Well, now I've attended one of these two-day conclaves, and not by helicopter but by riding Amtrak to and fro over the bumpy rails that line the Eastern Seaboard. I find that I am still trying to assimilate the event, which certainly was unique from all the meetings that preceded it yet had, I suspect, a lot of familiar elements, too.
Those familiar elements included airport-style security, a panel of seemingly heartless bureaucrats, a Kleenex box discreetly placed on the otherwise Spartan table where members of the public sat to deliver testimony, and a fleet of uniformed Public Health Service employees standing at the ready to escort civilians to the bathroom. The sanctity and safety of the Hubert H. Humphrey Building must be maintained. Nevermind the civilian safety that’s been jeopardized in some part by this committee’s history of listlessness. But more on that in a minute.
Is there another standing committee on Capitol Hill where Kleenex is nearly as essential as microphones for those who testify before it?
Twice a year, the “sif-sak” committee emerged from the mists as ephemerally as Brigadoon (without the music or the plaid) to provide a sound-proofed room, figuratively speaking, where all the distress and despair and pent-up rage could be expressed. The government reps on the committee, the “ex officios,” sat there and took it, dispassionately. I read one account of this committee a few years back in which Bill Reeves reportedly swiveled in his chair and turned his back on the proceedings. Over a period of two days, they swallowed the hue and cry in one gulp—until the next time.
And wasn’t that the point? The committee was a human shock absorber, sucking up the bothersome reverberations of an abandoned class of Americans created by the government itself: those tortured souls who testified and the million-plus people they represented. And you could add millions more if you were counting children, siblings, spouses and friends of people who were sick. Once the wildly unfair, circular nature of the game became clear, attendance waned over the years. Sif-sak was for the innocents, the newbies who thought the government was serious about helping—or for the die-hards who simply refused to let the nihilism swallow them up.
And the testimony began to get tougher, more aggressive, more rhetorical in nature. “Why does this committee exist?” Kathryn Stephens finally asked last May. The answer was obvious by then; Stephens was just crossing the t’s and dotting the i’s for the historians.
A bubbly, brainy woman I met two years ago, Mary Schweitzer, was present at this recent meeting, but she was silent now, in a wheelchair and dark glasses; she sat impassively, watching the proceedings. Until now, she's been one of those die-hards I mentioned. I wouldn't presume to wonder what her thoughts may have been.
Did the committee ever do what it was supposed to do? Grab the attention of the federal health executives and effect change? Its very ineffectiveness, its refusal to implement, coordinate, inform, undertake, rebuke, transform, or facilitate was its trademark and signature style. (I am, of course, exempting here the many voting members of the committee, civilians more or less, wonderful people who tried valiantly over the years to make the committee work.) To me that was always the absurd, tragic-comedic nature of this entity, and all of that was on full display last week.
But how was this CFSAC meeting different from all the others? I mean aside from the fact that it was the second to be podcast on the Internet, available for anyone with a working computer to view in its entirety?
Well, as we all know, October 8, 2009 was our Anno Domini. Absolutely everything has changed since then. We’re no longer wandering in that quarter-century stretch of desert I’ll just call “Before Judy Mikovits,” or B.J.M. There’s a reason to be curious, even excited, about the future.
One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.
I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.
Okay, okay, I know it’s politic right now to say and even think that there is still doubt, that the finding needs to be replicated, and then replicated again. There will be hold outs, people who say it’s another “passenger,” as if a close genetic relative of a mouse leukemia virus was just another weird fungus. Forgive me, I find the argument too tedious to wage in this space, so I’m just reporting the controversy. I would suggest doubters explore how gammaretrovirses work, learn about the co-infections they cause, about their neurological tropism and the cells they infect in the brain, about the cancers they cause. I am so very on board with this. In Judy I trust. It is as real and believable to me as my understanding of gravity.
From the ground, I can tell you that Day One in the nation’s capitol had a kind of chaotic, electric quality that seemed to build as the minutes passed. By the time Dr. Wanda K. Jones, a white-haired steel magnolia with a brooch from the Office of Research on Women’s Health, tried to prevent the petite, manicured Annette Whittemore from speaking for five minutes, I thought people around me—those with the strength—might start throwing chairs.
