Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Jul 27, 2010.
It certainly has a spectacular incoherence about it, this whole thing.
no... the CAA is our best card to play right now... them calling attention to the definition used.... demanding that the CDC use a gold standard approach to ....
making a stink if it doesn't happen....
the problem is... they won't actually play.
the CAA = journalists. As far as I know, they are headed by journalists. They won't do activism. They will pretend... but not actually do.
journalists think completely differently than activists...
journalists tell you a story... activists make one.
The CDC has made the contradictions and logical fallacies within its own positions and definitions so glaring that I think now is the time to call them on it in a big way. None of the positions they have put forward on their redesigned page or on these questionnaires are new, but they have never been distilled like this before nor promoted so aggressively as a guide to clinicians. For some time this "hard line" from the CDC was less obvious on their website, but now it really does have a greater potential to do harm, as doctors will more easily be fed dangerous CDC 'anti-science'.
It won't do any good to direct a sharp set of analytical critiques and protests at the CDC itself; I would think the right target audiences would be officials in the DHHS, elected representatives, and the American Medical Association. The key is to draw attention to the fallacies in the CDC position, and especially to the problems that it will create for clinicians and for public health in general.
We should expect the CAA and the IACFS/ME to assist us in this effort, of course, and should demand real action rather than, say, a mere statement from each. As CBS said:
One thing that needs to be addressed now by the CAA is where Suzanne Vernon stands on the issue of the CDC Empirical Definition, which she herself was involved in developing. It is that definition, with its remarkable exclusion of almost all identifiable signs of physical disease, that is allowing this to happen. It is high time that she not only denounces its clinical application but also its use as a research tool. Such a criticism from one of its original authors would strengthen our case against it. Isn't that a goal the CAA shares with all of us??
My only problem with taking action before the Alter paper comes out is that the story we are bound to is so convoluted, difficult to grasp, that it might seem paranoid. With publication will come a point of reference, a paper by 2 disinterested parties with high degrees of cognitive authority and cachet.
When it comes out, followed by the other positive papers in the pipeline, we'll have a very good basis to start making our case.
The good news, I think, is that the national paper of record, the New York Times, has been watching this story and, I suspect, speaking to Hillary Johnson and the WPI. They will be our allies in this.
While we will never be able to reduce the story to sound bites, the publication of the paper and the other positive papers to come, will give us the ability to construct a new more legible and cogent narrative. What we can't allow them to do, and I include the NIH here, is construct a story and declare 2009-10 year zero and unveil a "new" disease.
If the news breaks in the way George has been suggesting, and if Judy is right that XMRV represents the worst health catastrophe in our history, our voices might be drowned in the outcry. This is a an advocacy problem. We are not merely the canaries in the coal mine but XMRV's primary victims.
My major concern, at the moment, is that the matter of XMRV and its link to m.e. might, as Ruscetti says, be settled by the end of 2010, but that treatment initiatives will languish, trumped by research into a vaccine. If the off the shelf arv's and immune modulators don't work for us, we will need powerful advocacy so that treatment. as well as prevention, is included in the NIH's priorities. The CDC's attempt to get ahead of the story and control its meanings will fail. Its CFS program will be unmasked for the joke and crime it is, but we should keep our powder dry for just a bit longer, until we have a strong, "conventionally" convincing case. Then let them have it.
I think akrasia has a point here. We may soon have a "strong, conventionally convincing case" and strategic reserve of our ammo could be wise.
This is definitely the time, though, to be collecting and organizing the info. Snapshots of the relevant CDC web pages as they slowly mutate would be helpful. A collection of idiot comments by Reeves, which will look even more idiotic soon, would also be good. Then, once the public is looking at us with interest rather than score, dump the whole load of CDC garbage on 'em at once.
Yep. Exactly dr. Y! you cant move an immovable object like the cdc...we have to move what moves (and controls) that object....very high up....and the time really must be NOW - or this re-vamp will be set in stone (as has everything else they have done for 30 years).
to tell the truth, this terrifies me...and i dont know what to do next. (I'd like to see one spot (one location) where jounalists, letter writers, activists, advocates, patients, doctors/clinicians can meet up online to brainstorm quickly!
the way it stands now, ideas (and fury!...and fear!) are scattered all over the net - i'm reading bits and pieces every day (i post and re-post on my fb page...big deal)...but this needs to be in one place to effectively move forward and take action, imo)
also, something you said has been rolling around in my head - "...problems this will create for clinicians...".
I wont see my doc (dr. john chia) until late august (to ask him about this in person)...but i keep thinking about how HE will see this. after all, his entire practice is devoted to researching, dx'ing and treating me/cfs patients who all are dealing VIRUSES...in particular - enteroviruses.
