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

Thank god this is looking more optimistic. Sarah is wonderful. She mentions that Maeves father Sean being a seasoned journalist also helped with illuminating facts for the hearings. It’s terrible it is requiring this level of effort from both of them.
 
Robert 1973 said:
I’m so grateful to both of them for continuing their fight not only for Maeve but for all ME patients. Thank you again Sarah and Sean if you’re reading this.
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I second this.

Such an important issue given the repeated medical abuse of people with very severe ME involving eating/feeding issues. Coroners are in a position to issue clear statements of what has happened and give advise on what needs to be done, including referral of the matter to the Police. Though the aetiology of the feeding issues in very severe ME is not well understood the potential management strategies are very straight forward and should be obvious.

However, for family facing such a horrendous time it is a big ask to take on the medical system.
 
Andy said:
Trial By Error: Sarah Boothby Discusses Second Pre-Inquest Hearing into Death of Daughter Maeve from ME Complications

https://virology.ws/2024/02/15/tria...eath-of-daughter-maeve-from-me-complications/
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Andy said:
Trial By Error: Sarah Boothby Discusses Second Pre-Inquest Hearing into Death of Daughter Maeve from ME Complications

https://virology.ws/2024/02/15/tria...eath-of-daughter-maeve-from-me-complications/
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Link doesn't work for me
Neither does a link to same article on X
 
An update on the inquest into Maeve death:

2 weeks full hearings begin 10am Mon 22 July 2024.
2-3 witnesses each day.

Please contact HM Coroners for attending remotely via live link: coroner@devon.gov.uk case ref 8057264



Binkie4 said:
Interesting letter, worth reproducing in full. Thank you @MrMagoo

Rapid response to:


We need better care for long covid and ME/CFS
BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2372 (Published 17 October 2023)Cite this as: BMJ 2023;383:p2372

Rapid Response:
Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis
Dear Editor,

“For patients with severe [or] very severe ME there are no commissioned specialist inpatient services both regionally and nationally” ~ Dr Anthony Hemsley, medical director at Royal Devon & Exeter hospital

The above is a quote from the 2023 pre-inquest inquiry meeting into the death of Myalgic Encephalomyelitis (ME) patient Maeve Boothby-O’Neill who died under NHS care on October 3, 2021. Unfortunately, Maeve was not the first ME patient to die from her condition due to lack of appropriate care, and she is unlikely to be the last.

Here, I build on Dr. Hemsley’s observation and the BMJ Letter written by Alexis Gilbert [1] to describe the lack of systems of care for people with ME. While the systemic changes needed to transform care for people with ME will take time and considerable effort, there are concrete steps that individual medical professionals can take today to fill the void.

I developed ME after a viral infection when I was 15. As a biologist and ME patient, I have followed ME research closely and have become a ‘patient expert’. In my experience, both medical professionals and the public are often under the impression that people with ME have specialist care and medical teams, much as other severe diseases do. Unfortunately, this could not be farther from the truth.

The NICE guidelines on ME changed in 2021, calling for Specialist Centres of Excellence, but no progress has been made. We have no in-patient centres, or clinical treatment guidelines for providing symptom management, such as exist in international primers [2]. Further, due to misunderstanding our illness as psychological and lack of awareness of our needs, ME patients often suffer unintentional neglect and harm in hospital settings. I know ME patients who, as I write this, are suffering under hospital care due to lack of knowledge about the disease. Hundreds of others go without access to basic medical care or screening services because they are too unwell to travel and there are no at-home medical services.

The current lack of services does not preclude care improvements. As doctors, nurses and other medical professionals, you can help to reduce the suffering and dismissal we experience. If you think you don’t have patients with ME, think again. We attend A&E, cardiology, oncology etc just like everyone else, yet we often receive suboptimal, even harm inducing, care from those who don’t understand our specific needs.

ME has no licensed treatments but there are things that you can do to improve patient care:

• Lerna provides a free CPD accredited 1-hour module on ME [3] developed with experts via the ME Association.
• For a longer course, Stripy Lightbulb CIC [4] offers CPD accredited e-learning courses on ME for healthcare professionals.
• Read key pieces of clinical literature such as Montoya et al [5] and Baxter et al [6] on the life-threatening malnutrition in Very Severe ME to better understand how to care for the most vulnerable ME patients.
• Consult the concise review for clinicians published by Grach et al in 2023 [7] in Mayo Clinic Proceedings (providing continued medical education credits).
• For physiotherapists, the book “A Physiotherapist’s Guide to Understanding and Managing ME/CFS” [8] is a must-read.

