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News from Doctors with ME

Discussion in 'News from organisations' started by Wyva, Jun 29, 2021.

  1. Andy

    Andy Committee Member

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  2. Braganca

    Braganca Senior Member (Voting Rights)

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    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.
     
  3. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    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: Jun 21, 2022
    alktipping, MEMarge, Annie and 13 others like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    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’.
     
  5. Andy

    Andy Committee Member

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    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: Jun 23, 2022
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Louie41, alktipping, MEMarge and 8 others like this.
  7. CRG

    CRG Senior Member (Voting Rights)

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    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
     
    MEMarge and Peter Trewhitt like this.
  8. bobbler

    bobbler Senior Member (Voting Rights)

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    2,311
    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?
     
  9. Trish

    Trish Moderator Staff Member

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    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: Jun 23, 2022
    Bron, alktipping, MEMarge and 8 others like this.
  10. Andy

    Andy Committee Member

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    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: Jun 23, 2022
  11. Trish

    Trish Moderator Staff Member

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    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: Jun 23, 2022
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  12. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    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.
     
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  13. Trish

    Trish Moderator Staff Member

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  14. Andy

    Andy Committee Member

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    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.
     
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  15. CRG

    CRG Senior Member (Voting Rights)

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    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.
     
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  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    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?
     
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  17. Tia

    Tia Senior Member (Voting Rights)

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    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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  18. Trish

    Trish Moderator Staff Member

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    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.
     
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  19. Tia

    Tia Senior Member (Voting Rights)

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    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?
     
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  20. NelliePledge

    NelliePledge Moderator Staff Member

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    alktipping, MEMarge, chillier and 9 others like this.

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