Monday, October 18, 2010

THE FOXES CHASE
THE HOUNDS


An Editorial on
Homographs and Outside Voices

It’s an odd thing looking back at this disease, realizing that 17 million patients all over the world have waited for help for decades, their pain and disability steadily worsening until for many that's all they have left.  Along the way, thousands have died of lymphomas, heart failure, heart attacks, suicide, pneumonia.  Many spouses have deserted them, many friends have written them off as malingerers or head cases.

Georgia resident Leanne Hyneman, whom I interviewed in 1994 for an investigative article I wrote for Philadelphia magazine on the experimental ME/CFS and HIV drug Ampligen, was the sickest ME/CFS patient I’ve ever spoken with.  She was 30 years old in 1994, slept 22 hours a day, rising around midnight, and was cared for by her mother.  (Though Ampligen helped many patients, it only made her worse.)  She lived with seizures, nystagmus, profound weakness, her teeth broke off at the gum line, but she remained soft-spoken and hopeful despite the living death her life had become. After 20 years of living with ME/CFS, she died of cardiac arrest in 2007 at the age of 43.

What terrible isolation Leanne Hyneman and many others like her have endured every day! At least the Internet has helped mitigate that. Finding XMRV and related retroviruses in patients have helped too.  Buoyed for the first time in a long time, patients have been taking matters into their own hands, comparing notes on ME/CFS forums and in private messages and, more recently, shopping for a compassionate doctor who might write them antiretroviral scripts.

Desperate ME/CFS patients plead sotto voce for a triple cocktail of HIV medications and other antivirals like the desperate women of an earlier time who sought clean, illegal abortions from a sympathetic M.D. What person who learns that they’re HIV positive is relieved?  But most patients who learn that they’re XMRV positive are relieved, for it’s validation that their illness is in their bodies and not their minds. That ME/CFS still is not acknowledged as a serious and sometimes fatal physical illness remains for many the worst aspect of having it.

Measuring the effects
Given how sick many patients are and how long they have suffered, why the reluctance of some researchers to begin clinical trials? Several test-tube studies have shown that three approved HIV meds—AZT, tenofovir and raltegravir—have efficacy against XMRV.

There’s also clinical data to suggest FDA-approved antivirals like Vistide and B-cell depleters like the cancer and rheumatoid-arthritis drug rituximab may also be effective for ME/CFS. There are markers to chart patient’s progress, including an XMRV viral load test, cytokine panels, V02 max (maximum capacity of the body to transport and use oxygen during exercise), IQ testing and actometers, which measure activity level.  Desperate patients are experimenting with medications now, but few are monitoring markers, so they’re flying blind. 

Of course, these medications may not work and, worse, can cause kidney and liver toxicity and anemia, among other problems. But the scientific community needs to stop wagging a collective finger at ME/CFS patients trying experimental treatments and, instead, begin clinical trials.  Paternalistic physicians and researchers have come close to equating antiretroviral therapy with lunacy, calculating the damage it’ll wreak on patients’ already compromised immune systems, cautioning about the early days of HIV drugs, which hurt as many sufferers as they helped.  They may be right.  These medications may turn out to be the devil for ME/CFS, but no one is going to know without clinical trials. 

When the healthy reprove the sick that they’re impatient and reckless and foolish and need to wait for treatment, I say isn’t it funny how healthy naysayers get to enjoy their lives while admonishing the sick to be grateful that life is not any worse.  It is sickening.  It’s also a way for the fit to distance themselves from those who are suffering.  The only people who can put a stop to this paternalism and delay are the patients themselves, by acting up, by challenging every inaccurate and inappropriate comment and action.

Gottesman, Plotz and Straus
Case in point: The National Cancer Institute’s Michael Gottesman told patients before the start of the National Institutes of Health (NIH) XMRV conference that they lost a devoted advocate when the NIH’s Dr. Stephen Straus died.  The NIH’s Dr. Paul Plotz made a similar surreal comment last week about the “excellent” work of Stephen Straus on journalist Llewellyn King’s PBS show White House Chronicle.  To Michael Gottesman and Paul Plotz I say:  “What have you been smoking?”  Gottesman and Plotz may be well meaning, but they’re certainly misinformed.

For those who don’t know much about the late researcher who headed up “CFS” research for years at the NIH, Straus holds the distinction as the only physician who seriously injured the health of several patients, during his acyclovir trial in the 1980s.  Acyclovir is an antiviral used to treat herpes viruses, including Epstein Barr virus (EBV), which causes mono.  ME/CFS patients often have elevated antibodies to EBV, and early on scientists hypothesized that the virus caused the disease.  How did Straus injure patients? He didn’t give them enough fluids.  It’s acyclovir 101, not exactly brain surgery, to hydrate patients to prevent renal toxicity problems with antivirals.

