TONIGHT (2/22) / TOMORROW -- Tell Katie Couric your opinion of PACE!

[eric_s]

It gets crazier and crazier... in the end we might have been bashing the CAA and alerting the CBS about information that's harmful for us while the CAA is bringing out good research...

We will see tonight... the CAA's reaction to the PACE trial was very weak, but if this study is good, then thanks, CAA. If you show us that you are worth supporting, i'm sure many will do that. Maybe you should work on your PR side a bit...

 

[urbantravels]

The CAA on their Facebook news feed also let us know that we shouldn't write to CBS about the PACE trial because it will only "distract" from the new study results that are going to be discussed.

To which I say, Heavens, let me clutch my pearls. It's a professional news organization. I just can't seem to get too worried about whether we're going to 'distract' them from what they're planning to report on. Here the PACE trial has been all over the English-speaking news since last week, with hideously slanted coverage and even more damaging headlines - are they going to run this report and not breathe a word about the PACE trial unless we are SO TACTLESS AS TO REMIND THEM THAT IT EXISTS? And if nobody ever mentions the PACE trial again, will it magically go away?

Even if they utter one sentence about the PACE trial in introducing their report, and even if the overall report is about some wonderful new findings that we're going to like, if our letters make them change ONE OR TWO WORDS - make them mention the "disputed" claims of the "controversial" PACE trial - we haven't wasted our time. And now they have lots of new background about how poor the standard of research on ME/CFS can be - who knows, they might report more fully on it another time.

We can't exactly bombard CBS with letters about new research that's embargoed and that we haven't seen yet (although I was very sure to innocently mention in my letter that there is "mounting evidence that there are physical abnormalities in the bodies of ME/CFS patients") -- but we can let them know about this huge, long-standing, massively influential, and massively damaging research and the dreadful wrongness of the coverage it's received.

CAA, stop telling me to be a good little girl and let the grown-ups decide what's best.

 

[justinreilly]

Urbantravels, I agree totally. Sitting quietly, raising your hand only speaking when CAA or CDC calls on you hasn't worked particularly well for decades.

In fact I think we should try to publish a journal article, even in a crappy pay-for-play journal that the PACE study is an 'absolute fraud' as BMJ did to Wakefield. We would issue press releases and have everyone barrage the news outlets with calls, faxes and emails. It works for BMJ and co-conspirators, why not make it work for us?

I am glad very this study on spinal inflammation markers is coming out. One more reason that ME is justified as a name. I'm getting really tired of the lies from CDC and the other usual criminals that there is 'no neurological pathology' and 'no evidence of encephalomyelitis' in ME ("CFS"). This is their main argument for not reverting to the original official real name of the disease, ME. This is not the first study showing encephalitis or myelitis in ME. Let's not stand for these lies any more.

 

[Otis]

Apparently the CBS lead-in to the story is about "Being tired all the time". Please tell them how it really is. I have no confidence that the CAA won't botch this yet again.

 

[justinreilly]

Apparently the CBS lead-in to the story is about "Being tired all the time". Please tell them how it really is. I have no confidence that the CAA won't botch this yet again.

I emailed them the below. Feel free to reproduce.

Dear CBS Evening News,

Please do not lead in your story on ME ("CFS") with "Are you tired all the time? A new study confirms there's brain inflammation in patients with Chronic Fatigue Syndrome."

That's just like saying "Are you tired all the time? A new study confirms there's brain inflammation in patients with MS and Leukemia."

sure, fatigue is the most prominent symptom in ME ("CFS"), MS and Leukemia, but the symptom 'chronic fatigue' does not capture the essence or gravity of these diseases. And 'chronic fatigue' should not be used as another name for the devastating neuro-immune disease ME ("CFS").

A more appropriate lead-in would be "Are you having a blast cell crisis, encephalitis, retrovirus infection, leukemia, heart failure, seizures and non-HIV AIDS? A new study confirms brain inflammation in ME."

Please feel free to contact me regarding this matter. Thank you for your consideration.


Sincerely,

 

[eric_s]

I'm not able to find anything about the upcoming story on the CBS website. Could someone post a link please, if there is something available?

 

[Hope123]

Well, when I posted my original call for action, I knew I was doing it with the risk of possibly getting the story wrong and one person I talked to told me maybe I should wait until clarification was done. However, I felt that waiting was the wrong response since I only had a few hours with limited energy to respond and my audience (you guys!) might not pick up the message in time and would need time to write in. So I took the risk, thinking it's better to act first and then ask for forgiveness later.

