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May 12 demonstration in Mariestad, Sweden

mango

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There was a demonstration in Mariestad in Sweden today :) A very successful one!

17 members from RME (Riksföreningen för ME-patienter, the Swedish ME Association) took part, and it lasted about 4.5(!) hours. They handed out about 100 leaflets, and many great conversations were had :)

It was the first time for something like this, and I'm massively impressed by how well they managed to organise things in such a super short time, get so many people to join, and even produce very professional looking flyers etc. Great work, well done! :thumbsup: :hug:

There's an article in the paper about this too, please see below.

They are all very happy with how well it went :)











 
Last edited:

mango

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Mariestads-Tidningen: Uppmärksammar okänd sjukdom
http://mariestadstidningen.se/mariestad/2016/05/12/uppmarksammar-okand-sjukdom

Google translated version:

FIGHTERS. "Efforts are needed in research, this is not something that can be brushed aside," says Elenor Bengtsson.

Raising awareness of unknown disease

MARIESTAD: Demonstration on International ME-day

All shades of blue swept across the square in Mariestad during Thursday afternoon. It is the international color for the diagnosis of ME and that had Skaraborg's members of the association taken advantage of.
- ME is an invisible disease, but today we are visible, says Elenor Bengtsson.

She herself fell ill with ME in 2000. The diagnosis didn't come until nine years later. Now Elenor Bengtsson is fighting both with their her disease and to spread information about what ME is. She does this together with Riksföreningen för ME-patienter, RME.

- People don't know what ME is despite it being twice as common as MS, she says.

Difficult to diagnose
ME is an invisible disease that is neither seen nor heard. ME is a debilitating disease with symptoms including fatigue, flu-like symptoms, muscle weakness and sensitivity to impressions. Approximately 40,000 people are affected in Sweden, and considerably more than half remain undiagnosed.

- Primary care does not recognize ME, and it is often linked to burnout.

- You can not cope with even the most basic daily activities such as showering. You need to find a balance of activity to avoid deterioration since deterioration can become permanent.

Scientists know very little about the causes of ME, but they have seen that activities eg in immune or endocrine systems may have an impact.

Spreading knowledge
For the first time, a rally in Mariestad is led with people from all over the county. Elenor believes that knowledge must increase in order for ME patients to receive the understanding and support they need.

- We hope that people will understand that ME needs attention and also get to know what the health care situation is like, and for sufferers how to deal with the diagnosis.
(So sorry about the crap translation... I'll try to make a proper one later, if i find some spare energy.)
 

Justin30

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There was a demonstration in Mariestad in Sweden today :) A very successful one!

17 members from RME (Riksföreningen för ME-patienter, the Swedish ME Association) took part, and it lasted about 4.5(!) hours. They handed out about 100 leaflets, and many great conversations were had :)
Do they plan to do this again on May 25 as well to support the Millions Missing Campaign?

Great to see a good turn out.
 

mango

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Do they plan to do this again on May 25 as well to support the Millions Missing Campaign?
I don't know, but I don't think that's very likely. Some of these people are bedridden and/or quite ill, so it will probably take them quite a while to recover after this...
 

Justin30

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I don't know, but I don't think that's very likely. Some of these people are bedridden and/or quite ill, so it will probably take them quite a while to recover after this...
I agree...i must have been very taxing...and thanks to them for standing up to this disease...