Fighting for Truth

Happy Birthday Sophia

We will Keep fighting for you and everyone with severe ME

Sophia’s life should be celebrated and honoured! Her mother should have had an apology and become a Dame, but still we fight on. What more evidence do doctors need that this disease does untold damage than from her autopsy and the evidence of the different forms or orthostatic intolerances ME patients have? Low oxygen gives you brain issue!!

Her life should have shown us how to treat people with ME and respect those who have CFS.  But we still fight over a name because we have to see the wood, the trees, the branches and the leaves and all that live around and on them. A name matters to research! A proper diagnosis matters to patients and treatment!

Her life should have given us clues where to search to find some answers, her death should have shown us the way!

 Our bodies give us clues to our state of mind? I am appalled that how doctors are allowed to treat their patients and refuse to find causes. If you disagree we are still draconian enough to throw them in asylums and tell them to behave better? They write books to show how disgusting our thoughts/beliefs are and people read them and quote them? Mental health should be about understanding that chemicals released by the body affecting the brain and therefore thought process. They should be supporting not ridiculing? Or is that just me who thinks lobotomise and ECT were the wrong treatments for misunderstood coeliac to Alzheimer’s and goodness knows what else in-between! Have we forgotten history, do we choose not to learn, do we not take note of research and think hold on we could be doing harm here?

It is how they behave medically that upsets me- over 200 hundred families and many more are threatened by all sorts of medical and educational staff that they will be taken to court, that their children will be taken from them! When you fight them to get truth, treatment and research, you get hung out to dry in public or gagged and bound by establishment. If I go missing after writing this come and find me x If I get hung out to dry don’t stand and point and laugh - try to understand the truth behind the myth.

A list of doctors I have read or heard derogatory remarks from the establishment or whose good solid research gets hidden from the public from the PACE trial advocates, whom should have been sorted out in 2011:

Dr Myhill, Dr Speight, Dr Bell, Dr Montoya, Dr Ron Davies, Dr Mark Van-Ness, Prof Light, Prof Newton, Mady Hornig, Prof Kerr, and so very many more.

Worst of all those who stand up for ME sufferers to say Graded Exercise Therapy (GET) is bad for ME sufferers are threatened too? These brave Doctors, researchers and professors stand up in no man’s land to be shot at while the brave lay in droves in their near death beds.

Her life should have given the NICE guidelines changes to treatment accordingly.

GMC should have supported the doctors and this family in particular! 

As long as they keep you thinking that we are mental, whatever that means! As long as they keep you thinking we do not suffer real pain, we can be dismissed. You, whoever you are, are keeping physically ill people in rooms to be tortured by one of the most hideous illness known to man! It takes decades to die.