Dr. Jones has a stentorian voice that could tear through a military tank like depleted uranium. At one point in the proceedings, she was using that voice to tell the founder of the Whittemore Peterson Institute to sit down and shut up, in so many words. She is the Designated Federal Official in charge of Roll Call and “Housekeeping,” tasks that apparently include pole axing anyone who tries to testify out of turn or if they weren’t on the list to testify in the first place. Whittemore was on the wait list and out of turn.
“I will have to invoke adherence [to the list]” Wanda thundered, not unlike the Wizard to Dorothy. “You can submit your remarks in writing.”
Did Wanda not understand? Did she not see the tall, blond man in an expensive-looking pale blue suit standing in the rear—a man named…Harvey? Could she not recognize a movie star power couple when she saw one? Did she not know that, together, they have pulled off one of the most amazing coups d’etats in the history of American medicine? That they probably have changed the economies of entire nations and, more particularly, the economy of Nevada? And more pressingly that everyone really wanted to hear what Annette Whittemore had to say and could have cared less at that moment about a list?
One thing Wanda is not: a suck up. She reminded me of the drill sergeant in "An Officer and a Gentleman." And just as in the movie, she would be revealed, eventually, to be lovable, but only on her terms. Just as I would not wish to be caught in her crosshairs, I would trust implicitly Dr. Jones’ judgement were she to mediate, say, a major labor dispute.
“I will send my comments to the committee,” Annette W. said, keeping her cool.
Just when the tension seemed nearly unbearable, chairman Dr. James Oleske stepped-in.
“As chair, I’ll take responsibility for any negative consequences,” he said at last, ending the suspense and earning applause.
Dr. Jones could not have been thrilled (or maybe she was thrilled) by Annette Whittemore’s comments, which included the following, “X-associated neuroimmune disease is NOT a woman’s disease. This disease must be addressed by NIAID and NCI and any other NIH institute” with the expertise to investigate an infectious degenerative neruo-immune disease, a prescription that leaves the Office of Research on Women’s Health out of the loop entirely. Maybe there will be room for the ORWH staff in the New Order, but somehow, I think not. That doesn’t mean Wanda isn’t a formidable person, one I would want on my side in any battle. In some parallel universe where women have equal standing with men, a person like Wanda might be running the NIH, or the Marines. And if she, too, got on board with XMRV, there's no telling what might happen.
Dr. Jones’ brief contretemps with the Whittemores came shortly after the committee had sat, motionless, through a brilliantly economical, understated presentation by Dan Peterson. The latter is a war-horse. Once the Bob Woodward of this disease, he has become over the last quarter-century someone with the international gravitas of a Winston Churchill. And as his time before this committee ticked by, leaving everyone holding their breath, I was struck, as everyone must have been, by the cosmic justice of the event, a moment both bittersweet and historic.
Peterson was at the end of a rocky, desolate trail he has walked for two and one-half decades, a trail littered with the bodies of suicides and myriad others he struggled to save, a trail lined with haughty federal scientists who seemed unable to either grasp or think logically about what he was telling them. He had come to the end and he was still intact, still unbowed, indeed, abundantly gracious. They had to listen to what he was saying. Finally. In fact, they were hanging on his every syllable.
Given the culpability of the Centers for Disease Control in the current fracas—a fracas the Department of Health and Human Services is probably hoping the general public simply won’t notice given the recession, balloon boys and H1N1—Peterson’s restraint was all the more remarkable. He got a few licks in, whether consciously or not, but if you weren’t paying attention, they might have floated right by. While discussing the topic of lymphomas and other cancers in his Tahoe cohort, he mentioned Jerry Crum, who died of lymphoma in 2008. WPI had been able to grow XMRV from Crum's blood, frozen in 1984 during the first year of his illness.
“We were able to take serum frozen in 1984—at the time I asked for the CDC’s help with this disorder—thaw it, and infect cells [with XMRV] and that is very dramatic to me. It's somewhat frightening,” the doctor continued, "that you can take blood that's been frozen for twenty-five years and obtain active infective virion."