The Vapors
After the EBV theory fell apart, Straus started blaming patients for the illness. As outlined in Hillary Johnson’s seminal book Osler’s Web, Stephen Straus launched a 1994 ME/CFS workshop with a slide of a Victorian woodcut of a woman recumbent on a couch with her hand clasping her forehead.  For Straus and some other government scientists in the U.S., as well as a group of psychiatrists in the U.K., ME/CFS became nothing more than an updated name for the Victorian Vapors. 

In 1986, according to Johnson, Straus theorized to fellow physicians:  “Maybe these are the individuals who… don’t want to drive their BMW unless they feel up to it, and they need our help to get behind the wheel.”  When it came to ME/CFS patients, Straus was misogynistic, cruel and, as he proved in the acyclovir trial, incompetent.  That’s who Stephen Straus really was, Dr. Plotz and Dr. Gottesman.

Dr. Elizabeth Unger
Likewise, at last week’s CFS Advisory Committee meeting, the tremulous acting head of CFS research at CDC, Dr. Elizabeth Unger, trotted out the CDC’s usual party tricks: the agency’s fantasy that childhood abuse causes the disease, plus the tried-and-true Cartesian mind-body dualism (though CDC investigates only the mind part).  “Enough, Dr. Unger," I wanted to say to her.  "This is a physiological illness that’s killed thousands of people in the past twenty-six years.  Four of the ME/CFS patients whom I interviewed in 1994 have since died, including my friend Nancy Kaiser.  She died in 2008 of pneumonia after struggling with ME/CFS for 33 years.  No doubt childhood trauma makes individuals susceptible to any chronic illness, but you don’t see any studies on childhood trauma and contracting HIV, do you?  Of course not; it would be absurd.”

Outing gay politicians
Recently I watched a documentary called Outrage.  It chronicles the work of gay journalists, bloggers and activists who’ve outed closeted gay politicians—not because they’re gay but because they’re hypocrites, voting against any issue that would afford  homosexuals the same rights and protections as heterosexuals.  Before AIDS, the late activist Rodger McFarlane says, being closeted was more an issue of privacy.  “After AIDS,” he intones, “that was collusion with genocide.” 

ME/CFS for many is slowly progressive.  After 10 or 20 or 30 years, patients develop cancers, heart disease, heart failure and some die.  By denying the reality of what this disease is, by morphing fact into fiction, by playing Animal Farm head games with the CFS case definition (using the “Empirical” definition which isn’t CFS at all but depression), by reciting the spurious childhood-trauma mantra, many government officials in this country and many “CFS” psychiatrists in Great Britain are in my view intentionally or unwittingly committing slow genocide of the 17 million people worldwide with this disease. Many patients have allowed this crime—it is a crime—to continue for years because they’re so sick and because they bought the company line that they’d recover.

The gay reporters and activists in Outrage implemented a strategic shift in their way of thinking once gay men started dying from AIDS.  Instead of the hounds chasing the foxes, the foxes turned the tables and started hunting the hounds. This switcheroo has, finally, begun in the ME/CFS community. After
decades of quiescence, of hoping that help was just around the bend, the new mood feels different because many patients have reached critical mass. There is a focused determination to effect change.

Inside voices
The use of “inside voices” that CFIDS Association’s Kim Kenney McCleary advocates in an aggravating post on the organization’s website may be well intentioned but it’s out of touch with what’s necessary for change.  Change won’t come easily.  As I’ve said in a previous post, change is always bitter and bloody, with the old guard on tenterhooks, desperate to stave off its own obsolescence—and to keep its secrets secret.  And it will not be easy because adult women comprise the largest segment of this disease, and most girls are taught in childhood to cooperate and not to make waves, and to use their inside voices—even if it kills them.

Few boys are sold that phony bill of goods in childhood.  In Outrage, AIDS activist Larry Kramer recalls an incident during the Reagan administration when at a party he ran into Terry Dolan, at the time the head of the National Conservative Political Action Committee. President Reagan still had not uttered the word “AIDS” in public and had done nothing to contain the disease or help thousands of people dying an agonizing death from it. “How dare you come to a party of gay people after what you’re doing to us?” Kramer asked Dolan and threw a drink in his face. “You’re raising money to kill us.”

I’m not advocating throwing drinks in anyone’s face.  But I am advocating that patients discard their inside voices every time those in power turn ME/CFS into a benign psychiatric problem when it is, in fact, a severe neuroimmune disease, until scientists get the message that patients aren’t going to put up with the lies and doublespeak anymore, until duplicitous scientists become so embarrassed and beleaguered from being besieged by emails, faxes and phone calls, that they give up the charade or, better yet, retire. 