I hope that this study is reported such that it helps support ME/CFS as a biological illness. I am not sure yet what the impact will be as skimming the paper, it is a small study and primarily concerns distinguishing ME/CFS from post-Lyme disease, which from a science perspective is great, but not sure how this counteracts all the negative PACE information already all over the place. My other thought was even if I was wrong, at least I would have given CBS staff a window into what ME/CFS patients dealt with and they might investigate further. So THANK YOU to everyone who wrote/called in and to the people who helped spread the message!

My last defense: this is what happens when a scientist tries to do PR! (usually, I'm pretty cautious) So, I am glad that other orgs are taking over and doing something with this!

 

[Dolphin]

Well, when I posted my original call for action, I knew I was doing it with the risk of possibly getting the story wrong and one person I talked to told me maybe I should wait until clarification was done. However, I felt that waiting was the wrong response since I only had a few hours with limited energy to respond and my audience (you guys!) might not pick up the message in time and would need time to write in. So I took the risk, thinking it's better to act first and then ask for forgiveness later.

I hope that this study is reported such that it helps support ME/CFS as a biological illness. I am not sure yet what the impact will be as skimming the paper, it is a small study and primarily concerns distinguishing ME/CFS from post-Lyme disease, which from a science perspective is great, but not sure how this counteracts all the negative PACE information already all over the place. My other thought was even if I was wrong, at least I would have given CBS staff a window into what ME/CFS patients dealt with and they might investigate further. So THANK YOU to everyone who wrote/called in and to the people who helped spread the message!

My last defense: this is what happens when a scientist tries to do PR! (usually, I'm pretty cautious) So, I am glad that other orgs are taking over and doing something with this!

(Hope123 didn't ask me to write this) Just to say that Hope123 showed me earlier a very detailed letter she sent to CBS that I know took a lot out of her to write - she was up very late (past her bedtime) doing it. So she didn't just write a short note and leave it there - she did put a lot of effort herself into the strategy.

Thanks to her and everyone who did write in.

 

[CBS]

It gets crazier and crazier... in the end we might have been bashing the CAA and alerting the CBS about information that's harmful for us while the CAA is bringing out good research...

We will see tonight... the CAA's reaction to the PACE trial was very weak, but if this study is good, then thanks, CAA. If you show us that you are worth supporting, i'm sure many will do that. Maybe you should work on your PR side a bit...

Hi Eric,

I've never doubted the research that is seeded by the CAA. In fact, a huge concern was that in criticizing the CAA the research would be hurt but that it had to be done as KM's horrible relationship with CFS patients was severely limiting funds by alienating patients and that driving patients away would ultimately hurt the one thing they were doing right, seeding research.

That said, the CAA (SV) may have consulted on the study but it does not appear that the CAA funded the research, at least not at this stage:

Funding: National Institutes of Health, through NIAID (grant AI088765), NIDA (grant DA021071), NINDS (grant NS38636), the National Center for Research Resources (RR018522), the Swedish Research Council (621-2008-3592), Uppsala Berzelii Technology Center for Neurodiagnostics, SciLifeLab-Uppsala, Time for Lyme, Lyme Disease Association, and the Tami Fund for support of portions of the research. Pacific Northwest National Laboratory units are located in the Environmental Molecular Sciences Laboratory, a national scientific user facility, sponsored by the Department of Energy (DOE), operated by Battelle Memorial Institute for the DOE under Contract DE-AC05-76RL0 1830. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

 

[anciendaze]

This study was mentioned in comments made on the press coverage and I thought it was worth following up.

Good catch, Marco!

The main reason I didn't even try to find this reference was that I thought everyone with any experience with walking exercise knew that 4 mph. or 6 km./hr. was standard for healthy people. A 6 minute test is convenient in part because it is 1/10th of an hour, yielding an immediate estimate of 600 m. Healthy people typically cover 100 m./minute.

The numbers in the PACE study were not exactly hidden. This makes me wonder about journalists, numbers and thinking.

...So after treatment with CBT or GET, these patients still had very much lower physical functioning than that considered abnormal (518m) for an elderly cohort (50-85 yrs) and in fact lower than the range extreme found in this cohort (383m and strongly correlated with age).

The number at baseline for the CBT group happened to be 333 m. The improvement was thus 21 m. This was considered significant, while a 22 m. improvement in the specialist group was not. I believe the reason was due to self-assessments, which must be weighted more than objective data.

Some people other than journalists have problems with numbers.

 

[eric_s]

Hi Eric,

I've never doubted the research that is seeded by the CAA. In fact, a huge concern was that in criticizing the CAA the research would be hurt but that it had to be done as KM's horrible relationship with CFS patients was severely limiting funds by alienating patients and that driving patients away would ultimately hurt the one thing they were doing right, seeding research.

That said, the CAA (SV) may have consulted on the study but it does not appear that the CAA funded the research, at least not at this stage:

Yes, when i wrote my comment, i thought this might be the Lights' study.

