IiMER International Conference Week London 2019

Jesper Mehlson

Code:

https://youtu.be/pyMTYzgN78I

https://www.youtube.com/watch?v=pyMTYzgN78I

 

Simon Carding

Code:

https://youtu.be/kz8DGxoBEHw

https://www.youtube.com/watch?v=kz8DGxoBEHw

 

Oystein Fluge

Code:

https://youtu.be/XRdAzk5zu1Q

https://www.youtube.com/watch?v=XRdAzk5zu1Q

 

Karl Johan Tronstadt

Code:

https://youtu.be/Vk0vTFiCfDs

https://www.youtube.com/watch?v=Vk0vTFiCfDs

 

Nancy Klimas

Code:

https://youtu.be/VOpLORv4GgE

https://www.youtube.com/watch?v=VOpLORv4GgE

 

Ron Tompkins

Code:

https://youtu.be/EKvfIxAT8tw

https://www.youtube.com/watch?v=EKvfIxAT8tw

 

Michael VanElzakker

Code:

https://youtu.be/4ZBuD11ukCA

https://www.youtube.com/watch?v=4ZBuD11ukCA

 

Ron Davis

Code:

https://youtu.be/CGWcA1xYnyY

https://www.youtube.com/watch?v=CGWcA1xYnyY

 

and finally, the plenary session.

Code:

https://youtu.be/j2UoegoyKzc

https://www.youtube.com/watch?v=j2UoegoyKzc

 

I thought Ian Gibson was very interesting, even though he waffled a lot. I would really encourage people to watch this video and think about what he says.

The whole situation and the last 30 years history in the UK regarding ME/CFS can be summed up in one word. POLITICS. This is Ian's specialty having been an MP.

He mentions that there are a group of people stopping progress in the disease and even when the disease picture is much clearer with hard evidence, we will still have a big fight on our hands to make changes.

He also really wants to find out who was behind preventing the implementation of the parliamentary recommendations for 11MM pounds research that he spearheaded and believes those people can be found eventually with freedom of information requests......

Also, I didn't know that he was key in persuading the Norwich University to create a group to investigate ME/CFS - this led to Simon Cardings group I believe.

 

I took a look at the financials for Invest in ME and Invest in ME Research. I don't know why there are two charities....

Anyway, for the period ending 31 Sept 2019 they reported (should be 30th as there is no 31st in Sept) the cost of "Meetings,conferences and associated DVDs" as 114,146 pounds. I never realised how expensive holding these conferences was, and really appreciate the charity facilitating the two annual conferences, one for patients, and one for researchers.

Note, while the report states spending start date was 10 Jan 2018, I think this is a mistake as the previous 2018 report ended on 30 Sept 2018 and the figure of $91.537 for the same expenditure category matches that in the 2019 report value for previous year.

 

I don't have any knowledge of IiME, but looking at the public documents, IiME is a charitable trust established in 2006, and IiMER is a Charitable Incorporated Organisation (CIO) with identical charitable objectives established in 2013, the year that CIOs were introduced.

This is a fairly common situation. Since they were created, CIOs have begun to be the default structure for medium-sized charities. CIOs provide trustees with limited liability without the additional regulatory burdens of being a company, protecting trustees from individual liability for breach of contract, damages, employee compensation etc. Looking at the IiME published returns, the reserves of the trust (IiME) have been declining, while the reserves of the CIO (IiMER) have increased. Focusing on the CIO format for the long term would be a sensible approach for any charity.