New!! Dr. Donnica and Dr. Enlander videos

[Kati]

Thank you Dr Donnica, I really appreciate these videos- I hope they are highly searchable in the WWW search engines.
I also think it's fantastic that you are among us in the forums. I also urge other doctors to come and participate, as we try not to bite really hard unless you have a really bad attitude.

What we want most is to be heard, respected, understood, and healthy


.:Sign Good Job:

 

[Marylib]

Wow!! Those are terrific, your hair is great...

So lovely to hear "post-exertional exacerbation of symptoms" rather than the post exertional malaise that don't quite cut it, eh?

Thanks again to you and Dr. E.

 

[Frickly]

I'm ordering my T-shirt now!

I "HEART" DR. D!

Thanks Dr. Donnica!

 

[gracenote]

I want this T-shirt

What we want most is to be heard, respected, understood, and healthy

I think Kati's words would make a great T-shirt, too.

What we want most is to be

HEARD RESPECTED UNDERSTOOD

and HEALTHY​

 

[DrDonnica]

Thanks for all the great feedback (even about the hair--I've never had it curled before--I made the mistake of telling the hairdresser "just do whatever you think looks best" while I was studying my notes for my GMA Health segment that day!). I wouldn't typically use "medicalese" without explanations, but this was for an MD audience. Thanks to those who posted definitions! They put Brian (my son) on the spot to do an impromtu restaurant review of the place they had lunch before the appointment with Dr. Endlander (my whole family went into NYC to give blood for his ongoing XMRV trial--unfortunately it's blinded so we won't get the results). If you want to see Brian's restaurant review video, it's at http://www.thedoctorschannel.com/video/2808.html. . .and they gently poked fun of him for not being familiar with profiteroles! You can all relate to what an effort it was for him to shlep into NYC in the first place, let alone tape a video! He's been virtually housebound (except for doctor's visits & Thanksgiving at my mom's) since 11/8. I totally get the comment about having a "bad hair life".

 

[MEKoan]

My goodness, DrD, what a charming young man your son is! Is he interested in medicine or, perhaps, he has found his niche in TV? He is very camera friendly in every possible way. You must be very proud of him.

Your hair looks very good curled. We all have a notion about whether we are curly or not and, I hate to break this to you but, you just may be curly after all.

Thanks for being not just a doctor talking about this but a mum and a wife and a smart, good and brave person representing our community. You do us proud.

Peace out,
Koan

 

[Kati]

Wow Dr Donnica, your son did a great job!!! It's funny that it look like it was a fancy place and he had burger and fries!!!:Sign Good Job:
I hope that your son gets better and can enjoy his life as a young man really soon, much like the rest of us!

Kati

 

[MEKoan]

Oh dear, Dr.D, I hate to tell you this but my 27 year old girl kid thinks your son is "really cute" and she didn't mean like a puppy.

 

[gracenote]

Way to go Brian

If you want to see Brian's restaurant review video, it's at http://www.thedoctorschannel.com/video/2808.html. . .and they gently poked fun of him for not being familiar with profiteroles! You can all relate to what an effort it was for him to shlep into NYC in the first place, let alone tape a video! He's been virtually housebound (except for doctor's visits & Thanksgiving at my mom's) since 11/8.

That is so sweet and fun. Your son has a great TV presence just like his mom. He can do patient videos for us. What a great spokesperson he would make. He can mispronounce any words he likes it's very endearing! Thanks for sharing your son with us. :Retro smile: :Retro smile: :Retro smile: Hi Brian.

 

[usedtobeperkytina]

And anyone watching Brian would say, "But you look so healthy. And you seem so energetic."

It's so hard to explain to people, yes, I am having fun now, but I will be in bed feeling like I have a hangover all day tomorrow. It's just such a dichotomy. And we don't want to go around explaining the details of our illness. I just feel frustrated that we can't get people to understand. I went to the grocery store on Wed. I felt pretty good. I was perky. But last weekend, for three days, I was stuck on the recliner as though I had the flu, hour after hour in a body that was dragging.

No wonder no one believes us, even the doctors.

I still say we need to stage a demonstration in front of some of these doctors' offices that we know don't believe us. We need to take loungers and place them on the sidewalk. We need to be in our PJs and have signs on the back of our loungers saying, "We're tired of being ignored." "We're tired of doctors not believing us."

You get the idea.

After spending two days doing that, I bet a lot of us would actually look sick. News media will come take photos of us curled up with a blanket, our hair not done, no makeup, etc.

Thanks Dr. Donnica. I wondered, were you invited by this site to do this, or did you contact them?

(If they contacted you, then I would be very pleased.) Also, about how influential is this site? How many doctors use it? Would my doc on main street likely see it?

Tina

 

[Kati]

Tina I feel the same way. re:"We're tired of being ignored." "We're tired of doctors not believing us."