An aside, a parenthtical phrase setting the time frame; Peterson didn’t even have to mention it, but he did. Jerry Crum, and by inference the other patients in that outbreak, was fulminantly infected with XMRV in 1984, the year Peterson had asked CDC for help. Had CDC actually helped when he asked in 1984, maybe it would have been the CDC growing XMRV out of that frozen blood, not the Nevadans, and maybe it would have happened a decade or two ago.
When Peterson ended his presentation, the government panel at the center of the committee sat like stunned beasts, but the rest of the room erupted in applause, eventually standing up; Peterson turned to this audience and rose momentarily to acknowledge their gratitude. As stated, this was a different kind of CFSAC meeting.
The doctor’s discussion of the Science paper and its meaning was followed by an equally frank discussion of gammaretroviruses, and XMRV in particular, by the professorial--in the laid-back collegial sense--John Coffin, who is one of the deans of American retrovirology and a member of the National Academcy of Sciences. Coffin had been invited to the meeting by Dr. Jones less than 24-hours before.
I recommend the following link . If you go there, you may watch both of these speakers in their entirety.
The era during which everyone kept saying and doing the same things over and over, generally achieving the same hapless results, year after year, to the degree that nihilism long ago replaced hope, is no more. Almost overnight, that’s become ancient history.
This story is no longer the nicely-contained narrative it once was, with obvious bad guys and good guys and people in a nebulous middle. Already the cast has grown beyond counting and is getting bigger by the day. The characters from the original narrative are struggling to find their footing in a strange new landscape. (That’s not to say anything about the activities around this disease have ever been less than strange—the CFSAC committee being exhibit A—but after 2.5 decades, they were strange in an old familiar way.) Among scientists and clinicians, the terrain is shifting. Entirely new and surprising alliances are being formed with every passing day. Who will be outmoded? Who will manage to move foward with the times?
If scientists at the National Cancer Institute ultimately show sustained interest in XAND, it’s going to be because the disease leads to cancer in some patients. Let’s hope NCI stays interested. The alternatives don’t seem as promising—and yet, it’s early days—not for us, it couldn't possibly be any later for most of us—but for the scientists who are suddenly fascinated by the emergence of the third human retrovirus. Anything could happen.
A bustling 21st Century universe without specific coordinates has emerged just outside the door to the sickroom. People you’ve never heard of in high posts at federal agencies are scheduling conference calls among themselves and federal contractors and grantees on both coasts for updates and progress reports. The deadlines are break neck. As I write this, seventy-five scientists—real ones—are in Cleveland, where XMRV was first identified just three years ago, working to figure out what needs to be done next, and how, and by whom. Such is the sense of urgency and genuine excitement, even joy.
I only wish I could report that the sense of urgency and the reved-up, full-bore, this-is-what-we-do-best, money-is-not-an-issue activity was all about a disabling, life destroying disease, ignored for a quarter century. As far as I can tell, at this early date, most of it is not. It’s about everyone else who may be infected with XMRV. It’s about the four percent, not the 99 percent.
I’ve spoken to a sampling of people from this high-charging world. I respect them. They are not incompetent or ignorant people, for a change. They have no overt biases; they’re open to new information, even if it’s surprising. Little could have surpised them as much as the relationship between XMRV and CFS; now, they're ready to believe anything, provided the evidence is there. But as regards XAND as a clinical entity, some of them may still be on CDC-time.
What I’m hearing, and from the best minds, are comments like, “At least we’re not dealing with an epidemic.” Or, “At least it’s not spreading.” Or, (compared to AIDS), “Clearly this isn’t as serious.” Or, “At least there’s no evidence anyone has ever gotten CFS from a blood transfusion.” Say what? Or, “At least we know this isn’t a new disease—people have reported the symptoms of CFS since time began—we just gave it a name.” Or, from the same person, “At least this isn’t like West Nile Virus!”
Nevertheless, this is not to say that a backwater disease, the butt of late-night TV humor for nearly three decades, isn’t also suddenly Job One for what are likely dozens of patent rights attorneys, several multinational pharmaceutical firms and diagnostics labs and some very prepared scientists in the nation’s federal health system, not to mention academia. In sum, the plot has shot off in a dozen different directions and money—“zillions” as one scientist described the amounts that may be in play in the future—is driving the story line. And maybe that’s the only thing that hasn’t changed.