If i wasnt lucky enough to have already been referred to (and dx'd) by both chia (an infectious disease specialist) and by my neurologist, 15 yrs ago...im certain that my current primary care doctor would NEVER send me to anyone but maybe a Rheumatologist, psychologist...and maybe a pain management clinic (yikes!)....not now, with these very cut and dried recommendations by the cdc...which is where the ins co he has to answer to - and is watching HIM so closely! - sends him for info to dx!
My HMO ins. WILL DICTATE THIS. PERIOD.
I posted a few months ago that i got a questionnaire (out of the blue and probably because my new primary care doc was pressured by my ins co...possibly in response to the cdc's re-vamp and guidelines)...about referring me for CBT and GET! I tell myself that no one can take away my ME/cfs dx...15 years after the fact (along with my SSDI awarded in 2000)....but I wonder?
so now what? j
If the CDC is casting CFS as a psychological problem my reaction is what is an infectious disease organization doing messing around with a psychological illness? Either they believe it's infectious or not. If they don't want to deal with it as infectious disease, they shouldn't be involved in it. It's a mis-allocation of resources issue. This game of being 1/2 pregnant has got to stop.
My only demurrer with the astute Yes is that the CAA, because of their "collaboration" with the CDC might be fatally compromised on the credibility front. If I were a reporter I'd be asking why they accepted money and worked on the "Faces of CFS" project if the politics and the evolving definitions, from Holmes to the Empirical definition were so deficient and destructive to their populations.
The IACFS/ME has been absent as well. They never recognized that part of their job description was to offer a well reasoned, unflinching advocacy. All intelligent, decent, well meaning, people but of no political use. Can they find their voice? I don't know. I guess I don't think so.
I'm afraid, we're on our own. That's why the campaign has to be brought directly to the media and congress.
brilliant point fg !
Actually, I wonder, I speculate
"The U.S. Centers for Disease Control and Prevention (CDC) has announced that Dr. William C. Reeves, head of the agency’s CFS Research Program, will be taking a new position within the agency effective Feb. 14, 2010 and that he will no longer lead the agency’s CFS research. Dr. Elizabeth Unger will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services." on CAA fb
So - in Jan it's announced that Reeves is moving to "Senior Advisor on Mental Health Surveillance"
in July - the CDC revises it's website, changing it so that the focus is on the Reeves CFS definition (the only one to include psycchiatric illnesses), features Reeves paper on childhood trauma and new defn of CFS, now excludes biophysical and proposing psych treatments
Are they getting ready to move their newly created "CFS" to continue under Reeves over here?? - while XAND would replace CFS as a CDC dept on it's own as an infectious disease? This would double the funding or more, empire build...........
I wonder why to begin with that
CDC’s Office of Surveillance, Epidemiology, and Laboratory Services
Public Health Surveillance Program Office
has a Senior Advisor for Mental Health Surveillance to begin with.
Are they implying that Mental Health is an infectious disease as well?
Reeves questionnaires in clinical settings
Mary Schweitzer to CO-CURE today
I have an apology to make here. Tom Kindlon wrote that he could not find the reference on the website to Reeves' questionnaires.
And when I looked, neither could I. I tried to pull up the next-to-last version of the website, but the caches have been deleted. They are even inaccessible on the Internet Wayback Machine. I am looking for the source for my own sanity (brain not quite as good at four months on Ampligen as I thought), but I decided to call off the search for my memory and go directly to apology.
I am very sorry.
The good news is that it is not there. The CDC does not recommend that clinicians use the Reeves questionnaires to diagnose the disease. And the entire article introducing the Fukuda definition has been restored to the section on case definition.
The bad news is that the new website remains, as several have already noted, much more devoted to psychogenic theories than biomedical. The toolkit for healthcare professionals emphasizes CBT and GET. The first page of the website for health care professionals emphasizes professional counseling and cognitive behavior therapy, and the website specific to treatment goes on to add graded exercise therapy before mentioning "Symptomatic Treatment" - my favorite part of "Symptomatic Treatment" was:
"Memory and concentration complaints are two of the more distressing symptoms reported by people with CFS. Relaxation and meditation training and memory aids, such as organizers, schedulers and written resource manuals, can be helpful in addressing cognitive problems. Stimulating the mind with puzzles, word games, card games and other activities may also be beneficial for some patients."
(see <a href="http://www.cdc.gov/cfs/general/treatment/options.html">
The bibliography remains heavily loaded towards disproving biomedical information and emphasizing psychogenic.
