By David Tuller, DrPH
William Weir is an infectious disease physician in London who has treated many ME/CFS patients. He has been involved in some of the ongoing cases in England in which severely ill teenage girls and young women, and their families, have been in conflict with their local hospitals about the best approach to treatment. In general, hospital consultants and other health care providers have bought into the standard propaganda that ME/CFS patients need either cognitive behavior therapy or graded exercise therapy, most recently expressed in a weekend opinion piece from a prominent member of the CBT/GET ideological brigades. (I responded to that opinion piece here.)
Dr Weir testified last week at the ongoing inquest into the death of Maeve Boothby O’Neill, being held in Exeter, England. He read into evidence two letters that he wrote to express his concerns about the case. The first, dated May 25th, 2021, was addressed to Julia Prague, a consultant endocrinologist at the Royal Devon and Exeter Hospital, where Maeve was hospitalized three times in the months before she died in October, 2021. The second, dated September 9th, 2021, was addressed to Suzanne Tracey, the former CEO of the Royal Devon University Healthcare NHS Foundation Trust.
Because they were read into evidence, both letters can be posted publicly–as I have done below.
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Letter to Julia Prague
Dr Julia Prague
Consultant Endocrinologist
Royal Devon and Exeter Hospital
Dear Dr Prague,
Re: Maeve Boothby O’Neill
We spoke about this young lady on the phone last Friday. I want to amplify some of the points I made so that they are on the record.
Firstly, it is very likely that her desire to remain horizontal is related to a low circulating blood volume. A normal blood pressure when supine does not necessarily exclude this. One major contributory cause is likely to be low circulating cortisols, and attempts to sit her up, or even stand her up will always be doomed to failure because of this. There is much in the academic literature to support this, and I have had some success with my own patients with fludrocortisone and regular top-ups with glucose/electrolyte mixture.
Secondly, continuing to lie flat is always going to put Maeve at risk from aspiration, whether or not she has a NG tube in place. It is therefore imperative to try to increase her blood volume, in order to restore her ability to sit up/stand without the risk of postural symptoms, and aspiration. Measuring her blood volume first, as well as her baseline cortisols, will provide the procedural justification for this. Once this has been shown to be the case, it would not be unreasonable to top her up with IV normal saline. I have one patient here in London who does precisely this through a central line, every morning before he starts his day, and colleagues in the United States who have similar patients doing the same thing.
It is also important to recognise that her profound muscular weakness has an organic basis. Essentially, any muscular activity she is capable of is likely to hit anaerobic threshold very early, usually after a very short period of apparently normal muscular activity. One indication of this which is frequently present is a raised serum lactate level, occurring with very low levels of muscular activity. It will be worth checking this in Maeve. In my experience, there is a sequence which many patients like Maeve follow. First, progressive weakness with chewing and swallowing, eventually leading to a very low “exhaustion threshold” for this activity, represented physiologically by the anaerobic threshold being breached. Any test of this activity therefore has to follow her ability to chew and swallow throughout the course of a full meal. This is why a feeding tube often becomes necessary, and it is currently my understanding that Maeve is unable to do this. She may well be having difficulties with the simple act of swallowing a liquid feed on multiple occasions.
Finally I have attached a copy of a synopsis of ME/CFS which I update regularly, and I trust that it will be of help to you in your management of Maeve.
Kind Regards William Weir
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Letter to Suzanne Tracey
Ms Suzanne Tracey
Chief Executive
Northern [sic] Devon Healthcare NHS Trust
Dear Ms Tracey
Maeve Boothby-O’Neill dob 26/8/94 xxxxxxxxxxxxxx [Address redacted]
I wish to draw your attention to the problems currently being faced by this young lady. She has recently been an inpatient at the Royal Devon and Exeter hospital (RD&E). I saw her for the first time earlier this year on 21st March when I saw her on a home visit at her parents’ request. She has a long history of ME/CFS, a diagnosis which was first made in 2012 at the Bristol Royal Infirmary ME/CFS clinic. Since January this year she has been mostly bedbound owing to a deterioration in her condition, manifest largely with a sensation of profound exhaustion, giving rise to difficulty in chewing and swallowing, with a tendency also to systemic symptoms with food intake of any kind. This is likely to be due to inappropriate allergic responses to any food that she tries because the mast cells lining her gut are abnormally reactive, a well recognised complication of ME/CFS. As a consequence of all this she has had to resort to liquid feeds, which nonetheless also cause systemic symptoms when ingested. During this last admission to the RD&E I understand that attempts were made to improve her nutritional status, but without much success, probably because of mast cell related damage to the lining of her gut – which can be very difficult to treat effectively. I understand now from speaking to her father, that her nutritional status continues to be seriously compromised, a situation which is potentially life threatening. I have experience of similar cases leading to death and Maeve’s current clinical status shows all the initial hallmarks of this. I understand that Dr David Strain is currently on the case, and wishes to admit Maeve in order to address the possibility of total parenteral nutrition (TPN). This is an entirely logical way of bypassing her gut problems and improving Maeve’s nutritional status. I am fully supportive of this approach, and I am not exaggerating the issue when I say that this may well save Maeve’s life. Furthermore, it is quite likely that, after a period of the nutritional benefits of TPN her gut will have benefited from a period of “rest” and will function normally again.
I now come to the main point of this letter. You may be aware of a major contention within the medical profession concerning the causes of ME/CFS. The belief that ME/CFS has purely psychological causes has been the majority view within the UK medical profession. Consequently patients with this condition have frequently been regarded as perversely inactive, without any regard for the possibility that their inactivity is not due to deliberately perverse behaviour. Incorrect diagnoses of “eating disorder” and “pervasive refusal syndrome” are thus very wide of the mark. They can lead to completely inappropriate management of someone genuinely and severely affected by a condition with demonstrable organic pathology. The latter completely refutes any argument that ME/CFS has psychological causes, and I have set out what is now recognised as the true pathological basis of ME/CFS in the attached synopsis.
A further point I wish to make is that it would appear that a considerable portion of the staff at the RD&E, including some consultants, still hold to the now outdated understanding that ME/CFS has psychological causes. It is also apparent from the way Maeve was treated during her last admission that her illness was regarded by some of the RD&E staff as her fault and that her immobility was self inflicted. Not unreasonably she is reluctant to be readmitted to the RD&E despite her precarious physical state. Dr Strain is therefore facing an uphill task in arranging her readmission, not least because of the apathy of some of his colleagues to what will almost certainly be life saving treatment. I therefore urge you to fully support Dr Strain in what he is attempting to do. At the same time you will need to tackle, head on, the dogma concerning the cause of ME/CFS that some of his colleagues are still perversely adherent to.
William Weir FRCP FRCP (Edin).