There's probably a window here, with the CDC scrambling about in disgrace, trying desperately to regain its authority in this disease, wherein the science of XAND might be communicated properly to this upper-echelon crowd. The WPI will be critical to the endeavor. The eyes of the world are upon them; they have enormous credibility right now and maybe forever.
And a final word about the CFSAC. In this topsy-turvy period, the future is up for grabs. If XAND is elevated to the status it has always deserved, the CFSAC--if it is not dismantled to make way for something entirely new--will be similarly elevated. The advocates already seated there will be joined by five new voting members next time, and the government panel may undergo some changes that make sense. Dare I say--gasp--that I can almost imagine the CFSAC turning into an entity that might actually fulfill the late governor Rudy Perpich's original vision? In other words, no longer serving as the rubber room where citizens come to weep for five minutes a clip before a panel of helpless witnesses, but rather a place where committee members actually coordinate efforts among agencies and function as the advisory board on XAND to the Secretary of Health? In six months, might we be cheering and high-fiving each other instead of watching people cry when we tune into the podcast?
Annette Whittemore dedicated her comments in Washington to Alison Hunter of Australia and Jerry Crum of Nevada, a child and an adult, two people separated by age, life experience and continents and yet they fought for their dignity and their lives in similar ways that inspired everyone who knew them.
So, here’s another melody, from 1986, the year so many fell ill around the world, offered in solidarity with our friends in Australia
Comments
be put away; from now on, we patients should not cry, but instead, we should demand: funding, funding, funding, and
NOW or a Congressional Inquiry will be made. In fact, Ms Wittemore asking for one was startling, considering the source...it has only been patients who have threatened such a thing, not a woman who may someday be part of a Nobel Prize (along with Silverman, et al, Peterson, and of course
Judy Mikovits, and the NCI collaborators), for linking
XMRV to CFS. I hope I live long enough to see the day.
I hope my 21 y.o. grdau will eventually have a life she
so richly wants, needs and deserves.
The testing is now available, certainly an unprecedented
event, considering how quickly the WPI made it so; I
have a hard time 'waiting', but I will do so in order
to be able to get a treatment if found and allowed by
our blind FDA. Who will pay for it? Insurance companies,
of course (if one is insured), or Medicare (if one has
been lucky enough to have their disability recognized
by Social Security), so expect great resistance, to say
the least, from those quarters. We still have another
Vietnam ahead: getting treatment(s) individualized,
getting clinicians trained to treat patients, and
getting the treatments paid for...this will take time
and money and patience , so hang on, dear PWCs. The
war(s) are not yet over.
Kudos, kudos, and more (like cheers, hugs, and great
respect and love) to you, Hillary, who so relentlessly,
poignantly, and purposefully stay on the trail of the
truth.
I can assure you, a glass of champagne will be raised at our Thanksgiving dinner in the direction of Reno, and a toast made to Annette and Harvey.
The events of the past month have vindicated us. I just wish I could rub the face of each and every doubter in it until they give me (all of us) the apology we deserve for the quarter-century of verbal abuse. But, I'd settle for a single one from CDC.
Shortly before that, Dr. Klimas made some pretty powerful points about how retroviral research had been shut down years ago because the CDC declared that this had already been explored and that the retroviruses weren't there. Funding dried up and the doors were slammed shut. She appeared to choke up a bit as she described the damage that could be done if follow-up studies failed to use well-defined patient cohorts.
Three cheers to both of these dedicated doctors!
http://www.bmj.com/cgi/eletters/330/7481/14
Have Psychologizers ever ONCE apologized?
28 January 2005
Erik R Johnson,
n/a
Incline Village NV
Send response to journal:
Re: Have Psychologizers ever ONCE apologized?
Have psychologizers ever once apologized for the damage they have done?
Did psychologizers ever say to an AIDS patient "I'm sorry I blamed your illness on you because of your lifestyle"?
To a woman with PMS "I'm sorry I said you were a hysterical female"?
Someone with ulcers from H - Pylori, "I'm sorry I kept telling you it was stress when it was really a bacterial infection"?
