News from Doctors with ME

Fortunately it is Nina Muirhead who is actually involved in one of the government working groups and I have a lot of respect for her. I think she will have been appointed to the role because of her work on what was then called the CMRC chairing their medical education group and producing an online training module, and her research on the lack of ME in medical education.

As far as I can see this appointment is not directly because of her position in DwME. She is there as a pwME with relevant experience in medical education, not as a representative of DwME.
 
I wonder to what extent the 17 odd "Honorary Fellows" (a role I was offered last year but declined to accept) are aware of the publicly expressed concerns about this group's communication style and content?

Several of the "Honorary Fellows" and most of the Board of Governance (Muirhead, Geraghty and Ramyar) are members of S4ME but are choosing not to engage in this thread.
 
Below is my mail exchange with Dr Hng about the issues with DwME’s communications (also sent to Drs Geraghty & Muirhead). To summarize, Dr Hng says that patients should read only what they are able to understand — such as the note for GPs about the new NICE guideline — and skip the rest. I find this unacceptable.

My first mail & addendum (1)
Hardly comprehensible DwME communications

Dear Drs Geraghty, Hng, Muirhead,

I am reaching out to you to express my concerns over the communications issued by Doctors with ME.

The language used in these communication is overly long and unnecessarily complex. As a ME patient with cognitive impairment, I struggle to 1) understand the wording and 2) read, hear or watch communications in their entirety.

I am not alone in this regard. One fellow patient, who has tried to contact you about this issue, said the following of the latest video presentation on “Normalized medical rule breaking”:

Very concerned you are representing patients. This presentation is impenetrable. As many of us have stated, DwME needs a new communications person. The ideas are presented in such dense, over-wrought, corporate-speak — it comes across as unprofessional and bizarre.

Patients have been alarmed for a year with the bizarre DwME communications materials. (…) Patients do not want to be represented in this way. We’ve already been accused of being crazy — this doesn’t help.
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I am not sure who handles DwME’s communications, although I believe it is Dr Richard Ramyar. I am thankful for his dedication and work for DwME, but feedback from ME patients doesn’t seem to be getting through to him. This is not only unfortunate; as pointed out above, it is very likely to hinder DwME’s reputation and legitimacy going forward.

At this stage, seeking professional PR advice and/or training seems advisable to simplify DwME’s communications, especially in order to make them more accessible to ME patients (who are DwME’s primary audience). Should this be impossible, the person in charge of DwME’s communications should at a minimum be asked to shorten them and to use simpler wording.

For the benefit of all ME patients represented by DwME, I please ask of you that you deal with this issue as soon as possible.

Respectfully yours,

————-

I should add to my previous mail that in comparison, I am able to read what all three of you have published about ME — whether it be Dr Geraghty’s research articles, Dr Hng’s book or Dr Muirhead’s blog entries for the RCP and the BMA.

Of course, these publications address different issues than Doctors with ME’s primary goals (medical education and policy on ME); that said, they are not a long way off. I am aware that you all have too much work on your hands to handle DwME’s communications yourselves, but I mean to say that it would be good to see the writing style converge towards these examples.
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Dr Hng’s reply (2)
Thank you for bringing this issue to our attention. We are aware that some patients have difficulty understanding some of our communications, and for understandable reasons given the effects of the illness. We would suggest that where this is the case, patients should focus their attention onto the parts of our work which they are able to understand, such as our guidance for GPs:
https://doctorswith.me/nice-gp-update/

Our audience is not just patients. We are a professional association and to achieve our objectives we must engage with many other organisations, all of which require different types of communication. Where this is shared publicly for information and education, those who are unable to follow can skip them. Where possible we strive to provide simplified versions, however this does take time to produce and is limited by our capacity and need to prioritise our work. To illustrate, the video to which you refer is itself a summary of our extensive Medico-Legal and Compliance work, taylored to the needs of the present political situation.
https://doctorswith.me/compliance-c...l-disease-risks-and-rising-pandemic-exposure/

I hope this clarifies matters.

Regards,

--
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 reply & addendum (3)
Dear Dr Hng,

Thank you for your reply, which is similar to the one I received from Dr Ramyar.

I do understand that DwME’s audience includes representatives of official institutions, including the DHSC and politicians. But, equally, I am not confident that they are very willing to attentively read long communications with overly complex wording — they are busy people, after all —. At best, they will skim through them and won’t memorize much, especially if the main points are lost in intricacies.

Contrast this with shorter pieces where ideas are expressed in relatively plain language to be remembered. Technical where it needs to be, but as sparsely as possible. This is a more effective mean of communicating with (busy) officials.

Thus, I stand by my point: DwME’s communications need to be simplified, and not only for the sake of ME patients. It does not suffice to say that patients should skip reading most of DwME’s communications. Besides, this idea is rather concerning; they are directly impacted by DwME’s actions (including your communications), so their right to be informed accessibly must be guaranteed. This is not the case as of now, as explained in your reply.

