Children with ME

ME is the biggest cause of long term sickness absence in schools [1]. 1 in 5 parents face child protection proceedings [2]. ME is not taught in medical schools and 80% of doctors think its psychosomatic [3]. Because healthcare professionals don't understand ME they start blaming the parents. ME is often mistaken for Fabricating or Induced Illness (Fii) a form of child abuse. ME is actively targeted in Fii training.

Care for an ME patient is counterintuitive and goes against general medical training. Overexertion can cause a crash (flare in symptoms) for days/months/weeks. In severe cases it can cause relapses and patients become significantly more disabled for months/years; some never recover. The NHS recommends Graded Exercise Therapy where patients are told to increase activity and ignore symptoms. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [4] and has been rejected by over 80 charities [5]. Parents are often left with a choice: give their child a harmful treatment or face prosecution.

Lack of education leads to disbelief, mistreatment and abuse. Jessica Taylor-Bearman author of Behind Dark Glasses [6] talks about the care she received and the lasting impact.

GET INVOLVED:
ME Association (UK Charity)
Invest in ME (UK Research Charity)
Tymes Trust (UK Children Support Charity)
Open Medicine Foundation (USA Research Charity)
ME Action (Global Grass Roots Action Charity)
Science for ME (ME Science Forum)

VIDEO CREDITS:
Parliamentary debate June 2018
Scottish Petitions Committee
Fabricating or Induced Illness
5 Live Investigates
Newsbeat ME and me
Tina Rodwell Canary Podcast
Carol Monaghan Prime Ministers questions
Dr Nigel Speight
Jessica Taylor-Bearman Canary Podcast

[VivRoode]

This breaks my heart... All too familiar with severe ME, cannot imagine having to go through that as a child or parent

[uliyankadoe]

This is an excellent channel! I wish more people watched it as it's solid research based, not people's ideas or predjudices. Thank you for your dedicated work! Unbeliavable how the protective parent gets targetted in exactly the same way as a protective parent gets targetted by the pathological court system and Cluster-B personality of a violent parent (narcissist, psychopath, sociopath). The tactics are strikingly similar.

[chelbyw]

#StandupforGigi

Uk is treating ME/CFS horribly! It is disturbing how terrible their understanding of ME is and the consequences it has on families. Another great video, thanks :)

[KittenCasserole]

Wow, thank you for the amazing video. So impactful

[wmd]

so scared to think of all the women in prison for abusing their kids when they actually weren't. the poor kids had ME.

[jennyburgstrom]

Having been a child with undiagnosed moderate ME/CFS, I experienced crashes often. Forced to participate in physical education. I was forced to exert myself beyond my limits. Shame on anyone who goes after these kids' parents.

[BrokenBattery]

Transcript

ME is the biggest cause of long-term sickness absence in schools (51%). Survey of over 330, 000 pupils. Dowsett, Colby 1997. (Slide)

1 in 5 parents of children with ME are threatened with child protection proceedings.
Action for ME Survey 2017. (Slide)

Stephen Pound MP, Ealing North (Clip)
What happens to that child? I'll tell you, very often, they're referred to Social Services. Very, very often, child protection referrals are made because their child is missing school, and imagine the impact on that child, on that family.

ME affects one of 300 people in the UK but it's not taught in medical school. Department of Health. (Slide)

The WHO classified Me as neurological in 1969 but 80% of doctors believe it is psychosomatic. Survey of doctors in General Medicine 2019.(Slide)

Emma Shorter, Scottish Parliament Petitions Committee(Clip)
Because health care professionals don't understand how children can remain so sick for so long, they start blaming the parents.

Me is often mistaken for Fabricating or Induced Illness (FII), a form of child abuse. (Slide)

NHS Choices(Clip)
The invention or fabrication of symptoms in a child by a carer. The mother may fabricate symptom in a child because this is a form of child abuse.

Children with a diagnosis are not safe from investigation because ME is targeted in FII training. (Slide)

Mary Jane Willows, Action for ME, 5 live Investigates - May 2019(Clip)
I was recently informed by a social worker the ME's now highlighted in some FII training. Social workers are now more suspicious of ME. The number of people in the 16 years I've been working in this condition, it's escalating, and within that time, not a single case where this diagnosis of ME has it been proved. I think although the numbers are high, we're only seeing the tip of the iceberg.