Clinical trials now
At the recent Chronic Fatigue Syndrome Advisory Committee meeting, the National Cancer Institute’s Dr. Stuart LeGrice informed patient advocate Cort Johnson, without any irony: “I don't think this ‘What Have You Done For Me Lately’ campaign is helping. I don’t need to have [NIH Director] Dr. Collins call me and ask me, ‘What are you doing for CFS?’ ” Wow.  What a light-bulb moment that was! Clearly, as Cort Johnson pointed out, the campaign is working. 

The next step is standing up to those who deny patients with ME/CFS the clinical trials that they deserve now, not a year from now or five years from now or 25 years from now, or, if the CDC has its way, a week from never. With our government, patients won’t get what they want unless they articulate exactly what drugs they want and how the trials should be conducted.  For instance, it would be unethical to conduct placebo-controlled drug trials. Early on, HIV patients established that precedent.  The reasoning is this:  Since there are no approved ME/CFS drugs for control patients to take during such a study, it would be unethical to give them a placebo.

Latin declensions and phony definitions
One thing I found stupefying as I watched the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of last week was that the CDC’s Dr. Elizabeth Unger justified using different definitions of the disease, as if they were, say, Latin declensions.  One of those definitions, the Canadian Consensus definition, is the real ME/CFS.  That’s the CFS that causes immune abnormalities, seizures, autonomic dysfunction, excruciating pain, short-term memory loss, dramatic drops in I.Q., swollen lymph nodes, lesions on the brain, cancers and death. 

And there’s the phony CFS that the CDC studies, which meets the Empirical definition (which the CDC sometimes calls the revised Fukuda definition). That’s the CFS that causes depression, minor aches and pains, and weight gain.  In fact, many patients whom the CDC recruits for its studies don’t even know they’re ill, so mild are their symptoms. Why is the CDC studying patients who aren’t very sick when many ME/CFS patients are dying?  It’s as if CDC scientists aren’t familiar with the concept of triage.  At this point, who else but ME/CFS patients can teach them?

Homographs
Perhaps they could explain how the Canadian Consensus CFS and the Empirical CFS are homographs:  Words that sound the same but have different meanings like bow (shoots arrows) and bow (tied with a ribbon).  That’s all they have in common.  No researcher on the CFSAC committee voices umbrage at the muddling of these disparate groupsthis lunacy that passes for sciencefor fear of alienating the government agencies that feed them.  It’s not their fault.  They’ve got to earn a living.  Which is why CFSAC needs scientists with very sick spouses or very sick children because they’ll have different priorities.  Which is also why CFSAC needs patient advocates: They’ve got nothing left to lose and they have the sense of urgency that’s sorely lacking now.

Congressman Barney Frank, who is gay, believes that the reason many people hate homosexuals is because their leaders tell them to.  I believe the reason most people think that ME/CFS is a benign mental disorder is because scientists and the government have been telling them that for a quarter century.  There’s a great moment in Outrage when activist Michael Rogers pronounces that all activism is driven by rage. “People are suffering and dying because some self-promoting asshole is telling a lie,” he says.  Doesn't that sum up what’s been happening with ME/CFS in the United States since the Incline Village, Nevada, outbreak of 1984?  It’s time that patients once and for all get angry enough—and stay angry enough—to put an end to it.


This article is copyright CFS Central 2010. All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is from CFS Central. You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article.

40 comments:

  1. This is spectacular, Mindy. Thank you for the great journalism.

    It was interesting that in the same time than CFSAC, the rescue of 33 miners in Chile went on and I watched all of it, crying, because these 33 men were saved by teamwork, by the promise of their governnent to rescue them, and by their loved ones that never gave up and insisited the said government would get them out live or dead.

    And all I could think about was... why in 30 some years, we were never rescued?

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  2. Wonderful journalism, Mindy. Thank you for your heroic support. So sorry you lost your friend to this nightmare.

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  3. My Specialist CFS/ME Physician in the UK told me that "most people with CFS recover in time and those that don't 'dont want to'" These are the so-called experts!

    I certainly do not wish this disease on anyone, but there are moments when I have been very close.

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  4. Thank you very much Mindy. I'm overwhelmed. For the first time in ten years I'm angry enough to do something about it. It's a very scary and emotional journey... but you give me the strength to continue. I will do whatever I can with the limited energy I have in Dutch.

