It has been day three of the inquest into the death of Maeve Boothby O’Neill, who died of myalgic encephalomyelitis (ME/CFS) on 3 October 2021, aged just 27 – but due to catastrophic failings from the NHS.

The inquest, which began on Monday 22 July, has already been exhausting and distressing for those affected, directly and indirectly. You can read more on it here. But for some of us, it has also been highly frustrating – not least on 24 July. One line from the coroner in the case summed this up.

Maeve’s inquest: Dr William Weir gives evidence

Dr William Weir was giving evidence at Maeve’s inquest. He is one of the UK’s leading experts in ME/CFS. In the interests of transparency, I know William very well and speak with him on a regular basis. However, at Maeve’s inquest it was obvious that everyone else present, giving evidence, or mentioned in a professional capacity – including the coroner – had little idea what they were talking about, yet acted as if they did anyway.

The line of questioning from the coroner revolved around William’s “opinions” on Maeve’s care versus what so-called ‘professionals’ at the Royal Devon and Exeter hospital carried out.

We learned that, for example, Dr David Strain (who previously gave evidence on Tuesday 23 July) was sometimes at odds with William’s advice. Anyone who knows Strain’s history will not be surprised by this. I believe him to be at best, compromised, and at worst, a fool.

One such occasion was on the issue of feeding.

Disagreements over feeding

Strain was adamant that Maeve’s vomiting would have continued regardless of what method of feeding the hospital gave her. This could have been nasogastric (NG). nasojejunal (NJ), or total parenteral nutrition (TPN).

William disagreed. He noted that many severe and very severe ME/CFS patients also live with gastroparesis. This is where the stomach does not empty properly or voluntarily. William said this was likely due to a problem with the vagus nerve. He noted that NJ feeding would have overridden this issue and allowed Maeve to take adequate nutrition without vomiting – in combination with IV saline to increase her blood volume, which he believed was likely due to pituitary dysfunction.

The hospital’s dismissal of William’s clinical opinions was a running theme – and still is in other cases where he’s involved. The Canary and the Chronic Collaboration have been supporting Carla Naoum who lives with very severe ME and is currently being abused by West Middlesex NHS hospital. I have personally had oversight of nearly a dozen emails containing evidence-based recommendations that William has sent to the hospital. It and its staff have ignored nearly all of them.

Maeve could have been saved

At Maeve’s inquest, this line of questioning around feeding continued for most of 24 July morning.

Dr Ovi Roy from the Royal Devon and Exeter hospital was noted as saying IV feeding or TPN was the “most dangerous” option for Maeve. He said it would “significantly increase nursing needs”, would “increase disruption to Maeve”, and “increase the risk of sepsis”. Dr Roy said the latter would be “inevitable”, leading to a “worse quality of life”.

William disagreed, said “risk/benefit analysis” would have shown TPN to be the best option to save Maeve’s life because “at least she would have been properly nourished”. While Roy noted the downsides, William said:

nonetheless, Maeve clearly reached a point where she need further nutrition and the usual route was a difficult one

Therefore she need TPN. Contrary to what the hospital believed (and the coroner repeated), TPN was, William said:

not experimental in any way with people receiving it in the community and [it has] standarised procedures.

Ultimately, William believed that if the Royal Devon and Exeter hospital had addressed Maeve’s feeding earlier and more robustly, and put aside their flawed beliefs, then they could have saved her life.

The counsel representing the NHS Trust, whose name escapes me not least because of his robotic, monotone delivery, clearly thought he was on an episode of The Good Fight or another legal drama. His ideas-above-his-station, passive-aggressive line of questioning of William – which the good doctor repeatedly batted back at time – showed an NHS trust clearly feeling it had to defend itself; ergo – it knows it was in the wrong.

There are not two sides to the ME/CFS argument

However, this backwards and forwards – with William giving his clinical expertise and other medical professionals ignoring it – underscores Maeve’s tragic case. One line from the coroner perhaps summed it up best when she said:

I’m trying to understand the different sides of the argument around feeding Maeve…

Much like the climate crisis, management of ME/CFS is NOT about people’s opinions. There is scientific, evidenced-based approaches to management which have been shown to work – and then there’s arrogant professionals’ “dogma” as William often describes it to me as.

There’s also the problem of people being in highly responsible jobs when they really shouldn’t be.

One such example was a representative from the local authority’s adult social care team. She could not even pronounce ‘myalgic encephalomyelitis’ correctly in front of a coroner. We heard that essentially the local authority’s first response to Sarah Boothby’s requests for support for Maeve included looking for safeguarding risks.

This is, undeniably, standard practice – which is exactly the problem.

Local authority failings

Local authorities have no provision, and no idea, how to deal with chronically ill people. For example, we heard from in the afternoon session that the council had failed to invite Maeve’s family or an advocate to crucial meetings surrounding discharge planning. Sarah said this led to the risk of dying of malnutrition and dehydration being lost in discussions.

Also, in August 2021 when the Royal Devon and Exeter hospital discharged her again, the council failed to do an updated care plan for her. The council had also stipulated that care staff could not assist with food and fluids – leaving it to Sarah, Maeve’s mother.

It began to emerge that (to me anyway) there seems to have been a complete breakdown of communication between the NHS trust and local authority. It got to the point where, in my opinion, someone from one of those bodies has been lying about what has gone on.

The point being that, when someone presents as desperately ill as Maeve did, these people do not have a clue what to do. Generally, they get it wrong – and in Maeve’s case, catastrophically.

Maeve’s inquest opens a microcosm of the problem

Overall, we learned very little from day three of Maeve’s inquiry that many people affected by ME/CFS don’t already know.

Arrogant yet ignorant – and quite frankly at times promoted beyond their intelligence – professionals dismiss the severity of how sick chronically ill women like Maeve are because they’re women. They ignore experts because their jobs enable their own God complexes to flourish. And they are so entrenched in failed academia that they are told is correct, that they cannot see the wood for the trees.

An inquiry will not resolve this combination of dogma, misogyny, laziness, hierarchy, and arrogance. Nor will polite campaigns such as #ThereForME fix this – however good their intentions are.

We are dealing with societal-level problems; Maeve’s case being a microcosm of them. If we learned anything from day three of her inquest, it is that even in death, her case and ME as an illness are still viewed as ‘debatable’ – a damning indictment of the system we live under, and the society we live in.

Featured image supplied

By Steve Topple

This post was originally published on Canary.