May 2019 - Awareness Week including Millions Missing

rvallee said:
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.
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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.":

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Stories from severe pwME in the "black box":

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Group pic:

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Michiel Tack said:
Funny story: there were a lot of tourists in Gent and one of our Millions Missing volunteers managed to get the city guides to explain what was going on. So a little later a city guide was explaining to German tourists: "Auch in Berlin gibt er ein Millions Missing Manifestation..." Thought that was pretty cool.
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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. :)
 
An article in Unilad, of all places
Chronic Fatigue Syndrome Sufferer Reveals Crippling Truth Of Condition, It’s Not ‘Just Laziness’

There are few debilitating conditions which are treated with the same flippancy than Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS).

Sneered about in comedy routines, and regularly dismissed as ‘just laziness’, the profound ways in which chronic fatigue impacts a person’s life are all too often misunderstood.

It’s still common to hear a person jokingly remark they ‘must have’ chronic fatigue syndrome if they are feeling a bit tired, perfectly illustrating the widespread underestimation of this cruel and life altering condition.
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https://www.unilad.co.uk/featured/c...ing-truth-of-condition-its-not-just-laziness/

Facebook
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https://www.facebook.com/uniladmag/posts/6213992505290423
 
It has been a big week, with over 100 public and virtual events happening across the world!

We are honored and grateful to be in this fight for health equality with you. We showed the world that we are the #MillionsMissing – that we will fight for the recognition, treatment, and compassion we deserve for people with myalgic encephalomyelitis (ME)!

You pulled off some of the biggest and most creative demonstrations in #MillionsMissing history! This is email is long (and the list of events reporting back is still growing). Thank you from the bottom of our hearts. Each and every one of you has our love and support. We will continue to fight on.
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https://www.meaction.net/2019/05/14/we-did-it-this-is-what-the-millionsmissing-look-like/
 
Andy said:
An article in Unilad, of all places

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

Facebook
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https://www.facebook.com/uniladmag/posts/6213992505290423
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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.
 
Hundreds gather in Sheffield to demand research funding for Myalgic Encephalomyelitis, as part of the global #MillionsMissing campaign. 200 pairs of shoes carried the messages of local people with ME.

Speakers included Louise Haigh MP, Clive Betts MP and Paul Blomfield MP, journalist and person with ME Laura Elliot, local children's author Berlie Doherty, mother to a severely ill daughter with ME Diana Shapiro and chair of our charity Carolyn Leary.

Can You Hear ME, written by Alex Faye - one of the #MillionsMissing.
Sung by Harriet Rose Grant.
Performance by Purple Cats Community Choir and red wings by Sophia Wheatley - Bella Tricks.
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https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/videos/335496877112807/

 
@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. :)

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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.
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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?
 
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Louise Haigh, MP for Sheffield Heeley
Recently, I was proud to speak at a rally at Barkers Pool in support of the global #MillionsMissing campaign and in solidarity with those living with Myalgic Encephalomyelitis (ME).
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It’s clear from all of this that we need to gain a better understanding of ME but, from 2006 to 2015, just £4 per patient per year was spent on research into the condition. This paltry level of funding simply fails to reflect its seriousness and its severity.

After decades of neglect, the #MillionsMissing campaign is calling on the Government to properly invest in research into ME and update medical training on the condition.
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I fully support this campaign and, along with fellow Sheffield MPs, Paul Blomfield and Clive Betts, I’ve raised these issues in Parliament. We’ve demanded a review of medical guidance on ME, for an end to the use of CBT and GET treatments for ME patients, and for urgent Government investment in ME research.
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https://www.louisehaigh.org.uk/news/2019/05/21/supporting-people-with-me/
 
Andy said:
Louise Haigh, MP for Sheffield Heeley

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

 
Kalliope said:
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.

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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.
 
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