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  5. Thank you Mindy, again! Sorry to hear you lost your friend. Words cannot express how many of us feel reading this post... p*

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  6. Another brilliant thought provoking post mindy.
    Angry? You bet we are, yet almost embarrassed sometimes by this in case this is seen as being a "head case". Frowned upon by drs, friends, family, spouses that i am being "dramatic". Your post has reignited my flames of anger that ive been trying to supress. Your post has reminded me that i am not being drama queen and that M.E does kill. Do i want to wait for that day to come or do i want to act. I'll choose the latter. Thank you for kicking my butt back into action.

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  7. Mindy, Thanks again.

    “People are suffering and dying because some self-promoting asshole is telling a lie,”

    That about captures it.

    Time to write even more letters and make more assholes uncomfortable. To the recipients of those letters, if you don't know who the assholes are, you're probably an asshole.

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  8. Thank you, Mindy. I agree. I, too, have seen friends die from complications of ME/CFS during the 24 years I've been suffering from ME/CFS. I deeply resent the implication that this is a minor illness and doesn't really need treatment. Although I am still breathing, this illness has stolen my life.

    SILENCE = LIVING DEATH

    It is time for clinical trials (no placebos) NOW!

    Patricia Carter
    www.mecfsforums.com

    October 18, 2010 8:40 AM

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  9. Mindy, thanks for being fearless in reporting our plight. I understand why politicians have wanted to keep this hush-hush for decades. What I don't understand is why - just when we patients start making our voices heard through a spirited email campaign to the NIH - that the CFIDS Association comes out scolding us for being too LOUD. Is Kim McCleary a fox or a hound?

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  10. Mindy - you are a heroine to me for your brilliant, accurate writing of the reality of ME/CFS today, as well as your dedication and commitment to speaking for so many of us who are unable to do so. I too about coughed up a lung when I heard Dr. Straus being praised for his work with ME/CFS. That is like praising Hitler or Idi Amin for being a humanitarian! My sincerest thanks for the work you are doing for us!!

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  11. I agree we have to speak loudly to get the attention we need to recover from our illness. I realized this after years explaining to family that my health condition is physical rather that me just being lazy, or something I'll get over if I put my mind to it. I also realized if I can't make people close to me see that recovery from ME/CFS is not a matter of morality and will, then it will be difficult to convince strangers who do not see my daily struggles that I am indeed sick. It may be much harder because although physicians, politicians, and researchers think they are not biased about my diagnosis they are trained and heavily invested in supporting traditional approaches to disease. Medical practice, policy, and research are inextricably linked and deeply rooted in silo or unidirectional approaches in western countries in particular. This has led many to either outright deny biomedical causes in ME/CFS, or support the role of biology and do nothing about it. People who support biological causes and who are invested in solutions(and we know who they are) are part of modern science looking at disease more systematically. The approach is revealing a lot about disease like cancer and leading to early intervention and prevention in this branch of medicine. Early intervention and prevention is on the horizon for ME/CFS if we continue to support innovative scientists with all the energy we can muster.

    I am a ME/CFS patient and like many I know way too much about my health and politics surrounding it, which is a tell tale sign I've been abandoned to cope on my own in isolation. This is a tragedy that I want to turn around, away from myself where it has resided too long. I want to speak loudly and demand solutions for disease that has robbed me of health and life. I offer as patients we join together with everyone thought to be affected by XMRV/MLV's and turn the ME/CFS dialog around by drowning out popular medical, political, and research voices. Let's change the discourse and re-educate families, friends, physicians, politicians, scientists, and society. I am tired of being sick, but even more, I am afraid of my disease after a long history battling seizures,cancer, and several autoimmune illnesses. It is immoral to leave me alone with all this... has anyone thought about that in the all conjecture of me as a malingerer?

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  12. Thank you, Mindy. Forceful writing that should be necessary reading for any government official, scientist, or physician who deign to opine about this illness.

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  13. "What person who learns that they’re HIV positive is relieved? But most patients who learn that they’re XMRV positive are relieved, for it’s validation that their illness is in their bodies and not their minds."
    That's EXACTLY what I wrote about at the beginning of this year in a poem describing daily life with XMRV and how I am thrilled to be diagnosed with a retrovirus, even as terrifying as that idea may be:
    http://givenmeathorn.blogspot.com/2010/08/name.html

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  14. Mindy, thank you for your courageous hard work and dedication to our cause.
    Recently, I had my first exposure to someone I know who died from CFS related reason(s). It has absolutely devastated me to be hard hit by the reality that,yes, this disease does kill you. It's one thing to intellectually know this, but entirely a different experience to have death occur right in front of you.
    You know, the part that hit me hardest? was the line in the newspaper that said, he died after a long illness. I could relate to that.
    All of us are at some stage in this long illness that is ME/CFS.

