ME in Poland

[Mike Harley]

Hi all

Me again!

Stockholm Marathon went well, we're up to £3671 so far on the challenge for Invest In ME/biomedical research projects!

Next up I'm off to run the Solidarnosci Marathon in Gdansk, Poland on August 15th.

As ever as part of the challenge I aim to raise awareness for ME patients in each of the 28 EU countries I visit.

I've been talking to Mira from Warsaw about what the situation is like in Poland (link below if you fancy a look)

http://www.mikeseumarathons.eu/poland.html

Although she is very ill, we're both keen to see if we can bring some Polish patients together and form a support group. There doesn't seem to be any out there that we can find and there's likely to be over 150,000 people with nobody to talk to or real hope.

We've written off to a couple of journalists who have helped Mira before (she was on TV talking about ME a few years back), so hopefully we can do something productive there too.

Anyway, if you have any leads to any organisations or ME patients in Poland I'd very much like to hear from you.

Thanks

Mike Harley

www.mikeseumarathons.eu
www.facebook.com/mikeseumarathons
www.justgiving.com/mikeseumarathons

 

[daisybell]

Keep up the good work @Mike Harley - I really admire what you're doing.
The situation in Poland sounds dire. I do hope that you can raise awareness and educate some medical professionals.
I used to love running when I was well - although I never did more than a 1/2 marathon!

 

[taniaaust1]

best luck with getting a polish support group together...that's probably just as hard as fundraising for this

 

[necessary8]

Hi, I'm a ME patient from Poland. A polish support group would be amazing! How do I get in touch with you guys? Can we get a facebook group going or something?

 

[Mike Harley]

Hi, I'm a ME patient from Poland. A polish support group would be amazing! How do I get in touch with you guys? Can we get a facebook group going or something?

Hi!

Thanks so much for getting in touch.

Yep that's our aim, can you email me directly (kid_a18@hotmail.com) and I'll intro you to the other 2 people I'm in contact with

Thanks

 

[Mike Harley]

So I've set up a facebook group for Polish ME patients. Sadly the Polish ME patients I'm in touch with are too ill to admin but hopefully more people will follow. I know it'll take a while but it's a start.

https://www.facebook.com/groups/258771904515221/

From my end, I'll take a backseat when it's up and running, just posting ME news/developments from the international perspective.

If anyone would like to join and/or admin then you're very welcome

 

[Mike Harley]

Hi

We're actively trying to grow our Polish ME Support Group (currently 53 members) and have produced an information flyer (attached) which we hope will reach more patients.

The idea is that any Polish speakers can print off and distribute them in doctors waiting rooms and other public places.

We're keen to get more interaction in the group so patients can support each other and share knowledge. There's already been some great info posts in there about international biomedical research news which has been really appreciated by many. It contains a list of symptoms of ME and points them towards our group.

The Goal;

More followers; community formed; active charity/lobby group formed; awareness & attitude changes; international partnerships; research; cures.

Please all share if you know of any Polish speaking patients, families of patients, carers, doctors, govt officials or others.

https://www.facebook.com/groups/258771904515221/

Thanks

Mike