Sunday, February 6, 2011

"We Are Not Crumbs": An Editorial

"We must not accept crumbs"

Is it time for ME/CFS patients to become organized warriors?  Is it time for ME/CFS patients to form an army, united against the common enemy, the government?

As I’ve said many times on this blog, when the HIV/AIDS patients started fighting back, that’s when they got results.

I see the CDC and many in the NIH as insidious bullies—why else would the NIH have appointed Dr. Myra McClure to the Center for Scientific Review Special Emphasis Panel (SEP), which approves National Institutes of Health grants for ME/CFS?  As soon as patients voiced their disapproval, she said she would resign.

The only way to get people and the government to do the right thing is to stand up to them.  Every kid learns that when you stand up to bullies, they get afraid and back down.  For the government to be afraid of ME/CFS patients, it’s going to take a lot of organization and thousands of people rallying against them. It can be done.  But until there is organized action, nothing will change. 

If fifty thousand people from all over the world bombarded the NIH, torturing the agency with emails, faxes, phone calls and letters, demanding that the agency fund the Whittemore Peterson Institute’s research, I believe it will happen.  If fifty thousand people from all over the world bombarded the NIH, torturing Drs. Antony Fauci and Francis Collins, as well as Secretary of Health and Human Services Kathleen Sebelius on a daily basis with emails, faxes, phone calls and letters, demanding that Dr. Jim Jones be removed from SEP and telling them who ME/CFS patients do want in McClure’s and Jones’s places, I believe it will happen.  Patients need to ask retrovirologists and other scientists whom they respect if they'd be willing to sit on SEP, and once they say yes, those names need to be rammed down the government’s throat.  It’s time to take control.

Patients have the power.  It’s my view that they don't realize that they have the power, and they haven’t become organized enough to harness it.  But once they harness it, they can’t back down, or the government will clamp down harder than before.

There already is a blueprint, ACT UP, for coercing the government to fund biomedical research.  Most HIV/AIDS patients, even without treatment, have more energy than ME/CFS patients to coerce the government, but ME/CFS patients have the Internet and email, which ACT UP didn’t have 25 years ago.

Creative tactics
ME/CFS patients can develop effective and creative tactics, as ACT UP did.  (One of my favorite stunts of ACT UP was draping a giant condom over Senator Jesse Helms's house.) Even small gestures can make a difference.  Do you remember when the NIH’s Dr. Wanda Jones politely asked the ME/CFS protesters to sit down during the last Chronic Fatigue Syndrome Advisory Committee meeting?  What would have happened if the patients had calmly refused?  If the patients had been removed, patients could have emailed the video to reporters, and it could have become a news story.  The government would look bad, punishing ME/CFS patients for their peaceful act of civil disobedience, and patients would look fearless, strong and a force to be reckoned with.  The government needs to be exposed for being responsible for the deaths and living deaths of millions of patients all over the world during the past 25 years.  Only the patients can do it. 

The media
As far as the media is concerned, when a reporter writes an inaccurate, paternalistic, condescending, psychobabble story about ME/CFS, if ten thousand patients flood the online and print advertisers with this mantra, “We’re boycotting you as long as you support trash stories about ME/CFS," how long do you think those kinds of stories would continue, particularly given that newspaper and magazine revenues are in the toilet?  Advertisers get nervous when they get one angry letter.  What would ten thousand letters do?

The same goes for television or radio.  Any time something untrue or dismissive is said about ME/CFS, the barrage of angry phone calls, emails, faxes should begin.  We’re boycotting your show.  We’re boycotting your products.

Nancy Klimas
I believe one of the reasons that patients became so pissed about the recent Klimas study was because it felt like a slap in the face:  How could Nancy Klimas, who knows full well that biomedical research is what’s needed, participate in a cognitive behavioral therapy study?  I believe Klimas’s name on that study shows that her priorities are not always patients’ priorities, no matter how proactive she’s been to the cause over the years. Patients have to stand up for themselves; they can’t depend on anyone else to help, even Nancy Klimas or its own support group, the CFIDS Association of America. 

"We are not crumbs"
Below are key excerpts from AIDS activist Larry Kramer’s 2007 speech, “We are not crumbs.  We must not accept crumbs.”  It highlights the warrior tactics ACT UP used to usher in effective government cooperation and drug treatments.  One thing that struck me is Kramer’s belief that if you want justice, fairness has to be tossed out the window.

“Our days of being democratic to a flaw at those endless meetings must cease,” Kramer said.  “It has been a painful lesson to learn but democracy does not protect us. Unity does.”  Being polite, fair and reasonable doesn’t cut the mustard when you’re dealing with the government, as the HIV/AIDS patients found out 25 years ago and as ME/CFS patients surely know by now.  Being fair got McClure on that panel. Being fair hasn't gotten WPI NIH research dollars. 

Women versus men
I believe 25 years ago had women been the first to get HIV, ACT UP would never had occurred. Most women are taught to be compliant and sweet and reasonable and fair, but it’s going to take cajones to make change happen for ME/CFS. 

Below are key excerpts from Kramer’s speech.  If you’d rather watch the speech, scroll down to the bottom of this post.

“One day AIDS came along. It happened fast. Almost every man I was friendly with died. Eric [Sawyer, an HIV/AIDS activist] still talks about his first boyfriend—180 pounds, 28 years old, former college athlete—who became a 119-pound bag of bones covered in purple splotches in months. Many of us will always have memories like this that we can never escape.

