SF Chronicle: "Chronic Fatigue Patients Protest Lack of Funding"

[justinreilly]

Rivka Solomon and her Mom organized this great protest at the San Francisco HHS offices:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/05/25/BANA1JL1AH.DTL


(I tried to comment but the registration process messed up)

 

[RivkaRivka]

thanks, justin.

this was this reporter's first stab at covering ME/CFS. i guess as a result the article has a lot wrong with it, most glaringly:

- it touts CBT (again!!??? crap!)
- says that we are sick days/weeks. what the heck? i clearly explained (50 min interview), and i'm sure others interviewed did, too, that i have been very sick for 21 years. much of it homebound and bedridden. it is years/decades, not days/weeks.
- there was a quick dismissal of xmrv, tho i stressed that too in the interviews
- and finally, not one WPI quote, tho we hooked the reporter up with WPI.

but regardless of yet another incomplete, misleading article in the mass media, one that does not really explain the topic or our struggle, the demo itself was a HUGE success and i'll put out the write up (description) and video on it this weekend, once i've had a chance to get the footage from my mom (overnighted to me) and edited and posted on youtube!

even in the face of a bad article, some are suggesting we email it around and stuff, so that the newspaper sees that there is a big readership of this topic and thus will do another story in the near future. i think this reporter was interested and compassionate, and maybe we can teach her more about the real facts of our illness and the political situation.

rivka

 

[Nielk]

Rivka,

Thank you so much for all you do.
You are a great advocate for us. You keep trying to raise awareness even though you are sick yourself.
It is much appreciated!!!!!!!!!!!!!!!

 

[justinreilly]

this was this reporter's first stab at covering ME/CFS. i guess as a result the article has a lot wrong with it, most glaringly:

- it touts CBT (again!!??? crap!)
- says that we are sick days/weeks. what the heck? i clearly explained (50 min interview), and i'm sure others interviewed did, too, that i have been very sick for 21 years. much of it homebound and bedridden. it is years/decades, not days/weeks.
- there was a quick dismissal of xmrv, tho i stressed that too in the interviews
- and finally, not one WPI quote, tho we hooked the reporter up with WPI.

but regardless of yet another incomplete, misleading article in the mass media, one that does not really explain the topic or our struggle, the demo itself was a HUGE success and i'll put out the write up (description) and video on it this weekend, once i've had a chance to get the footage from my mom (overnighted to me) and edited and posted on youtube!

even in the face of a bad article, some are suggesting we email it around and stuff, so that the newspaper sees that there is a big readership of this topic and thus will do another story in the near future. i think this reporter was interested and compassionate, and maybe we can teach her more about the real facts of our illness and the political situation.

rivka

Exactly! The protest was a success and got covered!!! That is what is important. I noticed too the inaccuracies you cited. I think what happens is reporters talk to us and then they 'fact-check' on the CDC or CAA website or any of the other outlets of nonsense and they substitute in the 'facts' from CDC.

I think we should try to supply our own written materials with quotes from real authorities. We should probably also include warnings about the lying and/or unreliable info sources- CDC, NIH, CAA etc (sadly most sources). This might have a negative effect in the short term in that a reporter might then be 'alerted' to 'fact-check' what we say if we are claiming these supposedly trustworthy sources are anything but. However, I think we do have to introduce into the media the fact that the government not only glaringly underfunds, but also actively spreads misinformation.

In any event, Thank You once again.

 

[Hope123]

Everyone, please comment on this article! More comments = more press coverage in the future.

 

[Sushi]

Rivka Solomon and her Mom organized this great protest at the San Francisco HHS offices:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/05/25/BANA1JL1AH.DTL


(I tried to comment but the registration process messed up)

Yes, Rivka, great demo and the write up had at least some good points--and it was published!

I also tried to register to comment and after I registered it wouldn't accept my user name and password??

Sushi

 

[Hope123]

I'm encountering the same issues with signing in. I registered OK but when I went to "finalize" my registration, it didn't recognize my user name.

I suggest if people can't sign in, they write the reporter directly and say that you can't sign in but here is my comment.
Preferably a public comment is better so everyone gets to see it!
The reporter's e-mail is eallday@sfchronicle.com.

 

[justinreilly]

I think the article was really good, and I believe a first, in that it at least covered an ME protest (even though it was small)!! We should definitely circulate it as much as possible- to let 'them' know we will not go away! We are just going to become louder and more public and embarrassing to them. We know from experience, this is the only way 'they' will cut down on their shenanigans.

And we absolutely need 'civilians' on our side! There is no way we can do this alone- just us sick patients. We need Joe and Jane American-Idol watcher, or at least a segment of the public, to have us on their radar and to think 'that's messed up how they treat those poor people.' This is the way to get there. Then we will not be treated like scum.

Rivka said elsewhere that the reporter was sympathetic and maybe she could be open to covering ME again. That's huge. Let her know she can become the next Randy Shilts (he covered AIDS for the SF Chronicle)!! Tell her that NYTimes' David Tuller and pulitzer prize winner Amy DM are already on the beat! She can't let the Wall Street Journal be the champion of the downtrodden ME patients while the Chronicle looks the other way, can she?!

