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Children with ME

“There is clear evidence of the impact of ME/CFS on the education and social development of these young people. The stigma and social effects of pediatric ME/CFS include the loss of normal childhood activities and in some extreme instances, inappropriate forcible separation of children from their parents”

- Institute of Medicine (IOM) Report - “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” February 2015

For any parent the event of their child being diagnosed with a disease is one of the worst of experiences that they will ever have.

To then discover that there is no treatment, let alone a prospect for any cure, will likely make them search for the reasons why - expecting to find answers, but instead finding more questions.

To realise that this disease has been ignored by governments, restricted from receiving any sensible funding for research into the disease by research councils, and treated inappropriately by institutes supposedly responsible for excellence in care and guidance– all this makes it even more incomprehensible.

For children, of course, the future is often upended - with possible additional consequences from the disease, apart from the direct symptoms from the condition itself.
Losing school, losing contact to friends, losing any social life, isolation.

Could it get any worse?
In the UK yes! What about then being branded with the scandalously contrived soundbite of pervasive refusal syndrome or some other such nonsense?

Yet despite this surreal and sometimes ugly scenario we see many examples of the resilience and courage of children with ME - young people who deal with the effects of ME on their health and their lives and yet continue to hope and believe in a better future.

We have many examples of young people supporting the charity and using what possibilities they have to raise awareness and funds.

"ME is like a butterfly chained to a stone"

We received this image from Professor Kristian Sommerfelt in Norway - a drawing by young Emma
who so clearly explained in her image here what ME is like for a young person.

The great majority remain positive and maintain an unbelievable lack of any resentment at their situation - blaming nobody, stoically handling this disease - quite remarkable.

Some take action themselves.

We received the story that appeared in our 2018 Journal of IiMER from Nicoline - a young Norwegian who communicated herself to the Prime Minister of Norway about her situation.
Click here

In the UK an estimated 25,000 children have ME - but nobody knows for sure as data is not currently collected!

There are so few paediatricians that understand ME - another failure of establishment policies.
Even those who are qualified, knowledgeable and appreciated by parents of children with ME have had difficulties - click here.

As for research - well, we have commented here and here on the type of research that attracts funding thanks to a rigid system that defies any logic or concern for children.
The less said about that the better.

Invest in ME Research initiated an attempt to end one of the worst of the insidious consequences of ME - isolation - click here.

Just recently Professor Ola Didrik Saugstad - Professor (em) of Pediatrics at University of Oslo, Norway - wrote an editorial for Acta Paediatrica.

The article highlights the importance of proper diagnosis of children with ME and the problems arising from incorrect diagnosis and treatment of ME in young people.

Professor Saugstad argues for a reorientation of the understanding and attitude to ME patients to occur worldwide as ME patients, especially the worst cases, suffer enormously and among them the paediatric patients are most vulnerable,

The link to the editorial is here - click here

Professor Saugstad concluded by stating that "it is already now time for the medical profession as well as the whole society to repent, as these patients have previously often not been treated with the respect and care they need and deserve."

Further Reading:

ME is like a butterfly chained to a stone

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Treading Water in the Media


The General Medical Council -Ignoring the Elephant in the Room

Invest in ME Research Response to Institute of Medicine Document - “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”

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