“Out of this came ACT UP. We grew to have chapters and affinity groups and spin-offs and affiliations all over the world. Hundreds of men and women once met weekly in New York City alone. Every single treatment against HIV is out there because of activists who forced these drugs out of the system, out of the labs, out of the pharmaceutical companies, out of the government and into the world. It is an achievement unlike any other in the history of the world. All gay men and women must let ourselves feel colossally proud of such an achievement. Hundreds of millions of people will be healthier because of us. Would that they could be grateful to us for saving their lives.

"The appalling indifference to the suffering of so many"
“So many people have forgotten, or never knew what it was like. We must never let anyone forget that no one, and I mean no one, wanted to help dying faggots.  Senator Edward Kennedy described it in 2006 as 'the appalling indifference to the suffering of so many.' Ronald Reagan had made it very clear that he was 'irrevocably opposed' to anything to do with homosexuality. It would be seven years into his reign before he even said the word 'AIDS' out loud, by which time almost every gay man in the entire world who'd had sex with another man had been exposed to the virus. During this entire time his government issued not one single health warning, not one single word of caution. Who cares if a faggot dies? I believe that Ronald Reagan is responsible for more deaths than Adolf Hitler. This is not hyperbole. This is fact.
Fake blood and giant condoms
“These are just a few of the things ACT UP did to make the world pay attention: We invaded the offices of drug companies and scientific laboratories and chained ourselves to the desks of those in charge. We chained ourselves to the trucks trying to deliver a drug company's products. We liberally poured buckets of fake blood in public places. We closed the tunnels and bridges of New York and San Francisco. Our Catholic kids stormed St. Patrick's at Sunday Mass and spit out Cardinal O'Connor's host. We tossed the ashes from dead bodies from their urns on to the White House lawn. We draped a gigantic condom over Jesse Helms' house. We infiltrated the floor of the New York Stock Exchange for the first time in its history so we could confetti the place with flyers urging the brokers to 'SELL WELLCOME.'

“We boarded ourselves up inside Burroughs-Wellcome—now named GlaxoSmithKline—which owns AZT, in Research Triangle so they had to blast us out. We had regular demonstrations—die-ins we called them—at the Food and Drug Administration and the National Institutes of Health, at City Halls, at the White House, in the halls of Congress and at government buildings everywhere, starting with our first demonstration on Wall Street, where crowds of us lay flat on the ground with our arms crossed over our chests or holding cardboard tombstones until the cops had to cart us away by the vans-full.

