Am I Just An Over Anxious Mother? Well actually NO!!!!

Am I an Anxious Mother?

You bet I am!! For two years I have had to drag the medical profession kicking and screaming to accept my young son’s physical illness.

Two years ago I wrote this after I was severely reprimanded for taking my child’s symptoms as a problem, that I must understand that this has an impact on my son's perception? I ask you those symptoms caused me great concern and anxiety, should I just ignore what nature is telling me. 

I have since found out many underdiagnosed and treatable conditions that have caused those symptoms and I wonder how many children and parents are groomed to believe they are mentally ill rather than they are physically suffering. 

How many mothers have been forced quiet by the PACE trial. The lead researchers and advocates could not even determine what recovery meant? For fluff sake this is not an intellectual debate about how far the mind can control the body - this is people’s lives we are talking about!

This is what I wrote:

So it was decided that we must address my anxiety. I acknowledge my anxiety and would hate to inflict this on Angus and agree if I was doing this it would indeed be a very bad thing.

I explained that my anxiety is mostly upped a few notches on the richter scale due to the chronic pain Angus is left with when he has over exerted himself, or enjoys a game, reads a book or film. So what do I do when he is rolling around in pain I asked? Divert the pain and take his mind off of it, the answer came as it always does.

The trouble is all the way through this illness we have been dismissed this way. It is nothing new and it makes the sufferer and career feel as if they are just the ones that are unable to cope. New and old studies and research prove what this illness does to the sufferer’s body physically, but these are just nonchalantly waved aside! It astounds me, and yet I have been forced yet again, to keep him moving and told it is possible to take his mind of the pain, don’t fail him!

While I was being talked down to; with none of my concerns taken or listened to, Angus at this time was in another room with the physio getting out of a chair 27 times and throwing a ball around. And it seems to me no matter how many times I tell everyone in the medical profession that his problem is not moving or lack of wanting to move, it is the fact that when he stops for days and weeks afterwards the pain is constant and unbearable. But it is my anxiety that brings the pain on I’m told; if I do not acknowledge the pain the pain will go away? Perhaps they are right. Last night Angus was more himself – hyper and buoyant full of life. He mentioned he had a headache as he went to bed, but nothing out of the ordinary.

Perhaps the weeks it has taken us to get Angus in a comfortable state, was just a figment of my imagination, I see the pain more acutely as a parent (undeniably true, I would move heaven and earth to stop anything from hurting the people I love) and Angus does not have so much of a problem with it now? Indeed most people who do not deal with it on a day-to-day basis feel this way; we are conditioned to believe that over anxious mothers adds to our children’s suffering. I wonder if a study has been carried out to see how many children’s lives have been saved by these those over anxious mothers.

ME/CFS history has been littered with mothers that are apparently over anxious and distressed. Only for it to be proven this condition is acute and caused by an ongoing infection. There are also many littered children turned into adults left to fester in the belief they are willing themselves ill.

Angus never travels well, he walked through the hospital because they frown on me using a wheelchair, and then they exercised him, knowing full well my concerns. They do not do this maliciously I would hope, but because they believe they are right and that I am over anxious. That is what they have been taught.

The next couple of weeks will show me if I am what they accuse me of. I have decided to live each day as it is, change what you can for the better and keep calm and carry on to be happy x

Well a Year on and he has never recovered from that day. 4 days after that visit to the hospital he was more or less bed bound! We moved hospitals and this is what he has been tested for so far:

Coeliac: Diagnosed two years after Angus became ill with damage to his Villi beyond repair now? Coeliac is an allergy to Wheat that crumples your villi! Without your Villi working, you cannot take the goodness out of your food. So for two years my son has been malnourished.

PoTS; He has just been diagnosed with Postural Tachycardia Syndrome (PoTS) it is an abnormal increase in heart rate after sitting or standing up. Nice was aware of the connection of PoTS and ME and in 2010, they made a note to look into to this further. They have put ME/CFS on the static list, so that it will not be looked into now for a very long time. Why?? This condition can cause so many problems with day to day living and can be life threatening!

Still looking into his connective tissue problems.

I cannot believe how mothers of very sick child are treated. With total disregard to the actual damage to their child’s health and the very physical illnesses they have. As you read this, one of the so called leading Paediatrics into this condition, and one of the only Charities to help mothers and their children are funding a PACE trial for children called MAGENTA.

We are now in 2017 and yet another trial called FITnet-NHS has started and we should all hang our heads in shame. Tymes Trust has had more than 180 parents accused of Fabricating or Inducing Illness (FII).

How does that feel ?https://youtu.be/sjWjCaIoJPs

The leading paediatric in ME/CFS who researchers on children and is doing the FITnet-NHS trial gets the parents involved but look at the wording "address the parents beliefs and behaviour" if you read that would you start to think about the parents involvement in their child's health. I think this needs to be addressed and  the researchers held accountable? Mar-Jane Willows is now part of Action for ME and so this adds to the seeming legitimate questioning of the parent and misinforms about the physical medical problems of ME? 

Dr Ramsey in 1986 yes in 1986!!! For havens sake defined Myalgic Encephalomyelitis:

A syndrome initiated by a virus infection

A multisystem disease

Neurologial disturbance

Musculo-skeletal dysfunction.

So it is not as though we do not understand how it affects the body, but because we have no test a group of psychiatrists could theorise, fudge the figures on a trial paid for by the Department Work and Pensions and get away with it!

Our society would never knowingly groom or harm children would it? Our Government would make sure the right thing is done? NHSE would demand the correct treatment and NICE Guidelines would not recommend a treatment that would harm us? GMC is there to protect the public from malpractice not for other medical practitioners to use it for their will and biding. So how come treatments can harm and not be routed out and the people that use and advocate them can become so powerful?

I do not use the term “groom” lightly, but ME patients are groomed to believe they are capable of living:

It is only when dealing with "CFS/ME" (and Gulf War Syndrome) that these psychiatrists are regarded by Government bodies and the medical insurance industry as "experts". These psychiatrists are on record as being actively involved in social engineering via the deliberate creation of "psychosocial" illness. They believe that the biomedical approach to healthcare (ie. that ill-health and disability is directly caused by disease and its pathological processes) is (quote) "a blind alley" and that the correct approach is the psychosocial one, in which "aberrant" thoughts, feelings and behaviour can be "modified" by their own brand of cognitive behavioural therapy with graded exercise (CBT/GET), resulting in restoration of health and productivity.

Sophia was forcefully taken from her home and put into a mental hospital she died as a result and her autopsy proved how much damage was done to her internally.

http://www.sophiaandme.org.uk/collusion.html

That was back in 2011 when the PACE trial was taking control of ME. 2017 with all the evidence now showing ME is in the blood NICE refuses to budge and Angus?

Well Angus gets no treatment we get no help. We don't have a blue badge due to the PACE trial believers, but that blue badge could give back some of his life.

What of his future? No one can tell me. But we hope the many good researchers will get the funding they need.

Angus is now 12 and has an hours lesson once a week and it takes him four days to recover which is better than the 15 minutes with a weeks recovery. it is progress.

If the flaws in the PACE trial was looked into at the beginning Angus would not be as disabled as he is not?