Media Coverage of Dr. Alters NIH paper, post stories here

[serenity]

SickofCFS is saying all of this better than i every could. i totally understand where you are coming from Mark, so nice of you to be worried about people - it really is, but i agree that we have no control over that really. you're a better person than me perhaps, haha! i'm mainly worried about my own skin ! no but seriously, you are good & kind to think of others & i hear what you are saying. perhaps i am being selfish, but i think Sick of CFS is right - nothin was gonna change over night.
yesterday i was baffled, i didn't understand a research paper. i'm no scientist & i was totally confused. today, the media have watered it down to where i can understand it & even start to find articles that are good enough to send to my friends & family. it took EVEN me, a person with whatever (didnt' we decide to call it WTF?) a day to digest it all before i got what was being said. if it takes me a day, think of how long it's going to take the whole world to get it.
so dont' be rushed. i know i know, i've been told to be patient for a year now & i was tired of it too - but now i am breathing a sigh of relief. the Alter paper actually did Alter things ! haha! i'm thrilled & i think if we hang on just a bit longer...
i am thinking of others too, seriously, i worry about the people who already have CFS being made to suffer more by a panicked public who take things out on them. so we are both worried about people, just different groups.
i just think, let's let it go where it goes - it's time to let it go & give it room to take off.
i'm just glad there are people out there looking out for everyone, after having to give myself a break from the boards over this very issues recently (the issue of how strongly we want this message delivered) i realized i have no control over it & i shouldn't - we need balance. we need people thinking of all the issues.

 

[Quilp]

Thanks for you kind words serenity, though placing me on a pedastal, I'm likely to fall off ( I'm wobbly as it is lol ) I don't think it was for purely altruistic reasons on my part that I wanted a 'panic' in the press rooms over this. You see logic tells me that if this was huge, was covered widely, splattered across the front pages here there and everywhere, it would have made it that much harder for the psychiatrists to put the genie back in the bottle.
News is power, imagine how differently our 'friends', relatives, neighbours, doctors, nurses, would have treated us if this news filled their ears day and night for days to come. Perhaps they might give us our respect back.

Kind regards, Mark

 

[Rrrr]

I don't get it. Americans "can be" very short sighted and self-centered which I thought would have led to some level of panic, people demanding tests, etc. The press, IMO, has done the general public a disservice by not explaining that 10-20 million Americans have this family of viruses (not to mention explaining they are HUMAN viruses) and we have no clue why some a sick and some aren't. Instead they've waded into the rather complex world of research studies and "conflicting" results, etc.

Frankly I hoped that CFS would be the secondary story as the news of the prevalence of an "AIDS-like" virus hit the front pages. If the public started screaming, I had hoped, there would be pressure for a) testing b) research into the virus(es) c) research into why some get CFS and some appear to be healthy. Hopefully research will continue.

exactly!!!! exactly what i had hoped. i am disappointed and down today. except for the wall st journal one.

 

[Rrrr]

Journalists are still working with press handouts and what they can find out from easy sources like...no screaming please...the CDC. I imagine very few mainstream media journalists have read either the Lombardi paper or the Lo paper. And we will never be able to forget that the cursed name is playing against us. Journalists aren't hearing that patients with neurological, endocrine, and immune system dysfunctions have these MLVs (note the missing "retro" in so many of the reports) and that people could become more impaired than HIV patients if they get a blood transfusion. BFD, they think. Some fatigued people might have a virus, ho hum. It might be in the blood supply? So what? They don't see the big story, yet, because it hasn't been handed to them on a silver platter. This is where our advocates can really shine.

It will happen. A few journalists will dig. The story will get out. Meanwhile, researchers seem to be working their little tails off in this field now, so we're moving along nicely.

i like your optimism. i just can't feel it myself.

down day for me.

rrrr

 

[Rrrr]

Thanks for you kind words serenity, though placing me on a pedastal, I'm likely to fall off ( I'm wobbly as it is lol ) I don't think it was for purely altruistic reasons on my part that I wanted a 'panic' in the press rooms over this. You see logic tells me that if this was huge, was covered widely, splattered across the front pages here there and everywhere, it would have made it that much harder for the psychiatrists to put the genie back in the bottle.
News is power, imagine how differently our 'friends', relatives, neighbours, doctors, nurses, would have treated us if this news filled their ears day and night for days to come. Perhaps they might give us our respect back.