“We had massive demonstrations at the FDA and the NIH. There was no important meeting anywhere that we did not invade, interrupt and infiltrate. We threatened Bristol-Myers that if they did not distribute it immediately we would manufacture it ourselves and distribute a promising drug some San Francisco activists had stolen from its Canadian factory and had duplicated. The drug, now known as Videx, was released. Ironically, Videx was discovered at Yale, where I went to school and with whom I am still engaged in annoyingly delicious activist battles to shape them up; they, too, are a stubborn lot. We utterly destroyed a Hoffmann-LaRoche luncheon when they delayed a decent drug's release.
Attacking the New York Times
“And always, we went after the New York Times for their shockingly, tragically inept reporting of this plague. We plastered this city with tens of thousands of stickers reading, 'Gina Kolata of the New York Times is the worst AIDS reporter in America.' We picketed the Fifth Avenue home of the publisher of the Times, one Arthur Sulzberger. We picketed everywhere. You name a gross impediment and we picketed there, from our historic 24-hour round-the-clock-for-seven-days-and-nights picket of Sloan Kettering to another hateful murderer, our closeted mayor Edward I. Koch. Three thousand of us picketed that monster at City Hall.
“And, always we protested against our ignoble presidents: Reagan. We actually booed him at a huge AmFAR benefit in Washington. He was not amused. And Bush: 2,500 of us actually tracked him down at his vacation home in Kennebunkport, Maine, which did not know what had hit it. And Clinton. I cannot tell you what a disappointment he was for us. He was such a bullshitter, as I fear his wife to be. And Bush again. The newest and most evil emperor in the fullest, most repellant plumage. We can no longer summon those kinds of numbers to go after him.
“Slowly we were noticed and even more slowly we were listened to.
“Along this journey some of our members taught themselves so much about our illness and the science of it and the politics of it and the bureaucracy of it that we soon knew more than anyone else did. We got ourselves into meetings with drug company scientists who could not believe our people weren't doctors. I took a group to a meeting with Dr. Anthony Fauci, whom I had called our chief murderer in publications across the land.
“Dr. Fauci was and still is the government's chief AIDS person, the director of infectious diseases at NIH. We were able to show him how inferior all his plans and ideas under consideration were compared to the ones that we had figured out in minute detail. We told him what they should be doing and were not doing. We showed him how he and all his staff of doctors and scientists and researchers and statisticians did not understand this patient population and that we did. By then, we had located our own doctors and scientists and researchers and statisticians to talk to, some of them even joining us. When our ideas were tried, they worked. We were consistently right.
Our chief murderer
“Our 'chief murderer,' Dr. Fauci, became our hero when he opened the doors at NIH and let us in—a historic moment and a historic gesture. Soon we were on the very committees we had picketed, and soon we were making the most important decisions for treating our own bodies. We redesigned the whole system of clinical trials that is in use to this day for every major illness. And, of course, we got those drugs out. And the FDA approval for a new drug that once took an average of 7-12 years can now be had in less than one. ACT UP did all this.
“My children—you must forgive me for coming to think of them as that—most of whom are dead. You must have some idea what it is like when your children die. Most of them did not live to enjoy the benefits of their courage. They were courageous because they knew they might die. They could and were willing to fight because they felt they soon would die and there was nothing to lose, and maybe everything to gain.
“[AIDS activist] Rodger McFarlane made this list of ACT UP's achievements: accelerated approval of investigational new drugs; expanded compassionate use of experimental drugs and new applications of existing drugs; mathematical alternatives to the deadly double-blind-placebo-controlled studies of old; rigorous statistical methods for community-based research models; accelerated and expanded research in basic immunology, virology and pharmacology; public exposure of and procedural remedies to sweetheart practices between the NIH and FDA on one hand and pharmaceutical companies on the other. 
“Now, with our own decline, unfortunately out of control again; institutionalized consumer oversight and political scrutiny of FDA approvals for all drug classes and for vast NIH appropriations for research in every disease; state drug assistance programs; and vastly expanded consumer oversight of insurance and Medicare and Medicaid reimbursement formularies. Each of these reforms profoundly benefits the health and survival of hundreds of millions of people far, far beyond AIDS and will do so for generations to come.
“Perhaps you did not know we did all this. As we know, historians do not include gay anything in their histories. Gays are never included in the history of anything.
Before ACT UP and after
“Dr. Fauci now tells the world that modern medicine can be divided into two periods. Before us and after us. 'ACT UP put medicine back in the hands of the patients, which is where it belongs,' he said to The New Yorker.
“How could a population of gay people—call us the survivors, or the descendents, of those who did all this—be so relatively useless now? Maybe useless is too harsh. Ineffectual. Invisible. No, useless is not too harsh. Oh let us just call ourselves underutilized. As long as I live I will never figure this out.
“Then, we only had the present. We were freed of the responsibility of thinking of the future. So we were able to act up. Now we only have our future. Imagine thinking that way. Those who had no future now only have a future. That includes not only everyone in this room but gay people everywhere. We are back to worrying about what 'they' think about us. It seems we are not so free, most of us, to act up now. Our fear had been turned into energy. We were able to cry out fuck you, fuck you, fuck you. Troy Masters, the publisher of LGNY, wrote to me: ACT UP recognized evil and confronted it loudly.
“Yes, we confronted evil. For a while.
“We don't say fuck you, fuck you, fuck you anymore. At least so anyone can hear.
Doesn't anything make you angry?
“Well, the evil things that made me angry then still make me angry now. I keep asking around, doesn't anything make you angry, too? Doesn't anything make anyone angry? Or are we back in 1981, surrounded and suffocated by people as uninterested in saving their lives as so many of us were in 1981. I made a speech and wrote a little book called The Tragedy of Today's Gays about all this. That was about two years ago. Lots of applause. Lots of thanks. No action.
There was a Danish study a few weeks ago. The life expectancy after infection by HIV is now thirty-five years. Thirty-five years. Can you imagine that? That is because of ACT UP. A bunch of kids who learned how to launch street actions and release a propaganda machine and manipulate media masterfully, and use naked coercion, occasional litigations, and adept behind-the-scenes maneuverings that led to sweeping institutional changes with vast ramifications. We drove the creation of hundreds of AIDS service organizations across the country, leveraging hundreds of millions of dollars a year and fielding tens of thousands of volunteers, all the while amassing a huge body of clinical expertise and moral authority unprecedented among any group of patients and advocates in medical history.
“We did all this. And we got all those drugs. The NIH didn't get all those drugs. The FDA didn't get all those drugs. We got all those drugs. And we rammed them down their fucking throats until they approved them and released them.
“It was very useful, old ACT UP.
“It is no longer useful. The old ACT UP is no longer useful enough. There are not enough of us. Few people go to meetings. Our chapters have evaporated. Our voice has dimmed in its volume and its luster. Our protests are no longer heard.
“We must be heard! We must be.
Utter disdain
“We are not crumbs! We should not accept crumbs! We must not accept crumbs! There is not one single candidate running for public office anywhere that deserves our support. Not one. Every day they vote against us in increasingly brutal fashion. I will not vote for a one of them and neither should you. To vote for any one of them, to lend any one of them your support, is to collude with them in their utter disdain for us. And we must let every single one of them know that we will not support them. Perhaps it will win them more votes, that faggots won't support them, but at least we will have our self-respect. And, I predict, the respect of many others who have long wondered why we allow ourselves to be treated so brutally year after year after year, as they take away our manhood, our womanhood, our personhood. There is not one single one of them, candidate or major public figure, that, given half a chance, would not sell us down the river….
“We are not crumbs! We must not accept crumbs!
“The CDC says some 300,000 men who had sex with men have died during the past 20 years. If I knew at last 500 of them, I know this CDC figure is a lie. Just as I know the CDC figure of gay people as only several percentage points of the population is a lie, instead of the at least some 20% of the population that the Williams Institute at UCLA Law School calculates it is possible to maintain. Who says that intentional genocide of 'us' by 'them' isn't going on? They don't want us here. When are we going to face up to this? …
“I wish I could make all gay people everywhere accept this one fact I know to be an undisputed truth. We are hated. Haven't enough of us died for all of us to believe this? Some seventy million cases of HIV were all brewed in a cauldron of hate.
Activism out of love
“[AIDS researcher] Mark Harrington said to me last week that one of the great things about ACT UP was that it made us proud to be gay. Our activism came out of love. Our activism came out of our love for each other as we tried to take care of each other, and to keep each other alive.
“No one is looking out for us anymore the way ACT UP looked out for us once upon a time.
“ACT UP is not saving us now. This is not meant as finger-pointing or blame. It just is. No one goes to meetings and our chapters all over the globe have almost disappeared. And we must recognize this, I beg of you.
“I don't want to start another organization. And yet I know we must start another organization. Or at the very least administer major shock therapy to this one.
“And I know that if we do go down a new road, we must do it right and just accept this fact that the old ACT UP we knew is no longer useful enough to the needs that we have now and move on to reparative therapy.
An army with elected leaders and a chain of command
“I also know that any organization that we start now must be an army. You have resisted this word in the past. Perhaps now that the man in charge of America's army is calling you immoral you won't resist it army anymore. We must field an organized army with elected leaders and a chain of command. It must be a gay army with gay leaders fighting for gay people under a gay flag, in gay battle formations against our common enemies, uncontaminated by any fear of offending or by any sense that this might not be the time to say what we really need to say.
“We must cease our never-ending docile cooperation with a status quo that never changes in its relationship to us…. Taxation without representation. Safety. Why aren't they all supporting Hate Crimes bills that include us? Twenty-thousand Christian youths now make an annual pilgrimage to San Francisco to pray for gay souls. I am sorry but this is not free speech. This is another version of hate. If any organization sent 20,000 Christian youths to pray for Jewish souls they would lose their tax-exempt status, or they would have before George Bush. Do we protest?
‘It is very wearying to witness our carrying on so passively year after year, particularly now that all of us—and I mean all of us—have been given the gift of staying alive. I know that young gays don't think this way, but many of us died to give you this gift of staying alive. You are alive because of us. I wish you would see this. And we all owe it to the dead as well as to ourselves to continue a fight that we have stopped fighting.
“We do not seem to realize that the more we become visible, the more that more and more of us come out of the closet, the more vulnerable we become to the more and more increasingly visible hate against us. In other words, the more they see us, the more they hate us. The more new gays they see, the more new ways they find to hate us. We do not seem to realize that the more we urge each other to come out—which indeed we must never stop doing—the more we must protect ourselves for and from our exits from our closet on to the stage of the world that hates us more and more. I don't think we realize this and we must. We must.
Strength and discipline scares people
“Why do I think we need the word 'army'? Because it connotes strength and discipline, which we desperately need to convey. Because it scares people, and God knows nobody is all that scared of us. Which they were for a while. The drug companies were afraid of us. The NIH and FDA were afraid of us. Closeted everybodies were afraid of us. No more. Our days of being democratic to a flaw at those endless meetings must cease. It has been a painful lesson to learn but democracy does not protect us. Unity does. United commitment to confront our many foes….
“When will we acknowledge that we are constantly being lied to? We must have fiercely observant eyes. We must understand and confront the unprecedented, with 'attentive facing up to, and resistance of, reality—whatever that might be.' (Arendt) Intelligent people—and gays are certainly that—have proved more than once that we are less capable of judging for ourselves than almost any other social group. When a conservative columnist can get away with calling presidential candidates 'a faggot' and 'a queer,' without any serious reprisals, than why can't we see that we are in trouble? When the New York Times does not run an obituary on quite possibly the most famous lesbian in modern times, Barbara Gittings, than we are in trouble. When I can't get US News and World Report to publish a letter about an insidiously homophobic cover story they wrote on Jamestown, we're in trouble. When our country's top military officer can call us immoral, we're in trouble.

