Invest in ME Research
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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 is ignored by governments, restricted from any level approaching adequate funding by research councils, treated inappropriately by institutes supposedly responsible for excellence in care, and used as a means to build careers and support egos for others – all this makes it even more incomprehensible.

If then a parent learns that a powerful and influential lobby has been largely responsible for maintaining the above and even influencing the establishment policies and the media portrayal of this disease as a condition that can be changed just by trying harder or thinking differently – then the nightmare turns into a continuous horror.


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 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.

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

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

Some take action themselves.



Last summer 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.





We list here 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.

To Prime Minister Erna Solberg
and any other relevant recipients
An Appeal for help to a seriously ill child

My name is Nicoline and I will soon be 14 years old.

The last half year I have been too ill to go to school. For 2 years before this I was often sick with many infections. I really like school and I am what one would probably call a concientious pupil. For me it has been awful not to be able to go to school. This is my first year in secondary school and I had really looked forward to beginning to get marks.

My plan is to study law in the future.

Luckily I have had extremely good help from PPT (Norwegian educational psychology service) and the school. I have received a robot that makes it possible for me to take part in lessons at school when I am able to. I also have home tuition up to two hours a week. This has meant that I have managed to keep up with the most important subjects and this means a lot to me.

The reason I am writing is that, unfortunately, I have met with a part of the system designed to help which does not function at all. I suffer from exhaustion and many other awful symptoms which mean that I am bed bound and isolated at home. I am mostly too ill to meet any friends and rarely manage to talk on the phone. My mother and many close family members have ME and we are afraid that I have inherited the disease.

A little over a week ago I met my doctor at the paediatric clinic. It was an ugly experience for me.

The doctor we met would not allow me or my parents to explain my situation and my symptoms.

They only talked about psychiatry and how I should be «forced back to life». It was clear that they did not believe in me being physically ill.
They did not want to hear about my symptoms because they did not want to «encourage me to be sick».

They were totally against the school robot and home tuition because there are local children sick with cancer who do not receive such help.

I think that is very wrong because I think it is equally bad for me to be too sick to go to school as it is for other sick children independent of the diagnosis.

I am very confident in that I do not have a psychological problem. The PPT have also tested me quite thouroughly since last October and they confirm that there is nothing pointing to school refusal or my having something psychologically wrong. Despite this the doctor had decided even before seeing me that I was mentally sick.

So I think that it is very hurtful and bad when a doctor «makes it sound like» I am missing shool for the rest of my life because I myself want to, and things will sort themselves out if only I push myself a bit.

If the doctors had listened to me they would have known that I had pushed myself for two years until I collapsed.
Just a month ago I was so sick that I just slept for many weeks.

My mother had to wake me up regularly to get me to eat and drink.
Luckily my mother has a lot of knowledge about exhaustion and I am a little bit better now even though I am still bed bound.

I am fearful of going back to see this doctor.
My next appointment is in a month’s time.

My mother has explored possibilities of getting a referral elsewhere but it looks like children with exhaustion are treated in the same manner in most hospitals in the country.

I think this is dreadful.

When one gets sick as I did then it should be obvious to be met in a positive manner whilst in hospital.
At least it should clearly be so that one is not disbelieved the moment one meets the doctor.

I choose to give the doctor the benefit of the doubt and I think they would have treated me in a different manner had they had more knowledge.
There is after all no doubt any longer that ME is a physical illness.

Nevertheless, children with exhaustion, when there is a reason to suspect ME, are being treated as mentally ill.

It is like rubbing salt in the wounds of children and their families who have it bad enough as it is.

In my case the doctor has already, after the first appointment, gone as far as phoning my case officer at PPT and asked them to force me back to school.
That will most probably make me even sicker.

To become sicker does not only mean that I will be more exhausted.
It also makes all of the other symptoms worse, such as extreme pain all over the body, nose bleeds, nausea, head ache, flu like feeling, sore throat, dizziness and much more.

If it turns out that the symptoms were due to ME, as we suspect, then the chances of getting better will be reduced.

It means that if I get pushed into using too much energy now then it may lead to my chances of never getting better or healthy - this is frightening when one is only 13 years old and has numerous plans for one’s life.

I therefore think it is strange that the doctor will do this, long before I have a diagnosis – as the doctor is taking a huge risk on my behalf.

I have been frightened ever since I came home from the hospital.
I am worried that I shall miss all lessons at school now as I am not allowed to receive home tuition or use the school robot.

I am also terribly scared of getting sicker than I am already, especially now that I have finally had some improvement.

I know that you have previously engaged with ME patients.
I think that is wonderful.

Unfortunately, the situation for us children being investigated for ME and children who already have the diagnosis is critical – there is no expertise and no help available.
It is urgent to improve our situation.

I therefore ask you to address this so that we can get help soon. I am happy to contribute if there are any questions.

With kind regards,

Nicoline


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 are given a hard time - 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 are trying to attempt to end one of the worst of the insidious consequences of ME - isolation - click here.






Further Reading:

ME is like a butterfly chained to a stone

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Treading Water in the Media

SMILE Study

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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