need to make use of everything coming out.

Do you mean new things that you expect to come out? Can you say what?

 

[Sasha]

Is there a precedent for an illness having been overrun by 'it's all in your mind' proponents and then moving properly into the medical sphere? Wondering if that would show us an example of the route out, but maybe we're unique (lucky us).

 

[Utsikt]

We may or may not need more evidence. If we can see a thread in the evidence so far - maybe like both the OLFM4 and CA10 genes from Decode are already linked to sleep disruption - then maybe interest will catch on. Maybe we need some rare gene data. But nobody was suggesting that DecodeME alone would suddenly solved everything.

What I suggest effort should focus on now us not public relations guff but working on that the data mean. Recruiting colleagues to help with that - which those of us in academia will do - is part of it but the team here have impressive analytical skills. Sonya Chowdhury will be making the right noises in public places. I think we have a different contrihution to make. And as Chris P has emphasized, this isn't just DecodeME . We need to make use of everything coming out.

I think people might be talking about different targets here, although I can’t remember the entire discussion so I might have gotten things wrong.

I take it that you’re focusing on the longer term goal of figuring out what ME/CFS actually is and how to treat it. And that truly great - we need desperately need that kind of strategic thinking.

But the reality is, as you obviously know far too well, that people are suffering and dying, and they need help now. A lot of that happens because the people that could help either believe that ME/CFS, and therefore the disability and suffering it causes, isn’t real, or that it’s psychosomatic.

How do we help improve those people’s situations as soon as possible? Because none of the charities anywhere are really up for the task. I wish S4ME could dedicate all of its energy to science, but we need to survive. And we want our friends to survive as well.

This is where I’m thinking about how we could maximise the impact of DecodeME. My guess is that it would be through getting the GPs on board because they might be able to make a difference in terms of services.

Which actually brings us back to your work in progress document. It speaks their language, and it could be easily spread by members in support groups.