“No, ACT UP is not saving us now. No one is saving us now.
Our friends are not protesting with us
“We all think we have straight friends. We think if we have straight friends then everything is OK. But these friends are not protesting with us. They aren’t fighting with us. They enjoy the freedoms they have with their marriages and all their fringe benefits. Yes, they like us but are they going to sacrifice any of their freedoms to get us ours? Of course not. And what’s more we should not expect them to. Even though it sure would be nice; we’ve fought for them and theirs often enough.
“The old ACT UP model served us well but it is time to take the next step. I am not saying that there are not more fights to be had for AIDS. There are and we must continue to fight them. Infections are up again. Prevention efforts are not good enough. It is still illegal for HIV foreigners to enter America. But these issues no longer appear to excite sufficient participation. Few people come to meetings and our chapters have disappeared. Many of us have tried to figure out what happened to us and why we ceased to be what we were. We all have thoughts about what happened but as I said I think its time to stop trying to figure it out and just move on. Expanding our demands will hopefully not silence our past concerns but invite increased numbers to meld these newer concerns I am talking about into a stronger, total mix.
“ACT UP requires a new model to do this. A new model that will allow for different kinds of actions, tactics and issues, not just HIV. I am not asking you if you even want another organization. I am hoping that you are smart enough to realize–eureka!–that the great deeds we once accomplished which changed history can be accomplished again. For we are still facing the same danger, our extermination, and from the same enemy, our own country, our own country’s “democratic process.” Day after day our country declares that we are not equal to anything at all. All the lives we saved are nothing but crumbs if we still aren’t free. And we still aren’t free. Gay people still aren’t free….
“We have right on our side and we must make everyone know it. If ACT UP is to stand for anything, let it stand for our Army Corps to Unleash Power.
“Think about it. Think about all of this. Please.
“We are the only people in America that it is socially acceptable to hate and discriminate against. Indeed so much hate of us exists that it is legally acceptable to pass constitutional amendments to hate us even more. This is democracy? This is how our courts and laws protect us? These are the equal rights for all that America’s Bill of Rights proclaims for all?
“The biggest enemy we must fight continues to be our own government. How dare we stop? We cannot stop. We are not crumbs and we must not accept crumbs and we must stop acting like crumbs.
Grass roots
“ACT UP is the most successful grass roots organization that ever lived. Period. There never was, never has been one more successful that has achieved as much as we. We did it before. We can do it again. But to be successful, activism must be practiced every day. By a lot of people. It made us proud once. It united us.
“I constantly hear in my ears the refrain: “an army of lovers cannot lose.” Then why are we losing so? We must trust each other to an extent we never have, enough to allow the appointment of leaders and a chain of command to stay on top of things and keep some sort of order so that we not only don’t self destruct as we seem to have more or less done, but also, this time, as we did not do before, institutionalize ourselves for longevity.
“I am very aware that as I spin this out I am creating reams of unanswered questions. Well, we didn’t know when we first met in this very room twenty years ago what we wanted ACT UP to become. But we figured it out. Bit by bit and piece by piece we put it together. We have a lot to thrash out and codify in a more private fashion. Armies shouldn’t show all their cards to the world. Many parts of the old ACT UP will still serve us: the choices of a variety of issues to obsess us in the detail that we became famous for; the use of affinity groups that develop their own forms of guerilla warfare….
“Much of what I am calling for involves laws, changing them, getting them. We need to cobble together an omnibus gay rights bill and then hold every politician’s feet to this fire until he or she supports it. We’d find out fast enough who are friends aren’t. TAG and AmFAR once cobbled together a bunch of research priorities into a bill that they got through congress.
“How about this: Jim Eigo wrote me: “a full generation after AIDS emerged as a recognizable disease, having sex still poses the same risk for HIV infection or reinfection. Having a sexual encounter with another person–a central, meaningful activity in most people’s lives–has been shadowed by fear, by the prospect of a long-term disease and by a whole new reason for guilt for more than a quarter of a century now. How have we allowed this unnatural state of affairs to persist for so long? Where are the 21st century tools for preventing the sexual transmission of HIV: cheap, effective, and utterly unobtrusive. Lovers deserve nothing less. Instead of sinking time, effort, and money into excavating the fossils of its ancient achievement, ACT UP might consider marking its birthday by mounting a fresh drive to remind government and industry that people have a right to sex without fear, without being forced to make a choice between pleasure and health. It’s an issue that might actually speak across the divides of generation, race, gender and sero-status.
“And it might regain for the organization some measure of the relevance it once had for the grassroots activists that gave of themselves as if their lives depended on it, because they really did.” Jim is calling for nothing less than the reclamation of our sex lives. What an utterly fantastic notion, or shall I now say goal? Why even raising this issue will find us hated even more. I am so ready for another organized fight.
“Are you beginning to see how all this that I am talking about can be streamed into one new ACT UP army?
The power of the Internet
“I have asked Eric to convey the main difference of what is available to us now that we did not have to work with in the past: 
“In the age of the Internet we can do much of what we did in our meetings and on the streets, on the world wide web.
 “The information technology available today could help end the need for those endless meetings.
 “Creating a blog could, in fact, incorporate even more voices and varieties of opinions and ideas than any meeting ever could. 
“Where ACT UP once had chapters in many cities, we could now involve thousands more via simple list-serves and blogs. We can draw in students and schools and colleges all over the world. It is the young we have to get to once again. Creating a blog would allow for expression and refinement of ideas and policies, like a Queer Justice League for denouncing our enemies.

