News from Doctors with ME

petrichor said:
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
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The emails were not personal correspondence. They were between an office holder of DwME and a person with ME/CFS politely expressing concern about DwME communications.

I think @cassava7 has remained very civil and respectful, despite some pretty astonishing replies.

I think it is useful to see the emails, as it helps us understand more about how Doctors with ME are operating.
 
Hutan said:
The emails were not personal correspondence. They were between an office holder of DwME and a person with ME/CFS politely expressing concern about DwME communications.

I think @cassava7 has remained very civil and respectful, despite some pretty astonishing replies.

I think it is useful to see the emails, as it helps us understand more about how Doctors with ME are operating.
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Unless explicit permission has been received I think a lot of people would respond negatively to their emails being posted on a public forum and being subjected to criticism. Yes Cassava has certainly tried to stay civil and respectful, I'm not trying to be too critical of anyone here.

It is useful to see the emails, so I'm not really saying this is a clearly wrong thing to do. But I think it's useful to try to be considerate of how people may feel about things
 
petrichor said:
Unless explicit permission has been received I think a lot of people would respond negatively to their emails being posted on a public forum and being subjected to criticism.
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@cassava7 did not leap to post the emails here from the beginning. As far as I can see, it was only when it was clear that polite feedback was being described as bullying that the emails were posted. The issue that was being discussed is not a new one. Doctors for ME have been given feedback about the issue with their communications for a year, and still the problem goes on.

Yes, there is a need to balance having due regard for someone's privacy, and transparency for the public good. I think the content of the emails tipped the balance towards transparency.
 
petrichor said:
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
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Dr Hng’s mail is publicly available from Doctors with ME’s website, which is where I obtained it. As for our correspondence, there is nothing that obliges confidentiality. I feel it is important for the community of patients to know what people who represent them (as I said, whether officially or unofficially) think of their feedback, and our exchange unfortunately shows that there is little consideration for it. This is why I posted it.

I should add that no personal information was shared at any point in our exchange (except once, on my end, in the last mail). Had it been the case, I would have asked for permission to publish it or redacted it.
 
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It's not the first time we've had a self-appointed ME advocate charging off in their own way without reference to anyone else, ignoring other advocates, organisations and patients with decades of experience when they try to engage with them. It seems that when it comes to ME anyone can set themselves up as an advocate claiming to represent us and do whatever they want however they want. It's very annoying when they insist that they are helping whilst actually being something of an embarrassment. We don't need another saviour doing their own thing, impervious to feedback, insistent that it's for our own good. As if we hadn't got enough to deal with without the regular appearance of self-appointed loose cannons charging past.
 
cassava7 said:
Dr Hng’s mail is publicly available from Doctors with ME’s website, which is where I obtained it. As for our correspondence, there is nothing that obliges confidentiality. I feel it is important for the community of patients to know what people who represent them (as I said, whether officially or unofficially) think of their feedback, and our exchange unfortunately shows that there is little consideration for it. This is why I posted it.
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I think you are right to post it. There is a difference between the permission that should be sought before sharing personal correspondence between two private individuals, and this case.

This involves a director of an organisation (DwME) replying to emails addressed to them in their role of director, and writing therefore on behalf of and about DwME on a matter of wider concern to the population DwME aims to serve.

I think it's a bit like someone writing to their MP on a matter of government policy and making the reply public. That seems to me entirely legitimate and not needing permission.
 
petrichor said:
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
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Both Ramyar @InfiniteRubix and Nina @EducateME participated in the members only thread and welcomed feedback — until people became alarmed last July at very odd tweets. They stopped responding on the forum and wouldn’t engage on email. We would all certainly welcome their renewed participation here on forum.
https://www.s4me.info/threads/doctors-with-me-discussion-thread.20246/page-5
 
I received what seems to be a definitive reply from Dr Hng, in which I am told that she is open to feedback and has listened to mine but she does not agree with it.

Instead, according to her, “angry” patients on “unhealthy” online fora (which I understand to be S4ME) may well be turning this discussion into a “hate party”, which constitutes “cyber bullying”, and my “public attack” on DwME’s video causes great “harm” to them. For a reason that elapses my understanding, she also seems to think that I have been influenced by such patients.

