Living With Mesothelioma-My Diary- A wonderful blog to back the Saatchi Bill. A call on Mp’s to help to Erradicate Asbestos from our lives


We were very shattered from the 2 trips to London and then I couldnt sleep. So much going around my head at the moment.

I did power nap Ray just conked right out bless him.

We got some frsh air and walked Louis at Tankerton and I did catch up on the washing and wrapped some Christmas presents.

Then last night an instant sore throat and runny nose has bought a virus. I do worry as I have to us hand rails and toilets and I see germs everywhere, you know they are there dont you as you travel where thousands have traveled before you.

Lots of warriors are traveling to Australia to the first Asbestos Safety Conference.

The Mesowarriors have come a long way together around the world and people work tirelessly for Mesothelioma the disease from Asbestos exposure.

We have the Medical  field and Scientists, MP.s and so much more who are dedicating their life to the disease and how to find that cure. You can never say no money is spent (maybe not enough but thats the same in any disease)

We Mesowarriors made up of Patients, but sadly more carers who have lost loved ones. We have really fought together and built a community up as we help each other through the social media. But also some of us have built up a Soppurt group from our own homes and receive emails and telephone calls where comfort and help newly diagnosed people who have that shock we all had when first diagnosed. So many dont realise it is their right for second opinions, or where a trial can be found and we point the way.

Im so proud of the warriors and the way we run ourselves and keep in touch— together. We do have fun with Secret Santa and social meet ups as well as our very serious roll of raising awareness and raising money for research. So many people working so hard. I didnt realise until I went to the Workshops and met so many wonderful people.

Here I would like to thank you to Mesothelioma Uk for all your hard work for us mesowarriors  http://www.mesothelioma.uk.com/

But where we do need help is in the Banning of Asbestos to get it out of our lives. We need a safer future for our children in their schools and the environment.

This is where these Conferences pave the way but I do believe we need Mps and the Industry more involved and invited to come to these conferences to really see just what Asbestos has done and will still do if we dont sort the problem out.

I have a voice (we have a voice) Lets use it.

Linda Reinstein has written a blog to celebrate the Conference

NEW BLOG: ADAO is honored to be an invited guest and present at the 1st International Asbestos Safety and Eradication Agency Safety and Management Conference in Australia. I will be sitting alongside many of the world’s top ban asbestos leaders at this event including Dr. Richard A. Lemen, Dr. Ken Takahashi, and Laurie Kazan-Allen. As one of the globe’s leaders in asbestos prevention, the Australian government serves as a model for other countries and I couldn’t be more pleased to be a part of the conference. Learn more here! http://bit.ly/10yw6H5

12/11/2014 – Tyabb – Victoria – Australia
Our latest flyers to promote Asbestos Awareness Week in Fed Square Melbourne, and the Bernie Banton Day celebrations – please distribute. – Rod Smith

 

A wonderful bog giving the scientists view of the Saatchi Bill

http://medicalinnovationbill.co.uk/why-the-research-community-needs-to-rethink/

Professor Andy Hall

By Prof Andy Hall ­–   Professor of Experimental Haematology, Newcastle University

There is a deep-rooted and complacent culture across substantial sections of the medical research community that all is rosy in the garden, that we scientists know what we’re doing and we don’t need any help from outsiders.

Men and women of science should, of course, welcome challenge. It is the grist to the scientific mill – to propose a thesis, and test it, to see if it stands up or falls down. This is what science is about.

But when it comes to medical research and cancer research in particular, there is a sensitivity to challenge that tends towards destructive defensiveness and at times a pig-headed aggression.

For those who want to find new treatments for cancers, this is a problem. Progress in many areas of cancer research has been painfully slow. This is not for want of trying, or of bad intentions, there really are “no villains in this story”. It is because cancers are incredibly hard to tackle.

Many researchers have focused on developing therapies that target individual gene mutations within a tumour. But tumours are often heterogeneous with multiple mutations that will never respond to just one drug.

This focus on the individual gene mutation is in part a legacy of the phenomenal – but one-off – success scientists and doctors had in finding a cure for Chronic Myeloid Leukaemia a form of cancer which is almost unique in having one driver mutation.

Many of us have become fixated on this  success and we have become accustomed to a method of research designed to repeat it.

But sadly it will probably never happen. Unfortunately this means the science community is stuck in a rut. A culture of group-think has taken over and it is reinforced by an endless round of conferences where we clever laboratory kings and queens speak only to each other swapping high-minded clever research papers – all based on the same research methodology.

We need to break out, we need to be challenged and we need to accept that too little progress has been made in finding new cures for cancers.

But the problem is fundamental. My generation, who are now leaders in our research labs, hold our beliefs so dear that any challenge feels like an assault on us as people. Our work and our beliefs are bound up with our identity.

When pushed, doctors and researchers can be genuinely unpleasant to those who challenge them  – I’ve seen this at first hand. But to repel contrary thinking is a derogation of the scientific principle.

One area that must be challenged is the singular and exclusive reliance on old-school and large randomized clinical trials.

Of course, they have their place. But they are slow, cumbersome, expensive and at times wholly inappropriate to the needs of science and, more importantly, patients.

We also need smaller, faster, lighter trials with fewer participants. Trials that are easier to set up, when – as in the case of rare diseases and diseases affecting children – which can be set up quickly, and, crucially, can be adapted quickly during the trial.

We must no longer only rely on trials designed to detect small changes, which need large numbers of patients to find only marginal.benefits.

We need more, smaller, cheaper trials where we look for big effects. And we must record and share the data of success and, very importantly, of the inevitable failures.

Patients deserve this. Particularly, patients with rare diseases where there are never enough patients to fill a large and traditional randomized controlled trial

We need to challenge ourselves and we need to change.

Fortunately new ideas are emerging which are provoking debate and new ways of thinking.

One is the  Medical Innovation Bill. It will encourage doctors to try novel treatments in a clinical environment.

It is not the only answer, though it will certainly help encourage innovation. It is just one solution to a raft of problems that must be resolved. But my interest and support for the Bill is based on this – it is a start.

It is new thinking. It is challenging, it has  inspired debate – as well as anger among some conservative colleagues – that is driving scientists to question themselves and their ways of working.

This has to be good for patients.

Rays Blog http://mesoandme.wordpress.com/2014/11/12/wednesday-106/

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s