A well organized website could function as an electronic clearing house for sharing information, for posting problems, for demanding solutions, for developing and communicating action plans.
 List-serves and a website could coordinate grassroots organizing and mobilize phone, e-mail and physical zaps or actions. They could also be used to spotlight homophobic actions, articles, movies and TV, and laws.
 “Why aren’t we fighting fire with fire? Where is our radical gay left think tank? We need our own ‘700 Club’ and our own talk radio show. Developing such gay content programming for the LOGO or Here Networks or for streaming on-line is completely possible today. Why are all the shows our community is producing about fashion, decorating or just another gay soap?”
“Why even Time magazine is now stating as a fact that websites drive the agendas of political parties.
“I know that even without these tools we reordered an entire world’s approach to a disease that would have killed us all. Surely with these tools and with all our creativity we can start to take control of our destinies again.
“With these tools, and with a renewed commitment to love and support and to fight to save each other, with a renewed commitment to the anger that saved us once before, with the belief that anger, along with love, are the two most healthy and powerful emotions we are good at, I believe that we could have such a historical success again.
“May I conclude these thoughts, these remarks toward the definition of a new ACT UP that will hopefully begin to be discussed forthwith, with this cry from my heart:
“Farewell ACT UP.
“Long live ACT UP.
“Thank you.”


  1. Not read this yet. But has McClure resigned? And will she be back?

    I don't trust McClure's word on this.

  2. Perhaps ME patients should join forces with AIDS ACTS UP organization....

  3. AMEN - Magnificent rant. My thoughts exactly. I read you site all the time, love it, agree with the need to ACT UP, but have no idea on how to get started or where to sign up. Can you help me and others like me who want to act but aren't connected to an organization - yet?

    Thank-you for all the work you do. How can I help?

  4. Join forces? ACT UP has shown no sign of wanting us. I'm afraid we'll have to grow our own.

  5. P.S. - I'm willing to call, write, FAX, disrupt, shout, etc. I make a great foot-soldier but I need my marching orders.

    I did all the above re: McClure, because I found it on the internet. But now, for example: Who are the retrovirologists I want on the review panel? Where or How do I get this information (and further marching orders)?

    You already do more than anyone could reasonably expect, but if you could help me find that activist center, I would join today.

    Thanks again

  6. Powerful reading mindy! Act up is a brilliant model to take inspiration from. I really hope that mcClure has withdrawn. X

  7. We are now living in a time where we can act up using the internet, faxes, phones, newspapers, media and social networking. This past year it has been shown that using these avenues we do have power.

    I do not beleive it to be beneficial to act outrageously, like dumping blood etc. I would never participate in such actions.

    What I do beleive is that the ME/CFS community needs to unite itself first! Some patient groups are embittered and take it out on other patient groups. We need to form one voice, a reasonable but emphatic one, consistent, without let up.

