Severe ME Alert Please Check For POTS ME makes me SadMad!!!

ME makes me SadMad!!!

I have tried but have failed to find many Doctors in the public eye, or even a Paediatric Doctors to take the heart of ME seriously!

They refuse to listen no matter how hard you try. A parent and patient can tell you a lot about the illness you are dealing with but most will just turn their backs and close their ears and eyes!

I do wonder how MAGENTA or SMILE made it through the ethics committee and any doctor that understands ME would suggest that Wii fit a good thing for children. Children love a challenge and only too happy to play until they collapse, everything you read about ME stresses that you have to be careful with their activities?

Any child would love and over exert on such devices and they are told screen time is a red activity? If we do not fully understand this illness, but know lack of oxygen is bad why are these types of research allowed to continue?

Far back as 1986 Dr Ramsay put the involvement of cardiac system as part of ME and yet my GP does not or won’t do a stand test? Yet a nurse in a hospital can?

Professor Julia Newton, has a good understanding of Orthostatic Intolerance (OI). For our children however it is up to the parent to find this information and is incredibly hard to get it taken seriously.

It was the comedian John Bishop that demonstrated what lack of oxygen does to you. When he went through the training for a space station activity they cut down his oxygen so that he could see how it was out in space if something went wrong with the helmet. In those few minutes I would see what was happening to my son. When he is recovering from doing anything other than his baseline activity he goes through this, he can hardly remember his name or process a simple question like: 'Would you like some water'.

The NICE guidelines thought about including OI in 2010, they nodded only slightly in their guidelines by suggesting that a heart monitor should be worn when undertaking any form of exercise, sadly though no one does. I suggest it should be worn for daily activities to better assess the damage being done to heart and brain. What is my reasoning behind this? This is my son’s printout of trying to do a normal activity when I thought he was OK. No real warnings are given to us about the adverse effects of normal activity. Why is this? A simple thing of a friend coming round :

For days afterwards his HR and BP will bounce around, until this gets answered we will never be able to live a comfortable or manageable life. For a 31 mins of activity, whether we build up to it or not has to be stopped if we introduce another cognitive activity and doing a dot-to-dot has the same effect on his HR as running around the garden?

Now new research is coming out from Navioux in collaboration with Ron Davies. They have found that the Mitochondria can sense every kind of danger from the pathogens to changes. they detect a a drop in voltage caused by the diversion of electrons (NADG / NADPH) to make viral components of respond to broad variety of toxins. In this cell danger response (CDR)  the mitochondria respond quickly decreasing their oxygen consumption this prevents pathogens from using the building blocks of the cell to replicate and puts other cells in alarmed state and gets their defences up. This process seems to put the sufferer in a limbo existence and for some just about breathing.

Court Johnson puts it much better than I do and is always worth reading:

http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/

Any how the lack of oxygen is all around the body and I wonder how or why this fact that you can prove gets missed by so many GPs, and hospital staff?

Now if he was on the MAGENTA trial or the SMILE trial even though the Dr involved with ME experience and reports that she is trying to answer the question on recovery in children and adolescents, none of the children under her care are tested for any form of OI ?  Even though HR and BP have been one of the leading signs of ME for decades?

So how safe are these children with ME under the NICE guidelines?

None of her children; who are asked to increase their activities are given a heart monitor or their Blood Pressure monitored during activity or parents told what to look for with the recovery period. Even though this can and should be used as a handy tool to safeguard the body and ensure recovery. The now professor spends her time looking for activities without a safe method of monitoring her very young children under her care when no harm should be done. There are watches that can easily do this and I am sure that if they were used, useful information and monitoring could achieve good results.

So are these trials safe and is it ethical?

Oxygen depletion through the body and particular the brain does what damage? High blood pressure low blood pressure through the day does what?

It is left to mothers like me, to self-educate, when we do we are accused of all sorts of things including Munchausen by proxy. Over 200 mothers with children with ME and many more with Ehlers Danlos Syndrome are put through this experience and the Scottish parliament what control over our children given to teachers and professionals?

Many teachers, social worker, health professionals use |Muchausen by Proxy as an excuse to punish families with children that do not get better or attend regular school. If they understood and had heart monitors this would not happen so frequently.

One mother has been made to take her very ill child to a psychiatrist 4 times to prove what? Because the consultant wanted to prove the whole family were mentally unstable. This is a professional that is the so called lead in the field of ME? What numbers are kept on such cases? Should this not be monitored?

A mother of a child diagnosed with Ehlers Danlos and needed tube feeding was sent to psychiatric hospital and held there because they understood little about the condition. How does that happen, and why do not Doctors stand up for us? We have to be careful Unexplained physical symptoms are not just misdiagnoses from professionals!

My son was put on CBT & GET as prescribed on the NICE guidelines except for the monitoring of the heart and I was told he did not have CFS as he would have recovered on this treatment?

This is 2016 and way back in 1986 and just before he died Dr Ramsey gave the following definition:

“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

1)      A multisystem disease, primarily neurological with variable involvement of liver cardiac and skeletal muscle, lymphoid and endocrine organs.

2)      Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

3)      Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

4)      A characteristically chronic relapsing course.”

Research is and was proving his theories. So why was illness beliefs pushed as the cause?

So is it only me, that after the SMILE trial and no data published and after all the worry written to the Ethics committee does someone not ask for the data to be released. Why did not the people conducting the trial ask and respect the parents experiences on the SMILE trial and report it in their write up!

Why does no one look for the tell tail signs of connective tissue problems? This is the top of my son's leg and Dr Speight pointed this out as something to be looked into nearly a year ago! I'm still struggling to get a Doctor to look at this? Dr Speight is now reported to not uphold the holistic view of ME and is not allowed to talk about ME for the next 6 months? A doctor who cares about evidence punished?

These pink and sometimes purple lines show the skin is stretched, now this is on the outside of the body for all to see. What is going on on the inside? The connective part of his joints where he gets most of his pain. We are made up of connective tissue after all!

How many of our children are made severe because they are diagnosed early with ME, but also have POTS and given CBT & GET? Why do we hide the numbers or not record them? Especially when the PACE Trial is full of controversy? the researchers of the PACE trial would like us all to believe that Unexplained Medical Symptoms should be diagnosed when the medical profession are not sure what is going on. Each doctor goes on what he has been taught and at the moment they are encouraged not to test for things that have no complete answer or are complex, this can not be allowed to continue because so many people are left diagnosed with conditions that have treatment and how can we make strides forward if we do not strive to find a physical answer to medical problems?