Discussion in 'Action Alerts and Advocacy' started by Aftermath, Jun 27, 2009.
From a recent e-mail I received:
I just sent a brief e-mail. I urge everyone else to do the same.
Hit them hard!
I just put out this response on my blog- check it out.
Last Chance at the CDC: the CFID’S Association’s Critique of the Five Year Plan
Your opportunity to impact the CDC's CFS research program ends after tomorrow (June 30th) The CFID’s Association of America has just released a critique of the five year review that’s longer than the draft plan itself. It’s a very impressive forward thinking document that’s also a great resource for building your own critique of the program. Below is my take on the CAA's major points.
Simply e-mail the CDC at CFSResearchPlan@cdc.gov to give them your input.
Program Lacks Innovation - perhaps the most damning criticism of a research plan is that it's just not doing very good research. Their main research project will use brain imaging techniques to assess the effectiveness of two treatments (CBT, Ampligen) that we already know are not the answer to ME/CFS; the program is not leading this field in innovation, it’s leading the field in picking up the pieces of other research efforts.
In the last year or so the WPI Institute claims it has documented a unique subset of patients, the Pacific Fatigue has found a reason for the exercise/activity problems in about half of ME/CFS patients , Dr. De Meirlier has evidence of abnormal gas production in the guts of ME/CFS patients and the CDC has…….. found that an increased incidence of child abuse is present in its bloated sample of ME/CFS. The factors the CDC currently believes contribute to ME/CFS include obesity, poor nutrition, a sedentary lifestyle, maladaptive personality styles, child abuse. Is this the kind of program that should be leading the discussion on ME/CFS?
Pie in the Sky Plan - The plan promises everything; an international network, effective physician education, effective public health outreach but when it comes to the nitty-gritty of accomplishing those things - of producing, as the CAA puts it, an ‘actionable plan’ - there’s simply no there there. It’s astonishing that after all the public outrage over accusations of financial Dr. Reeves was allowed to deliver a plan that had no spending component. Check out some incidences of possible waste in the program.
• The 2004/5 Georgia group of patients which was established at great cost has apparently been lost because the CDC never followed up on them in a timely manner. Dr. Reeves noted that after a few years without follow-up the group is essentially lost yet that group has been out of touch for four/five years now. That group was never very big to begin with - losing a significant number of them would be very costly - yet it appears that that’s what’s happened.
• Dr. Reeves stated that the in hospital costs of the Emory study would be from $1-$2 million yet the program has already cost five a half million dollars on it. The CDC has already spent significantly more money simply finding its patients for it Patient Registry (over $2 million dollars) than anyone outside the CDC has spent on an entire CFS research project - in fact it’s not even close.
• The CDC bet the boat on the Empirical Definition. Before ensuring that the definition was accepted by the research community the CDC used it as the foundation for every research project over the past six years.
Researchers get raked over the coals for endangering a single study but this mistake put dozens of studies at risk (as well as the studies for the forseeable future). Yet there seems to have been no accounting for this enormous error. The CDC has now admitted the definition was a failure.
More Dharma Initiative Than Plan - most plans are strictly defined; they have a mission statement, goals, and overall strategy, a tactical plan to carry out the strategy and outcome measures to evaluate how their effectiveness. Instead of a rigorous plan t he CAA charged that the CDC presented a glossy, jargony model better suited to the Dhama Initiative than a rigorous scientific environment (!).
“Speaking purely theoretically, this plan appears better suited to an independent, privately funded research institution, a “Dharma Initiative” of sorts.”
“While its language emphasizes collaboration and partnership, its design reinforces the isolated conduct of one small group of investigators, working at the direction of the branch chief without connection to colleagues inside the agency and at other institutions.”
Not a Winning Team - Even if the program had the money they need the CAA asserts they wouldn’t be successful because they simply don’t have the expertise. The team is tasked with education and public health outreach but has no training in dealing with either. In fact neither they nor their superiors have any training in dealing with a chronic disease like ME/CFS. Although the program is housed in the division that works on acute infectious outbreaks the CFS team hasn’t done any serious infectious (or immune) research in over ten years. Indeed the CAA pointed out that there is not one reference to ME/CFS as an infectious disease in the entire strategic plan. The program is currently managed by virologists who have morphed into endocrinologists, neurologists and psychologists. Is that a recipe for success?
