News from Doctors with ME

Yes, it looks tricky. Normally I'd suggest whether there is someone who they know and respect is on their side (whether inside and high up or not necessarily inside) and comes from experience of getting things done, what's important etc (not necessarily ME, just campaigns or organisations like this) to be a route worth trying. Along with bringing something that makes the task easier etc.

I can't work out whether this is right for this instance as I'm tired and can't get a full read on this, could make things worse, might already be there, don't know where the issue is etc.

The emails have disappointed me and made me think a bit

 

People might find this link from the Plain English Campaign website of interest. The link is specifically to the section on writing medical information :

https://plainenglish.co.uk/medical-information.html

 

Well done writing those emails @cassava7 , and thank you for sharing them.

I can imagine dr Hng making a mistake while speed reading of the first email, thinking you are asking for overall simplified texts and communications that are easy to read for people with brain fog issues, but in the text you added in the end you give examples of well-written texts that are both professional and clear.

And in the follow-up discussion you are very clear in what you mean, and what you expect of them.

From the second reply of dr Hng on (quote block (4) ) things just get weird. She implies that they are communicating with parties that need communication of a sort that mere ME patients would not understand anyway. I read her texts as saying that they are not using weird and woolly language, but that ME patients are just too dumb and not part of the in-crowd that does understand. In a very condescending tone, and peppered with empty lines such as "Not everyone will understand these concepts and that is ok." and "All of these works have their place in the fight, and we have ours."


It reminds me of the "I won't get into your concrete question because the answer is just too technical/complex for you so you wouldn't understand" tactic people with more arrogant confidence than actual knowledge on a topic, or politicians who don't want to spoil their narrative, use.


I get a bit of the same vibes from this, as she's actively evading the question and topic with saying that understanding their language is just reserved for the special people.


She should have handled this much, much better, and this makes me worry about their attitude towards the patients they say to represent and advocate for.

 

It can be harder to write though, something achieved through an edit process - and I'm not saying that means it should be skipped, just that the length mightn't be their 'aim/ideal' - I don't know and am curious.

 

@cassava7, thank you for trying hard to tactfully let Doctors with ME know the problems with some of their communications, and I am sorry that Dr Hng not only completely failed to understand your substantive points but ultimately became offensive.

It is so disappointing that this potentially important group should at times have such a problem communicating clearly and effectively. As I said before this and the tendency of these communications to over state some research findings, risks giving ammunition to those that are keen to have the patient voice disregarded.

I understand that ME brain fog can make it difficult to compose clear prose, I personally have always tended to use over complex grammatical structures, and this can be made worse by my ME, however when this involves communications representing an organisation it is important that others proof them.

 

This is so disappointing, the group may be able to achieve so much if taken seriously. I was also offered some sort of fellow type role but gave up having had to repeat a silly quiz until I got 100%, all the while seeing tounge twister posts and articles being released.

I have a masters in a social science subject, have read my fair share of Foucault and Kierkegaard, as well as plenty of health & social care industry documents (not to mention the DWPs PIP assessment point scoring system guidance) and I cannot muster up the patience to read DwME's content, brain fog or none.

 

I'll add that I can relate. I used to write like that, thought it made for better communication to just pack as much meaning as possible in as few words as possible. This is a similar mistake that inexperienced designers do as well, pack as many graphics and colors and stuff as possible so that you don't leave out anything from your message. But good design, like good writing, is all about removing anything that isn't necessary, then simplifying further to the essential.

I'm not sure I would have learned the right lesson without struggling for years with brain fog, but boy has it forced me to simplify, simplify and simplify some more. Although still with brain fog it still comes out derpy most of the time but if and when I have my brain back it will make me a much better writer for it.

That's why Feynman is a well-known scientist. Very few people know why he is otherwise famous, but his ability to explain in simple terms the most complex problems is one of the best examples of how to communicate complex ideas to this day.