Tuberculosis; "I'm sorry I told you that you brought this illness upon yourself by having a nervous disposition"? Thyroid; "I'm sorry that I said your weight problem was from a lack of discipline in your diet"?
ADD/ADHD: "I'm sorry that I told you that this was from your bad choice of sugar laden foods"?
Autism; "I'm sorry that I slapped your child and tried to shake him out of it"?
SIDS/Cot Death; "I'm sorrry that I accused you of killing your own child"?
Munchausen By Proxy: "I'm sorry that I wrongly took your children away forever"?
What do psychologizers plan to say to CFS/MS sufferers when psychologizers finally realize that they were wrong again and that CFS/ME is exactly what sufferers say it is?
Is there any illness in history that didn't have psychologizers standing in the way of sick people seeking medical help by saying "They don't need that kind of help. They just need to change their attitude"?
When the etiology of any illness was finally found to be "Not Psychological", did psychologizers ever make the slightest attempt to undo the damage they created?
Did psychologizers ever try to restore the credibility they stole from those they falsely told "It's All In Your Head"? Or did they scamper off to concentrate their "help" on the next "unexplained medical illness" they could find?
How many more examples of this process do we need to go through before society prevents psychologizers from pronouncing their victims
"Guilty! - until proven innocent of mental illness?
-Erik Johnson
Incline Village CFS survivor
Competing interests: None declared
Erik -- I'm a psychologist with ME for 18 years and here's an expert opinion: No, they will never ever apologize to us. Not ever. In fact, if possible, some will find a new way to make money off of us if they can.
I would, however, point out one major change in the way CFSAC is doing business these days. Namely that the meetings are now Webcast, available on the NIH website (at the link you provided - http://www.hhs.gov/advcomcfs/ ), for ALL to see. The proceedings of the CFSAC are NOW totally public. Sunshine makes a wonderful disinfectant. Whatever happens (or doesn't happen) there in May and October has already been seen by thousands of eyes, not only from the nih website, but also from dozens of places on YouTube where it has migrated.
But the frustrating struggle to provide the meetings online is in itself a further testimony to how the CFSAC has long been an impediment to progress: In 2005, the grass-roots organization MAME (Mothers Against Myalgic Encelomyelitis) requested that the meetings be made accessible to PWC's, via webcast. By law (Section 504 of the Rehabilitation act of 1973, to be specific) this request should have been implemented IMMEDIATELY. Surely the CFSAC should have known the law. Instead, the NIH fought that request for FIVE YEARS!!! It is to Dr Jones' credit that immediately upon her investiture to the CFSAC she arranged the required accommodation (on very short notice) beginning with the videocast of the May 2009 meeting.
Now that the whole world can follow -- via the webcasts and wpinstitute.org's excellent website, I am hopeful that the followup XMRV research will not be diverted to the psychologizers, or to other entities who have a vested interest in its failure.
I am a fibro patient whose mother was diagnosed with Fibro/CFS. I've been watching intently. I want to educate myself about the gammaretroviruses, but have seen nothing that a lay-person can sink her teeth into. I would love to see information on your blog. It's not that I'm not a believer -- I'm hungry for information and it's leaking out ever so, so slowly -- easy for someone to miss who doesn't have their finger right on the pulse.
Am trying to watch the CFSAC meetings, sure to learn more that way. My fatigue level has spiked lately -- so can only watch short clips. I'm reading your book, too -- it's all new to me. Thank you!
- “At least we’re not dealing with an epidemic.”
- “At least it’s not spreading.”
- compared to AIDS, “Clearly this isn’t as serious.”
- “At least there’s no evidence anyone has ever gotten CFS from a blood transfusion.”
- “At least we know this isn’t a new disease—people have reported the symptoms of CFS since time began—we just gave it a name.”
- from the same person, “At least this isn’t like West Nile Virus!”
Hillary, I expect a vitrolic response from you here. The next moron that says the above should be greeted with a vicious "You're ignorance is only surpassed by your stupidity!" and the view of your back as you walk away. When they attempt a retort, respond with "I was wrong - your ignorance is only surpassed by your arrogance and lack of humanity you damn dirty ape!"