Perhaps her most noteworthy point is that she thinks patients have a responsibility to support DwME, irrespectively of what they do.

Dr Hng’s reply (13)
I genuinely do not wish to engage further on this topic therefore this will be my last message.

I get the principle of being open to feedback etc. However we must disagree on the endpoint, and indeed the methods employed. It is not possible to get to a point where no patient is unhappy about anything, even if only looking at one issue, such as communication. And for patients to think they have a right to continue to insist on their way and never drop the subject, never move on, is bullying. It may not be meant in that way but the effect is the same - an attempt to push the other person into something.

If you speak to anyone who knows me, you will find that I am extremely open to feedback. I am a most humble, unpretentious person. Problems occur when patients think that listening = agreeing. That is not so. I must apply my own judgement. And if I should disagree with someone, they should respect that. Sadly, there are many who are unable to do this. There are many who become very angry.

Patients should realise that they may not know all the factors involved, give the other person some respect, and refrain from making arrogant, disparaging statements in online fora. Patients should also realise the motives of other patients who attack advocates are not always what it seems. Patients should have the humility and respect to accept that another person CAN have different opinions from themselves, even after listening carefully to their point of view. Listening does not automatically = agreeing and patients must find a way to accept this, not assume that firstly, they understand every factor, secondly, that they are right and the other person is wrong if they disagree, and thirdly, that if the outcome is not as they desired it means the other person hasn't listened to them or heard them. And lastly, patients should consider the harm of their own actions.

Our community is sadly, though understandably, full of anger and often that anger is misdirected and directly harms other patients, most usually prominent advocates. While understandable, it is not acceptable. But there is worse. There are unhealthy personalities out there who revel in stirring up such trouble. There are many mistruths out there and I urge you not to take everything you hear about any person or organisation at face value.

Harm is not just the damage done to the person being bullied. This public attack damages the cause. Even more so when most of it is inaccurate or misrepresented. I have seen things get so vicious, so personal and so unsubstantiated, as to warrant the term "hate party". It is not the advocate standing by his own judgement that causes ME patients to be labelled as "crazy", but the public infighting and ill-considered behaviour of the perpetrators of online bullying. Consider for a minute the damage done in this instance over our video. Do you think it is good if UK politicians think DwME has no support from patients? Or is it better that they see huge support from patients, demanding that they listen to us?

Patients have rights. However they also have responsibility. Accountability is not just for doctors or advocates, and rights do not extend to bullying or disrespect.

I hope this helps to give you a more complete understanding of the issues surrounding the handling of disagreements, beyond simply whether you like a video. Perhaps you will consider reviewing which online fora are healthy and helpful places to go, and which are not. Good day.

--
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"
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My reply & addendum (14)
Dear Dr Hng,

I am frankly disappointed that you keep misrepresenting my concerns as “not liking a video” when I have extensively explained them, and more importantly, I am worried for Doctors with ME that you interpret legitimate criticism of your work as “anger” — going so far as to say that it could be turning into a “hate party” —.

My mails have been respectful and on topic, and from what I have seen, so have the responses of ME patients on online fora, even though you may disagree with them. For that matter, while I have not been able to read all the follow-up to our discussion online, nobody has been insulted to my knowledge. If you have been, then by all means, please report any inappropriate post.

Despite what you seem to be thinking, I am not angry. I was quite upset, justifiably, that you asked for personal information on me behind my back, and that you posted someone’s picture on a Facebook group with hundreds or thousands of members *without their consent*. Whether you recognize it or not, this is bullying behaviour and it is intolerable. However, that is not the matter we were discussing and it has as such not appeared in previous mails.

At the end of the day, unfortunately, what has come out of from your side in our discussion is an unwillingness to listen to and dismissal of the concerns of many well-meaning patients, along with unwarranted accusions of “cyber bullying”, “anger”, “hate”, “disrespect” when confronted with well-founded criticism. This also seems clear when you (implicitly) qualify Science for ME of “unhealthy” fora, when it is (as far as I know) the only online outlet where ME news and research are discussed critically, and when it has significantly contributed to ME advocacy in the UK and abroad (most notably with the NICE guideline).

