News from Doctors with ME

Andy said:
Doctors with M.E. Registrants and Strategic Partners will benefit from a new digital platform that unifies education resources, course generation and corporate collaboration. Named after Florence Nightingale, the project will also deliver brainstorming, content creation and ‘war room’ planning capabilities for targeted policy and media outcomes. Organised around task-focused groups, the final platform will offer efficient coordination of projects, campaigns and joint ventures in a secured environment.
Click to expand...
They’re building a new platform from scratch? What on earth.. there are loads of cloud based digital tools for these types of activities.

Andy said:
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.
Click to expand...
Well, the flowery dramatic language sounds familiar.
 
Braganca said:
They’re building a new platform from scratch? What on earth.. there are loads of cloud based digital tools for these types of activities.

Well, the flowery dramatic language sounds familiar.
Click to expand...

Doctors with M.E. Registrants and Strategic Partners will benefit from a new digital platform that unifies education resources, course generation and corporate collaboration. Named after Florence Nightingale, the project will also deliver brainstorming, content creation and ‘war room’ planning capabilities for targeted policy and media outcomes. Organised around task-focused groups, the final platform will offer efficient coordination of projects, campaigns and joint ventures in a secured environment.
Click to expand...

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.
Click to expand...


I cannot take seriously anything written in the style above and I wonder how the site content is being viewed by professionals.

It doesn't appear that any of the directors of DwME have taken on board the many publicly and privately expressed concerns about how this org presents itself and its communication style.

I would like to see Dr Hng, Dr Nina Muirhead and Keith Geraghty address these concerns.
 
Last edited:
Dx Revision Watch said:
I cannot take seriously anything written in the style above and I wonder how the site content is being viewed by professionals.

It doesn't appear that any of the directors of DwME have taken on board the many publicly and privately expressed concerns about how this org presents itself and its communication style.

I would like to see Dr Hng, Nina Muirhead and Keith Geraghty address these concerns.
Click to expand...

Hopefully they also stop overstating what we can authoritatively say about the biological basis of ME, as this gives antagonistic readers an excuse to dismiss what Doctors with ME say. Though I agree with most of what they say, they can be more emphatic than the evidence warrants, going from ‘may’ or ‘is likely’ to ‘is’.
 
Copied from this thread to keep discussion together:
UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review

"Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.

Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice. Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field.

We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this. Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will:"

https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/
 
Last edited by a moderator:
Andy said:
Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review

"Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and perpetuate likelihood of future frontline failures. Durable outcomes are needed that can survive current and future processes. Legitimacy and public health outcomes both depend on this durability. Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.

Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice. Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field.

We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this. Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will:"

https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/
Click to expand...
I think this may deserve a thread of its own. I've only listened to a small part and while the "management speak" is sometimes off putting, this looks like a very clever piece of work
 
Sly Saint said:
Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review

Replacing Working Group Glass Ceilings with Enforceable Minimal Standards

presentation

https://doctorswith.me/normalised-medical-rule-breaking-and-the-uk-dhsc-me-cfs-review/

is there a plain english version of this?
Click to expand...

I think that they have some important points to make and add.

For example I think the following relates to how dangerous hospital admissions can be for those with severe ME in particular currently (as well as plenty of other risky situations for those who get acutely ill/come across the wrong people etc).
"empower all ME patients with specific rights that have been made immediately applicable to disease realities, which will particularly benefit severely/very severely affected patients in high pressure situations"

But I agree that the clarity is an issue. And I say that as someone who is used to business-speak (certain terms are used to short-cut and make communication clear and unambiguous) and who understands and gets how ME has a horrible impact re: trying to get the right words to describe what you mean/are thinking. On a very good day/moment you nail the words, any other time and the more you edit and try the worse it gets. If non-ME people think understanding and translating it is hard, imagine the task-size for the cognitively fatigued person who has just done their best without support to make it clearer.

I really want to know, and be sure unambiguously what some of these points are. Looking at bits of the presentation itself I realise an issue is quite what a huge list of problems we have that need to be covered (size of job we have thanks to default being so wrong and so determined to hold ground).

I wonder whether some are ambiguous because they can't say exact examples of what they mean e.g. we need an officer in each hospital that can be called in to keep people safe, if someone with severe ME is 'up against it' with treatment/staff who don't understand.