    Some of the campaigns this past year have shown we can have power even from our beds. So let's keep it up both here in the United States and abroad. A worldwide approach, with worldwide patient unity!

  8. There is no choice but to act up. If you don't want to wait 100 years Act up!
    I'm looking for some leadership in Canada too! What can we do besides posting periodically on the cbc web site and writing our MPs and PM?

  9. I agree that we need to get organized and serious, but the problem is we already have advocacy organizations.

    Do we start yet another one with these tactics in mind?

  10. Fellow Canadians, should we be asking for resignations? Who would we be asking this of? If there is no additional funding for cfs in the Federal Budget 2011 to be tabled this March? That is my personal cut off date because I have been writing MPs and the Prime Minister for additional funding to be announced then.

  11. If we joined in with AIDS group ACT UP what a statement that would be. We would be a strong unified group of citizens coming together to overcome poltics and universally uphold human rights in health care.

    I agree the Canadian voice is small. I'd like to see more activism in my country. Conferences and polite independent letter writing campaigns don't do it for me.

    Maybe a global ACT UP group that is designed to address national interests would work. In Mindy's blog it is indicated a new model for ACT UP is needed. I see globalization and joining forces as a new direction.

    Hetrogeneity in activism undermines strength in my view. If ACT UP is not an option, the ME community needs to be solidified and globalized. We are too fragmented. Divided we are conquered, united we stand.

  12. Anonymous,

    Scientists who ME/CFS patients might want on SEP, and other committees that decide the fate of ME/CFS patients, include: Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Kenny de Meirleir, Ellen Goudsmit, Byron Hyde, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.

    “Experts” ME/CFS don’t want include Deirdre Buchwald, John Coffin, Suzanne Vernon, Brigitte Huber, Jonathan Stoye, Peter Manu, Edward Shorter, Christine Heim, any psychiatrists/psychologists from England or Germany, any “scientists” from the CDC or Emory University.

    As far as advocacy, clearly ME/CFS patients can't rely on their own CAA. But I believe patients congregating here and at Phoenix Rising ( and ME/CFS Forums ( can certainly do the job.

  13. Agree 100%, Mindy. This is not an information campaign that requires long, laborious letters. This is war and requires sharp attacks. I used to believe in the polite dissemination of information. Now that I have lost most of my adult life to this disease, I realize I was ineffective and wish to hell I could convey that message to the younger people. I now would gladly spill blood.

    Another thought is that maybe we could occasionally elicit physical help from the AIDS people to carry signs for us in our protests.

  14. I like your style Mindy and, I fully believe your correct that it's going to take this kind of organized action, even civil disobedient action, to effect change.

    I am emailing politicians and newspapers constantly, but I would love it if we could get more organized with social action. Talk without serious action will get us nowhere. As you said, we already have a blueprint, now lets get with it! I know little about politics, but I'm willing to suit up and show up!

  15. The following letter was sent today to,,,,,,

    The appointment of Myra McClure to the SEP panel is blatant prejudice against me/cfs and xmrv research. The presence of a known, self described me/cfs adversary is a clear example of bias and discrimination against the science, patients, and research in this field. It reveals an intent to thwart progress towards ethical scientific discovery, further harming not only the patients and their families, but also the scientists who are willing and able to do the hard work. This appointment is discrimination against a sick and disabled population, pure and simple, and must be called out for what it is.

    I am the mother of a young woman who became fully disabled by me/cfs at the age of 15, ten years ago. She is XMRV positive. She remains disabled today, living off an SSI stipend that is below the poverty level and Section 8 subsidized housing. When she became too ill to even get out of bed, she was an honor student with a bright future. I have yearly standardized tests to prove her innate intelligence and her report cards. She was NO slacker. She was forced by the illness to drop out of school.

    I have seen things with her illness that break me to the point of not knowing how to go on. I am the one who goes to her when she is too weak to lift her head, when she has to be helped to the bathroom, when she has to be fed a liquid diet by straw while she lays in bed too weak to even sit up for a meal. She has a wheelchair and handicapped parking. She lives a grim, limited life, and as her mother I support her in any way I can, trying my best to keep her alive for just another day.

    This all could have been avoided.

    The CDC knew this was a retrovirus way back in the late 80s, when my daughter was a toddler. She could have been spared the torture she has endured had things been handled properly back then. Shame on the officials who dropped the ball back then. Are you willing to go down in history as one who dropped the ball now?

    My daughter is young enough to salvage her life. We need research funds to the Whittemore Peterson Institute. The time is now. There are many, many people just like me all around the world who are aware and watching the actions of our government. Fund the Whittemore Peterson Institute. Put an end to the suffering, it is within reach now.

    You could be next. You could get into a car accident on the way home from work today and need a blood transfusion, donated by one of the 3% to 7% of healthy people who unknowingly carry XMRV. Perhaps you think this could not happen to you, your spouse, your child, your grandchild, but you are wrong. Trust me, from someone who knows what she is talking about, you do not want to go down this road.

    Fund the Whittemore Peterson Institute. Stop discriminating against sick people.

    Lilly Meehan, Ventura, California

  16. It is way past time for ME/CFS patients to become organized warriors and therein lays the problem. I have only been sick for five years but noticed almost immediately the lack of unity that is needed to get anything accomplished.

    One of the earlier comments said "the ME community needs to be solidified....We are too fragmented. Divided we are conquered, united we stand." So our dilemma is how to organize?

    I wholeheartedly agree that we cannot rely on the CAA and am very skeptical about the Phoenix Rising Forums. I have noticed a considerable bias towards the CAA and Dr. Vernon especially by Cort Johnson. Unfortunately, I believe their website has the most active users.