 

1) Draft convoluted and often obscurantist communications

2) Blame not being able to understand their brilliance and wisdom on patients' "brain fog"

Really? Please do better, Doctors With ME. We are rooting for you to succeed.

 

I have received another unhelpful email from Dr Hng, accusing me of cyber bullying. Unfortunately, she does not seem to see a problem with DwME’s communications. I decided to reply.

Below is the exchange; I have amended my previous post with the full exchange.

Dr Hng’s reply (8)

My reply (9)

 

Typical tactic, used by bullies, is to accuse others who complain about their behaviour, of bullying.

We've been getting it for years, by virtually all opponents of ME as a thing, been called extremists, vexatious, militant, aggressive, accused of death threats, etc.

Had 'our' reputation smeared by people behaving in exactly this way, just so that the bullies could get their own way, and remove any support from us.

If it walks like a duck, sounds like a duck, looks like a duck......then it may indeed be a duck, no matter that they claim not to be a duck.

DwME would seem to be.....a duck, and maybe people should stop treating them as if they were not a duck.

 

Indeed, @Wonko. This is known as the DARVO tactic: “deny, attack, and reverse victim and offender”.

I must say that I feel discouraged that someone who means to advocate for ME patients turns hostile against a patient and gaslights them.

 

@cassava7 This is terrible. I’m sorry you had to deal with this. You handled it very well and were absolutely clear and polite.

This whole situation is so strange. Dr. Hng clearly approves of their communications style. She thinks we just don’t have the cognitive capacity to understand their content. Keith Geraghty, whilst offering to help, also did not seem to see an issue. He kept asking on Twitter — but what’s the problem exactly? Did he read or watch the materials and have no opinion himself?

They are acting as if patients live in a bubble where we have no education or professional training. We all had careers and have a lot of expertise in different areas. I have sat in a million corporate meetings, consulted for Cleveland Clinic and many Fortune 500 companies. I did work for B2B as well as B2C clients. The communications DwME putting out are not just corporate and overly complex for people w cognitive problems — they’re weird. They’re unreadable. They’re unprofessional. Surely, with backgrounds in science and medicine, one would be able to see that? Instead they’re so defensive against even acknowledging an issue.

Also what I don’t get is — there are 4 directors but who’s really involved? Hng and Ramyar? Why sit on a board and not participate, like Geraghty, or even be aware of their communications? At one point yesterday he tweeted that he felt “targeted”. Bc we are begging him, one of only 4 people on a board, to pay attention after a year of ignored messages? He also said they don’t represent patients. Well, no if you have an org called Doctors with ME, you kinda do. If you are working in a disease space, putting out volumes of communications about those people, you have an obligation towards the sufferers of that disease.

I think we have tried, but based on the response, zero expectations.

 

Exactly.

The responses from the group's board come across as arrogant and paternalistic, with an unwillingness to take ownership of the problems that have been identified by their ultimate constituency of interest. Keith Geraghty should feel "targeted" - he's a board member, he has responsibilities/duty of care etc - the role isn't (or should not be) a sinecure.

 

I don't have ME.
Professionally I have some pretty dense material to wade through at times.
Like many , with relatives with ME, I follow research closely , which has hugely expanded both understanding and vocabulary.

Word salad is verging on an overly diplomatic assessment.

It's almost like a weird version of the Friends episode where Joey used a thesaurus, with a sprinkling of obtuse grammar added.

When almost every medical consultation I have experienced with my daughter has been an exercise in gaslighting due to medical preconceptions , this is very very concerning .

Sadly this plays directly into the established narrative .

It needs to be different to achieve their aims .

 

In what way is Raymar qualified as a "medical practitioner, scientist or researcher in the field of post-viral disease and related conditions"?

...just asking.

 

I don't have ME, either.

I've just re-read this:

https://doctorswith.me/project-flor...iral-disease-professionals-and-practitioners/

Much of it reads as though it has been generated by one of those jargon generator sites, where you submit a few key words according to a given field - education, sociology, business etc and it churns out a text.

@Brian Hughes