Is this something that will go down well with the audience they are communicating with? If not, does anyone know enough about the situation here to see whether they would 'welcome help' or this is the preferred communication style etc?
 
CRG said:
I think this may deserve a thread of its own. I've only listened to a small part and while the "management speak" is sometimes off putting, this looks like a very clever piece of work
Click to expand...
I've attempted to follow the first 20 minutes of the 44 minute video, which says it's part 1.
I'm not sure it's that clever. I find the management speak is very offputting.
I think what is being said is that setting up working groups to advise on medical education, NICE implementation and research is not sufficient - and that the working groups should be given powers to mandate change with enforcable rules and obligations for professionals and rights for patients.

Edit to add: They are recommending a 4 point process for every recommendation made by the working groups. The 4 points are Obligations, Rights, Risks and Liabilities.
 
Last edited:
CRG said:
I think this may deserve a thread of its own. I've only listened to a small part and while the "management speak" is sometimes off putting, this looks like a very clever piece of work
Click to expand...
Well, if its about something other than the review started by Javid then it might, but as far as I can see, and I haven't bothered trying to watch the video, it isn't.

ETA: This post made more sense when it was on the UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022 thread, where I originally posted the article.
 
Last edited:
I have now watched the whole video.

I think the basis of this video is fine - it's vital if the consultation process is to achieve wholesale change to the way ME/CFS is understood and treated by clinicians and researchers, then just advising change is not enough, there needs to be some way to ensure it happens.

The approach taken here is to remind people that clinicians have obligations to update their knowledge and to practice scientifically sound medicine, and that there are legal consequences if they don't. The aim to give some legal heft to the groups, rather than just advising. The rationale for this being neccessary in ME/CFS specifically being that there is so much high level resistance to change coming from the medical profession.

The last part is about communication puts the case that there is no scientific argument about ME/CFS. That patients and scientists agree and that the problem is some clinicians practicing bad science.

I don't know whether any advisory group set up by UK politicians has the power to mandate the sort of actions suggested here.

Edit to add: I agree it's pretty difficult to follow at times, and could do with a half page plain English summary. There is some odd use of terms, like glass ceiling that I've already forgotten what was meant.
 
Last edited:
It seems strange to me to post to the public a list of improvements that DwME think need to be made to Javid's ME review, without any indication that they will be targetting their ideas to people who could actually implement them, especially when the initial meetings of each sub-group have yet to happen. Hopefully they will be communicating their ideas to the DHSC people as well.
 
Robert 1973 said:
Yes, as usual, I find the language almost impenetrable. It’s strange because most of the fellows usually write very clearly. I wish some of them would have a word with whoever is producing these texts. They do not reflect well on the group.
Click to expand...
The reason I said above that I though it was a clever piece of work is precisely because of the language.

I may be over crediting the creators but it seems to me to be set in exactly the legal and managerial language of the NHS and therefore challenges the rule breaking as identified in precisely the terminology in which the rules are conceived of by those charged with applying the rules. And it appears to capture via legalism, all the harms of the UK BPS approach to ME/CFS, in a way that has not been previously been achieved in the language of patient advocacy.
 
Robert 1973 said:
Yes, as usual, I find the language almost impenetrable. It’s strange because most of the fellows usually write very clearly. I wish some of them would have a word with whoever is producing these texts. They do not reflect well on the group.
Click to expand...

I think it's Richard Ramyar. I have never in all my years working as a medical editor known such obtuse opaque language. What on earth even is a "working group glass ceiling"?

How can anyone engage with this when it's so unclear what any of it means?
 
Lucibee said:
I think it's Richard Ramyar. I have never in all my years working as a medical editor known such obtuse opaque language. What on earth even is a "working group glass ceiling"?

How can anyone engage with this when it's so unclear what any of it means?
Click to expand...

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?
 
I agree, glass ceiling tripped me up too.
As to the use of language, I think all ME docoments should aim for clarity, whether addressed to politicians and civil servants, or to clinicians or patients. I think there are some good ideas in this, but it's hard work trying to get the gist.
 
You must log in or register to reply here.
Back
Top Bottom