    There is the "Show 'em You're Mad & Fax the Ad" Campaign at:

    although they seemed to be very aligned with Dr. Klimas.

    I have found a few sources that have credited social networking sites (Twitter and FB) as being crucial in coordinating the demonstrations across multiple cities and keeping up the momentum in Tunisia and now Egypt. If Twitter and FB can topple the governments of two counties then maybe if we concentrated our efforts, who knows what could happen.

    We can brainstorm and come up with something/anything that will work. But we need to do something NOW. I am SO tired of nothing being done.

  17. This is superb stuff and mirrors a dialog I had with some ME/CFS warriors of old just this morning, picking their brains.

    Larry Kramer's amazing speech illustrates the fact that we need to create a *movement*. Actions should flow from a well reasoned core set of strategies. Act up was radical sometimes but we get a great glimpse into the planning, learning and commitment involved in those accomplishments.

    A perfect example of a rapid response was the email campaign to fight the naming of Myra McClure to the SEP. Nice job Patricia and all who joined her for jumping all over this right away. Rebuffing these things as they happen is really powerful. Busted 'em red handed. Beautiful. Keep up the heat until she fulfills her promise.

    If you're not angry, you're not paying attention. But that anger need to be properly channeled and focused. Act Up was an organization of amazing foresight and intelligence. That takes lots of great and committed people.

    We can do amazing things from out laptops in our beds. But in the end we are going to have the courage to leave our beds to congregate and infiltrate. It's going to take physical sacrifice in come cases. Not everyone can, but some must. We're going to have do what we can and then ratchet it up a notch or two. For some that may mean rolling over on the bed and starting up the laptop to check in on the daily doings and firing off a few well targeted emails. For others it should be getting to a meeting and showing patient solidarity. We need to draw in patients who function at a higher level physically to attend the events many of us cannot.

    It's lives that are on the line. What bigger stakes are there? Was it over when the Germans bombed Pearl Harbor? Just checking to see if you John Belushi fans were still reading. ;)

    I have the honor of knowing many, many dedicated, creative and smart advocacy-minded patients. I believe we can and we will come together to form a *movement* to eradicate ME in our time.

    The forums are dripping with energy and creativity. Too cool.

  18. Anonymous said

    "There is the "Show 'em You're Mad & Fax the Ad" Campaign at:

    although *they* seemed to be very aligned with Dr. Klimas."

    This got much longer than intended and isn't as much a response to the above as it is an example of one thought process that could unravel our growing advocacy push.

    The "they" is us. We need to attack the truly entrenched enemies. Simon Wessley is, Elizabeth Unger is, William Reeves is still hurting us, so is James Jones behind the scenes. Myra McClure is a self-professed enemy. Mindy ticked off a pretty good list up above. DSM-V is seriously evil. We need to pick our targets carefully.

    Guilt by association is only going to lead to added mutual distrust and a disintegration of what is starting to build. That's not to say don't be smart about those with whom you chose to collaborate. But we are going to have to find ways to affiliate and the alliances may be fluid when we differ in opinion or focus but we have to keep our eye in the prize. Cure M.E. in our time.

    Please consider carefully the "well person X is tied to organization Y who tends to favor company Z" which means it's ALL suspect. Judging things on their own merits is my preferred approach.

    Almost every patient org could stand to be "reshaped" in some way. Some more than others to be sure. :)

    One example of an effective collaboration this was the group of 10 (?) orgs that dropped demands on Unger's desk and then went public when she didn't respond. It's going to take much more than this to "fix" the CDC but it was a pretty well targeted and stroke.

    I'd like to try and illustrate this thought a little more with the reference posted earlier.

    The aforementioned action was a collaboration of an infant website (that I started for advocacy purposes) with the MCWPA. It's pretty much just me and it's really not acting up. Yet. I'm not trying to pimp that site, there's not much there yet to pimp - ideas welcome! In this case I collaborated with the MCWPA to hit the new congress with the Washington Post ad. What we tried to do was create a really simple electronic fax campaign and I think it can be a model for other efforts. Please take ideas and improve them! Not everybody liked the idea of the ad or that specific ad but hell, once it's bought and paid for let's leverage it. Others took the template letter and expanded the focus to get funding to the WPI.

    I think we can win this war but it's going to take a movement to do it.

  19. I thought the Fax the Ad campaign was a great idea! A link to find your Congressmen and their fax numbers, sample letters to download and a link to send two free faxes a day! And all can be done while lying down with your laptop. Now that is something that all of us with this illness can do.

    I sent my first two faxes today and think it's a great starting point. I also think we can win this war but Otis is right. It's going to take a movement to do it.

  20. i agree apart from the fact that words alone are not enough . we have critiques of studies therefore as well as demands why not also e mail those just to show how much money is being wasted on such crap useless unscientific studies. we can be proactive aggressive and objective.I believe that this approach has not been tried in the past and it would be a good time to do it now

  21. Thanks for a great article, Mindy, and thanks for the excerpts from Larry Kramer's speech. Six months ago I was saying what you are now saying, and I was being ostracized because I was too radical. I think people are beginning to wake up. The "inside voices" approach has gotten us 25 years of sickness and death. We need unity, but only with those who are seeking to help us reach our goals--not those who are trying to divert us and use us to secure their own ends. And at last we are finding our own voices and are joining hands with those who seek the same goals. We're mad as hell and we're not going to take it any more. We are, at long last, after 25 years of hell, realizing that SILENCE = LIVING DEATH!

    We all need to wear the teeshirt and take the words to heart!

    Patricia Carter
    XMRV+, 24 years M.E.

