Image description: The picture shows a patient with very severe ME, bedbound. The title reads: Failings in the care of patients with Very Severe ME (VSME) by Dr Nigel Speight. ME Association logo bottom right. The ME Chronicle is written at the centre of the post.

Failings in the care of patients with Very Severe ME by Dr Nigel Speight

By Dr Nigel Speight, Hon. Paediatric Adviser to the ME Association

The ME Global Chronicle

In the UK over recent years there have been a succession of cases of very severe ME who have been mismanaged by the medical profession, in the worst cases with fatal consequences. There is a repeated pattern of failings in these cases which I will attempt to analyse, and then use individual case reports to illustrate these patterns.

Background problems

For many doctors, either family doctors, paediatricians or physicians, being confronted with a case of very severe ME will be their first experience of such a case. This may lead to a form of denial, whereby the doctor has to find another explanation for the presentation.

Possible alternative labels include an Eating Disorder, despite the patient lacking any evidence of body dysmorphism or wanting to lose weight. Other psychological diagnoses considered include Pervasive Refusal Syndrome (PRS), or Pervasive Arousal and Withdrawal Syndrome (PAWS). Most distressingly for the family, mothers are sometimes accused of Fabricated and Induced Illness (FII).

Perhaps more understandably, most doctors will tend to panic initially, and to fear they are missing some other diagnosis. There is also a natural fear that the patient may die and they may be blamed. This leads to hospitalization and subjecting the patient to a battery of investigations, some of which will be very traumatic for the patient and lead to worsening of the condition.

Naturally, if the doctor starts from a position in which he/she does not accept that ME is an organic condition in the first place, these mistakes are even more likely to occur. Previous preference for the weaker term Chronic Fatigue Syndrome (CFS) will increase the chances of denial, as no one ever talks of very severe CFS.

Very severe ME (VSME)

The patient with VSME will be totally bedridden, extremely sensitive to light and touch and too weak to feed themselves adequately. Whatever the age, they will naturally be dependent on a caring relative, usually the mother. If and when they are hospitalized, ideally this caring relative should be allowed full access to the patient 24 hrs a day as they will be the best person to provide both physical care and emotional support. Here they are often confronted by senior nursing staff who may adopt a territorial posture and object to the relative being allowed in in this way.

I once gave a talk to my nursing staff to prepare them for the admission of a very severely ill 16 year old girl. At the end of my talk one of our best nurses said “So what you are telling us is that everything we have been taught as nurses is wrong for this condition”. Brilliant. The same point could be made for doctors who tend to insist on investigation and treatment of patients with VSME as they would for patients with other conditions.

Nutritional support

Nearly all patients with VSME will require nutritional support in the form of nasogastric (NG) tube feeding initially, possibly moving to gastrostomy feeding if prolonged. Ideally this support should be instituted early rather than late, and should be provided on a domiciliary basis. In nearly all the cases to be described, this proved almost impossible to arrange at home, and patients had to be admitted to hospital simply to have a NG tube inserted, with all the resultant upset that hospital management can cause.

Case A

A 12 year old girl was under her paediatrician who had already diagnosed ME of moderate severity. The girl’s condition deteriorated markedly, she had to be admitted for tube feeding. The paediatrician then panicked and called in a Child Psychiatrist. The latter changed the diagnosis to PRS, and obtained a court order to compel the girl’s admission to the psychiatric ward.

Because of her basic lack of belief in and understanding of ME, the psychiatrist insisted on removing the girl’s eye shades and ear defenders, stating that she needed to be exposed to both modalities to “desensitize” her. (These two measures have been a repeated pattern in other cases). She was nursed on an open ward and every time the nearby door slammed she had a major myoclonic jerk affecting her whole body.

The Child Psychiatrist who had first described PRS (Dr Bryan Lask) was called in and refuted the diagnosis, He pointed out that the girl could hardly be said to be “pervasively refusing” treatment as she was accepting tube feeding. The court order was reversed and the girl was allowed home to make a good spontaneous recovery.

Case B

A 14 year old girl had moderately severe ME. Her paediatrician was a firm believer in the efficacy of Graded Exercise Therapy (GET), and applied to the court for an order compelling the girl on to her ward for physiotherapy. The paediatrician promised the judge that if the order was granted she would guarantee that the girl would be back at fulltime school within 6 months.

Predictably, the girl’s condition became much worse and the judge had to allow her home after 6 months. Twenty years later, she remains very severely affected and has spent most of the last 2 years in the same hospital. The senior nurse objects to her mother staying with her and keeps trying to get her discharged home despite her nutritional support at home being a major challenge

Case E

This is a current very distressing case which demonstrates nearly all the failings already referred to. There is an online petition collecting signatures pleading with the hospital to save her life. (In Case D there was a similar petition which almost certainly helped to improve the hospital’s management).

This girl was 18 and too weak to eat or drink. Her family doctor very reasonably requested the local hospital to admit her briefly for passage of an NG tube, for early return home. This did not happen. The doctors disputed the diagnosis of ME, refused to give her an NG tube, and subjected her to routine hospital procedures (daily blood tests, frequent blood pressure monitoring, multiple consultations and other investigations) over the next 5 weeks.

These were against her wishes and without her informed consent. Her mother was served with a notice excluding her from the ward for all but 1 hour a day. The physician decided that it was probably “all psychological” and referred her to a psychiatrist. The psychiatrist changed the diagnosis to an Eating Disorder and promptly subjected her to a mental health order, depriving her of her liberty. This was reversed on appeal a week later.

The matron keeps insisting on daily bathing, discourages the use of eye shades and talks of trying to sit the girl out of bed. When told that all this is against NICE Guidelines (see below) she disputes that this is actually the diagnosis. As a result of all this the poor girl is much worse than she was on admission and her problems regarding nutrition are still unresolved. Her life is almost certainly in danger.

Case G

This 29 year old girl had suffered very severe ME for over 15 years. She was tube fed, needed nursing on a ripple bed at home and was functioning at c.1% of normal capacity. Despite this she was extremely motivated and managed to write a book on how severe ME should be managed by tapping on her phone.

Tragically, she developed renal colic and had to be admitted to a general ward in a major London teaching hospital. Despite her family’s entreaties she was treated to normal hospital routines and this led to her deteriorating and dying of her ME in hospital after 11 weeks. Her name was Emily Collingridge (permission granted by family).

Some Good News

In the UK in 2021 the National Institute of Health and Care Excellence (NICE) provided updated guidelines on ME/CFS. This is the first time an official report has used the term ME/CFS rather than CFS/ME. This report was excellent in many ways:

Firstly, it stated that ME(CFS) was a medical i.e., an organic condition. It recognised that in the past many patients have been treated with a mixture of denial and/or neglect.

Secondly, NICE withdrew their previous support for GET and CBT, despite squeals of protest from the protagonists of these “therapies”.

Thirdly, regarding severe and very severe ME, the guidelines are excellent and provide strong ammunition for families to defend their relatives from the kind of treatment described above.

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