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  15. Mindy- The attitude you are putting forward is precisely what we need in the CFS/ME and FMS community: let nothing be unchallenged. Don't settle for "Well, we haven't found a cause..." but challenge, "And what are you doing to find it?"

    Even if the XMRV research doesn't pan out, at it's minimum served as a wake up call to this patient community. To take up the gauntlet with real activism, as the AIDS community did. Thanks for presenting the parallels so vividly. It's a really apt metaphor.

    Just one problem: how am I going to throw a drink in anyone's face when I have alcohol intolerance from illness?... Just kidding. ;)

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  16. Excellent - EXCELLENT! - writing. Thank you. Keep up the great work!

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  17. Great new post, Mindy. You got me all fired up and ready to raise some hell.

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  18. It was stunned disbelief when Kaplan and Holmes abandoned our "Tahoe mystery malady" in 1985, saying they felt there was insufficient evidence.

    I had just watched the way the medical profession treated the AIDS epidemic, and thought to myself, "They haven't learned a thing, they are going to do it all over again"

    After all these years, it is far too late to say they wouldn't.

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  19. Thanks for keeping the pressure on some of those lunatics who pass for scientists. Thanks for keeping certain harsh realities of our illness, and our history of betrayal by those who were supposed to help, in front of our eyes. Thanks for exposing the cover up, and the resulting loss of life. Thanks for inspiring us to take action.

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  20. Mindy... The best article I've seen on the subject yet... Thank you for telling the truth... You have a fellow warrior in me...

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  21. We're learning more about Dr. LeGrice. I agree with most of his CFSAC caution message; until (and even after) all the data's published, there's great potential for anti-RV abuse especially by opportunistic independent MDs.

    However, even if one allows for much of the fury from those who know the double-edge of ARVs, his statement that ARV treatment will not get patients credibility seemed a quizzical warning shot. FBOW, if the anecdotes are largely positive, Big Pharma WILL come knocking. In context with his "warning" to Cort, it's clear LeGrice was not representing NCI/NIH just for science and safety.

    But perhaps he's right: maybe Collins shouldn't have to ask him what he's done lately. Given Gottesman and Plotz, perhaps we should be asking Collins - and some Congressmen - what NIH thinks they're doing.

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  22. Mindy-
    33 years and counting for me. Before I even finished this provacative blog entry, I picked up the phone and finally called my congressman's office. I intend to follow up with adding him to the daily "What have you done for ME/CFS today?" emails to Fauci and Collins.

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  23. YES! YES! YES!

    YAH! You go, girlfriend!

    We're right behind you, Mindy. What a stunning editorial!

    To the barricades, everyone!

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  24. I may have missed some ealier info, but can some one please explain the 'no placebo' angle.

    I have seen other trials go drastically wrong with this approach, primary example being diet-heart trials in which it was thought to be unethical to put some CVD patients on the intervention diet and others left on the standard diet, but then the mortality and occurance rate (MI) went up in everyone.

    Besides that, not having a placebo doesnt seem to get taken as seriously in the medical community, especially with the current stigma around the condition. If everyone is in the intervention arm, they could all just say "yeah i feel better" (because its all in your head dont ya know?), what will you compare it too, you stated there where markers that can be tracked in patients, why not use them. Then mass anti-viral prescription could follow with who knows what effect.

    Not trying to put a downer on anything, just trying to make sure everything is taken into account, especially when viewed from the standard medical community side.

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  25. Anonymous, If the patients' cytokines, I.Q., VO2 max and other key markers are monitored, scientists will be able to judge if patients are responding objectively.

    In general, I believe placebo-controlled studies are not necessary for many studies now because so much data for so many different diseases has been accumulated--including how control subjects fare.

    It's unethical, in my view, to give patients placebos when there is no approved treatment-- AIDS activists fought for the right to treatment in the drug trials and won. Times change, and science must adapt.

    A more humane version of a placebo-controlled trial occurs when an approved drug for a particular disease is given to the "placebo" patients and the investigative drug is given to the rest. That way both groups get treatment, and the new drug can be compared with the approved drug.
    ***

    Thank you all for your kind words about this post. I really appreciate it.

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  26. "After decades of quiescence, of hoping that help was just around the bend, the new mood feels different because many patients have reached critical mass. There is a focused determination to effect change".


    Many of us fought with all we had to find solutions and to pound the doors of a corrupt political machine....only to watch the machine become stronger while the disease progressed and many died...too many years lost.

    Your right, there is a new mood....a mood of solidarity. Now is our time.

    Thank you Mendi for being a leader inspiring solidarity and our march to pound the doors of corruption and end this nightmare.