I understand that you have faced cyber bullying, but as I said, this is not it. Distorting public scrutiny of your work because you do not agree with it is certainly not going to help Doctors with ME grow into the organization that it strives to be. If you do not want public scrutiny, then DwME should stop issuing publications and keep all affairs internally. This is obviously not desirable, as you state that you mean to empower ME patients.

You ask that patients support Doctors with ME, and even say that it is a responsibility that they should be held accountable for. I will break this down into four points below.

First, there exists no such legal or moral responsibility. Conversely, DwME has no right to be automatically supported by patients whenever it does something.

Second, it is utterly wrong to think that criticism does not equate support. As I have said previously, if patients did not care about DwME, they would not bother spending their limited energy on giving feedback. I, for one, want DwME to succeed, and this is why I am trying to get my point across to you.

Third, if you dismiss criticism from patients who want to help you and go on to distort it, as you have done here, do you truly believe it is realistic to ask for their support?

Fourth, there is a precedent that you can refer yourself to: the dismissal of concerns from patients is why some of them have lost trust in the two main ME charities (MEA and AfME). I can only hope that history will not repeat itself.

Finally, what reason or evidence is there to think that any “harm” or “damage” has been done to your video? There have been no comments on social media suggesting that this may be the case, whether on YouTube or Twitter. (I almost never log into Facebook, but I do not suspect that your video has been harshly criticized there.) Further, it makes little sense to think this, because most patients seem to support the message you convey in this video; they simply struggle with its form. I invite you to take a step back and look at this objectively — as in, with metrics / analytics —.

Sincerely,

———-

I forgot to mention that my mails have not been influenced by any external party, especially not by “unhealthy personalities who revel in stirring up such trouble”. I am able to express my concerns on my own, and I do not understand why you would think otherwise.
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So many red flags... :(

One thing (of many) that I find very off-putting about this is how DwME seem to be distancing themselves from other pwME by referring to everyone else as a group of "patients".

They could have chosen to relate to Cassava7 as a fellow pwME or fellow activist/advocate, a peer who is working towards the same goals. Or simply as a person, an individual.

DwME are "patients" too, no?
 
mango said:
So many red flags... :(

One thing (of many) that I find very off-putting about this is how DwME seem to be distancing themselves from other pwME by referring to everyone else as a group of "patients".

They could have chosen to relate to Cassava7 as a fellow pwME or fellow activist/advocate, a peer who is working towards the same goals. Or simply as a person, an individual.

DwME are "patients" too, no?
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Yes this DWME /= patients thing is a huge red flag, they are not OUR doctors, and I thought were marketing themselves as fellow advocates. Also, if they were our doctors, a few things they have said do not reflect best practice when it comes to respectful communication to, and about, patients.

ETA its not just distancing, its a power play

ETA.2 - there is so much irony and self contraction in the last reply I don't even know where to start.
 
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mango said:
So many red flags... :(
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Indeed.

It is not what other people are saying about her, but dr Hngs own attitude and words that make me lose confidence in the healthy and professional demeanor of DwME, or at least in hers.



I actually really like some of the the concrete steps DwME are taking and what they are aiming for. But the communciation around them really is appalling, and I think they should recruit a communications expert ASAP to get their good aims translated into solid communication around their views and planned actions, because this is, as others have pointed out, very embarrassing, and gets in the way of their effectiveness.

The link @Sly Saint just posted that leads to the latest post on their website, 'Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review', what is happening under the subtitle Replacing Working Group Glass Ceilings with Enforceable Minimal Standards (cringe, btw.), is a good illustrating example.

An example:

The text accompanying the video is delivered with the ususal bad use of language, among other things it says "We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this." A good press release writer would then have given a short summary of these 4 points, and referred to the video for detailed discussion of them, but this text doesn't. Instead it keeps referencing the 4 point criteria, but as the reader has no idea what they are, they can't fully comprehend what it is DwME wants.

