Janet Dafoe's Birthday Donation Campaign!

[Laelia]

Don't want to derail Janet's birthday, but some of our signatures are linking to the old OMF page, which my FireFox browser is deeming insecure. I used the link that @Ben Howell used at the beginning of this thread to update mine.
https://www.omf.ngo/donate-to-the-end-mecfs-project/

Well spotted Comet! I've just updated the link in my signature. Hopefully every one else will do the same.

 

[Janet Dafoe]

Done. Happy birthday from Germany or herzlichen Glückwunsch zum Geburtstag @Janet Dafoe (Rose49)! Thank you for the gift of hope you give to all of us worldwide.

Thank you!
A young man writer from Germany just came and interviewed Ron at the lab for 2 hours and then came to our home for the evening to interview us some more. it's for a magazine in Germany; I can't remember the name. I realized that I hadn't noticed many people from Germany on the forum or twitter and I don't know much about the situation for PWME in Germany. What is it like there? Is it as bad as in the UK and other European countries? He seemed to think that it was better. I'd be interested to learn about ME/CFS in your country!

 

[Sushi]

I realized that I hadn't noticed many people from Germany on the forum or twitter and I don't know much about the situation for PWME in Germany. What is it like there?

@TiredSam

 

[TiredSam]

@Joh is very well informed about Germany, and may have a different perspective to me.

In my experience the situation in Germany is absolutely horrendous. This would be the consensus at the self-help group I go to every 2 months, where some of the participants have been forced to undergo harmful treatment for depression before being considered for a disability pension. The insurance companies have a saying here - "rehabilitation before pension" - which means before you are granted a pension, you have to have tried rehab. As most CFS patients can't work any more, they have to go along with this if they want to claim a disability pension. As CFS is officially classified as a mental health issue, the rehab you are forced to go to is for depression, where the treatment includes an exercise regime because that helps with depression, right? I know people who's remaining health has been ruined by this.

The Charite in Berlin is a beacon of light where their immunology dept researches CFS (nobody says ME here) and will give a diagnosis. They have just stopped accepting patients from outside Berlin because they are so overwhelmed, so I just got there in time before they closed the doors. I wouldn't know where else to go with CFS in Germany, there are some other clinics that say they treat / diagnose it, but I have heard various reports from people who have been and they sound fairly useless - eg there's one clinic where they put the CFS clinic on the 3rd floor in a building with no lifts so by the time the patients have walked down the stairs for their medical appointments they are exhausted.

There are also various private doctors who will charge you thousands to give you vitamin b12 injections and treat you like a guinea pig. They are what pass in Germany for "experts". I avoid them.

I personally have mild ME, so I've been to the Charite for my diagnosis and found a doctor who I never go to unless I want something (last thing was a referral for a tilt-table test) - even he tried to trick me into going to the psychosomatic clinic in my town, but now since I've been to Berlin he just does what I ask. So I avoid any involvement with the health system and tell few people about my illness. If I ever have to go to hospital my wife is under strict instructions not to mention CFS. I manage it myself, rant on PR, and wait hopefully for progress in the USA or Norway so that maybe one day I can come out of hiding and have my life back.

@Janet Dafoe (Rose49)

 

[TiredSam]

Here is a thread I started about my trip to the Charite in Berlin:

http://forums.phoenixrising.me/index.php?threads/my-trip-to-the-charite-in-berlin.44474/

It links to a blog I wrote about it, blogposts listed here:

http://forums.phoenixrising.me/inde...he-charite-in-berlin.44474/page-4#post-803326

Which basically sums up my experience in Germany. The blog kind of fizzled out in the end, but there wasn’t much more to write, I tried a few supplements and they didn’t work.

 

[TiredSam]

Just to completely go off-topic for a moment - today I solved a puzzle that has been bothering me for nearly a year.