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  27. Please excuse the lenth of this post, but I have been quiet too long. Mindy, I had the same feeling while watching the CFSAC meeting last week.(http://hhs.granicus.com/viewpublisher.php?view_id=5)
    All alone in my room, I was pounding my head and shaking my fists AT OUR OWN DOCS for letting all the lies go by unchallenged. I know they want money from the Feds, but 20 years of soft talk has gotten all of us nowhere. I was really encouraged when some of them admitted to wanting to resign from this do-nothing committee. Can you imagine wasting your time making recommendations for 20 years and NEVER FOLLOWING UP ON THEM? What is the matter with OUR DOCS?! The CFS name would never have made it to first base in 1988 if OUR DOCS hadn't accepted it. Even the CFIDS Association adopted it! Does the representative from the CDC have any idea of the history of his organization and the invalidity of their definitions? He speaks of sharing their data set - which everyone knows is invalid but no one dares speak up! Clearly Dr. Unger from the CDC had absolutely no idea what she was talking about - yet no one spoke up; instead they sweet-talked her. If I hear one more doc begin a statement with a mealy-mouthed compliment and then follow with a wandering, tip-toe, half-assed question that is meant to suggest an idea without telling them so, I'm going to vomit. Everyone should be restricted to a direct comment of no more than 30 words.

    When I learned about Roberts Rules in 6th grade, my teacher would fail us if we reported that we "discussed" something; we were required to report what we "decided". We were required to do our homework on the outside and to come to meetings to make the DECISIONS. Our docs are forever asking for discussions but never expecting decisions. They have to stop ASKING the federal officials to explain their jobs and start TELLING them what to do! Get them into meetings and make demands of them and send them back to their offices with their heads spinning. The lengthly exchange with the FDA official was absolutely pathetic - and he has been passively attending these meetings for years!

    Important note: We love our docs. They are the best that medicine can offer because they listen to their patients and advocate for them. They are wonderful people. No one questions that. But they have been too "nice". To sit in the CFSAC committee for 20 years and not learn how to make it work is beyond belief.

    Another note: I think Dr. Wanda Jones is a priceless head of the CFSAC committee. She runs a tight ship, and if our docs would just be more honest with her, she could really grease the wheels of the Feds to accomplish things.

    The patients have exactly the right idea: ACT NOW. I quit the movement 20 years ago and was utterly shocked when I came back this year and watched the last two CFSAC meetings and found them discussing exactly the same old things. I testified 20 years ago at this meeting, and here are patients still endangering their own health and saying exactly the same things we used to say. NOTHING HAS CHANGED. Even the XMRV is a rehash of the 1992 retrovirus excitement.

    Let's all quit.

    Let's start brand new. Patients AND DOCS. Movements never get anywhere by being nice, and I thought I'd never be the one to say that. We don't have to be ugly, but we do have to be demanding and require that everyone ACT NOW. I groaned every time I heard someone say, "Let's think about some ideas for our next meeting" IN SIX MONTHS. I've searched online for old friends and found that all but three are dead and one of those is in a nursing home. And I am getting close to death, too. No one on this committee seems to feel the urgency.

    Go for it. Listen to the history and learn. Change all our strategies and ACT NOW.

    Thanks for listening; I feel better now.

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  28. "And it will not be easy because adult women comprise the largest segment of this disease, and most girls are taught in childhood to cooperate and not to make waves, and to use their inside voices—even if it kills them."

    This is true, but if women will not fight for themselves, they may still fight for their children. If the autism link pans out, I think it's possible mothers of autistic children may fight for them.

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  29. "Paternalistic" -- that's the best assessment. I am sick and tired of doctors talking down to me with the attitude that they are men and know everything and I am a woman and therefore don't know what's going on with my own body.

    I'm sick and tired of men who don't live at my house telling me how I think and what I feel and cooing at me nonsense like "sometimes when we are asleep, we think we are awake". Yep, I imagined up that scarf that was a ball of yarn at bedtime and completed at 7 AM.

    Yet, as a male activist and I have discussed repeatedly, if he comes off the exam table swinging at the doctor, it proves he's feisty enough to want to beat the disease. If I did the same thing, it's one more psych diagnosis in my file, "hates men".

    It's why our fate has been in the hands of ELAINE DeFreitas, not Edwin, and JUDY Mikovits, not James -- *they* believe us that women can have functioning brains, can be self-aware enough to know the difference between emotions and physical illness, and, more importantly, that not every woman wants to be a housewife and is willing to fake an illness to be allowed to quit her job. (Thank you, Dr. A, 1987, for explaining to me that I wanted to throw away the career I'd studied for, in order to scrub floors. I really appreciate you telling me what I think is most important in life.)

