letters of appreciation to CFSAC members

[leelaplay]

I sent a letter of appreciation to the CFSAC members. Wanda Jones mentioned that all correspondence is read. I have the sense that the more attention an issue receives, the more of a reaction happens further up the chain, more action, more funding.

My letter is very basic, but I got it in.

Dear CFSAC Members

While I am a Canadian, I have ME/CFS, and what happens regarding this disease affects the rest of the world. Therefore, I watched as much of the webcast of the Oct 29, 30 2009 meeting as I could with extreme personal interest.

I would like to express my thanks to all the committee members for their participation on this committee. You are all heroes to me. Your expertise, hard work, passion and compassion, and often personal sacrifice astound me. In the rather Kafkaesque state of the science of ME/CFS in the US right now, the ME/CFS community is incredibly fortunate to have people of your caliber working for us in all of the ways you do.

Sincerely,

xxxx

xxxxx

 

[oerganix]

I emailed Wanda Jones, thanking her for her efforts to get the CFSAC meeting webcast. I told her this is the first time in 27 years of suffering from ME/CFS that I had the impression that my government gave a damn about my suffering with this illness. This is the email she returned to me:
"Thank you, Lilly. I'm hopeful I can shake some things loose; that's my history, and I don't plan to give up. You and many like you who take time to email keep me energized. Take care. Wanda"

So, keep it up, everybody. Let them know we were and ARE watching.

 

[greybeh]

I emailed Wanda earlier today and got a very personal response within an hour. She cares about what she's doing and wants to help patients... truly.

 

[leelaplay]

greybeh and oerganix

that's so great that she responded back to you both.

thanks for writing. I'm feeling a bit slighted here - I wrote a different letter to her yesterday and haven't gotten anything back

I try to write when I can. My belief is that government is responsive to public interest - the more letters, emails, webcast clicks etc received, the greater chance that something will happen further up the chain

To: Wanda Jones,

Hello,

I am writing a quick note of appreciation to you and your "gigantic" staff. I have ME/CFS and am exhausted from watching the 2 day meeting. But so thankful that I was able to watch it due to your efforts to get it webcast. And for soon getting it, and the written submissions, minutes and transcripts posted so that I can access the parts I was too tired to process.

So thank you for that. Also for ensuring that the rules were followed and running such an efficient, on time meeting - not an easy matter I know!

And finally for your closing comments. It was very encouraging to hear your comment that "the call to service is taken very seriously by many of us." Your passion and compassion were evident to me.

The ME/CFS community and the CFSAC are fortunate to have a civil servant who cares, who is knowledgeable, and who works hard behind the scenes to help navigate a path through the maze of government so that the CFSAC recommendations start to get acted upon.

Sincerely,

xxx

 

[Dreambirdie]

I wrote one too. We'll see if I get a response.

 

[Kati]

I wrote one too. We'll see if I get a response.

Does anybody have the e-mail address, I'd send a message as well- I think that if we all send a brief note we will warm her heart even more, and won't be forgotten.

 

[leelaplay]

hi Kati,

THanks. I'd forgotten to include the link.

Here's the CFSAC email cfsac@hhs.gov
ETA but the personal one seems better for getting to her immediately - thanks all
wanda.jones@hhs.gov

ANd here's the link to their site should you want to keep an eye on it for when the webcast and minutes come out
http://forums.aboutmecfs.org/showthread.php?p=11462#post11462

if

 

[dsdmom]

I emailed Wanda last night and heard from her this morning. I am sure the more support they receive the more they are inclined to help us.

Wanda.Jones at hhs.gov

 

[greybeh]

I told her a brief version of my story (fibro), and that my mother is sick (she has fibro & CFS). I told her how a doctor wrote in my chart that I had fibro but did not tell me, how I was dismissed as having "just depression" until I was in a car accident and saw an out-of-town doctor who diagnosed me with fibro, and how since then, 3 other rheumatologists have confirmed my diagnosis.

She really hears, really listens to the people who are giving testimony and I know that she wants to see positive things come out of this. She wants to see us get the help and research we need.

I had never known a thing about her before I got this email response, but now I feel very positively that she's certainly doing her part.

 

[imready]

Islandfinn

Islandfinn, did you send your email to wanda.jones@hhs.gov? This is where I sent my Thank you to and I received a response this morning. I posted Wanda's response below.


Thanks. Indeed you're fortunate to have a supportive family, but we do need to get to the bottom of this illness. I am determined to push this along, bouyed by people like you who take time to remind me how important it is. Thanks again. Wanda
Sent from my Blackberry while I'm away from my desktop

 

[leelaplay]

Islandfinn, did you send your email to wanda.jones@hhs.gov? This is where I sent my Thank you to and I received a response this morning. I posted Wanda's response below.


Thanks. Indeed you're fortunate to have a supportive family, but we do need to get to the bottom of this illness. I am determined to push this along, bouyed by people like you who take time to remind me how important it is. Thanks again. Wanda
Sent from my Blackberry while I'm away from my desktop

Thanks for the better info! I edited my email to include her personal address

I'm so glad people are writing.

