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Dr Ian Gibson crowdfunding £15,000 for his book "Science, Politics and ME - Lifting the Lid on ME"

Sasha

Fine, thank you
Messages
17,863
Location
UK
Interesting...

http://campaign.justgiving.com/charity/investinm-e/science-politics-and-me

Invest in ME on JustGiving said:
ME patients are often not in a position to be heard and misconceptions/ignorance about the disease is compounded by a prejudiced denial of ME - as an ‘aberrant belief’ rather than a devastating physical disease.
Dr Gibson led an independent Inquiry into ME in 2006 which made a number of recommendations yet still the media and public seem unaware of the real suffering that continues due to vested interests that affect policies in healthcare, academia and the media.

The book will definitively explain the influence of politics on healthcare – and ultimately ME patients.

With the help of members in the European ME Alliance this book will promoted around the world.

This seems to have launched on 27 August and has already raised £230.

More info here, including:

IiME said:
[...] Dr Gibson feels it is necessary to look at the effects that politics and the actions of some have influenced the way ME has been, and continues to be the subject of misrepresentation, inappropriate media reporting, ineffective research funding and a pervading prejudice that needs to be exposed.


The book will look at where we have come since that Inquiry and why.

The book will need legal scrutiny before publication

Dr Gibson had started interviews with knowledgeable individuals at this year’s IiME London conference and established new contacts.

Visits are possible to the USA and countries within Europe (Norway, Sweden, Belgium, Denmark etc.) where local interviews can be carried out.

These may be extended to other countries.

Dr Gibson is familiar with the political events in the UK and the setting up the Norwich centre grouping.

It is important to understand the politics of ME and how the ‘establishment’ in most countries reacts to calls for support for financial & otherwise.

IiME is a member of the European ME Alliance (EMEA) and members of EMEA will be helping with this book and promoting it.


Dr Gibson will be visiting researchers, clinicians, advocates, patients, carers and others to produce an update and an analysis of ME - the Science and Politics behind the way ME is treated.

In order to fund this a JustGiving page has been set up and donations are invited to help pay for the cost of writing this book.

The target is £15,000 and this will cover travel expenses £5000 and research/secretarial support £10.000.

The JustGiving page for donations is - http://campaign.justgiving.com/charity/investinm-e/science-politics-and-me

Work on the book begins now and this page will be updated as the project develops.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I appreciate what Dr Gibson is attempting to do (if I understand his goals correctly), but I don't see how interviewing patients and researchers will tell us much we don't already know.

If I were writing this book I'd use the money to hire a real investigator. The stench of corruption permeates everything surrounding our illness and uncovering the source of the odor will require a good old fashioned muckraker. I hope that is the story Dr Gibson will write.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I appreciate what Dr Gibson is attempting to do (if I understand his goals correctly), but I don't see how interviewing patients and researchers will tell us much we don't already know.

I hope we're not his main audience! We need to get our story out. And having snippets here and there on websites doesn't make for a very convincing story, even to a sympathetic audience - it needs to be properly presented.

jmells said:
If I were writing this book I'd use the money to hire a real investigator. The stench of corruption permeates everything surrounding our illness and uncovering the source of the odor will require a good old fashioned muckraker. I hope that is the story Dr Gibson will write.

I suspect an outsider would burn through that £15k just getting up to speed.

Anyway, good luck to Dr Gibson! It will be very interesting to see what he comes up with.
 
Messages
5,238
Location
Sofa, UK
I think this is guaranteed to be a insightful, intelligent, informative and witty book, for both patients and professionals, based on what is evident of Dr Gibson from his superb chairing of the Invest in ME conferences. I'll definitely want a copy.
 

Jo Best

Senior Member
Messages
1,032
I thought of this book in the light of the parliamentary questions asked this month by Kelvin Hopkins -
https://www.facebook.com/groups/5804522506/permalink/10154153112497507/
(original source - http://www.parliament.uk/.../written-questions-answers/)

Invest in ME Research posted a month ago on Facebook -
We had a good meeting with Dr Ian Gibson this week and still hope to have the book published as soon as we can before Christmas http://www.investinme.org/IIME-Newslet-1508-01.htm
 

Jo Best

Senior Member
Messages
1,032
Thought of this too, radio interview from Dec. 2011. I liked his phrase, "Cut the cackle" - -
 

Jo Best

Senior Member
Messages
1,032
That page is from July 2015 - just wondering if there's a more recent update, @Jo Best?
Hi Sasha, I see it includes the 2016 updates from the page on their 'old' website, but the last I heard was their post in IiME Facebook group last month that they still hoped to have the book published before Christmas.