Move the Program - How about support? If you were a virology department head would you have any interest in funding a non-virologic disease? Apparently not as funding has declined by 25% in the last ten years. While the program sticks out like a sore thumb in the Rickettsial division it would very naturally fit in the CDC’s chronic illness division that also contains such diseases as lupus and Parkinson’s. The fact that it's still sitting in a division that doesn't know what to do with it s yet another indicator that the CDC doesn't give a darn about this disease. Moving the program takes work and resources and those are the last things the CDC apparently wants to expend on CFS.
Collaboration Needed But Not Likely - Dr. Reeves cited several instances in which the program is collaborating. The CAA did their due diligence and went and talked to those ‘collaborators‘ . This is what they report:
“Investigators with whom CDC has reported working were consistently surprised to be listed as collaborators, and replied that either their own inquiries had been unanswered or initial interest from CDC was short-lived and not acted upon. The branch has a long history of burning bridges with and otherwise distancing individuals who express differing viewpoints. Only those held in favor are considered as potential collaborators.”
Yet almost half of the CDC’s plans in the draft review require collaboration for them to be successful.
Ultimately the CDC’s lack of interest in much of the research occurring in the field is the most damning criticism the CAA will levy. It's terribly disillusioning to sit down and ask a researcher if CDC has shown any interest in their work and to have them actually laugh out loud.
“All of the preceding objections culminate with this point – CDC’s insularity and lack of cooperation with other CFS researchers (including those whose studies have been funded by NIH) have impeded progress that might have been possible under a more unified approach”
If you agree with these points use them to critique the most important ME/CFS research entity on the planet. We all deserve better.
Again, simply e-mail the CDC at CFSResearchPlan@cdc.gov to give them your input.
My CDC Program
Check out this blog on what 'My CDC Program' would look like.
CDC Quickly Breaks First Promise
CDC/CFSAC BLOGS #2
This weekend, Labor Day, marks the traditional ending of summer in the US. It will also mark the first promise broken of the CDC’s Five Year Strategic Draft Plan. Six months ago Dr. Reeves promised to hold an international conference on the management of chronic fatigue syndrome (ME/CFS) in the summer of 2009. That was the last we heard that project. (Which suggests that we’d be lucky to get that conference in winter of 2009. Can anyone hear summer of 2010?)
Its even a little worse than that; Dr. Reeves has been promising to hold this conference for several years now and admitted during a recent CFSAC meeting that it was long overdue. The CDC fully agreed that the program has not been communicating or collaborating with the research community and promised to do better. Yet in their first opportunity to demonstrate that the words on the strategic plan for more than just words on a paper they laid an egg.
Business As Usual - One might think that given the almost overwhelmingly negative response from the patients, support and professional groups that the CDC would at least make some effort to appear to honor their plan; that if they were going to go back to business as usual, as many suspected, that it would at least take them a little while to do. But it was back to square one all over again. The new leaf the program was going to turn over is as dry and dessicated as the old one.
Some people with contacts in the CDC has suggested the plan was always a show; that Dr. Reeves never intended to honor it, that it changed little anyway, and that as soon as the clamor died down nothing would change. Indeed the plan itself - bloated with promises a program of Dr. Reeve’s size could never hope to accomplish - was hard to take seriously. The fact that the CDC entered the planning stage under a cloud of financial mismanagement yet produced a plan devoid of any financial elements suggested that the CDC isn’t listening anyway.
Programs operate this way only when we let them. Moaning and groaning about the CDC amongst ourselves alters nothing at the CDC. We’ve mostly been content to satisfy itself with lofting verbal projectiles that never come near their target. On October 29th, 30th, though, we have a chance to launch verbal bombs that will land right in the CDC’s camp. Allindications are we really have a chance to force change.
The Big Event: For the first time the patients, the support groups, our professional organizations and the research community is united in their call for change. On October 29th, 30th at the CFSAC meeting we have the chance to come together and produce a voice we’ve never produced before.
The CDC will present their Five Year plan for CFS. A senior CDC official will be there. IACFS/ME Board Members will be there. Researchers will be there. Patients need to be there as well.
Right now the CDC is turning a deaf ear to everyone who’s asking for change but the reed they’re standing on is getting thinner and thinner. I say let’s produce a roar that even the leaders of the CDC cannot ignore. This constellation of factors; patients, patient groups, professional organizations - will not likely come again. If there was ever time to seize the moment; that time is now.