 

[RivkaRivka]

justin, you have wonderful suggestions here on this thread! thank YOU for all YOU do for our community. i can say the same thing to hope and sushi. and everyone. now, on to organizing the next demo! who wants to hold it? i'll help in any way i can. -- rivka

 

[markmc20001]

Great job! Thanks all.

 

[Hope123]

If anyone was having probs signing in before, try it again. It seems to work now!

There are some ignorant comments on the article already so please post.

 

[WillowJ]

well done, rikva!

 

[Cort]

thanks, justin.

this was this reporter's first stab at covering ME/CFS. i guess as a result the article has a lot wrong with it, most glaringly:

- it touts CBT (again!!??? crap!)
- says that we are sick days/weeks. what the heck? i clearly explained (50 min interview), and i'm sure others interviewed did, too, that i have been very sick for 21 years. much of it homebound and bedridden. it is years/decades, not days/weeks.
- there was a quick dismissal of xmrv, tho i stressed that too in the interviews
- and finally, not one WPI quote, tho we hooked the reporter up with WPI.

but regardless of yet another incomplete, misleading article in the mass media, one that does not really explain the topic or our struggle, the demo itself was a HUGE success and i'll put out the write up (description) and video on it this weekend, once i've had a chance to get the footage from my mom (overnighted to me) and edited and posted on youtube!

even in the face of a bad article, some are suggesting we email it around and stuff, so that the newspaper sees that there is a big readership of this topic and thus will do another story in the near future. i think this reporter was interested and compassionate, and maybe we can teach her more about the real facts of our illness and the political situation.

rivka

Well done Rivka! I wouldn't expect too much from reporters..They featured Dr. Montoya prominently - that was pretty darn good - and then they gave an opposing opinion. Its too bad they didn't emphasize the lack of funding more-that is the KEY.....That is what we need to focus on....I think its a great start - you got in the paper and you got Dr. Montoya in the paper- well done!

 

[Cort]

Here was my comment

Thanks for covering this issue. The fact is that approximately a million people in the US suffer from an often disabling, poorly understood illness that that has received almost no federal funding for the past 20 years. Government studies show that chronic fatigue syndrome (ME/CFS) costs the US economy about 20 billion dollars a year and yet receives only about $4 million dollars a year in funding.... Contrast that to asthma which causes about half the economic losses that CFS and gets about 300 million dollars in funding every year and you can see why ill people will get out of their beds, knowing they will relapse, some of them severely, to protest like this.

The NIH has basically adbdicated its own principles of supporting the nations health by essentially ignoring, for decades now, a substantial number of ill citizens. CFS may not be sexy or easy to understand but it is common and these people deserve the help that other people with chronic illnesses receive.

With regards the antibiotics quote...Dr. Montoya and other physicians could certainly talk to the assistance many people with CFS have received while on antivirals (not antibiotics). Dr. Montoya is a specialist in this disorder - something that can not be said of the other doctor...

Read more: http://www.sfgate.com/cgi-bin/art​

icle.cgi?f=/c/a/2011/05/25/BANA1JL1AH.DTL#ixzz1NZh15vXx

 

[Sushi]

I finally got my registration accepted and posted a comment. Not very creative, but the best I could come up with at the moment!

Sushi

Sushi

As someone who has had Chronic Fatigue Syndrome for more than two decades, I appreciate the tone of this article but take exception to the phrase: "... oppressive fatigue that lasts for days or weeks and doesn't go away with rest or proper sleep."

Make that oppressive and debilitating fatigue that often prevents you from walking from your bed room to the bathroom, and lasts until you die--or find an effective medical treatment.

Over 1 million sufferers in the US alone who not only have lost their lives but cost the country untold amounts of money in lost revenue, payments for ineffective and unresearched treatments, and loss of the enormous productivity these patients had before becoming ill.

These patients (unless they became ill as students) generally had very productive and creative careers--and now require care-taking from family and friends.

Research is needed, clinical trials is needed...money is needed!

 

[justinreilly]

I posted a comment and emailed the author. I think it's a great idea to email the author of any story your comments to make sure she sees people are interested.
eallday@sfchronicle.com

 

[*GG*]

Exactly! The protest was a success and got covered!!! That is what is important. I noticed too the inaccuracies you cited. I think what happens is reporters talk to us and then they 'fact-check' on the CDC or CAA website or any of the other outlets of nonsense and they substitute in the 'facts' from CDC.

I think we should try to supply our own written materials with quotes from real authorities. We should probably also include warnings about the lying and/or unreliable info sources- CDC, NIH, CAA etc (sadly most sources). This might have a negative effect in the short term in that a reporter might then be 'alerted' to 'fact-check' what we say if we are claiming these supposedly trustworthy sources are anything but. However, I think we do have to introduce into the media the fact that the government not only glaringly underfunds, but also actively spreads misinformation.

In any event, Thank You once again.

I concur, good job!

I would suggest some material from the Nightangale Foundation http://www.nightingale.ca/ and the HFME website. http://hfme.org/