Why so little ME/CFS research from France and Germany?

[Biarritz13]

Sounds good.

What I could do is set up a French version of the roadmap on another page on my website, and include within that page the rough Google translation to French. Like the following page that I just quickly set up:

It would be great if you could do this, because as a starting point for guidance, the roadmap might be quite helpful to those in France with ME/CFS.

Hi Hip! I can do this. I'll start as soon as you give me access.

 

[Hip]

Hi Hip! I can do this. I'll start as soon as you give me access.

Great! You might want to start a conversation with me (click on my username "Hip" and select "Start a conversation") in order to send me your Google account email address. I will need this to give you editing access. If you want to protect your privacy, you can consider setting up another Google account that does not use your actual name.


If we had volunteers to translate a German and say Spanish version of the roadmap, that would be great too.

 

[Biarritz13]

Great! You might want to start a conversation with me (click on my username "Hip" and select "Start a conversation") in order to send me your Google account email address. I will need this to give you editing access. If you want to protect your privacy, you can consider setting up another Google account that does not use your actual name.


If we had volunteers to translate a German and say Spanish version of the roadmap, that would be great too.

I pm you then!

 

[Hip]

The French version of the ME/CFS roadmap is now up and running:

https://sites.google.com/site/sfcfeuillederoute/

 

[Hip]

@DanME
If you or any other of the German speaking ME/CFS patients on this forum would like to help translate a German ME/CFS roadmap, I can easily setup a German version of the roadmap.

As with the French version, I will use Google translate to create a rough translation of the roadmap into German, and then I can give you editing access to the German roadmap website, so that you can in you own time fix the translation errors.

My roadmap website is hosted on Google Sites, and editing Google Sites webpages is quite easy: it works just like a normal word processor (once you have editing access, you just press a button at the top of the webpage, and you can then edit the page there and then).


I think offering a list of non-psychological drug and supplement treatments for ME/CFS can help serve a useful political purpose: it helps fight the erroneous view that ME/CFS is caused by psychological factors.

 

[CFS_for_19_years]

Old thread, but reading through the comments I was wondering if French-speaking or German-speaking members might be interested in having their own sub-forum in their own native language?

 

[Biarritz13]

Personally I am not but I know a lot of patients would be interested since the platform used for the forum is really great.

 

[CFS_for_19_years]

Personally I am not but I know a lot of patients would be interested since the platform used for the forum is really great.

Started a new thread about sub-forums here:
http://forums.phoenixrising.me/inde...for-non-english-languages-french-german.47176

 

[*GG*]

Old thread, but reading through the comments I was wondering if French-speaking or German-speaking members might be interested in having their own sub-forum in their own native language?

Speaking French is a different animal for me, compared to writing it. Lots more work for my Brain to write French, even when Not sick. Although with the translators online, that makes it easier, but still more work!

GG

 

[frederic83]

Old thread, but reading through the comments I was wondering if French-speaking or German-speaking members might be interested in having their own sub-forum in their own native language?

Personally I am not but I know a lot of patients would be interested since the platform used for the forum is really great.

I hate Facebook, I can't read or write the comments properly, it takes time to load. Finding an old post is not enjoyable, the search engine is bad. Moreover, some people can't read English but would like to participate in the forum.
It requires moderation work, though.

 

[CFS_for_19_years]

Please post comments about starting new non-English sub-forums here:
http://forums.phoenixrising.me/inde...for-non-english-languages-french-german.47176

Thank you
Merci
Gracias

 

[Mike Harley]

Hi

I'm interviewing Francoise Becavin from French ME Association/Group ASFC this week and will post her thoughts here as part of my work to raise awareness around the EU.

Mike
www.mikeseumarathons.eu

 

[Hip]

I'm interviewing Francoise Becavin from French ME Association/Group ASFC this week and will post her thoughts here as part of my work to raise awareness around the EU.

Great, look forward to hearing what she says.

 

[BurnA]

Hi

I'm interviewing Francoise Becavin from French ME Association/Group ASFC this week and will post her thoughts here as part of my work to raise awareness around the EU.

Mike
www.mikeseumarathons.eu

Mike,
You are a fantastic ambassador and advocate - really appreciate all your running and more!
Have you considered starting a thread where you can update everyone on your progess and schedule etc. I for one would be very interested. Also, I imagine there are people here from most countries you plan to go to, so it could be a good way to generate support.

All the best.

 

[Mike Harley]

Ah thanks

Yep happy to do that if you think people would like to read it.

 

[BurnA]

Ah thanks

Yep happy to do that if you think people would like to read it.

Absolutely Mike.
I would say there are plenty of people here who might not be familiar with what you are doing so I'm sure people would like to know all about it and if they can help spread the word even better.

 

[Hip]

There is an article about Mike's fundraising efforts on MEpedia. An extract:

Mike states his motivation for his unique fundraising effort: "Over 250,000 people in the UK suffer with the ME and that includes 25,000 children as well as one of my good friends who has suffered for almost 9 years with the illness. Watching him drift from year to year without improvement is extremely hard to watch, I want to try to do something to stop this. He's not depressed or making it up, he's one of the most popular and positive people I know. He's ill."

There are also photos and updates of Mike's marathons here: michael harley is fundraising for IiME

Great stuff Mike, really appreciate what you are doing.

 

[Mike Harley]

Cheers all! Took your advice and I've posted over at http://forums.phoenixrising.me/index.php?threads/mikes-eu-marathons-for-invest-in-me.47358/

Thanks for your support.

 

[daisybell]

Cheers all! Took your advice and I've posted over at http://forums.phoenixrising.me/index.php?threads/mikes-eu-marathons-for-invest-in-me.47358/

Thanks for your support.

I've also linked to your fundraising page on the thread about donations http://forums.phoenixrising.me/index.php?threads/donations-to-me-research.46146/

 

[Mike Harley]

Hi all

Here's my interview with Marie from ASFC (Association française du Syndrome de Fatigue Chronique) about what it's like for ME patients in France.

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

I'll be running Toulouse Marathon there on Sunday (no 9 of 28) and hoping to meet someone from ASFC.

Also just been interviewed by a local Toulouse paper (will publish when live), hopefully can make a small awareness ripple for people with ME there.

The two French ME facebook support groups I'm aware of have posted some nice messages and donated to Invest In ME this week for their biomedical projects.

Feel free to share/circulate

Mike