Mothers Accused of FII Because Their Children Have ME Why?

“Why do the doctors hate me so much mum?”

I look down at my son wrapped in a leaden body, full of lactic acid, brain fog that muddles his thinking like my grandad’s Alzheimer’s, with moments of crystal clarity that lulled you into a false sense of security.

“Hate is a strong word my boy”

“But they really do mum; I can see it in their eyes”

I kiss the top of his head and I recognised his truth. His forehead was clammy. I gulp down the panic as I feel his little heart pound like a thundering train.

“They don’t hate you; they just don’t know how to help you.”

“They don’t even try, mum”

I had taken his temperature it was 35.4 his nausea was bad, he had his eyes closed trying to dispel the urge to be sick, constantly dizzy with glands like conkers, but I could not take him to the doctors. I knew they were running out of patience with me, with him. I had never been scared of doctors before, I was now.

I knew what could happen; two of my friends had had their children taken away. It had taken 30 days from the hospital suggesting that a 2-4 week stay in hospital; without visiting from mum. They assessed rehabilitation was appropriate medical intervention at that time. A policeman knocking down the door physically taking the child away, it was deemed appropriate action at that time? I look down at my restless son and knew he would never cope.

One of the children that were taken away for rehabilitation to hospital, came out tube fed; it was all hushed up nothing in the papers, no action taken against the paediatric doctor responsible or hospital and I would never have believed this could happen. I lost touch with the other mother, so have no idea. This trauma they put families through is happening every week, if not daily. Some manage to get away and find another way or just fade into the distance.

A week ago, the physio had taken my son out of the consultation room so that I could have a word with the psychiatrist, it was prearranged mutually and I was comfortable. The physio and psychiatrist were part of the team helping us, I thought to cope with ME, I believed and trusted them. That ended when the physio had taken him off happy and when I saw him next he was in an elated state, he had managed to do all the exercises and as the physio had made eye contact with me, she took great pains in telling me that he had NO TROUBLE DOING ANY OF THEM!

Although I was taken aback; as they had previously educated me in how even putting on socks had to be factored in as an activity, I trusted them that they would not do harm and was hopeful this was the turning point of his recovery. He didn’t recover though; he slid dramatically down and was now in constant pain and mostly bedbound.  

They called a meeting for the next week, asking for all the family to attend. A team meeting they said was needed as things were not progressing as they should. My husband and I were happy and thought we were getting somewhere. We sat in the room as they explained that they had taken some advice from a colleague; who had great expertise in this field, and it could not be Chronic Fatigue Syndrome because our son was detreating on Graded Exercise Therapy and Cognitive Behaviour Therapy and this was most unusual. They were going to look at the diagnosis again with a view of re-diagnosing. They questioned me and my husband on what had happened to our son after the last appointment. I kept quiet and just looked on closely at the group huddled together around my husband, while my husband spoke in his frank and honest way. They seemed to inch ever closer on his every word.

I dismiss the scene from my mind. I looked down at the grey faced boy with those familiar dark panda circles around his sunken eyes. A deep sigh escaped me, at least he was asleep. I put my legs against his cold ones avoiding his feet as warm as toast.

I had received a letter that morning, more or less demanding permission to take our son into hospital for rehabilitation. After mopping the floor and cleaning the house, I had sat down and  had written a letter to my sister-in-law and my dearest friend. I was asking them to hold on to it until such time they took my son away. I rang them to tell them what it was about and not to open the letter, to keep it sealed and only give it to the solicitor of which I gave them the details I hoped this would show a court if need be, that what I suspected to happen had. Hoping this would give a more balanced view of the situation and some understanding into the facts of ME.

My friend’s reaction was touching; they immediately came round in support. They were astounded and gobsmacked over the letter I had received, and were ready to march so justice could be done, but march where, I asked, who will listen? This has been going on for decades I explained.

What is wrong with these people, how can they do such a thing. I thought there was Hippocratic Oath. How can they not understand ME? They only have to look at him, and you. You are a mother we all look up to, the one we all go to when we need help. They both spat the words against the medical staff, the system, the GPs response, interchangeable with vigour, but it was no good. Their words were not going to change events. I’ve rang the Tymes Trust the only Charity I trust, they will help I’m sure, I reassure them.