Seriously, after your irrational exuberance that this would change anything for ME/CFIDS/XAND/Call it whatever you want patients this article seems to be a yell down back to earth.
With that said, I don't understand people posting hopeful notes to this post. Are they delusional? Eugenics politics hasn't changed, nor have the administrators of death moved, nor have they confirmed anything. And the "best minds" - used as an oxymoron even if you didn't intend such - are f'ing idiot mindless uninformed beasts. And the one vitrolic voice in CFIDS is calling the beasts "best minds" and "respectable". Wow. The sky has fallen and all hope is lost. I want the names, email and phone numbers for these useless apes and I'll take care of the vitrol if you're all out Hillary.
And they're focused on the asymptomatic 4% instead of the 99% deathly ill...Wow! Great news! Let's all congratulate each other and do a happy dance! Yeah!
The more things change, the more they stay the same.
Thank you for first bringing to "us", the forgotten by the medical community, the history of this tragedy during the early years. In 1984, I woke up sick one morning and never got better. Some years later I read your book. I ate it up like a 3rd world child would eat up porridge after no food for days.
I've been reading your blog and now today I've read your report of the meeting I watched and intend to watch again - certain parts of the first day. Thank you for your candor but reporting this in a sane fashion. Vitriol accomplishes nothing. The truth is the truth.
I wondered if my friend Mary made it to the meeting. She has been so kind to me over the last few years in explaining the unexplainable... until lately, without her Ampligen, she's just unable to be what she would like to be at this historic moment in time. Thank you for mentioning that.
Thank you for this blog. I barely read all my email and web sites. I don't blog much and forget twittering and all of that. My brain can barely contain keeping the bills paid. I am a caregiver... you see... to a man, my husband, who became ill a few years ago. He's still able in some ways but not in others. So in many respects I am his caregiver. So its the old saying of "the blind leading the blind." We just celebrate 50 years together last July and I turned 70 this past week.
Will I get to see justice? I doubt it. I hope and pray none of my children or grandchildren have to experience anything like this. But I do hope to live long enough to see those who have pioneered this new page in the history of this disease, whatever you want to call it, Judy and Mr. and Mrs. Whittemore and all the researchers who have worked to hard for us get a huge national recognition. They should be on every major talk show in the world and be invited to the White House. If some person who only sings well gets to go there then they should.
Thank you SO MUCH.
Catherine Broughton UK
I must admit that after 15 years of CFIDS I am guarded and jaded as to the "WE found the cause" proclomation. But this time around I am a little more hopeful. I also must admit that it is quite helpful that there is a cancer-XMRV relationship and THAT will bring funding into play. And THAT can only help US too. Ditto for the fears of our nation's blood supply. This is NOT something I would ever want to see, but it is stirring the pot and bringing attention to the virus and US directly and indirectly.
Anway, yet again - great work Hillary. So damn glad you are on our side! Poor Bill Reeves. Having Hillary Johnson on his behind must be hell on earth. Keep biting his behind Hillary!!! Sharon
It's a colorful picture of Dr. Wanda Jones too. I'm not ready to say her putting Anne Whittemore on the sideline was conspiratorial. If anything, it seems more like a breach of protocol the other way around, perhaps arising out of WPI's conversations with CFSAC the day prior, and cleverly ensured by Drs. Jason, Klimas, and Oleske. Perhaps Dr. Jones didn't see the rising sun, but her job, so far as we know, is to keep order with some measure of impartiality, and she was put in a tough spot.
I'm reading Michael Carroll's Lab 257. The historical pattern of federal mitigating response regarding health threats - until they're ready with a story (or a vaccine) - is obscene, whether out of blatant dishonesty or ignorance. Of note, this is what Bronx Zoo's Dr. Tracey McNamara got from CDC when their birds started acting whacko and dropping dead in 1999, at the same time humans and horses outside the zoo were doing likewise:
"You're just dealing with some veterinary thing."
She felt shunned both unprofessionally and chauvinistically. Yet, according to 257, who made the correct call on West Nile? Not the CDC, nor the nuts on Plum Island, but Fort Detrick.
One wonders if WPI will become Army Strong.