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  30. I drafted an email to my professor today trying to explain that I am getting through my one (and only) class by giving up everything else in my life including social relationships and pacing my school work as much as I can. I explained this is still not enough and I find myself getting tired and lost in the details of my class readings as broad concepts escape me and I struggle to pin them down. I hope he understands, but can he because no one else does?

    The mechanics of learning is exhausting and requires large periods of rest for me, which never brings much relief in the end. I am caught on a merry-go-round of relapse and remission as I try to stay physically engaged in life. I am motivated and bright (A+ average student), but I struggle with so many limitations posed by ME that it is going to take me 4 years to finish a my honors degree that should only take one. Perhaps I should be grateful I can mange this, but I am not. I am otherwise devastated I will be too old, or dead before I accomplish a Masters, which is a dream. All I can say is I want treatment now. Let me say that again...I want treatment NOW! I want to live like other people do, or at least better than I do now. I have gone as far as I can with self-mastery and accommodation of my disease. I agree it is time to ACT.

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  31. Brilliant, brilliant, brilliant editorial!

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  32. This does feel politically like the AIDS fight of yesteryear for proper treatment. At least we know who won.

    We may have to act likewise.

    Did you hear they turned down publication of Judy Mikovit's UK study, and also Cheney's study???

    I should watch some more AIDS movies.

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  33. I'm the "male activist" that CFS Facts is referring to about "swinging at a doctor", although I never moved a muscle.
    I simply offered to diagnose him with
    "Flat Nose Syndrome" if he said it was "AIYH".

    It was an experimental attempt to see how much aggressive force was necessary to PREVENT a doctor from applying this concept.
    I got a "psych diagnosis" anyway... or at least I would have, except the doctor fled the building and wouldn't come back until I had gone.

    That story is on the website
    "Psych Diagnosis: Personal Stories of Harm", a collection of testimonies for Congressional review, from the author of
    "And They Say YOU'RE Crazy".
    http://www.psychdiagnosis.net/psychiatric_stories.html

    (My story is at the bottom)

    This occurred BEFORE Dr Cheney and Dr Peterson even called Kaplan and Holmes out to Incline Village, shortly before "CEBV Syndrome" and years before "CFS".

    I remember thinking at the time, that if doctors were THIS determined to consign everyone to the nuthouse, it was going to be very, very difficult to stop them.
    Asking nicely isn't going to work.
    It's been tried for a long time now.

    We should stop asking nicely.

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  34. Your editorial drew some attention, but it will take more doing to convince researchers with secure funding that ME/CFS causes deaths, other than suicides of known head cases.

    With the Snyderman presentation, I noted that there was no obvious way to distinguish ME/CFS from the early stages of chronic lymphocytic leukemia (CLL) or mantle cell lymphoma (MCL), except to wait for clear signs of a lethal disease. Without known etiology, the link with XMRV looks like the best lead yet.

    I checked on the number of deaths directly attributed to CLL and came up with 15,000 new cases in the U.S. each year and a 75% 5 year survival rate. The most optimistic reading of that would mean 3,000-4,000 excess deaths per year in the U.S. due to this one cause. (MCL is rarer, except in ME/CFS patients, but the survival rate is worse.) In support of the idea of infectious cause, I found that post-transplant lymphoproliferative disorder raises incidence rates of CLL by factors of hundreds to thousands. This is what I would expect if an undetected infection were responsible.

    Just for comparison, the uncontrolled 1953 epidemic of poliomyelitis killed 3,145 people in the U.S. and left 21,000 with significant disability.

    Prostate cancer kills about 30,000 men in the U.S. every year. (A recent study at Johns Hopkins failed to find any XMRV, but, so far, no one is suggesting the disease is psychogenic.) If I suggest that 1/3 of those deaths are in fact connected to XMRV, as indicated by Ila Singh's results, we're talking about 10,000 excess deaths. I'm also expecting a parallel reproductive cancer in women, like ovarian cancer (16,000 deaths per year), simply because of the known tropism of the virus.

    The connection with heart disease is, naturally, controversial, but we already have such things as a report of a heart attack in an 11-year-old who tested positive for XMRV, in addition to that 96% rate of diastolic dysfunction in Cheney's long-term patients. I'm expecting widespread testing to reveal a substantial correlation with a major cause of death. (Anyone want to place bets on Takotsubo cardiomyopathy, which is associated with stress?)

    This tally completely ignores the rising tide of resistant infectious disease. After a family tragedy, I talked to an infectious disease specialist who privately admitted they were barely keeping things under control, and wondering what to do when their drugs of last resort began to fail. Viral diseases are even harder to control, because of a more-limited range of drugs and long lead times for vaccines.