 

[DysautonomiaXMRV]

Dr Donnica is stating what CFS is, so I can't criticise her at all and don't wish to. I'm glad she said what she did and her TV appearences on Dr Oz and the other TV programme were really good and gave me some hope. It's slightly bizarre to see her (one of the few doctors in the world) go on camera and support some basic criteria on CFS - yet still think to oneself, this could have been done many years ago by many other doctors.

Where are the other doctors supporting Dr Donnica, to support us?! We've got Nancy Klimas, Dr Donnica, Dr Mikovits, Dr Peterson (All American). Who else?

I guess one person's CFS is another person's fatal Neuro immune disease is another person's depression. (Lots of different conditions all given the same labe). So we need a diagnostic test and fast. I'm sure for a lot of people with CFS Dr Donnica's explanation of CFS was actually very relevant - just not for all of us with the label CFS. It's impossible to please all of us, if we don't all share the same condition though.

Maybe one day, someone will say on camera about the levels of severe disability - not just in the CFSAC meeting of 2009. For many patients 'CFS' means spending a lot of time in ER, and trips into hospital when very sick indeed, being unable to speak or stand upright due to cardiac dysfunction, muscle wasting, shortness of breath leading to lack of abilty to complete daily living tasks etc.

Fukuda critera/explanation doesn't link to that level of disabilty.

There seems to be an embargo in Governments to either admit people with the label CFS can be extremely ill, or to say no, they have Canadian criteria CFS if severely ill - then never discuss Canadian criteria CFS! So it looks like we'll be looking out (and hoping) for Dr Donnica to maybe to list the symptoms of Canadian Criteria CFS also - because no one else seems prepared to help us.

 

[sleepwalking]

Thank you so much for your support Dr. Donnica.

 

[DrDonnica]

And anyone watching Brian would say, "But you look so healthy. And you seem so energetic."

Thanks all! And I wish I could show you a photo of what Brian looks like when he's well! He HATES it when people say (or when I slip & say) he looks good or "fine" when he's crashing. My metaphor is that if you get a new BMW & drive it til it runs out of gas, it will still look great--but it won't go. OK--oversimplistic, but for some reason we need to keep it simple with explaining CFS! I was at a dinner party tonight with several physicians. The woman internist next to me new nothing about CFS, but as soon as the dermatologist acrossed the table heard us talking he asked me excitedly about what I thought about XMRV. He was very knowledgeable, especially about new onset allergies ("atopy") in PWC & various rashes.

The doctor who runs TheDoctorsChannel.com is a good friend of ours & a big fan of Brian's. My husband came up with the idea to do the CFS videos, & he was happy to do it. No idea how many MD's have viewed the video, but it's got nearly 1,000 views so far. But that could be just from folks on this forum!

 

[Kati]

Dr Donnica, little by little, people will get to learn about XMRV. They won't be able to afford not to know about XMRV.
So far I have "educated" my family dr, my dentist, a rheumy and an endocrinologist... oh and the ER dr that was pissed off at me this last week I keep a copy of the Science magazine article with me when I go to a new appointment.

I am not sure how helpful these people can be to me, since none of these doctors are familiar or treating this disease, but I think that in the long run, it will help them looking for more information and perhaps for some, change their attitudes towards the disease.

Thank you for your work.

 

[usedtobeperkytina]

Interesting the dermatologist new of the rashes. That is one of the minor, less known symptoms. Looking back, I now see I had one, but my dermatologist never thought of CFS. Just a little reaction to dishwater soap. It last off and on for a year, then disappeared. I don't even remember when I got it in relation to my other symptoms. But I only recently connected that rash to CFS. I never had allergies to anything my whole life. Thankfully, that one episode is the only allergy / rash / sensitivity thing I have had to deal with. I don't have MCS and I don't have the sensitivity to meds that others describe.

Maybe this explanation: It's like a car with a defect that burns up all the fuel in half the normal time so it ends up running out of gas at the most unexpected times and much more often. The car looks fine, but that doesn't mean it can go and last like other cars without the defect.

Tina

 

[Kati]

Interesting the dermatologist new of the rashes.
Tina

Lol, I don't dare going to a dermatologist with a CFS rash- especially if there are no CFS specialiss in town-

But I'd be curious to see what it looks like- itchy/not itchy?

 

[DrDonnica]

New cfs video on the doctors channel

Here's the link to my most recent CFS video on TheDoctorsChannel.com. Remember that these are designed to be very short (1-2 mins). The way we made them, BTW, was that Dr. Enlander & just talked about the most basic CFS-related topics we thought were important for doctors--mostly primary care physicians who are not familiar with CFS--to know about. Then the discussions were edited and broken down into short videos. XMRV is to come! http://www.thedoctorschannel.com//video/2844.html

 

[Dreambirdie]

Thanks again and again, Dr Donnica, for your work on this! :victory::victory::victory:

I'm so grateful that you are out there in the media world, speaking on our behalf. :Retro smile::Retro smile:

 

[kit]

Thanks DrDonnica! I love that question to differentiate between depression and CFS. It really hits the nail on the head. What would I do if I got better? What wouldn't I do! So much thanks to you for giving physicians a clear, concise way to understand this.