Your astute reporting on the CFSAC meeting correctly states that Kathryn asked at the last meeting, "Why does this committee exist?" That was born out of years of seeing an impotent and silent outcome from countless meetings like this. Our disease has been shuffled around and the ball has been dropped for years.
Note please though, that when mostly local patients attended meetings in the mid-1990's, even back then, some of us asked why this committee existed, why was the CDC dropping the ball, why was the process so flawed? Time after time, people hobbled up to the lectern where we stood during our few precious minutes, and asked why no report ever came out of the meetings; why the Surgeon General or Secretary of HHS never saw a conclusion from the meetings; in effect, why bother? If there was no work product from the meetings, why even bother.
Now there is a web page with recordings and transcripts of the meetings. That's good and we can thank Dr. Jones for that. I still would like to see a real work product come out of the meetings. Maybe it is out there, somewhere, and I just don't know where it is. Even now, after the committee members flee the room at the end of day 2, many leaving early to catch a plane - what do the members do after the meeting?
I have to disagree with you on something. I couldn't care less about what is politically right or correct to say, but it is not intellectual, not scientifically, and not medically correct or right to say that XMRV causes ME/CFS ... yet. Research needs to be replicated worldwide and the causal link needs to be proven.
A lot of questions remain unanswered, like what were the selection criteria for the CFS patients in the WPI study? I hope that during the following months those questions will be answered and that results of other researchers on the possible link between XMRV and ME/CFS will be published.
The patient in me hopes, the scientist in me remains skeptical, and that is how it should be.
Of course, the CDC and the CFSAC made it easy; the older advocates saw the same thing I did and made the same judgement: nobody higher than the CFSAC cared. Let's hope that will soon change.
Hi Kathryn - In the earliest days, there were 2 people who seemed to care; Dr. Philip R. Lee, who got the committee chartered by Congress, and Dr. Art Lawrence, who at first was just the administrator of the committee, but later became an advocate for us. Both were in the Office of the Secretary of Health in DHHS. Both are long gone.
I had the distinct impression that no one else, on the CFS ICC (Inter-agency Coordinating Committee) which morphed into what we now have as the CFSAC, except patients and patient reps, really *cared* about us. They cared about doing their task, which was to meet as scheduled by their bosses and tell everyone what they had not yet accomplished.
We lived through around a decade of these do-nothing committee meetings, with the occasional moment of interest thrown in. There was the infamous low blood volume vasovagal syncope scare presented by Dr. Peter Rowe, where he was quoted as stating all we needed to do was eat a pickle a day to get more salt. And there was the Lyme disease theory - we all had chronic Lyme. We all have depression, we heard that more times than I can count. We are sick because we act like we are sick and we get deconditioned.
The turn-around started when the CDC was brought to account for the misspending of money that Congress had appropriated for CFS research. CDC spent most of its money over the years counting heads in Witchita, KS. They didn't even build up a cohort of real live CFS patients with blood samples and so on; just a list of names and numbers. The rest of the money went to pet projects or the Disease of the Year.
Since then, a few real researchers have been allowed access to some CFS funds, but most extra-mural funds were spent by people doing research unrelated to CFS; they just threw CFS or fibromyalgia in as a key word. Fooled most of the people most of the time. A notable exception and I think, the beginning of the Modern Era, was Leonard Jason, Ph.D., who did real statistical analyses and was focal to the entrance of real researchers into the arena.
I'm not trying to minimize what you brought to everyone's attention. It is a necessary thing to say every time one of these meetings is held. Please continue to go. I (and most of us old geezers) don't travel well any more.
One last thing I want to say. I hope I do not have the XMRV disease. No, I do not want to have the retroviral disease we have all been saying causes CFS/ME/XAND for decades. I'd rather be a malingerer.
So, could we all sue William Reeves in a class-action suit? If we could, what would the grounds be? Would we have to prove deliberate negligence or deceit, criminal activity, etc? Sorry, my brain isn't working but many of yours out there are working.
Peterson did act like he had an "ace up his sleeve", there was a smirk and he was quite quick to get that info OUT there, sort of a veiled threat. It was an interesting moment when he made that comment and one that maybe should be further explored. ANSWERS TO ANY OF THIS ANYONE?