Kind regards, Mark

exactly! (again)

 

[serenity]

i'm so sorry RRRR. yesterday was down for me because i didn't get what the paper meant. trust me i am no optimist, can you believe i was actually banned from another board for being too cynical! haha! i was happy to find a group as "cynical" (realistic) as myself here, but you guys somehow have turned me into the optimist! haha! thanks!
& yes Mark, of course - of course we all want the vindication & speed ... family & friends to say "oh i'm sorry we were so wrong" & docs as well to say "oh my goodness you are sick we better get you treated!" we all want that, i just think we have different opinions on how to get it.
i'm impatient too, trust me. but i dont' want to push it so far that instead of "sorry you are so sick" we get hate & disrespect insetead.

 

[Rrrr]

i really feel like most of the press pieces are belittling -- belittling the illness (fatigue), belittling imagery (how many of these articles have stock photos of cute little mice accompanying them), and belittling what should be real public concern over both us patients and the blood supply: "no, there is nothing to worry about here, move along folks. no "direct association" to this "fatiguing" thing. yet. more research needed. that's all!" that kind of crap. i'm really mad. i wanted MORE out of yesterday and today.

sorry to be such a sourpuss. but i guess being bedridden for the last 11 days will do that to a person. (or the last 20 yrs, more like.)

 

[Rrrr]

i'm so sorry RRRR. yesterday was down for me because i didn't get what the paper meant. trust me i am no optimist, can you believe i was actually banned from another board for being too cynical! haha! i was happy to find a group as "cynical" (realistic) as myself here, but you guys somehow have turned me into the optimist! haha! thanks!
& yes Mark, of course - of course we all want the vindication & speed ... family & friends to say "oh i'm sorry we were so wrong" & docs as well to say "oh my goodness you are sick we better get you treated!" we all want that, i just think we have different opinions on how to get it.
i'm impatient too, trust me. but i dont' want to push it so far that instead of "sorry you are so sick" we get hate & disrespect insetead.

i hear you, serenity. and thanks for giving me a giggle reading yr post (that we turned a cynic into an optimist). and yes, i DID want this pushed further than it was. time wll tell, i guess. there is still time for panic in the streets! one can hope, can't one?!

 

[dancer]

Mixed feelings...
I was also feeling a little deflated yesterday. I was SO excited while waiting for the news, and hoping that perhaps after the long delay, the government would announce an FDA approved test that I could go to my primary care doc and ask for and have covered by insurance. It felt like the loud message was "more questions...more time."

But then this morning my mom called me SO excited, because in her Minneapolis paper, there was a big article on page 3 - something about - Virus linked to CFS - and even though she's understood when I've explained this was a neuro-immune illness and not "just being tired or run down" - I could still tell the difference it made for her to see that article.

It's not as big a stride forward as I'd hoped for, but it IS a step in the right direction.

 

[serenity]

me too dancer, for me the email from my mom is a big thing. she sort of tries her best to understand but is a person who denies health issues herself & - for me, to hear her say "i saw it in the news" was big. even tho i told her it would be there. still, she didnt' have to look for it, i didn't have to send her the article. if she saw it so did others.
sure she has a daughter who has it so she tries to pay attention, but she got it - the first day the press put it out. so if she did, others will too!
that's how i feel, i just think we need to give this a little time...

 

[SOC]

i really feel like most of the press pieces are belittling -- belittling the illness (fatigue), belittling imagery (how many of these articles have stock photos of cute little mice accompanying them), and belittling what should be real public concern over both us patients and the blood supply: "no, there is nothing to worry about here, move along folks. no "direct association" to this "fatiguing" thing. yet. more research needed. that's all!" that kind of crap. i'm really mad. i wanted MORE out of yesterday and today.

sorry to be such a sourpuss. but i guess being bedridden for the last 11 days will do that to a person. (or the last 20 yrs, more like.)

Well no wonder you're down! Bedridden for 11 days straight will indeed do that to a person. I was bedridden most of last fall from a relapse after travelling to my mom's funeral, followed immediately by H1N1 which went into pneumonia (mild, thanks to ABX). I was SO glad to finally get out of bed sometime in January.