    Studies like the one Montoya and Lipkin are starting should highlight the danger of leaving large numbers of untreated people with an order of magnitude more active infections than the healthy population. (Other work I've seen suggests 5 to 10 times the number of active viral infections. The connection with bacterial disease is more obscure, but if the idea that the virus prefers to infect macrophages on mucosal surfaces pans out, this would fit other clues.)

    We don't know that all these causes of death are tied to any common cause, but we do know there are clues which we would be highly irresponsible to ignore or dismiss without thorough investigation. Every delay could cost numerous lives.

    If we can ever get a proper accounting of the losses associated with this disease, I believe all the quibbling and dithering is going to look absurd -- this is like the toll from a war. We seem to have a generation of researchers afraid they might actually find something new, cross boundaries and upset organizational apple carts.

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  35. We've had meetings and dialogue with gov't officials for years, with the same story of promises and their commitment etc. Advocacy isn't asking them what they are doing, it is telling them what we want them to do. All the hoopla about "Act Now" - they are acting. On what? We need research and funding and treatment for ME, not the depressed GA CFS cohort. Keep doing what you're doing and you get what you got.

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  36. Remember this name... and this quote, for in
    Dr Ritchie Shoemaker, we have a "renegade researcher" who has broken away from the status quo, and is following up on some rather unusual and specific clues that were present at
    Ground-Zero for the "Chronic Fatigue Syndrome"!

    "In the face of obvious abnormalities, skepticism is inappropriate."
    -Dr Ritchie Shoemaker

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  37. Wow Mindy! your great editorial really hit a nerve! it sure looks like you have woken up some long slumbering M.E and CFS patients. I read this week that Judy Mikovits has been turned down for funding by the NIH SIX TIMES SINCE the publication of her excellent SCIENCE article of just 13 months ago! Why isn't Dr. Collins, the new head of the NIH sending Dr. Ian Lipkin, the government's top virus hunter, to the WPI and have him put a full time team of virus hunters to study the WPI's techniques, so that they can isolate XMRV and other MLV's and then put the money into research and testing already approved antivirals used in the fight against HIV and related diseases, and also take Ampligen and other compounds that have shown some promise in vitro against XMRV. Dr. Mikovits has been quoted as saying that XMRV has shown up MORE in M.E. and FMS patients than in prostate cancer patients. Why don't we focus on the NIH and push Dr. Collins and Dr. Fauci to come clean and explainon why they have NOT funded the WPI's efforts to isolate XMRV and teach other researchers how to find it. I have read that Dr. Joe Burrascano, one of the top Lyme disease doctors in the US, has said that XMRV might be the underlying factor in keeping chronic Lyme disease patients so sick. HTLV-1 and HIV-1 and HIV-2 have been shown to deadly viruses and NOT just passenger viruses, so why should XMRV, the third known Human retrovirus be any different? XMRV will probably not be the answer for all of us, but if a significant portion of us who have been found to be positive for XMRV could be put into closely monitored trials, and then have MINDY or someone we trust publish the results, this could turn around the perception of us as lazy malingerers and meretricious valetudinarians! Many M.E. and FMS and "CFS" patients that i have met over the past 24 years were formerly VERY hard workers, who want desperately to be able to return to work, many of us want to do ANY kind of work.
    Finding a quantifiable, reproducible test, that can isolate a new retrovirus could go a long way to dispelling the lies and myths that have been perpetuated over the past quarter of a century by the very people who are paid good money to help and protect us. the fire has been relit,
    Now, it is up to us to keep stoking that fire! I say push for XMRV testing and push our government to help learn from the WPI how to do the proper testing on this new retrovirus and then start in vitro tests on antiviral drugs immediately, and then do limited and closely monitored studies on some of us guinea pigs. Let's get this party started! Thank you MINDY for returning to covering this very important story.

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  38. Wonderful post, wonderful responses. I plan/hope to post some ideas tomorrow or the next day. Depends on energy, lol. I have thoughts about some coordinated actions and ways we can proceed. I will post on Phoenix Rising http://blog.aboutmecfs.org.

    If your ready and can act look for me there. Lets brain storm. Seeing what that looks like with brain fog, speaking glitches, or having to throw up, lay down or get back to it later, should be interesting in and of it's self, Lol. I look forward to it.

    Blessings,
    Allyson

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  39. Erik Dr. Kaplan was not a part of CDC when Holmes was in 1985.
    I was at the 1999 "apology" and he was acting director of CDC and he has since gone back to the pharmaceutical company he worked for before. Not saying he is good guy...just stating a fact.
    I was there and still am
    meghan

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