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Families affected by M.E. speak out on File on 4

June 28, 2017

The findings of our national survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness were revealed last night on BBC Radio 4’s File on 4 documentary.

Presented by Matthew Hill, the programme was initiated by Action for M.E. after we took our survey results directly to Matthew. The File on 4 team interviewed a number of families that we have been supporting, as well as investigating wider issues associated with M.E., having spoken to a number of other M.E. charities, researchers and health professionals.

As Matthew revealed on the programme, our survey of 270 families found that:

  • 96% of respondents felt that a lack of understanding of M.E. negatively impacted on the support that they receive
  • 90% agreed they were concerned that professionals involved with their child did not believe them.
  • one in five said they had had a safeguarding/child protection referral made against them.
  • nearly half of the claims were of fabricated/induced illness or FII (previously known as Munchausen’s by Proxy), which occurs when a parent or carer exaggerates or deliberately causes symptoms of illness in the child; this heightened frequency of FII claims sits widely outside the national prevalence rate
  • a smaller number of the claims were of neglect (17%) or emotional (10%) or physical (2%) abuse.

The news that so many families are being subjected to FII claims is deeply alarming, adding as it does to the already considerable pressures faced by these very sick children, their parents and their siblings as a result of this challenging condition.

In response to these findings, Action for M.E. will take action by sharing our survey results with policy-makers and professionals, including parliamentarians and the Chief Social Worker for Children and Families. We will be inviting them to work with us to increase understanding of M.E. among frontline staff, and reduce the number of families subjected to false accusations.

“We are hugely grateful to Jane, Isla and Lewis, and the parents, for their courage in speaking out,” says our Chief Executive Sonya Chowdhury. “The stories of these children and young people, and their families, show the devastating impact of disbelief and ignorance about M.E.”

Nearly half of the claims were of fabricated/induced illness or FII (previously known as Munchausen’s by Proxy), which occurs when a parent or carer exaggerates or deliberately causes symptoms of illness in the child.

Sonya said on the programme, “This is surprising given that FII is rare, around 50 actual cases of FII each year. While we know that results can be skewed when it comes to a self-selecting group – regardless of this, the numbers are high. We must do further research to understand what’s going on.”

Our survey also indicated that half of the child protection referrals highlighted by our survey were made by education professionals, while almost a third were made by health professionals. Sonya commented, “There are other illnesses where we don’t understand what’s going on, but they have not been treated in the same way that M.E. has. There is still significant stigma and disbelief when you say you have M.E.”

Prof Peter Fleming, University of Bristol, an experienced paediatrician who specialises in FII said that “the balance that we must draw between protecting the child, and protecting the parents – and therefore the children – from wrongful accusations, is a very difficult one.”

Dr Phil Hammond, who is based at the specialist M.E. service in Bath, said that the dismissal of M.E. as a psychological condition, when it is clearly a neurological, “has caused a huge amount of pain and anguish for people with this illness, and I’m not sure we’ve ever recovered from that. Those seeds of mistrust, where people still feel it’s being dismissed as a psychological condition, are very hard to eliminate.”

The programme included contributions from Dr Charles Shepherd of the ME Association, who offered insight into how the complex interactions between doctors and families can spiral into misunderstanding.

Isabelle Trowler, Chief Social Worker for Children and Families, shared a statement highlighting the need for a “firm understanding of conditions like M.E.” and collaborative working. NHS England were contacted by the programme but declined to comment.

The programme gave a brief overview of the PACE trial and the questions being asked about its findings, and the National Institution for Health and Care Excellence (NICE)’s intention to consult on reviewing its guideline on M.E. this summer, based on emerging evidence, including warnings about the potential harm of graded exercise therapy. Emails obtained by a Freedom of Information request from Prof Mark Baker, Centre for Guidelines Director at NICE quoted him as saying, “It remains a tragedy that this serious, disabling condition has seen so little progress in a generation.”

The programme’s final word was given to Sarah, whose daughter has been severely ill for four years. Even though they have moved to try and leave behind the suspicions about Jane’s diagnosis of M.E. – now confirmed by three separate M.E./CFS specialists – the child protection investigations have started up again.

“I wouldn’t wish this illness on anybody,” she says. “The way that we have been treated… we are being discriminated against because she has an illness they don’t understand.”