In my first blog entry from May 2016 (which I have just been re-reading - forgive an old man his reminiscences ... ) I describe a train journey, walking along the platform with my wife carrying all the luggage. At the time I wondered whether I would get any disapproving looks from fellow passengers, and was pleased to find that I didn't, which at the time I put down to Germans being so polite.

Today, nearly a year later, we have just taken another train journey (my first since May last year) and I have worked out the real reason why no-one gives me disapproving looks for sauntering along while my wife carries all the luggage (3 bags today).

It's because if I really was an arrogant male-chauvanist pig of a husband, I would be walking in front while she struggles along behind me with all the bags. What actually happens is that she walks in front with all the bags while I struggle along behind. Germans, being logical and clever, have obviously noticed this and decided to give me a break.

 

[veganmua]

I tried again on Facebook, it looks like the PayPal option has been removed. I put all my card info in, then it wouldn't go through as it wouldn't accept my UK postcode.

 

[Marc_NL]

I tried again on Facebook, it looks like the PayPal option has been removed. I put all my card info in, then it wouldn't go through as it wouldn't accept my UK postcode.

I just used this link:
https://www.omf.ngo/donate-to-the-end-mecfs-project/

And clicked on the Paypal button under the photo.
This brings you directly to the Paypal login without the need to fill in all your details.
Here you also have the option to add a tribute message.

 

[Binkie4]

Happy Birthday Janet Dafoe@Rose49.

Just donated. A little early but heavy pem, so better early than never!

Thank you for all that you do. Hope that Whitney's line is getting sorted out and that you are getting some rest.

 

[Jennifer J]

Hi guys,

It is our dear @Janet Dafoe (Rose49) birthday on May 2nd and in celebration is running a fundraiser for OMF to raise money for research!

View attachment 20636

As you all know by now Janet is an absolutely integral part of the forum, and her presence is appreciated by all who come to contact with her! She does so, so much behind the scenes aswell as caring for Whitney, so it would be nice to give something back. So lets raise some money for research in honour and appreciation of this incredible lady!

The donation campaign is on facebook, here is the link:

https://www.facebook.com/donate/10155187837373904/

And if Facebook is not available to you, you can donate via OMF's website here:

https://www.omf.ngo/donate-to-the-end-mecfs-project/

And select 'for the birthday of' or 'in celebration of' Janet etc!

Anyway, I thought you guys would like to be aware!

Thanks as always,


B

Bump

 

[Gingergrrl]

Am sorry I missed this and a very happy belated birthday to @Janet Dafoe (Rose49) .

Am unable to do a donation today but my family and I do ongoing donations and hope to do next one very soon.

Very interesting what you shared @TiredSam re: the situation in Germany and I follow Dr. Schiebenbogen's research and Cell Trend testing w/great interest. And I of course followed your great blog!

 

[trishrhymes]

Donated. Happy Birthday, @Janet Dafoe (Rose49).

 

[Ritto]

Done

HAPPY HAPPY BIRTHDAY @Janet Dafoe (Rose49)

 

[Ben H]

Today is the day....HAPPY BIRTHDAY JANET!

Cake for all.

B

 

[CFS_for_19_years]

Janet, I hope you will have a wonderful birthday celebration. We want to see cake!

Love and blessings to everyone.

$100 donated.

 

[daisybell]

Happy Birthday @Janet Dafoe (Rose49)

 

[trishrhymes]

Happy Birthday @Janet Dafoe (Rose49) . I'm not sure whether my donation yesterday will count towards the birthday total - I only noticed afterwards that I was supposed to click on a specific choice, but I did put it in my message. Not that it matters, it all goes in the same pot.

Thank you for all you and Ron do for us, and best wishes to all your family.

 

[Laurie P]

@Janet Dafoe (Rose49)

Happy Birthday Janet! Thank you for all that you and your family do for us. You are all a gift to our community.

 

[Cohen2]

Donated. Happy Birthday @Janet Dafoe (Rose49)! Have a fantastic day.

 

[Hutan]

Donated. Happy Birthday @Janet Dafoe (Rose49). May there be much ice-cream.