May 2019 - Awareness Week including Millions Missing

That doesn't seem right. About 90% of ME funding was wasted on psychosocial fluff, so it doesn't count since they are studying psychogenic idiopathic chronic fatigue. The scale is way worse than that.

 

Agree it’s not helpful to use that time frame and include possibly PACE, FINE, GETSET and Magenta even research. £4/ patient per year if 200 000 patients figure are used is £800 000 a year for 9 years ... i wish are the words I’d use for that figure when it comes to biomedical research.

 

Pictures from Berlin, Munich and Halle in Germany (more are being uploaded): https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany


A few from Berlin

The big red image says: "Imagine you life is gone. But you're still here.":




Stories from severe pwME in the "black box":




Group pic:

 

This is amazing! I shared with the other volunteers and everyone though this is funny. Thanks for educating the German public, please consider team Gent from now on an honorary member of #MillionsMissing Germany.

 

one of my favourite pics



where is everybody? surfing? or in the pub having a pastie?

 

An article in Unilad, of all places

https://www.unilad.co.uk/featured/c...ing-truth-of-condition-its-not-just-laziness/

Facebook

Code:

https://www.facebook.com/uniladmag/posts/6213992505290423

 

https://www.meaction.net/2019/05/14/we-did-it-this-is-what-the-millionsmissing-look-like/

 

That was a fair article. Although it shows we are still firmly on square zero. Could have been written nearly as is 30 years ago, just changing a few names and contemporaneous bits here and there.

But this article contained more actual journalism than the entire "our victims are criticizing us, woe is us" SMC media blitz, so kudos on out-scicomming the "Science" Media Center.

 

Code:

https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/videos/335496877112807/

 

Code:

https://www.facebook.com/millionsmissingsouthampton/videos/537427903331298/

 

M.E. awareness month - what we've achieved so far and what's next
https://www.actionforme.org.uk/news/m.e.-awareness-month-what-weve-achieved-so-far-and-whats-next/

 

This is a really superb and impressive video from Sheffield.

 

@Andy has kindly already posted about this action. The fan club of Berlin football team Hertha BSC has shown its support for pwME in the Olympiastadion Berlin. I'm posting about it again, as they've now published an article in English and asked me to share.

The English statement can be found here (below the German version): http://www.gruppa-sued.de/wordpress/?p=2282

Edit: Please also consider leaving a comment (no log-in or mail/name necessary and your native language is fine), they'd love to hear from pwME worldwide.

 

Were any U.K. “protests” visibly demanding research funds from our state funders? I’ve watched a few videos where the “general picture” or life stories etc are the focus to raise awareness, I’m just surprised that protests aren’t more part of this than raising awareness.
....

Moderator note: This post in full and the subsequent discussion have been moved to a new thread:
UK: Should ME awareness week and advocacy focus more on the need for research funding?

 

Louise Haigh, MP for Sheffield Heeley

https://www.louisehaigh.org.uk/news/2019/05/21/supporting-people-with-me/

 

This is great.

Is there a way to reach her, preferably a constituent or a reliable expert, to correct the £4 per patient on research? The real number is a few pennies, and I think it's been zero for a while, when you exclude the funding wasted on psychosocial fluff. It doesn't count, it just doesn't. It has nothing to do with medicine at all and doesn't qualify as serious research under any stretch of the definition.

Because it only further highlights the gravity of the failure, that even a number that is obviously insultingly low is actually about 10x lower when you remove the useless junk it was wasted on. And those numbers can't even be confirmed because there never is a straight answer.

I think that the NIH funding of the LSTM is the only actual research funding in the UK in recent years and it's particularly insulting that it had to come from a foreign institution.

 

Summary in English of a MillionsMissing event in Stavanger, Norway.
Two great talks were given by patient Kristine Ruud Berdal and professor in medicine Ola Didrik Saugstad.

Included are also video greetings from Prime Minister Erna Solberg, Jennifer Brea, Olav Mella/Øystein Fluge and Ron Davis.

 

MillionsMissingStavanger did a fundraising for Fluge/Mella and their team as part of the event 12th of May.
Today 157 317 NOK (18 497 USD, 14 534 GBP, 16 242 EUR) got transferred to the researchers.