 

[justinreilly]

Hi Eric,

I've never doubted the research that is seeded by the CAA. In fact, a huge concern was that in criticizing the CAA the research would be hurt but that it had to be done as KM's horrible relationship with CFS patients was severely limiting funds by alienating patients and that driving patients away would ultimately hurt the one thing they were doing right, seeding research.

That said, the CAA (SV) may have consulted on the study but it does not appear that the CAA funded the research, at least not at this stage:

There is some value in having someone knowledgeable sift through proposals to pick the most promising as caa does. however, i think it will be better overall for the research funding to send the money directly to the researchers we like. you cut out the middleman (caa) which takes out a hefty chunk of money that could otherwise go to the research. I know money i send to wpi, for example will be spent on good research. i don't need caa to charge me a lot to tell me that. also Lenny Jason always does great studies. OFFER sounds like the same deal. send the money there and it will go to great ME research without a 'finder's fee' charged. We as patients have been able to much more worthy research opportunities than we have cash to contribute so overall i think the research will prosper more without caa involved.

 

[Hope123]

One thought about sending donations to researchers directly, especially if they are affiliated with a university of research institute, is to ask whether you can go through the uni/ inst. as it would qualify those interested in it to get a tax-deduction. You can then specify the funds directly for that person/ group. I do not know the details of how researchers set it up so maybe someone else (Timaca?) can respond to this.

 

[Dolphin]

There is some value in having someone knowledgeable sift through proposals to pick the most promising as caa does. however, i think it will be better overall for the research funding to send the money directly to the researchers we like. you cut out the middleman (caa) which takes out a hefty chunk of money that could otherwise go to the research. I know money i send to wpi, for example will be spent on good research. i don't need caa to charge me a lot to tell me that. also Lenny Jason always does great studies. OFFER sounds like the same deal. send the money there and it will go to great ME research without a 'finder's fee' charged. We as patients have been able to much more worthy research opportunities than we have cash to contribute so overall i think the research will prosper more without caa involved.

I'm not convinced of that. Some researchers are going to be unknown names at some stage and would thus have difficulty appealing to the ME/CFS community for money. We need new people coming in with new ideas rather than just the money going to same well-known names. I've no problem people giving direct - I just think it shouldn't be the only means of doing it.

 

[Wonko]

surely you'd end up with the "nicest" researchers (or those giving the best presentations) getting the money - and not the best? not sure the X-Factor approach to research is the best idea - would it really be any different from how things are now?

 

[CBS]

I'm not convinced of that. Some researchers are going to be unknown names at some stage and would thus have difficulty appealing to the ME/CFS community for money. We need new people coming in with new ideas rather than just the money going to same well-known names. I've no problem people giving direct - I just think it shouldn't be the only means of doing it.

I agree. I want someone calling for proposals and I want grants to be provided on a competitive basis and I want new people coming into the field and the notion of seeding new ideas (from new or established scientists) is the only way that things will move forward.

My main point is that for many patients, the CAA and the degree to which they have alienated the patient community serves as a major and tragically unnecessary barrier to the amount of money that is available for exactly this type of research. They are their own worst enemies. I want to provide an alternative that adds to the total available funds (recognizing that it is far from ideal as it is not predictable) and that just might show the CAA how much support is out there if they'd stop an listen to the patients. Right now that does not appear to be happening. The CAA appears to be in a vicious cycle of holing up in their "bunker" and waiting for some big breakthrough to make us all forget the hard times and bad feelings.

 

[Dolphin]

CBS piece was on Sky News (Great Britain & Ireland)

I just got a text from someone that the CBS piece on the spinal fluid
research was shown on Sky News (Great Britain & Ireland) between 12.30am and
1am today. At this time of night some of the stations broadcast US tv for
part of the time.

So great to get good coverage. And great it wasn't a piece on the PACE
Trials.

 

[Dainty]

Here's the story: http://www.cbsnews.com/stories/2011/02/23/eveningnews/main20035610.shtml

For the clip, click on "play CBS video" to the lef to fthe article.

It was GREAT! When I heard Katie emphasize "Chronic Fatigue Syndrome" it put a smile on my face, and then when she used "CFS" as the abbreviation I yelled "YES!" Finally a reporter is getting it right!

The segment was about how there is indeed a physical cause and it is not something imaginary. I don't think PACE was even mentioned.

 

[cigana]

Thanks for posting the link Daisy. That was one of the best ever media coverages I've seen! I love the way the number of proteins flashed up on the screen too to emphasize the point. Great to have this on air only a few days after the PACE being everywhere...

 

[citybug]

Maybe we could write comments now, great story, hope you show some bedbound patients next time (I think this has really been left out of the media) and do a story on the XMRV research by WPI, NCI and Alter and Lo.