Sincerely,

——————-

If I may add a better example, the recent parliamentary report Rethinking ME is a document that is tailored to the needs of the political situation around ME (as closely as we could have hoped for). Previous reports from Forward-ME can also be taken as examples. Yet, those uses fairly easily comprehensible language; if it possible there, why could it not be for DwME’s communications?
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Dr Hng’s reply (4)
For reasons of confidentiality, effectiveness and mutual respect, we are not able to divulge all our work or communications with other entities. Nor is there any requirement for such guarantee.

The other works you mention are valuable contributions. We bring to the table something different which they do not address - how to achieve the change they call for. To summarise from the video: Education and simply hoping for behavioural change following education will not be sufficient. Change must be mandated.

That is, explicit legal enforceability and the removal of optionality. Not everyone will understand these concepts and that is ok. The video is nevertheless provided as information and education for many to whom it is relevant, including providers, practitioners, indemnity providers and lawyers.

Hope this clarifies matters.

Best wishes,
--
Dr. Hng
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My reply & addendum (5)
Dr Hng,

I feel as though you are missing my point. I understand your objective (ensuring liability for medical harm caused to patients with ME).

The issue that I am trying to explain is that there is no need for the kind of grandiose, overly verbose and complicated and quite weird phrasing that Dr Ramyar uses in DwME’s communications. It is just hard to understand, does not look professional and serves no purpose other than negatively impacting DwME’s reputation. Please excuse me for putting this bluntly, with the hope that my point better comes across, but if you are using the same over-the-top language with the DHSC, it is probably raising their eyebrows and giving them headaches.

More than a few knowledgeable ME patients have warned you that it will hold your progress back on the political, medical and legal fronts, as early as your first communication last year. You represent us, and we are trying to give you feedback so that DwME improves as an organization, so please hear us out on this language / comms issue. That is all I am saying.

Sincerely,

————-

I will add yet another relevant example: Valerie Eliot Smith’s blog, Law and Health. She writes on similar topic that DwME works on, sometimes with full length articles, yet with understandable language.
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Dr Hng’s reply (6)
Thank you for all the examples you are highlighting. I am aware of them all. All of these works have their place in the fight, and we have ours. That video is not the only communication we have made on this issue therefore please do not make your judgement based just on it. And it has produced results therefore unlike what some will believe, it is effective.

I trust the matter is settled and that we will see no cyber bullying.
--
Dr. Hng
Founder, Doctors with M.E.
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My reply (7)
Dr Hng,

So be it. Throughout our mail exchange, you have made clear that you won’t listen to feedback from patients whose lives are directly impacted by DwME’s work, and that you do not feel it should be a priority to make all of your communications accessible to them, despite their right to be informed.

I am profoundly saddened to arrive at this conclusion, as I expected that a group that represents ME patients — whose voices are all too often unheard — would provide a listening ear to constructive criticism coming from them. Instead, a wall has been erected between DwME and patients (at least on this key matter), and if my understanding is not mistaken, you classify this criticism as “cyber bullying”.

I hope that you will reconsider your position in the future, for the sake of ME patients and also of DwME’s success.

Sincerely,
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Edit:

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.
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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,
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Further edit:

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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Addendum to my final mail, with examples (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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The last 2 mails can be found here: https://www.s4me.info/threads/news-from-doctors-with-me.21251/page-10#post-425415
 
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Thank you for bringing this issue to our attention. We are aware that some patients have difficulty understanding some of our communications, and for understandable reasons given the effects of the illness. We would suggest that where this is the case, patients should focus their attention onto the parts of our work which they are able to understand, such as our guidance for GPs:
https://doctorswith.me/nice-gp-update/

Our audience is not just patients. We are a professional association and to achieve our objectives we must engage with many other organisations, all of which require different types of communication. Where this is shared publicly for information and education, those who are unable to follow can skip them...
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Not an acceptable response.
 
I have added Dr Hng’s final reply and my own to my post above (mails 6 & 7). It feels particularly egregious to be accused of cyber bullying.

Edit: I have sent the following final mail. I will not be communicating with Dr Hng further.

Please allow me to say as well that I feel nauseated by your accusation of “cyber bullying”, when I am spending what little energy I have, from my bed, trying to provide suggestions on how you may improve your communications.

Is this behaviour towards a patient better than Michael Sharpe’s or Simon Wessely’s?
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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.
 
Can a patient 'cyber bully' an organisation?

To me it reads more like 'go away or I'll let the dogs out', or 'shut up'.

Didn't even bother to go through 'vexatious' but went straight to 'I don't like what you're saying so you're a bully'.

Really quite 'bad'.
 
I trust the matter is settled and that we will see no cyber bullying.
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Mmmm. Reframing the raising of legitimate concerns as potential "cyber bullying" is not an acceptable response, either.
Where have we seen this before?