At least 50% of people with long COVID meet the criteria for ME [9, 10], meaning the number of people in the UK with this devastating disease is dramatically increasing and is estimated to stand at more than 1.25 million [11]. Similar to other patients with ME, patients with long COVID lack systems of care that comprehensively meet their needs. Please, act now and take some of the steps outlined above to improve care for people with ME who seek care from our NHS.

Dr Naomi Harvey BSc, PhD, AFHEA

References
1. Gilbert A. We need better care for long covid and ME/CFS. BMJ 2023; 383 :p2372 doi:10.1136/bmj.p2372
2. Friedberg F, Bateman L, Jason LA, et al. ME/CFS: A Primer for Clinical Practitioners. 2014. Accessed on 1st Feb 2024 at https://www.iacfsme.org/assets/pdf/Primer_Post_2014_conference/
3. https://www.studyprn.com/p/chronic-fatigue-syndrome Accessed April 4th 2024
4. https://www.stripylightbulb.com/ Accessed April 4th 2024
5. Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2021 Oct 6;9(10):1331. doi: 10.3390/healthcare9101331. PMID: 34683011; PMCID: PMC8544443.
6. Baxter H, Speight N, Weir W. Life-Threatening Malnutrition in Very Severe ME/CFS. Healthcare (Basel). 2021 Apr 14;9(4):459. doi: 10.3390/healthcare9040459. PMID: 33919671; PMCID: PMC8070213.
7. Grach SL, Seltzer J, Chon TY, Ganesh R. Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Mayo Clin Proc. 2023 Oct;98(10):1544-1551. doi: 10.1016/j.mayocp.2023.07.032. PMID: 37793728.
8. Leslie, K., Clague-Baker, N., Hilliard, N., Bull, M. A Physiotherapist's Guide to Understanding and Managing ME/CFS. Jessica Kingsley Publishers, London, 21 Aug 2023
9. Jason LA, Dorri JA. ME/CFS and Post-Exertional Malaise among Patients with Long COVID. Neurol Int. 2022 Dec 20;15(1):1-11. doi: 10.3390/neurolint15010001. PMID: 36648965; PMCID: PMC9844405.
10. Mancini DM, Brunjes DL, Lala A, Trivieri MG, Contreras JP, Natelson BH. Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post-Coronavirus Disease. JACC Heart Fail. 2021 Dec;9(12):927-937. doi: 10.1016/j.jchf.2021.10.002. PMID: 34857177; PMCID: PMC8629098.
11. https://meassociation.org.uk/ Accessed on 4th Feb 2024

(my bold)

edit: As someone who attends hospital frequently (pain clinic and rheumatology and dentist in the current week), and I'm getting very much older and am now severe, I'm finding it extremely hard to manage in an ordinary clinic. There is no understanding of ME or orthostatic intolerance. At the pain clinic, all patients were called at the same time and it was 2 hours before anyone went in ( I was just about to go home as my sitting in one chair with feet up on my wheelchair was not working very well). I've postponed my rheumatology appointment because I am still crashed from pain so the appointment can go to someone else. The next step is not to go to any hospital appointments: I've only kept up so far because I am fortunate that Mr B accompanies me.
We need ordinary clinics who appreciate our specific needs. It's not unreasonable.
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The inquest into Maeve's death starts on Monday 22nd July.

https://twitter.com/user/status/1729911108436148300

https://twitter.com/user/status/1814340479871271141

https://twitter.com/user/status/1814340481637073351
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Copies of the tweets.

Sean O'Neill@TimesONeill
I spoke with @StigAbell
yesterday about my daughter’s death and the stigma encountered by people with ME #pwme
Times Radio @TimesRadio
“The state was unable, and to some degree, unwilling to treat her.” As his daughter with severe ME was dying "a painful and difficult death", Times journalist Sean O'Neill says he had to “fight” for her palliative care "because doctors didn't believe in ME”.
Sean O'Neill @TimesONeill
The inquest into the death of my daughter Maeve, who had Severe ME, begins in full in Exeter on Monday (22nd). Some thoughts
And
@sajidjavid
has called on the new government to urgently publish the long awaited delivery plan for ME patients
 
Last edited:
There is a page in the hard copy of today's Times- page 21- devoted to Maeve's story, written by Fiona Hamilton.
Heading is " Patients with ME have been failed by dismissive doctors, says Javid" Subheading " Former health secretary demands a new approach as inquest opens into death of 27 year old."

The article quotes her GP as reporting her death to the local coroner saying " several doctors involved in her care stated that they do not believe ME is a medical problem."

There is a subsidiary article entitled "First person" which appears in the archive link #55.
 
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