Also, things like: "Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will empower all ME patients with specific rights that have been made immediately applicable to disease realities,..." are not sentences, nor does it make sense in content, and it's rather embarrassing that that can even easily be pointed out to them by someone who isn't from an english speaking nation.
They seem to have meant to say that the 4-Point framework will make ME patients aware of the rights they have, thereby empowering them to exercise those rights in situations that are related to their disease where they might get violated. Or that working according to the 4-Point plan has adherence to patients' rights built in and explicitly emphasised, and this means patient rights will be adhered to automatically when the Work Group recommendations or policies are applied in actual concrete situations, which benefits patients.

(Btw., the author really needs to work on how they use the word empower, it reminds me of an earlier comment of mine: " 'empowering someone with scientific rigour' sounds like a kink, not a policy goal" :laugh:)

Communicating with professional parties does not mean you can just blurb out any old woolly, incorrect and grammarly challenged communication that sort of vaguely gestures towards what you mean. Quite the contrary, professional parties make use of communication experst to razor-sharply use language in a way that most benefits their interests, which in practise (e.g. in politics or industry) can mean throwing up a smokescreen of language, but there that is done on purpose, and still making sense when reading the sentences.


Edited 26/6 to make the start of a sentence say what I meant it to say. (Wrote it early morning and took a shortcut.)
 
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I get the desire for in-group identification through the use of "business/legal language". But much of this is just obfuscated. It could be so much more effective. Honestly, just a bit of editing could both simplify and add impact to the messaging. Eg —

We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this.
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would have been better as —

We offer a simple 4-point approach to achieve this: Obligations, Rights, Risks & Liabilities.
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I'm no expert like @Braganca and others here, but that seems to lead the eye so much better on both first read and when referring back.
 
There are a lot of things that could be done better. The tone, verbiage and style shouldn’t get in the way of the message to such a huge degree. I’ve never seen any other org or charity put out the kinds of materials and posts that DwME do. It’s easy to avoid. Its possible the other directors do great work in this org that we are unaware of bc it’s all overshadowed by this issue. It’s also possible the person doing communications is really effective in other roles.

But the recent pieces are not the entire problem. There were issues with the way they define ME, inaccurate statements in their communications around the NICE guidelines. There were claims they made about helping ME patients get annual flu vaccines. There were these very long problematic threads on DwME Twitter account which quoted some of Richard Ramyars account.

Anyone who thinks this thread is unnecessarily attacking DwME needs to read the history. These are genuine concerns that could have been addressed.

It seems like one person is running the communications — this is an issue. That person seems to represent DwME entirely. Most posts and presentations are not attributed to a single author but seem to be under the umbrella “Doctors with ME”. It’s unclear if if means just the four directors or all the HFs. If communications that are this problematic are being attributed to either 4 or 21 doctors — those people should approve the message and content. It’s clear from Keith that he has not been involved in the content.

What was a slow simmering issue all last year has now become a bigger issue because DwME are saying “they” are involved at high levels of the new government effort to address ME. We all know that Nina Muirhead will do a wonderful job in any advocacy role, but the concern is who else is involved and how they will represent given this history of bizarre or not entirely accurate comms.

In the U.K. there is a history of people w ME being denigrated and misunderstood and accused of having psychological problems. How ME orgs communicate with other doctors, senior levels of government, the health department etc. is just vitally important. It’s everything.

@Keith Geraghty has made the effort to engage. He is a reasonable person with a great history of working hard for patients. Nina is the same. I would hope some of the honorary fellows could also engage on this, and work together on materials and communications or simply put out less if there isn’t a writer to help. What does it mean to be either a Director or Honorary Fellow with DwME if not to engage on the message and ideas put forward?

(I’m not going to comment any further on this thread since it’s all been said at this point).

tagging some Honorary fellows:
@Tom Kindlon @Brian Hughes @Chris Ponting
 
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Braganca said:
There are a lot of things that could be done better. The tone, verbiage and style shouldn’t get in the way of the message to such a huge degree. I’ve never seen any other org or charity put out the kinds of materials and posts that DwME do. It’s easy to avoid. Its possible the other directors do great work in this org that we are unaware of bc it’s all overshadowed by this issue. It’s also possible the person doing communications is really effective in other roles.
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I think this is the real issue with DwME. I'm not sure what they are saying as I can't get past the communication style and now I don't bother looking.
 
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