News from Doctors with ME

InitialConditions said:
I think this goes beyond the language used. As I pointed out earlier in this thread, it seems Richard is using DwME to indulge his myriad personal interests, which seem to span law, corporate management, computing, cybersecurity. I'm sure he has lots to bring to the table—perhaps too much. It seems that the other DwME leaders are not willing to accept this.
Click to expand...

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
 
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.
 
NelliePledge said:
Absolutely @Robert 1973. Simpler - plain - English is not something separate for a dumbed down version of the content for the clever people it is a standard anyone responsible for any content should aim for.
Click to expand...

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)
On the contrary, here at DwME we always listen to feedback. We don't however, always agree with the feedback. We must apply our own judgement and where parties don't agree, we would expect everyone to be mature enough to agree to disagree, that is to respect the fact that someone else has a different opinion. Where a person will not do that, and insist upon forcing their opinion onto others, that is bullying. Where they do that in a public digital forum, in some cases adding unsubstantiated personal attacks, all for no reason other than that the perpetrator is angry that they could not force an advocate or an organisation to do what they dictate, that is cyberbullying.

I trust these definitions are clear and that you have no interest in engaging in, promoting or supporting such behaviour.

Let's drop this now. We have listened to your opinion and while the video stands, I have made a tweet with the one line summary that I gave you, to assist other patients to understand what the video is about. Therefore our discussion has been fruitful, you have our thanks for that, but I doubt there is any value in continuing.

Sincerely,
--
Dr. Hng
Founder, Doctors with M.E.
Click to expand...

My reply (9)
Dear Dr Hng,

Please let me repeat first that my concerns were not over the latest video (only) but all of DwME’s communications since its inception. I believe I have made this point clear a number of times in our exchange, but I am not sure that you have grasped it. Our conversation has thus not been as fruitful as you say it has.

I said in my initial mail that I am not alone in being unable to understand the dense writing style in your communications. Many ME patients have confirmed on Twitter and on the Science for ME forums that they struggle with it too. If an organization that represents people (whether officially or unofficially) receives feedback from said people that they cannot understand the content that it puts out, that reveals a significant issue with its communication strategy.

It is worrying for Doctors with ME as an organization that you are not willing to acknowledge nor address this issue, despite Dr Geraghty showing willingness to do so and Dr Ramyar being open to following a 2-hour workshop offered for free by a ME patient who works in marketing and communications (Ms Elisabeth Klaar, Oak Tree Studio).

Unfortunately, Doctors with ME will go on carrying this burden for the foreseeable future, unless you — hopefully — discuss this further with Drs Geraghty & Ramyar soon. However, be aware that you will inevitably have to address it at some point down the road.

Finally, I am not trying to force anyone into anything, nor have I attacked anyone with unsubstantiated allegations online. The fact of the matter is that you have accused me, a patient providing constructive and well-meaning criticism to try and improve the organization that you lead, of cyber bullying. I am sad to say that behaving like those who have smeared ME patients in the past is a very low point to reach.

Regardless, I still hope that you reconsider your position. I do not feel like asking for a simpler writing style is something beyond the realm of possibilities, but it seems that it is, while no viable justification against it has been provided in our discussion. And again, it is not just me — your readership is clearly asking for these changes.

Sincerely,
Click to expand...
 
Last edited:
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.
 
Doctors with ME claim to be
The global professional association for medical practitioners, scientists and researchers in the field of #MECFS, #LongCovid and related postviral disease
Click to expand...
That's a pretty lofty aim. Having 'Doctors' in the name I think lends a lot of credibility until proved otherwise, which has resulted in people giving them a lot more attention than they have deserved so far.

Wonko said:
DwME would seem to be.....a duck, and maybe people should stop treating them as if they were not a duck.
Click to expand...
Yes, in reality Doctors with ME are a very small group of people who don't really have their act together yet. And some of them don't yet seem to have understood that it is the problem of doctors not listening to people with ME and of taking the attitude of 'we know best' that has contributed a lot to the mess that is ME/CFS clinical care.

Doctors with ME could look to the example of @PhysiosforME who have networked extensively and demonstrate respect for patients and an openness to listen to criticism and different ideas. Physios for ME worked with the forum committee in preparation for the NICE Roundtable and aren't too busy to engage with members here sometimes. They have reached out to make use of members here with relevant expertise.

I have no doubt that the Doctors with ME officers are stretched thin. But there are members here, and people with ME/CFS elsewhere who would be willing to help and who bring skills that that core group do not have. For example, if Doctors with ME asked for a private subforum here where they could get feedback from a few members with skills in editing and communications on materials before they are posted, I'm sure the committee would try to pull something together.

Their latest announcement seems to suggest creating a forum that would duplicate some of the things we do here.
When there are so few ME/CFS advocates and we are all trying to do too much, I think it's important to focus our efforts and cooperate. Doctors for ME right now are not helping, its communications embarrass me as a person with ME/CFS, and it is undermining the credibility of the individuals whose names are associated with it. (That's not to say individuals in the organisation aren't helping move advocacy forward, but that is in spite of Doctors with ME, not because of it.)
 
@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.
 
Last edited:
Braganca said:
@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 understand it. 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...
Click to expand...


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.
 
Lou B Lou said:
I am also very concerned about the communication style of DwME.

It is not the case that DwME's communications only come across as impenetrable and florid to patients with cognitive dysfunction as regards reading. I can read quite dense material without trouble much of the time these days, but the DwME communications require reading and very close re-reading to extract their actual meaning. Business-speak is just not appropriate or necessary.


And Yes, reframing the raising of legitimate concerns as potential "cyber bullying" is deeply worrying. If an org proposes to speak for ME sufferers they have to have social media platforms on which patients can respond to them, communicate with them, and yes, raise concerns. Pre-emptively framing patients who want to raise concerns as potential "cyberbullies" is horrible. And unprofessional.
Click to expand...
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 .
 
Amw66 said:
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.
Click to expand...


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
 
You must log in or register to reply here.
Back
Top Bottom