Maeve Boothby O'Neill - articles about her life, death and inquest

Binkie4 said:
REGULATION 28 REPORT TO PREVENT FUTURE DEATHS THIS REPORT IS BEING SENT TO:

1. Andrew Gwynne / Wes Streeting Department of Health and Social care
2. NHS England
3. NICE
4. Medical Research Council
5. National Institute for Health care and Research
6. Medical Schools Council

I wonder if all these bodies have responded eg the Medical Schools Council needs to ensure that training is brought up to date. Do we know anything about this?
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They are under no obligation to reply
 
Not sure where to put this, but the question and answer in parliament was about a final delivery plan for ME due to be delivered in March 2025.

we’ve always heard of an interim delivery plan. Do we think this is a simple error or is the plan now going to be final and complete?

Attached screenshot of Andrew Gwynn MP stating final delivery plan in March 2025
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Nightsong said:
Actually, they are under an obligation to issue a response to the coroner. They're just not under an obligation to take any meaningful action; they could also take some action that was less than meaningful, or explain why they thought no action was necessary.

A huge problem with the PFD system.
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Ah yes! They are under no obligation to act. They can reply to say we’re taking no action. I stand corrected.
 
dave30th said:
They all seem to have except for NIHR.
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Thanks @dave30th. Have you seen the response from the Medical Schools Council?

edit: I googled and found this; not a response to the Coroner ( dated May) but a sort of commitment.

"The Medical Schools Council will promote shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS .21 May 2024".
As patients, we would need to be involved with this. Anyone know anything about it?
 
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Peter Trewhitt said:
This is an important issue. The mismatch between what is actually known about our condition and what the majority of professionals in the UK supposedly supporting us believe, and the bizarre language games they play to maintain their unevidenced beliefs.

You could put the slides on the BACME thread or if you thought they would form the basis of a useful discussion start a separate thread just for them.
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I would if I knew how, will look into it but what would be better? I often put too much on. Now looking at the released the cross-government plan just released. I think I could work on showing how they confuse the words on there using the slides. Just sitting down to tweet this so here goes my plans for today
 
From the DHSC response, referencing the e-learning modules:
The second session will focus on management in primary care, covering personalised activity plans, concomitant conditions, such as mast cell activation syndrome and postural tachycardia syndrome, the psychological impact of being diagnosed with the condition, and what is not ME/CFS. The third session will cover management in secondary care, focusing on patients with more severe ME/CFS that require hospitalisation. This includes information on treatments and their potential benefits and risks, management of a patient who requires hospital admission, provision of a minimum stimuli environment, and support for healthcare professionals
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MRC said that:
MRC continues to engage with researchers, patient representatives and charity funders to identify routes to catalyse biomedical research in this area
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I wasn't aware of that. Anyone know anything more about this engagement?

The Medical Schools Council "asked medical schools to send me some examples of how they teach this important area", and shared three responses. The first medical school's response demonstrates that the respondent is part of the problem, referencing "biopsychosocial interventions":
Response 1 said:
We have a learning event in Year 1, in which students will learn about the clinical features, proposed pathophysiological mechanisms and biopsychosocial interventions for management for chronic fatigue syndrome/ME, fibromyalgia and post-covid syndrome. The students will build on this session in subsequent years. We think it is important to highlight the burden associated with these diseases and sequalae that can occur.
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The second medical school's response was also underwhelming:
Response 2 said:
In our curriculum we do cover CFS and chronic widespread pain. We have teaching materials on it in the Y4 Musculoskeletal and in the GP block and we cover the important area of differential diagnosis for fatigue
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The MSC did, however, copy in the Academy of Medical Royal Colleges and the GMC (which I was surprised the coroner omitted).

NICE has committed to:
• Review the evidence on dietary management and strategies for people with severe or very severe ME/CFS published since NG206 was introduced to determine if any specific amendments to the guideline are needed in this area.
• work with colleagues from the Royal Devon University Healthcare NHS Foundation Trust to see if there are examples of good practice that we can link to from our guideline pages.
• consider appropriate amendments to the guideline on ME/CFS to emphasise the need for appropriate nutritional support
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and seem to be interested in developing an update to the NICE CKS:
Additionally, we are already working with colleagues from our external supplier that produces NICE Clinical Knowledge Summaries (CKS) to determine if any updates to the section on fatigue are possible.
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Interesting elements of the NHS England response:
In addition, NHS England has also established a specific working group to determine if additional support can be provided to commissioners of ME/CFS services. A stock take of existing CFS/ME services in England is being undertaken as an initial step.
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and:
We understand that RDUH are in the process of developing formal pathways for acute admission and emergency admission for patients with ME/CFS and that the details of these will be shared with the Coroner by the Trust
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I was particularly surprised at this part of the response from NICE:
• Review the evidence on dietary management and strategies for people with severe or very severe ME/CFS published since NG206 was introduced to determine if any specific amendments to the guideline are needed in this area.
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Not that I know much about NICE's internal processes, but I was under the impression that if they re-opened the guideline, that would necessarily involve a formal process with the whole gamut of consultations and workshops and notices and comments and testimonies and calls for evidence and impact assessments: I didn't think there was a way of simply opening a guideline up for an edit on one subject. There is clearly a move towards "living guidelines" but it is not as if there is much in the way of ME/CFS specific evidence.

Presumably their evidence review will turn up nothing much beyond the Speight et al case series and they will decide against making changes?

The MSC's responses suggest that medical education related advocacy efforts should be a high priority.
Jonathan Edwards said:
Yes but I am not in a position to give specifics. It is a reality.
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Thanks. Another non-public effort, though? This is not at all aimed at you - quite the opposite - but perhaps the thing that annoys me most is that so much relating to pwME is done in secret: everything about us without us, or with the involvement of a few "patient representatives" who push themselves to the fore & often do not know what it is they are talking about at all. The whole DHSC process has been highly opaque and looks like it will be a complete muddle. There needs to be proper, broader, engagement.
 
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Nightsong said:
Presumably their evidence review will turn up nothing much beyond the Speight et al case series and they will decide against making changes?
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But as I mentioned earlier, NICE's hierarchy of evidence doesn't rule out non-RCT evidence, and includes:

NICE said:
'Colloquial evidence' can complement the scientific evidence or provide missing information on context (see figure 3.2). It may come from expert testimony (see section 3.5.1), from members of the advisory committees, or from stakeholder comments (see section 3.5.2). It includes evidence about values (including political judgement), practical considerations (resources, professional experience or expertise and habits or traditions) and the interests of specific groups (views of lobbyists and pressure groups).
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And the fact that PwME have been dying should (in any sane world) mean that a sane set of guidelines should be introduced, now that attention will be focused on it, even in the absence of RCT evidence.
 
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