Further bad news: the CDC still uses the Reeves questionnaires in research - as in the just-published article where they could not find XMRV.
But they do not recommend it for clinicians. I apologize for the error.
I have brought this up many times myself.......can't figure out how this extremely obvious fact continues to get overlooked
Tracking it is an Awesome idea! Screen shots and documentation are the way to go!
Also..; who knows, maybe they just want to mail everything out before they have to throw it in the trash in six months ;p
Maybe Mary was testing everyone's reflexes. :Retro wink: Or the CDC is trying to drive us slowly insane. Many thanks to Tom K for the fact-check.
Although the CDC apparently does not recommend these questionnaries for clinicians, they have still changed the tone of their site to more aggressively deny the biomedical findings in CFS research, as well as the established history and understanding of myalgic encephalomyelitis. This creates practical problems for us because the CDC is generally the primary, if not only, government source for information on most diseases. It is often thought of by medical professionals as representative of national policy on any given disease. Perhaps more importantly, insurance companies (as Jackie pointed out) as well as Medicare and Medicaid use the CDC position on CFS to deny coverage of tests and treatments. As long as the Reeves Definition remains the operative one at the CDC, insurers will have an easy time denying coverage of tests, etc on the basis that they are not 'officially' recognized as having clinical significance in CFS, or that there is 'no consensus' on it.
We have been a patient population without a clearly defined disease for decades thanks to the CDC; their recent moves suggest an intensified effort to separate their term CFS from anything with a physical basis. That could leave us without even a hint of an 'officially' recognized disease at all - and increases our vulnerability to psychosomatic labeling.
Mary may have made an error, certainly none of us have been error-free with this illness or before it. No biggie.
But mostly for fun, I have two theories why the page may have been up and then quickly down:
1. More fun, but less likely --- The CDC was checking to see how carefully we are watching them and how much they can get away with. This theory has the "advantage" of allowing for evil minions and conspiracy theories.
2. More likely ---- IF the control of certain webpages is within the realm of individuals in the respective departments, then Reeves' crew may have announced their intent prematurely and without the approval of highers-up. Somebody may have pointed out the change to people higher up in the hierarchy who decided this webpage change was not politically expedient at this time and restored the previous version of the page. This doesn't allow for the fun of evil minions and conspiracy theories, but does provide amusement in speculating about panicky scrambling and wrist-slapping at the CDC.
These are NOT facts. Just a few amusing ideas to entertain yourself with while we wait for the Alter paper to be published.
Kafkaesque is the word I think we are looking for.
**sigh** I never could "get" Kafka. Maybe that's why I'm having trouble getting any kind of grip on what is going on at the CDC.
He he. Just think, totalitarianism + Catch-22 + nightmare, and you are pretty close.
OH! And I've been thinking I didn't get it! LOL!
I'm still heading for the door marked "Science". All this other stuff, so messes with my mind.
A mental state examination of individuals with fatigue should focus on observed behavioral features in addition to symptoms reported by the patient. These include psychomotor slowing, cognitive impairment, odd interpersonal behavior and angry/hostile responses. In addition, it is important to evaluate the individuals risk of suicide.
Health care professionals might consider using tools to assess frequency and severity of individual CFS symptoms and their combined impact on function. Several instruments have been developed, adapted and/or validated for CFS, including:
CDC Symptom Inventory (Wagner et al., 2005) and SF-36 (Ware and Sherbourne, 1992) are comprehensive, validated instruments.
Multidimensional Fatigue Inventory (MFI) (Smets et al., 1995) is a 20-question assessment of the broad impact of fatigue on quality of life over the prior month.
The Wong-Baker FACES Pain Rating Scale (Hockenberry et al., 2005) is a well-validated tool for documenting pain. Visual analog scales and verbal rating scales are widely accepted for documenting pain and other criteria, such as fatigue or symptom severity.
Bells Disability Scale (Bell, 1995) and the Subjective Functional Capacity Assessment (Lapp, 1993) were developed by physicians for use in the clinical setting to quickly document patient status at each visit.
A combination of the CDC Inventory, the SF-36, and the MFI may also be helpful in diagnosing the syndrome (Reeves et al., 2005).
Well, I can certainly see where the CDC comes up with "angry/hostile responses" since they have continually provoked such responses from CFS patients (aimed at the CDC), due to their horrid treament of patients!! If they actually treated us properly, researched thigns properly, and spread awareness and education, then I would bet that they would not see such responses anymore. Those responses have nothing to do with the illness itself and everything to do with yrs upon yrs of contemptuous treatment.
You can also try a Google Site Search
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