I have lost all confidence in this group's ability to function effectively and I am so glad I decided not to have my name added as an "Honorary Fellow" because after these responses from Dr Hng, I would have stood down (had I not done so already).
 
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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.
 
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The things I find most significant in Dr Hng's replies:

1. She is able to summarise the whole of the long and wordy video in 2 short clear sentences:
Education and simply hoping for behavioural change following education will not be sufficient. Change must be mandated. That is, explicit legal enforceability and the removal of optionality.
[Edit - I have realised I copied 3 sentences not 2. The third isn't necessary, it just jargonises the second]

2. She seems to be arguing that in order to communucate this straightforward suggestion to government bodies, it needs to be made long and complicated and full of jargon, rather in succinct plain English, in order to be effective.

3. That brain fog equals stupid, and patients with brain fog should be excluded from DwME communications. That is incredibly insulting.
 
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Tia said:
I really don't think glass ceiling is the right phrase here. I've given it just a quick skim (very quick!) and I think he's trying to say that there will be limits to what can be achieved by working groups unless DwME's advice is followed. But glass ceiling has specific connotations. It doesn't just suggest limitations but specifically limitations on a person's career advancement within an organisation due to sexism or racism. It is quite confusing in this context. Or is that just me?
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NO you are correct on context and that being what most people think of it as. I guess the picture it is drawing in the phrase is that of seeing above a certain stage but not being able to get there

I think the more common types of phrase in this context involve terms like 'with teeth'. Because it is about what they can do, and how they might be limited in it rather than 'position'.

Analogistic words/phrases in business tend to be to make things more straightforward to communicate and reduce confusion, and get a specific concept across in few words: 'does what it says on the tin', 'segmentation', 'failure demand', 'mass customisation'. It's why I don't know whether the context demands convoluted language, but it's not normal business-speak in general - I love the business literature for its focus on ease of reading - half your time on essay-writing needed to be working out how to get it across, edit it down to simplicity etc. They don't have the privilege of having that time/energy (EDIT so I give grace on that basis to that being a cause rather than it being intended necessarily).

I feel for them, because the issue here is too much to bite off in too short a time. It's strange for example we have not even managed to do a good job of describing the 'stigma', where and how it occurs and mapping that: how it actually operates. What the causes are. In many similar situations that would be something they would be able to 'go from'. There are all sorts of similar bits.

They also haven't had the time to do a strategic 'stand back from the post-it board' to see whether there are better ways of tackling what are big issues needing moves that don't pull their punches. SO I can see why they've grabbed a model and worked it through systemically ... I just don't know whether they've thought about the best way to 'sell' or make changes 'work through naturally' (it might be right? I just haven't had time to think on it). We are really talking about a few massive things: culture change being one of those massive nuts affecting 'each part' of the problem/solution.
 
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Braganca said:
Honestly.. I am a communications professional. This is not a normal way to present ideas. He says on Twitter:


So.. they’re representing us, again making patients look crazy.
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Am I right in thinking that it is not abnormal to have a professional team in with you to work out what you want to say? EDITED TO ADD: Actually the better-cultured set-ups actually value the input of professionals who can help with defining what is possible in a timeframe when project managing, and actually help with brainstorming-->end output etc. rather than seen as someone magicking the impossible when they are placed at the end of the chain/minionesque (so to speak). The involvement of the right people at the right points and sign-offs are pretty vital

e.g. Non-ME head-honchos have executive officers who write/draft speeches (because they are in all the meetings they speak at, taking instruction and doing all the research they read summaries of) which are then edited and signed off. Websites are done by specialists who work to get briefs for how they want it to come across etc.

They are trying to redo a whole website at the same time etc. yet don't seem to have teams involved

When you've got ME it would seem to be even more essential that you build up these working relationships in order you've managed the sustainability of what you are doing, as well as not trying to learn these specialist skills from scratch in the middle of a peak work-time?
 
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Trish said:
1. She is able to summarise the whole of the long and wordy video in 2 short clear sentences:
Education and simply hoping for behavioural change following education will not be sufficient. Change must be mandated. That is, explicit legal enforceability and the removal of optionality.
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And even that could have been written in simpler language.

With regard to the aforementioned disquietude regarding the appropriateness or otherwise of the disseminations published in the name the group under discussion, I would respectfully propound the advisability of exercising the optionality of giving due consideration to the mandates for wordsmiths as posited by George Orwell in his esteemed disquisition Politics and the English Language:

“i. Never use a metaphor, simile, or other figure of speech which you are used to seeing in print.

ii. Never use a long word where a short one will do.

iii. If it is possible to cut a word out, always cut it out.

iv. Never use the passive where you can use the active.

v. Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent.

vi. Break any of these rules sooner than say anything outright barbarous.”


Despite my criticism, I would also like to emphasise that I have a great deal of respect for most of the members of DwME. I just wish that the group would improve its communications.
 
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