News from Doctors with ME

Celebrating one year of impact from Doctors with M.E.

https://meassociation.org.uk/2022/06/celebrating-one-year-of-impact-from-doctors-with-m-e/

 

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.

 

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.

 

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/

 

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?

 

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

 

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?

 

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.

 

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.

 

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.

 

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.

 

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?

 

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've given the statement a better read through. I agree with Trish, some good ideas but it needs to be edited for clarity. Some of the sentences are not well written. Has anyone else been able to watch the video?