M.A.D. (Making a Difference) About ME/CFS - Let’s make an indelible impact on that CFSAC meeting. A group has been set up on the Phoenix Rising Forums called M.A.D About ME/CFS that will focus on finding ways we can make an impact at that meeting.
Posted in Uncategorized
The Coming Winds and the Untouchables
A 30-year DoD/IRS retiree and I recently talked about whistleblowers over breakfast. Whistleblower protection itself is seldom enforced. Most, whistleblowers, like otherwise unwanted federal employees, can have their lives made miserable enough - stopped promotions, demotions, or outright defacing and harassment - until they leave or are rendered impotent. Once you get on the bad side of enough people, and ultimately the "right" person, it's not all that different than corporate America "upholding" the ADA.
Now, our champion in Atlanta isn't still where he is simply because of whistleblower protection. I understand his father was involved in CDC's very establishment, so, no, he wouldn't be any ordinary politician; and he's got tenure and rank on his side, along with the reputations of those who've kept him in place. Furthermore, beyond Emory, I'd suspect he's got connections in industry, insurance companies, and perhaps the military. The public health is the last of any of these parties' concerns.
Very discouraging, right? Yes. For decades it was just as discouraging for blacks to go anywhere whites could, until someone embarked on a crusade of non-violent protest, while another decided not to give up her front seat, while another just shut up and played baseball (of all things). It wasn't the perfect storm, but kind of an uncoordinated blitz from all corners, if you will. The American landscape hasn't quite been the same since.
(If I sound naive, try putting yourself in the shoes of a healthy black person facing death nonetheless by beating or a lynch mob, with no help in sight. Bear with me.)
In our case, I sense the tide rising against certain interests, slow in some ways, but quickly in others (even if not quick enough for our liking). WPI encourages many of us. WPI, however, hasn't quite given up on the CAA or Dr. Vernon, but rather embraced them. Is this by political necessity?
Oddly, my latest encouragement came by way of reading the last CAA newsletter, of all places. I couldn't care less about the traveling photo show (old news), new psychiatric drugs, etc. However, a transition is evident beyond a the new look if one bothers to read it. Not only does their research sound progressive. Their recent participation with NIH at Cold Harbor is significant. That means CAA hasn't folded under pressure and its own past failures, and that part of our government is, at least privately, getting back on board. (Add them to the National Cancer Institute.) Perhaps this Dr. Vernon really has taken off her CDC hat.
And we might say, so what? The NIH has been screwing us for 25 years. Well, according to that public newsletter, another thing being explored is the possible combination of infectious agents and vaccines.
If any industry was formerly "untouchable," it was the vaccine industry. The lab of the infamous Dr. Martin - shut down (for better or worse). The first major American autism lawsuit - lost. The MMR hearings in the UK - no effect, especially with the knighted Dr. Roy Meadow on the state's advisory panel. (Age 70+, Dr. Meadow is the inventor of Munchausen Syndrome.) It remains powerful enough that some perceive an attempt to ram the swine flu vaccine into our shoulders next month, especially in Massachusetts. The "chronic lyme" openly cited in vaccine and test patents has likely been perpetuated by protectionism for the vaccine industry.
However, in November 2008, our government issued a formal 465-page report stating that Gulf War Illness was real, that vaccines were a major contributor. 'Took 17 years for that breeze to blow in, 10 after vaccine manufacturers were slipped protection through the Patriot Act while quietly removing Thimerisol. Very tragically, this was too late for too many people. Maybe, however, it's happening in time for a lot of us.
Regardless of whether vaccines are involved, that this is even being postulated rather publicly now, and not just by lone sufferers in cyberspace, indicates that someone - the vaccine makers, insurance companies, someone among the former untouchables - is feeling the heat where it counts for them. They either sense a massive profit falloff coming, a mass-lawsuit, or both, as more of us seem to keep on coming.
Which brings me back to our untouchable "whistleblower" in Atlanta. Whether it's Richard Cooke (the Challenger 'blower), Douglas MacArthur, Colin Powell, Donald Rumsfeld (who, if not Cheney, likely got Powell "fired" from State), or Manuel Noriega, it comes down not just to who you know, but how useful you are. One someone proves more of a liability than an asset to enough people, the "right" people will likely have them removed.
And CDC's misinformation campaign will become less and less of an asset for anyone - unless it's simply allowed to remain in place as is.