You see I had researched the history of how mass hysteria had given a foot hold of loosely based mental health explanations of ME. How the psychiatrists had lobbied to self-promote the idea, other disciplines happy to delegate responsibility. The Department of Work and Pensions, the insurance industry, and Government were jumping for joy that they could all offload the “ME problem” and keep the truth under wraps.

The National Health Service along with NICE Guidelines seemed to say the right things to the charities, but played bat and ball with the reality. The General Medical Council only took action against anyone who opposed the status quo, with ethics committees seemingly blind to the consequences of their actions. While the Medical Research Council stood by and let it all happen and even if the courts intervened; those involved directly or indirectly to the PACE trial, were allowed to ignore the courts and carry on spouting their rhetoric. All other academic fraternities and medical departments turned their backs on those that suffered. The amount of families stressed to breaking point, hidden. All of them that should know better, loosely agreed with the notion ME could be linked to mental health; they did not want an untreatable illness on their books, clogging up their promotion and self-esteem? Whistle blowing is only worth doing if there is treatment to fall back on, and only the bravest try.

You have very little choice; as a women even in 2017, but to be embroiled in femininity and argue about your sensibilities. Motherhood is a double edged sword it seems. You are stripped of identity and accused of everything they can throw at you. You have to stand stripped necked and humiliated, play the system so that no harm could come to your child, and I find it barbaric, beyond words. There is no control or restriction on mental health's abilities to run riot and rough shod over general health.

You find out you are a stronger woman than you thought, as you catch each accusation and start to juggle. Mental health is steeped on you because of a wondering womb, hormones, autoimmune problems or deferring understanding from every side of the medical profession, all baying for funding. Little truth seeps through and everyone it seems allows this to happen. Then a light, a glimmer of a sparkle shines and you hope. But is hope going to be enough?

My son starts to babble on and like a brook in spring; his body ripples and sings in the moonlight. As my tears flows to him, I wonder what the best action would be. I force the tears back and breathe deeply as I unhook my arm from his grasp.

It is common practice to accuse a mother of Fabrication or Inducing Illness (FII) when their child has ME and does not recover in the specified 6 months. The only research they talk in the media is exercising yourself to health, taking responsibility of your illness and the anxiety that is ME/CFS. You write letters and fight, but you are just one of many voices that fall on turned backs.

As a mother of a child with ME I have never asked for extravagant tests, treatment or operations the classic signs of FII. Yet because of the social landscaping of ME, and untruths told, they can still get FII through the courts with little to no resistance. Even if you put up the best of evidence their backs are turned and their ears closed, they let it happen?

If I agree to the rehabilitation in hospital, I wonder as the first glow of the new dawn star-lighting through the kitchen window; to what I know is harmful treatment, who would help my son recover? Would anyone know how to help him recover? Who would get justice for him? Who would stop the harm done to him? 

The answers to these questions are for all to see in the history of ME, the answer:

No one, not one of you will do no harm! For doing nothing, is harming over 25,000 children in the UK that suffer from ME. Still known harmful treatments have got through ethics committees????? Parents are accused of fII, none have been charged. The Children are taken and harmed by rehabilitation and the result of harmful research is hushed up in the UK in 2017. They do not report decline of health or ability as a harm in research, why is that?

The glimmer of hope are a few Dr’s like Dr Speight that are true heroes, who stand firm with mum's like me, with a few other brave souls that are hounded by the PACE trial crew who try to show the truth behind the myth. It is truly truly SHAMEFUL how this is allowed to continue!

Me and my boy what happened to us. We learnt to fight stand tall and announce to the world ME is a very serious life changing illness, with no treatment, and no sound prognosis but we hope. At any time there could be a knock on my door, it is hard to live with but sometime you have to stand up for what is truth!

With your support behind us adding to our voice and demanding change, we can change the medical profession and the NICE guidelines and start to tackle the last big medical condition of our time.

As a mother you are Gaslighted and I explain a little her of how it feels

https://www.youtube.com/watch?v=sjWjCaIoJPs&t=154s