News from Doctors with ME

It very much looks like the message is not getting through. Despite my mail exchange with Dr Hng and my tweets with Dr Ramyar, he posted this yesterday on DwME’s Twitter account. More (superficially) legal speak.

https://twitter.com/user/status/1540412237394939904

 

The issue with their communications is serious, but as @InitialConditions pointed out, it is not the only important one: DwME seems to be an outlet for Dr Ramyar to entertain his personal interests — cybersecurity, artificial intelligence, business and law —.

@Braganca mentioned his series of tweets on the DDoS attack last July (which, saying this as someone working in computer security, were ridiculous in attributing it to a single individual). An even clearer example is DwME’s letter calling for the creation of a unified medical regulatory agency: https://doctorswith.me/public-letter-to-dhsc-mhra-hoc-nice-call-for-a-medical-regulatory-agency/

 

Odd timing too, given that there's a high-profile and rather clearer example of regulatory capture in the news, and that is what people are actually interested in this weekend.

 

I am not in the UK so I wasn’t aware of this, @Kitty. In this case, surfing on the wave is a good move on DwME’s part. It is just unfortunate that it comes across, once more, as dense when it could be written more simply.

 

I have been thinking about Dr Hng’s final mail (13).

Perhaps the two most worrying points are the following:

I cannot see how this framing of criticism is any different than that created by biopsychosocial proponents to smear ME patients in the media (through the SMC). It reminds me of the 2019 Reuters article where Michael Sharpe was interviewed, titled “Online activists are silencing us, scientists say”: https://www.reuters.com/investigates/special-report/science-socialmedia/

Surely if ME patients had not insisted over the past decades, we would not have — among other advances — the new NICE guideline that Doctors with ME have been keen to summarize for GPs, but would instead have been left with harmful graded exercise therapy and ineffective CBT?

More of the same, where she creates an opposition between “angry patients” against her “most humble, unpretentious” person.

But more importantly, I am concerned that the following suggests rather authoritarian behaviour in her management of DwME: “And if I should disagree with someone, they should respect that.” — in combination with distorting criticism as anger.

I can only hope that DwME’s affairs with the DHSC are being handled (primarily) by Dr Muirhead.

 

What DWME seem to be missing is that the UK Department of Hea1th themse1f is trying to use P1ain Eng1ish in their own communications (interna1 and externa1, inc1uding medica1 and 1ega1 ones...)! So what they are apparent1y justifying is that they are exempt from this and a 'specia1 case', whereas S4ME are mere1y arguing that DWME shou1d be fo11owing 'best practice' in their communications with patients, professiona1s and government departments.

https://gds.blog.gov.uk/2014/02/17/...-desperate-need-to-re-think-the-way-we-write/

 

Apologies for not making myself clear—I was talking about the overturning of Roe Vs Wade by the US Supreme Court. Against that backdrop, it would be somewhat challenging to attract much attention to the case of regulatory capture as it applies to ME.

 

Well, Dr Hng has definitively decided to stay on track.

https://twitter.com/user/status/1541070018049626113

 

If I were of the twittering kind,

Which thank the Lord I'm notsir...

 

Yes. Their inabi1ity to grasp this ironica11y makes them seem very unprofessiona1 - the opposite of what they are aiming for as an organisation.

 

It's a huge issue in technical professions I can tell you that. We had communication classes in our software engineering program and most, me included, thought it was a joke. It definitely isn't. Doesn't matter how much you know if you can't get that knowledge across to others.

 

Hng seems to think that the problem is that the documents are written in legal language. The problem is that they are not. No legal document would remain in such form beyond the first draught. I doubt whether any rough first draught would be in such form.

 

This is true. Unfortunately the group of people who are not used to the language includes the recipients and intended audience of their writings. I would wager that there are only two people on the planet who are used to "the language", and that they are both members of DwME. Some of those offering feedback have a medical or legal background, and know what they are talking about regarding the use of plain language in those fields. I attended a course on use of clear language in legal correspondence as a trainee solicitor in 1989, this is hardly a recent concept, and as far as I'm aware it is not really up for debate. Nobody has time to read things written in obscure language which could be expressed much more clearly, all you are doing when you write like that is ensuring that whatever you've written goes to the bottom of the pile, and stays there. Busy professionals just don't have time. They may have had in the 1960s, but gobbledygook has been out of fashion for a few decades now.

 

https://twitter.com/user/status/1541106132432863232

 

Yes, some of the output from DwME leaves me wondering if the content is simply too highbrow for me to comprehend, or whether it is simply word salad. It should be remembered that information needs to be successfully received and assimilated by its target audience, not just transmitted, else there is no point saying anything.

 

Is anyone actually going to do more than raise an eyebrow and forget about it with that one either? EDIT: OK now I know it is about Roe v Wade then that actually is one where people hopefully will do more

Telling people to learn this term is not going to help them to communicate what has really been going on with ME treatment/Nice guidelines etc without getting accused of conspiracy theories.

The most effective ways of this being pointed out has been things like S4ME, Nice documents and the paper by Weir and Speight (that went through cholera etc and how treatments were unusual for lots of things).

There is a gap still for the convincing 2-line sentence that has a penny-drop moment to those who wouldn't spend 2mins reading real stuff, but happily spend all their time wading through mind-body 'articles' - but you need to know your audience. And you need to know your craft (like BPS do - they picked an easy-to-understand line and hammered it day in day out, then years on slowly drip-fed in more mind-body storytelling once that had sunk in). I just wish their word-campaign was 'exertion harms' as that would be a better foundation-stone for all audiences. Then 'system not set-up for'.

You want to ideally get people to the point where they are asking [questions for what you want to tell them next] e.g. 'how?'. Then they care about what you say (although that is hard and sometimes never comes with ME).

But I don't know what this group are the strategy is all mixed up without a big picture. Campaigners (if so pick something, hone it to simplicity and repeat it), or wanting to be on a working group (bigger docs showing you can problem-define with others), or educators (different stuff again). And that is because, whilst some can do all of these, you have to do each differently and purpose-write to the audience and task at hand. And if you want trust everything has to be coherent (fit into the same big picture like a jigsaw piece you know what it will look like based on the gap) and consistent.

You can't rush these things no matter how much you want everything to be understood and accepted. But you can do big-picture without having to create new words and focus first on the bit that puts it in the 'squeamish, too hard' box instead of the 'gosh this is really urgent' bit (and then drip-feeding the 'so how did this happen then' part).

 

I find it insightful that she has used the noun 'patients' in response to an email to 'you'.

All sorts of possibilities feeding into that