PhysioUpdate 16th June 2022

Families whose children have Myalgic Encephalomyelitis (ME) but have not yet received a diagnosis can be ‘sitting ducks’ for accusations that they are fabricating an illness.

That was the claim made by consultant paediatrician Nigel Speight when he addressed a group of MPs with an interest in the condition who sit on the All-Party Parliamentary Group (APPG) on ME.

Earlier this month (25 May), the group published a report titled Rethinking ME, the printing of which was funded by two charities: the ME Association and Action for ME.

Dr Speight’s claim appears in a chapter focusing on children and young people, which points to cases in which children have been referred for ‘inappropriate physiotherapy’.

Families can be 'sitting ducks'

Dr Speight told MPs: ‘ME families are sitting ducks for this condition. any family of children with me whose paediatrician has not made a diagnosis is automatically suspected of fabricated illness.’

The report explains that ‘hundreds of families’ have faced child protection investigations following allegations of being behind a ‘fabricated and induced illness’ (FII). The term was introduced by the Royal College of Paediatrics and Child Health (RCPH) in 2001 to replace Munchausen syndrome by proxy (MSBP).

MSBP, the report continues, is a mental illness and form of abuse in which a mentally ill person falsifies or causes an illness or injury in a person under his or her care and there had been a number of debates over the condition’s ‘definition and prevalence’. But reported cases had been rare, it notes.

However, since the RCPH terminology was introduced in 2001, ‘hundreds of families’ of children with ME have faced child protection investigations following allegations of FII, the report notes.

And Dr Speight told the APPG that the extension of the FII diagnostic criteria in 2013 to include perplexing presentations and medically unexplained symptoms as criteria for the diagnosis of FII had triggered a ‘drastic increase in cases’.

In very severe cases, court orders have been used to admit children with ME to hospital for inappropriate physiotherapy and other damaging treatments ... In  a high-profile case a child’s paediatrician could not make sense of the severity of her ME symptoms, such as requiring tube-feeding in a darkened room [APPG report]

'Inappropriate physiotherapy'

‘In very severe cases, court orders have been used to admit children with ME to hospital for inappropriate physiotherapy and other damaging treatments,’ the report states. 

‘In 2019, for example, there was a high-profile case in Lewisham where a child’s paediatrician could not make sense of the severity of her ME symptoms, such as requiring tube-feeding in a darkened room.

‘While FII was not alleged in this case, the child was labelled with a psychiatric disorder, pervasive refusal syndrome, and her parents were accused of colluding with her. The child’s paediatrician referred the case to social services to acquire a court order to admit her to a psychiatric unit.’

Even when parents are cleared of any wrongdoing relating to FII, the experience of undergoing child protection proceedings can be ‘incredibly distressing’, the report stresses.

Doctors with ME: Covid-19 could have profound impact

Elsewhere, dermatology surgeon Nina Muirhead, director of Doctors with ME, told MPs that the Covid-19 pandemic could be both a ‘catastrophe and an opportunity’ for the ME ‘community’.

While the pandemic has been ‘challenging’ for people with ME in many ways – particularly as they experience immune system dysfunction – the shift to virtual platforms had, in some cases, made it easier access for them to access medical consultations, work and education.

‘Periods of societal lockdown have also increased empathy and understanding towards people with ME who are often trapped at home,’ the report suggests.

‘The current interest in long Covid has presented an opportunity for the research community to develop a better understanding of other conditions which may develop post-virally, including ME, and finally put an end to the narrative that these conditions are psychological in nature.’

NICE guideline welcomed

The MPs say they are ‘confident’ that publication of the National Institute for Health and Care Excellence clinical guideline on ME/CFS [chronic fatigue syndrome] last year represents a ‘turning point’. 

‘The guideline sets the precedent for a medical shift away from a problematic behavioural or psychological understanding of ME and towards a more holistic biomedical or physiological understanding, as evidenced by the removal of harmful GET [graded exercise therapy] as a treatment for people with me and the new focus on energy management.’

It adds: ‘Our primary report recommendation, therefore, seeks to ensure that the new guideline is swiftly implemented in full by relevant health services.’

To see the report in full, visit: https://appgme.co.uk/wp-content/uploads/2022/05/Rethinking-ME-a-report-by-the-APPG-on-ME-2022.pdf

About the ME APPG

The group aims to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of the condition.

The Rethinking ME report notes that all-party parliamentary groups are informal groups of members of both houses with a common interest in particular issues, with the views expressed in the report being those of the group.

Further information

PhysioUpdate articles on ME

See: https://www.physioupdate.co.uk/news/physios-for-me-says-all-students-and-physios-need-specialist-training-in-wake-of-nice-guideline/

And: https://www.physioupdate.co.uk/news/coalition-including-specialist-me-physios-welcomes-nice-guidelines-break-from-the-past-/

Other links

Doctors with ME: https://doctorswith.me

Action for ME: https://www.actionforme.org.uk

 The ME Association reports  on the health secretary's response

The ME Association welcomed comments made by health secretary for England Sajid Javid at the report’s launch. Its states that Mr Javid said the condition had ‘been neglected for far too long’ and that more research and support could be expected.  

Mr Javid revealed that a relative of his had been severely affected by ME and pledged to tackle the lack of research on the condition, the website adds.

‘He will co-chair a round table of international experts next month to help set this research strategy'. Although Mr Javid told patients attending the launch that he could not ‘promise miracles’ in finding a treatment, he pledged a new cross-government approach to supporting people with ME, which would encompass healthcare provision, education, work and pensions and local government.

Source: ME Association: https://meassociation.org.uk