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)
I did not accuse you of anything, but I did explain what I mean by bullying and by cyber bullying. I can tell you that I have experienced cyber bullying, including from people who may be currently misleading you about me, or even about DwME. And I do not wish to see any more of it. Many people within DwME have experienced cyber bullying too.

As for the issue of our communications, I am aware of all past incidents. I can assure you that each of these has been discussed and actioned within DwME. The complaints have been heard. There is no need to keep repeating them. I ask you to please respect that they have been dealt with. If you do not agree with the outcome, then you have to agree to disagree, not keep harassing us over the matter. And if you cannot do that, please ask yourself whether you trust us. If you do, have faith in our judgement. If you don't, stop following us.

We will discuss communications training separately with the person involved.

I will not entertain any further discussion on this topic. I have important work to do and I need peace to be able to do it. I have been very patient already and I think I have provided sufficient explanation. I hope you can understand.

Sincerely,
--
Dr. Hng
Founder, Doctors with M.E.

"The global professional association for medical practitioners, scientists and researchers in the field of post-viral disease and related conditions"

hng@doctorswith.me
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My final reply (11)
Dear Dr Hng,

I am glad to hear that you will be discussing following communications training. It is very generous of Ms Klaar to donate some of her time to Doctors with ME, so I hope you will accept her offer.

I will only say that it is not a matter of “having faith in your judgment”. I am deeply sorry that you have experienced cyber bullying in the past, but this is not it. This is simply feedback on a key issue from many patients who want nothing but Doctors with ME’s success (myself included); otherwise, none of them would bother spending energy on giving feedback. For Doctors with ME to succeed, you should be more open to external constructive criticism rather than shutting it down by saying that the issue at hand has already been handled. If it is still present after having been dealt with, which it clearly is in this case, then revisiting it and adjusting accordingly is warranted.

Please make no mistake: I am sincerely grateful that you are advocating so much for ME patients through your work for Doctors with ME, and I am aware of the toll that it takes on you. I wish you the best of luck and success going forward.

Sincerely,
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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.
 
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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?
 
Haveyoutriedyoga said:
Aren't they a member of a consortium of ME charities (possibly including the S4ME)? Can the consortium address this as a collective concern?
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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.
 
Arnie Pye said:
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
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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?!
 
I would hope that other doctors who have joined DwME are being consulted by, and working with, Dr Hng and the other directors to improve this difficult situation. In the end their success will depend not on the output of a comms person who is making a mess of it, or the ambitions of its founder, but on whether its members can work collectively to make a difference for everyone with ME.

That will necessarily involve sorting out their comms, but also something more than claiming effectiveness and importance on the grounds that some of their directors, fellows or members, are active already in ME advocacy, research or clinical practice that they would have done anyway regardless of their status in DwME.

I wish them well and hope they can get their act together. They are clearly still very new and at least in their public facing actions, have a lot to learn.
 
'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)
A final point, to which you do not need to respond if you do not wish to. I realize that in our discussion, I did not provide examples of what I, other ME patients as well as non-ME patients (including communications professionals) struggled to read. I should have done so earlier, so I have added some quotes below.

I would honestly like you to tell me if you believe that these examples are not overwhelming to read, and whether any doctor, patient, lawyer or whoever else wouldn’t think so, too.

If I were to use such a verbose style in my research work, my PhD advisor would urge me to simplify and shorten things to make my point as efficiently as possible and to make it stand out. For instance, removing adjectives and nouns in excess and shortening sentences to a length of one line or so would greatly improve readability.

As I said previously, those simple changes are all that your readership is asking for. Everyone from patients to professionals would benefit from them.

From “Project Florence Grant”:

A requirement of the grant was maximisation of our professionals’ creativity and impact in a safe environment, building in freedom from the chance of external parties coming into possession of incomplete information (who may inadvertently undermine critical initiatives, unaware of contributors, workflow prioritisation or external relationships). Project Florence will also continue professional and externally qualified assessment of cybersecurity events and requirements.
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https://doctorswith.me/project-flor...iral-disease-professionals-and-practitioners/

From the letter calling for the creation of a new medical regulatory agency:
(…) Such a practical move would be unusually straightforward to implement via adjusting reporting lines of NICE divisions, into those MHRA divisions with related remits or skills. This allows for phased departmental synergies over time and prioritises value for money for the taxpayer. Gradual rationalisation of overlapping internal services plus cross-fertilisation of teams and culture enables more than payroll efficiency. The exponential digital intelligence opportunities from unifying data sets in a joined up 21st century regulatory framework cannot be overstated. Integration of other regulatory bodies also becomes a future option e.g. the Care Quality Commission.
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https://doctorswith.me/public-letter-to-dhsc-mhra-hoc-nice-call-for-a-medical-regulatory-agency/

From “The NICE debacle”:
Credibility in the balance

If NICE capitulates to the insistent blind spots of contra-scientific vested interests and further undermines its own scientific review, it not only makes a mockery of the years of hard work, scientific rigour and discipline by its ME/CFS Guideline Development Committee, it also:

- chooses low standards, miseducation and discrimination over science,

-compromises its objectivity and independence,
loses credibility,

- brings UK medical regulation into disrepute,
fails in its remit of “producing evidence-based guidance and advice”,

-raises questions on the point of its scientific review process,

- and by extension its existence as a government agency.
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https://doctorswith.me/the-nice-debacle-will-nice-survive/

There is just too much matter to grasp for any one person.

Sincerely,
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cassava7 said:
@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.
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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.
 
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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.
 
cassava7 said:
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 apply the DARVO tactic when confronted with legitimate criticism.
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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
 
Hutan said:
Doctors with ME claim to be

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.


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.)
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Good post
 
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