How impressive is she to send personal replies so quickly!? I want to steal her for the Canadian civil service!!!! Nothing can get things happening faster than an experienced bureaucrat (rather than outside experts who know nothing about how government actually works; ditto for elected politicians)


if

 

[KC22]

mail

I just typed and addressed an envelope to Dr. Wanda Jones. I thought it would be good for her to get old-fashion mail, too.

It will be sent tomorrow.

I just finished a letter to Ms. Sebelilus, too. I will work on congressmen and president this week.

This is our time to show that we are involved in this process, too!!

 

[leelaplay]

I just typed and addressed an envelope to Dr. Wanda Jones. I thought it would be good for her to get old-fashion mail, too.

It will be sent tomorrow.

I just finished a letter to Ms. Sebelilus, too. I will work on congressmen and president this week.

This is our time to show that we are involved in this process, too!!

yay you go go go go

Snail mail is gold, probably worth more than it's weight in gold, in the political world.

if

ps I'm starting to envision an avalanche of email, petitions and especially snail mail north and south of the border. and the UK? and Australia? and Germany?

a page to make it easy for everyone
- sample letters
- lists of politicians and government departments and media outlets
snail mail and email addresses
- relevant petitions to sign

hmmmmmmmm

 

[Kati]

E-mailed mine as well this morning- thanking her and asking her to proceed with recommendations from the board. I am from CAnada but the CDC is international, as is research- they are leaders. ?Unfortunately for too long we've had the wrong leader.

Let's keep the momentum going! Let's ask for equality in term of care- If HIV patients get access to care, access to medications (ampligen anyone?) why can't we? I have googled HIV this morning- and was flooded with gazillion websites. Got lost!

It's time we regain our quality of life. Especially the bed ridden ones, and the long timers.

Island Finn, have you tried the Minister of Health at all??? (I did, bad results)

Kati

 

[Dreambirdie]

I got a response from Wanda today, Sunday! Here it is:

"Thank you, xxx! We're feeling hopeful and excited, too, even though we know it's too early to know how all this will turn out.
We don't intend to quit on this, regardless! Wanda"

Sent from my Blackberry while I'm away from my desktop.

Very cool!

 

[SeaShel]

Chiming in with my "me too" that I sent an email to Wanda Jones thanking her for making webcasting happen and for her hard work. I received a response this evening. I'm impressed that she is taking the time to respond and not passing it off to an intern or clerical pool (do they still have those? I'm prolly dating myself or at least showing how long I've been out of corporate world).

Back in the days of Prodigy internet provider/service, I was on a cfids discussion board. There was going to be some kind of big meeting somewhere (love those memory and cognitive issues, glad you all can relate) and a bunch of us sent letters wanting a name change. It was to someone in the UK I think. His secretary sent us all a form letter back telling us that our "asinine braying" was doing no good. If I dug around enough, I could probably find it.

So, kudos to Dr. Jones for a pleasant acknowledgement vs. being told I'm an asinine brayer!

Maybe I should find that letter........might be time for a follow up

 

[leelaplay]

Chiming in with my "me too" that I sent an email to Wanda Jones thanking her for making webcasting happen and for her hard work. I received a response this evening. I'm impressed that she is taking the time to respond and not passing it off to an intern or clerical pool (do they still have those? I'm prolly dating myself or at least showing how long I've been out of corporate world).

Back in the days of Prodigy internet provider/service, I was on a cfids discussion board. There was going to be some kind of big meeting somewhere (love those memory and cognitive issues, glad you all can relate) and a bunch of us sent letters wanting a name change. It was to someone in the UK I think. His secretary sent us all a form letter back telling us that our "asinine braying" was doing no good. If I dug around enough, I could probably find it.

So, kudos to Dr. Jones for a pleasant acknowledgement vs. being told I'm an asinine brayer!

Maybe I should find that letter........might be time for a follow up

more and more impressed with wanda jones!!!!!

thanks for letting us know dreambirdie and SeaShel imready greybeh kc22 dsdmom et al

SeaShel - nasty little daydream of mine - maybe you could send a cc of the letter to the perpetrator and his/her boss, colleagues etc along with a cover letter saying only hee-haw. I of course would never do such a thing - I'm more the type to try to get people on board, however late they are. But fun to have a nasty little fantasy now and then!

if

 

[Marylib]

Sibelius

Does anyone know anyone who knows Sibelius?
Marylib

 

[SeaShel]

more and more impressed with wanda jones!!!!!

thanks for letting us know dreambirdie and SeaShel imready greybeh kc22 dsdmom et al

SeaShel - nasty little daydream of mine - maybe you could send a cc of the letter to the perpetrator and his/her boss, colleagues etc along with a cover letter saying only hee-haw. I of course would never do such a thing - I'm more the type to try to get people on board, however late they are. But fun to have a nasty little fantasy now and then!

if

if, those nasty little fantasy episodes keep me going

If I muster the courage to rifle through those old files (lots of emotional minefields in there), I'll certainly share the name and the body of the letter so you can feed your fantasy and/or participate. (insert evil chuckle here)

 

[Jessrose21]

I just emailed my letter of thanks to Wanda Jones using her direct email.