News from Doctors with ME

I have received Dr Hng’s final statement on the matter. She will not change her position, assures that the matter has been dealt with internally, but mentions following communications training “separately”.

More claims of bullying and harassing, and asking me to not contact them anymore, too.

Dr Hng’s final reply (10)

My final reply (11)

 

More from Dr. Hng..
“..people who may be currently misleading you about me, or even about DwME”
DwME are doing quite a good job of making themselves look bad, without help from outside people. (Edited)

“Aware of all past incidents.. Has been discussed and actioned within DwME.. complaints have been heard… no need to keep repeating”
I’m sorry, what? They clearly have not done anything. The same person producing the same style of content with the same issues as a year ago. Complaints were never acknowledged then as having been heard. In fact they’ve been met with silence, baffled denial or insistence that they are just really clever people and we are too dumb to comprehend.

“Ask yourself whether you trust us..”
Oh yes, definitely. Brilliant trust building effort on your part Dr. Hng.

 

“Ask yourself whether you trust us..”

Making it an issue of trust is always a red flag for me.

https://www.youtube.com/watch?v=F5ToxGDA-4M

 

Aren't they a member of a consortium of ME charities (possibly including the S4ME)? Can the consortium address this as a collective concern?

 

I think at this point it would make sense for DwME to do an evaluation of existing communications to see what's working and what's not. Clearly pwME are not their target audience. I assume that their target audience is doctors and policy makers who are not already involved in the ME field. Could they recruit some doctors and policy makers to give feedback? Do they find this style clear and helpful? Do they understand what is being communicated? As many people have raised concerns over this issue and a lot of money is going to be spent on this Florence Nightingale platform, surely doing a little bit of a review at this point would be helpful to ensure that potential impact is maximised?

 

At a guess you are thinking of Forward-ME? DwME are not listed as members, https://forward-me.co.uk/our-members/, although Nina Muirhead is listed as an individual member. S4ME had the opportunity to continue working with Forward-ME after the NICE guideline was finally settled but we had to decline due to lack of capacity.

 

its Ramyar

https://www.researchgate.net/profile/Richard-Ramyar

 

I remember something my local hospital used to do (and might still do for all I know). They would send out letters that gave the time of an appointment, say 10.30am. Then there would be lots of words about whatever you could expect to happen in the appointment. Then two-thirds of the way through the letter it would ask the patients to arrive 15 minutes early.

Why not just make the appointment for 10.15am, for goodness sake?!

 

'They are clearly still very new and at least in their public facing actions, have a lot to learn.'.........

Too much drive and too much enthusiasm at the outset can prove to be a double edged sword, whatever the good intentions....
For 'long haulers' in the ME field...(PWME & carers like me who has clocked up more than 1/4 of a century!), the reality check of the lived experience always makes one more circumspect and have a degree of humility............

 

In a last ditch attempt at making Dr Hng see my point, I have quoted some excerpts from DwME blog entries. She may ignore it, though.

Addendum to my final mail (12)

 

@Wyva Dr Hng has posted your profile picture on her Facebook group claiming that you are “breaking group privacy rules” and asking who you are.

It is absolutely unacceptable and concerning that she has done so without your consent.

 

Wyva shared a post that Dr Hng herself shared to the Race to Solve ME/CFS Facebook group - don't really see how that is breaking the privacy rules of a totally different group. Dr Hng might like to educate herself on how Facebook works, it would prevent misunderstandings such as this.

 

The funny thing is that she is supposed to know me! We are Facebook friends, she added me a while ago. We even had some conversation about my advocacy and she asked me to translate her works to Hungarian (which I couldn't, there was too much on my plate already). (And I have the same photo on FB.)

So I sent her a message about this on FB, so there she can even see our previous conversation for herself and that she is actually smearing an advocate. This does seem to turn into a bit of a witch hunt now and does remind me of the PACE authors too. (Which I told her.) DwME was something I was promoting on my website: I wrote multiple articles, asking Hungarian doctors to join and this was one of the good sources listed in my "for doctors" section. Now I'm thinking about removing it.

Which group was this posted in @cassava7 ? I'm probably not a member there, I'm only friends with her on FB.

 

Dr Hng posted this in the group “Dr Hng’s ME/CFS friends”:

You are not alone. She reached out to someone who knows me — and who has translated DwME’s work into French — to ask them who I am instead of directly asking me, even though she is supposed to know me too (we helped each other for our respective advocacy work in 2020 and 2021).

Her bullying behaviour is quite upsetting, be it going around asking who people are or trying the DARVO tactic when confronted with legitimate criticism.

 

So they are obviously reading this thread. Why don't they just come here and ask us? They can see this is S4ME, it is full of patients and advocates, it is not some anti-ME headquarters. In this light, this is even more concerning.

 

I'm not a member of that group so whatever happens I won't be able to see it. So if whoever is a member I appreciate letting me know if something regarding me happens again.

 

I completely agree with the criticism of Doctors with ME, but it needs to be kept in mind that people are not used to or prepared for being discussed on a forum like this in this manner, especially having their emails posted etc. Personally I think unless you've gotten explicit permission to post those emails, I think there's a good argument for deleting them.

I assume Doctors with ME is actually interested in doing a better job, so I think if people continue to make an effort to stay civil and respectful hopefully they can take on board these concerns

 

Good post