Countrygirl
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This ME Awareness Week Esther Crawley hijacked the Millions Missing Campaign to promote her FITNET trial, claiming that with her intervention children had a high rate of recovery at six months.
https://www.nihr.ac.uk/blogs/worries-that-keep-you-awake-at-night/8466
Curiously, it has also been reported at the Bristol demonstration, not far from EC's clinic, that a woman was spotted placing adverts for FITNET in the shoes that were sent by bedbound patients.
One of the Mums who belongs to a group of about 1000 members, many of whom were patients of EC, says that they did not recover in the six months as claimed by EC's Bath clinic. It is a delusional claim according to them.
Here is a tweet from a Mum and below is the link to her blog about her child's experience of a typical encounter with the paediatrician GP of a youngster with ME. She also relates the GP's attitude.
https://agirlandme.wordpress.com/
https://www.nihr.ac.uk/blogs/worries-that-keep-you-awake-at-night/8466
Treatment in children is reasonably effective. With specialist treatment, about two thirds will get much or completely better within 6 months, returning to full time school with minimal, if any, symptoms. But even though it is relatively common (at least 1% of secondary school children miss a day a week of school because of it), very few children have a local service to provide treatment. Without treatment, less than 10% will get better. If you think about it, that means that about 0.9% of teenagers are suffering needlessly, for months and months because of a lack of available treatment. I see these children years later, as they travel to my clinic in Bath, desperate for hope and help.
Curiously, it has also been reported at the Bristol demonstration, not far from EC's clinic, that a woman was spotted placing adverts for FITNET in the shoes that were sent by bedbound patients.
One of the Mums who belongs to a group of about 1000 members, many of whom were patients of EC, says that they did not recover in the six months as claimed by EC's Bath clinic. It is a delusional claim according to them.
Here is a tweet from a Mum and below is the link to her blog about her child's experience of a typical encounter with the paediatrician GP of a youngster with ME. She also relates the GP's attitude.
https://agirlandme.wordpress.com/
Abuse by Ignorance: M.E.
Abuse by Ignorance!
Its not news to anyone suffering from a condition like ME that medical professionals are severely lacking in up to date knowledge. Or sometimes, any knowledge. It is sad to me that along with this is often an apparent unwillingness to learn. Experience and ego seems to lend itself to a state of arrogance that means they no longer require new information – regardless how legitimate or scientific, and regardless of its source. So most of our doctors already know everything they need to know about medicine? There is nothing new to learn? And more to the point, there is most definitely nothing new to learn from a mere patient!
Personally I like the doctors who sit and use Google in front of their patients. We need more like this! It means that they know that there is information available they aren’t necessarily aware of. It means they are open to new possibilities. It means they are embracing modern methods and change. The none Google users seem to have had their ME education via some sort of medical Chinese Whispers, culminating in lots of assumptions, and incorrect beliefs.
That’s how it seems anyway.
I am so tired of taking my daughter to see her Paediatrician and being appraised and regarded with great suspicion. I am exhausted by the aftermath – my daughter breaking her heart with frustration at the complete waste of energy, at the lack of any sort of understanding or support, at the inability to listen, at the overwhelming sense of negativity, and at the fact this has been repeated for years now. I am angry and upset because each of these appointments steals a little piece of my daughter’s soul. As a child she needs to be given hope for the future – even if there isn’t any. When we meet the jaded self important uninformed Paediatricians we have the misfortune to be referred to, I wonder why any of them work in Paediatrics? What happened to these people?
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