• Menu
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Before Header

Michelle's blog

Food allergy and food intolerance, freefrom foods, electrosensitivity, this and that...

  • Home
  • Blog
  • About
  • FreeFrom Food Awards
  • Foods Matter
  • Walks & Gardens
  • Salon Music
  • Home
  • Blog
  • About
  • FreeFrom Food Awards
  • Foods Matter
  • Walks & Gardens
  • Salon Music

ME still SO poorly understood

29/10/2017 //  by Michelle Berridale Johnson//  2 Comments

The current issue of Action for ME’s newsletter has a seriously scary article on the experiences of families with children suffering from ME who have faced false accusations of abuse, neglect and ‘fabricated, induced illness’ or FII (what used to be known as Munchausen’s by Proxy).

In conjunction with Radio 4’s File on 4 programme last June, they surveyed 270 families with children with ME and found that:

  • 90% of those who responded were concerned that the professionals involved with their child did not believe what they were told about the child’s illness.
  • 20% had had a child protection referral made against them and half of those resulted from claims of FII. (FII occurs when a parent or carer deliberately exaggerates or causes the symptoms of illness in a child.) This is a very significantly higher number than in relation to any other form of illness.
  • 53% of the families who had these proceedings instigated against them said that they had been instigated by a teacher – 70% of those referrals were on the basis of FII. (A typical instance was where the school head had referred the family ‘for failing to ensure that the child attended school regularly’.)
  • In a third of cases, the referral had not been by a teacher but by a health professional, with FII being a factor in more than half of these cases.
  • Even though they have a diagnosis of ME, often by several specialists, families are frequently challenged on school attendance and on the validity of their child’s diagnosis.

To quote just one mother who appeared on the programme:
‘We are being discriminated against because my daughter (who has been ill with ME for four years and who has had her diagnosis confirmed by no less than three separate specialists) has an illness they don’t understand.’

So bad was the situation that the family moved so as to try and leave behind the suspicions about the child’s diagnosis – but already  child protection investigations have started again in their new home.

For more see the Radio 4 programme or contact Action for ME.

Category: Alternative/Complementary Health, Conventional Medicine, Environmental IssuesTag: Action for ME, Families with children with ME accused of abuse and neglect, Families with children with ME targeted by schools, Families with ME wrongfully accused of FII, File on 4 on ME, ME and Munchausen's by proxy, ME still unrecognised by many health professionals, Most schools do not understand about ME, Specialist diagnosis of ME often ignored by schools

Previous Post: « How to create a low allergen garden
Next Post: Eating out freefrom is a two way conversation »

Reader Interactions

Comments

  1. Alésia

    12/11/2017 at 16:44

    I’m surprised people are able to get diagnosed by several specialists. It’s hard enough finding just one who’s willing to listen!

  2. Sarah

    13/11/2017 at 19:43

    As a parent of a child with CFS/ME, I have found that specialists in CFS/ME have been brilliant because they genuinely understand the condition. Lack of understanding persists in schools and amongst non-specialist medical professionals – as highlighted by Action for ME.

Leave a Reply

Your email address will not be published. Required fields are marked *

Primary Sidebar

Recent Posts

  • Colliding with a new reality – the hazards of low vision
  • Call for adult allergy sufferers
  • The vegan/allergy labelling issue
  • A gluten free Christmas just could be delicious – not a penance!
  • A food fad won’t kill you – an allergy will

Search this blog

ARCHIVES

Blogroll

  • Allergy Insight
  • Better brains, naturally
  • For Ever FreeFrom
  • Free From (gluten)
  • Freefrom Food Awards
  • Gluten-free Mrs D
  • Natural Health Worldwide
  • Pure Health Clinic
  • Skins Matter
  • The Helminthic Therapy Wiki
  • Truly Gluten Free
  • What Allergy?

TOPICS

A food fad won’t kill you – an allergy will

There has been a predictable outcry in the allergy world this week’s in response to Rachel Johnson’s piece in Thursday’s Evening Standard on ‘dietary requirements’ and food fads. Being charitable, I am assuming that she has never suffered from or lived with someone with a food allergy. However, I do have some sympathy with her …

Bioplastics – a solution or part of the problem?

Everyday Plastic is a social enterprise group using accessible learning and publicity campaigns to reduce the amount of plastics used daily in our society. It was founded by its current director Daniel Webb who, having moved to Margate in Kent in 2016, was horrified to discover that there were no plastic recycling options on offer.  …

FreeFrom Christmas Awards – the Winners

Since they were launched two years ago the FreeFrom Christmas Awards have been a great success. And how lucky are ‘freefrom-ers’ these days!  From Advent calendars to gifts, party food to Christmas dinner, there is no longer any need for them to miss out. Indeed, the whole family can happily eat freefrom and never know …

Do not extradite Julian Assange to the US

Julian Assange is being sought by the current US administration for publishing US government documents which exposed war crimes and human rights abuses. The politically motivated charges represent an unprecedented attack on press freedom and the public’s right to know – seeking to criminalise basic journalistic activity. Assange is facing a 175-year sentence for publishing …

What to believe – applying critical thought

For the average citizen evaluating the claims made for cure all – or even improve all – health products and procedures has always been difficult. Not only is it an area in which we have minimal expertise but most of us have a vested interest in finding a miracle intervention that will solve our health …

Could wireless monitoring devices be killing racehorses?

Regular readers may remember that back in August last year I alerted you to a posting on Arthur Firstenberg’s Cellphone Task Force site about phone masts and bird flu. Could there be a connection between the fact that the two wildlife sites in Holland and Northern France which had suffered catastrophic bird flu deaths were …

Site Footer

Copyright © 2025 · Michelle's Blog · Michelle Berridale Johnson · Site design by DigitalJen·