Within the last two weeks, a moderately affected young person that I'm working with, he was doing really well. He was progressing at a gentle, steady rate, but his paediatrician forced him to go back into school with parents under threat of action if he didn't attend. The resulting activity and stressed caused him to crash, and it could take him months to regain that level of activity again.

Care for an ME patient is counterintuitive and goes against general medical training.(Slide)

Overexertion can cause a crash (a flare in symptoms) that can last for days/weeks/months. (Slide)

Tina Rodwell, The Canary Podcast 2019 (Clip)
They got him to do some catching balls and sitting up and down from a chair, and he could do 20 times. The next morning he woke up, he was in severe pain. I have never witnessed anything like it in my life. By that evening, he asked me if he was going to die.

In severe cases, patients can relapse and become significantly more disabled for months/years; some never recover.(Slide)

Dr. Nigel Speight, Pediatric ME specialist(Clip)
That race resulted in a severe relapse, and she was off school for 18 months. We all know the damage that overexertion can do, and that was one episode of producing an 18-month relapse.

The NHS recommends Graded Exercise Therapy where patients are told to increase activity and ignore symptoms.(Slide)

Emma Shorter, Scottish Parliament Petitions Committee(Clip)
You had to increase walking by 10% each week, and as I began to get sicker and sicker, I was told this is the moment where you push through and you get better. I started the clinic being able to walk about four minutes each day. I ended and I needed a wheelchair.

Graded exercise therapy makes over 50% of patients worse and has been rejected by over 80 charities. Analysis of 18, 000 patients from multiple surveys, Geraghty 2017.(Slide)

Dr. Charles Shepherd, ME association(Clip)
We know from our own surveys that graded exercise, in actual fact, makes over 50% of people with this illness worse.

Parents are often left with a choice: give their child a harmful treatment or face prosecution.(Slide)

Carol Monaghan, Glasgow North West(Clip)
When the parents of these children make the extremely difficult decision to remove their sick child from a program of graded exercise therapy, many of these families have child protection proceedings triggered against them.

Some children have been removed from their parents and forced into harmful treatment.(Slide)

Dr. Nigel Speight, Pediatric ME Specialist(Clip)
This treatment consists of what they call an activation regime, where she has a physiotherapist for one hour and then a teacher. It hasn't made her better. It's making her worse, but because her mother has disagreed with the doctors, they have got a judge to remove her parental rights. This girl is at the mercy of these doctors, and mother is only allowed to see her 30 minutes a day. It is really one of the most horrendous cases I've ever seen.

I've had patients who met the criteria for PTSD. They came to a doctor with ME, they left with PTSD. Dr. Nancy Klimas, Nova Southeastern University.(Slide)

Lack of education leads to disbelief, mistreatment, and abuse.(Slide)

Jessica Taylor-Bearman, Author and Patient Advocate, The Canary Podcast 2019 (Clip)
I felt like it was judgment day when they came around. You had to have improved a bit. If you hadn't improved a bit, they would shout at you. I have had problems with doctors ever since. I find it very difficult to put my trust in them because I just know what happened to me before. I'm petrified they're just going to say it's psychiatric.

"People become traumatised by a debilitating illness [ME] and then get traumatised again by the reaction to them by people who don't understand, " Prof Leonard Jason, DePaul University.(Slide)

Tina Rodwell, The Canary Podcast 2019(Clip)
I vividly remember coming away from one appointment, and he said to me, "Why do doctors hate me so much, mum? Why won't they listen?"

ME specialists shouldn't feel the need to apologise on behalf of the medical profession.(Slide)

Dr. Nigel Speight, Pediatric ME Specialist(Clip)
I always feel constrained to apologise on behalf of the medical profession, so I've apologised, okay. I'm sure you know what I mean.

[RamonaMcKean]

Heart-breaking. I'm an adult with ME/CFS. It is a positively cruel condition, made worse by ignorant (both meanings: uninformed and unkind) people, including doctors who gaslight. Poor parents and poor kids suffering from this. 😥🩷