I think the big difference between you and I is not that I'm an optimist and you're not, so much as the other way around. I'm not disappointed today because I didn't expect the media to get the story right so soon. I expected the science to be good, and I'm thrilled that it is. You were perhaps optimistic (in your heart of hearts, anyway) that the release of this new scientific info would change how we're viewed and that didn't happen. That IS a big bummer. Added to 11 days in bed, that would make anyone feel down. :Retro smile:

 

[serenity]

again Sick of CFS is so right, we aren't optimists at all! we are realists & our expectations were lower than yours RRRR.
i'm so sorry you are in bed, you really deserve a lot of credit for all do you despite how ill you are. you fight for us so hard & it is appreciated, even if as you stated to me earlier we go about it in different ways.
we both want the same result. that is for sure!

 

[pictureofhealth]

ME Association (UK) statement & UK media response

I have just posted an interim statement from the UK's ME Association on one of the other Phoenix Rising threads s- 'UK Media response to NIH/FDA paper'.

The MEA are hard at work on their own statement, in consultation with several UK doctors, and Dr Shepherd also forwarded his suggestions of why the UK media has been incredibly slow to respond/non responsive to the news of the PNAS article so far.

As they are unable to update their own website content at the moment (technical operator hitch!), Dr Shepherd hopes the full MEA statement on the positive Alter/Lo paper will be available for us to repost here tomorrow (once the Association's trustees have approved the content).

 

[parvofighter]

Transcription of FDA Media Telebriefing

Feeling a little swamped here...in a good way tho. Just can't see if this has been posted already. Our team at XMRV Global Action transcribed the August 23rd FDA Media Telebriefing, and has posted it here:
http://www.facebook.com/notes.php?id=216740433250#!/note.php?note_id=432527206796

The first paragraph:
Here is our "close" transcription of today's formal Tele-Press Briefing and Q&A by the Lo/Alter scientists and their teams, as well as NIH and CDC scientists regarding the FDA paper and its implications. There are some excellent explanations of the results by Drs Alter and Lo, with encouraging comments on forthcoming XMRV/Murine Leukemia Virus (MLV) research. In a nutshell: the finding of multiple MLV sequences in patients with ME/CFS is entirely consistent with - and indeed typical of - retroviral infections in humans. Causality is yet to be determined, however research is already underway to do just that. And to use Dr Alter's words, this team found a "dramatic association" of MLV's with ME/CFS, and their findings "basically confirm the findings of the Whittemore-Peterson group".



Happy reading!

P.S. Feel free to post excerpts of the transcription, with the above hotlink, just not the entire transcription please.:Retro smile:

 

[anciendaze]

I'll leave it to others if this really belongs in this topic, but it fits my own peculiar perceptions.

Today, while I was at the dentist, there was a TV in the room where I was treated (crown installed). While I was unable to say anything, Dr. Oz came on with a segment explaining about panic attacks -- in the vagina. (I swear I'm not making this up.)

Clearly, we haven't altered the course of the mindless media, but then I'm not sure their coverage would be an asset.

The people who will actually read scientific papers will catch change in the air, and that will cause the changes we want, just not overnight.

 

[serenity]

haha! i agree ancient daze, wow. vaginal panic attacks. well, ok then!

 

[camas]

What an effort, parvofighter! Thank you, thank you, thank you!

Oh, and that's Joan McCarter contributing editor at Daily Kos asking the question about a standardized test.

 

[urbantravels]

They only panic when you sneak up on them and startle them. The right approach makes all the difference.

 

[Anika]

Thanks LJS and others

LJS, thanks for putting this thread together and keeping the lead post updated - that is a huge benefit to all of us - and made possible by the collective efforts of many others. Kudos! And the transcript of the briefing is a great plus - thanks parvofighter and those who contributed to that, as well.

I wonder if there are some other types of threads where this idea could also be used effectively - so that key information is always easy to find at the beginning of the thread. Seems like some advocacy and research topics could also benefit from this.

Great job!

Anika

 

[Rrrr]

They only panic when you sneak up on them and startle them. The right approach makes all the difference.

hysterical!!!! very funny and very true!!!!