Our goal, pivoting around October CFSAC but not limited to it, should be to remove the "Untouchable" Dr. Reeves, and make sure he's not replaced by someone like-minded, i.e, Dr. Jim Jones. Instead of jail, we might have to settle with him flying a desk for the Forest Service, or retirement with babes and beer on a beach. The important thing is that he's out of our way.
Why not just forget about the CDC and simply focus on research?
The CDC has to have a policy on any significant public health issue, and they've got the public bullhorn, in the press, the medical world, the school systems, etc. Stepping outside ourselves, we could learn a lot about this effect from Ryan Baldwin, except his foster home in North Carolina allows no visitors. Thinking of calling CNN with your outrage? Where do think they draw their psychiatry experts from? There are the reams of "instructional" crap on the CDC web site, other misinformation, not to mention the "definition," that all has to be brought down before education is facilitated, parents get the cooperation to help their sick children "attend" school, etc.
To say, we'll just wait and let if fall down, is presuming a lot, and gambling on a lot of lives, including ours, by the day.
I don't think any one person can be tapped on the shoulder to effect this change. No single doctor, or poll, or petition, will make this happen, nor one pivotal meeting of bureaucrats with semi-compromised doctors depending on grants. It'll require participation and an outcry from a silent patient community. Unified? If it's unified in the form of an all-out blitz from all corners, that may prove unified enough - as long as the quarterback goes down and the final score's in our favor.
The coming CFSAC in late October is just one of plenty of venues, which include Congress, esp. the health subcommittees; Dr. Sebelius' President Obama; and the media. We've got a lot of points to argue:
a) We're sick as hell.
b) We're costing the country money.
c) We're costing insurance companies and employers money.
d) There's only more of us coming, seemingly by the day.
e) There's enough of us seemingly dying each year, prematurely.
f) The government can't have NCI, NIH, and other public entities publicly exploring viruses and vaccines on one hand while the CDC calls it a non-problem. This is opening the government to one hell of a lawsuit.
g) By perpetuating the false notion of non-distinct syndromes (CFS/ME, fibromyalgia, lyme) the CDC has promoted ignorance in the medical community and increased the burden on our doctors, further costing insurance companies and public assistance funds.
g) Their current "CFS" leadership their has compromised the integrity of the CDC, if not the entire public health apparatus. There's simply no reason for the public to trust these authorities, whether the crisis is swine flu, bird flu, bioterrorism, etc. If nothing else, they've made their colleagues doing good work at the Center look like utter incompetents.
h) CDC's program is slowing treatments and advancements in medicine. A course change is in the best interests of insurance companies and our pharmaceutical industry. There's big money to be saved, jobs to be created, and money to be reaped, by encouraging research and the development of pharmaceuticals to fight our infections and modulate the immune system. Moreover, the advancements are likely to expand into other fields of medicine and compound the benefits.
Overall, the CDC's 5-year Strategy for "CFS," and its leadership, have proven far more of a liability than an asset to many interests, and will continue to be so without a major change.
A final note: I didn't write this diatribe for debate's sake. Don't expect an answer to your counter-arguments. As Robin Williams repeated in Good Will Hunting, "Time's up." Better to concentrate your energies by writing your public officials or local media outlet, whichever you choose.
The wind's blowing, and each of us has to decide whether to catch that wind and move forward, or sit bobbing at sea waiting for a rescue until we starve or sink. We each can choose to lie down and die from our illness, taking our families and future generations with us, or stand (sit) up and speak out. It's up to each and every one of us.
CDC CFS Public Health Research Program 5-year Strategic Plan (October 2009)
[I'm highlighting a couple of things which caught my eye. All of #4 (Workshops and International Research Networks) I think is important. The most important issue at the moment in my opinion is that the empirical definition for CFS (Reeves 2005) continues to be used. The version on the website in rich text is easier to read. Tom]
Thanks for finding and posting this here.
I totally agree with you; the CDC's continuing use of Reeves' empirical definition is the worst problem we face.
Despite your petition, the IACFS/ME statement, the CFSAC recommendations, the CDC is not backing down from that.
I will have to read this more closely, but here's the one little glimmer of light I found in the plan:
◦Develop a funding opportunity announcement to explore the application of novel pathogen discovery approaches to existing, well-characterized clinical specimens
Although unfortuntately the CFSAC didn't make specific recommendations on the definition issue
Well spotted. Sounds interesting alright.
XMRV is mentioned only in passing
Note it is given the same weight as HHV-6.
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