  22. Bloggers on Hillary Johnson's site were talking about joining forces with Autism warriors at one point. There is much to learn from Autism parents. I wonder if meeetings can be arranged between ACT UP, the Autism group Hillary was in touch with (and others), and globally representative ME patient groups via the web. It might be useful joing together to learn to better develop an effective advovcay campaign. We all have health as a common denominator and perhaps if we come together we can energize one another and come up with concrete action steps. Meeting together to talk is step one.

    It might be worth approaching our peers to learn from them. In the end, you never know what will happen. We may even create an international health movement. First though, we have to open dialouge.

  23. Mindy
    Any scientist who has had any collaberation with the WPI would not be allowed to look at there grants under conflict of interest rules. Many you have listed would have to leave the room when WPI grants were reviewed.

  24. Damn the CAA for abandoning us! They have the structure, the paid well staff, the national cloak, all of which could be the basis for the movement, and they won't do it.

  25. I agree with Otis...."The They is us! The finger pointing has really slowed down advocacy efforts. I see it everyday and it has become frustrating to the point that it sometimes seems useless to try. Every action is met with paranoia and even hostility. This has to stop.

    Regarding the above mentioned letter to Dr. Unger at the CDC. This letter never received a reply from Dr. Unger so a petition was started asking for Dr. Unger to address several demands. Every signature on this petition is emailed to several of Dr. Unger's supervisors. This is an excellent campaign, yet the petition only has around 500 signatures. Why? If you would like to sign this petition please go to:

    Jill Justiss

  26. The trouble is, we're too sick to sustain energetic battle. ACT UP wasn't the sickest people marching, it was their friends marching on their behalf.

    Some friends, families, and strangers were inspired by the AIDS Quilt to join in the fight.

    Again, ACT UP is a great model but they don't see our fight as their fight.

    We were wishing for an organization like ACT UP and thinking about the AIDS Quilt when a friend and I created Sock It To ME/cfs. Instead of quilt squares, individually decorated socks, like Christmas stockings only in all kinds of colors and designs, would represent patients, be displayed in demonstrations at the W.H.O and N.I.H. and such, and would march on our behalf.

    Lots of people liked this idea and with their encouragement and input we started a website and sent out lots of publicity to launch the project.

    The socks have trickled in slowly: not enough as yet to create a demonstration with even mild impact. It has only been less than a year since we launched this, so it can still take off. But we founders of the project put all the energy we could into it, and we crashed hard. (If you have some energy or know someone with some energy to help out, please check out our urgent appeal: we'll lose our website in a couple weeks if someone with energy can't take over. )

    Other people have started other projects, like MCWPA which placed the half-page advertisement in the Washington Post. A great effort but again, patient-led, and what if they crash?

    We really need more healthy people to join with us. Seems to me the healthy people who care at all are usually caretakers of us sick folks, and so they too have limited energy as they're busy helping us.

    We do have tools that ACT UP didn't have when it started: internet and email make organizing easier and can amplify our voices. But there have been people trying with all their might to organize effective action for decades now, and burning out or dying off.

    What really got peoples' attention about AIDS was the fear that they could get it too. Also it didn't hurt that the celebrities who had the disease started speaking up and/or being mourned. Where's the Blake Edwards Trust for ME, or the Cher and Randy Newman CFS Concert?

    As long as it's only about us, who gives a damn?

  27. I would like to contribute, but the question is how, where, what, ... I see several problems:

    Problem 1: Cause
    HIV ---> AIDS
    ??? ---> ME/CFS
    Jury is still out on whether XMRV is a pathogen, last I heard there is no clinical/reliable test yet.

    Problem 2: Obfuscation
    The dozen or so sets of criteria require almost that you should demand that every discussion, thread, article, ... starts with clearly defining what you mean by ME/CFS (which set of criteria are you using).

    Problem 3: So called patient organizations
    I live in a country of 10 million people. I've lost track of the number patient organizations. What they have in common: small (couple of people, mostly anonymous), no feedback, no involvement allowed, secrecy, no democracy, .... One of the patient organizations claiming good connections in the government demands dolphin therapy, I kid ye not. Another member (sole member?) of a patient organization is now going to represent us on the European level. Who is she? What does she do? What did she do on national level? What will she do on European level? What is her stand on XMRV, .. ? None of our business.

    Problem 4: curse of social media
    Social media can be powerful when it has focus and is firmly rooted in solid facts. For ME/CFS I think the motto it is be divided and overruled. Some patients are promoting Mickel therapy others are demanding antiretroviral therapy. How can you expect politicians or journalists to make sense out of all this?

    There is a saying that a people has the politicians it deserves. I say we have the representatives and attention we deserve. That will not change, unless we can find some common ground that is.

  28. Part of claiming your power is refusing to be shamed and to refuse to let others define who you are. The term CFS has both shamed and defined this patient population for far too long.

    It's well past time to drop the fatigue bullshit. This is not fatigue. Listen to Alan Light's presentation at the most recent CFSAC meeting. What he sees in ME patients is not fatigue in any of the ways that fatigue is defined in physiological research. And we wonder why there has been so little progress.

    Why do researchers continue to go down the psych road? Fatigue is defined in psychology as the inability to sustain attention. Researchers are studying psychological fatigue. We are not fatigued. We are sick. Your government is fatigued. We are paying them to find us exhausting and they keep taking our money and doing the psych studies.

    Researchers are not patients. There are many researchers who are our allies but as a group, they develop their own biases and even those who are genuinely concerned about and fighting for the patient community have goals that are not perfectly aligned with those of the patient community. That's OK but researchers are not substitutes for patients on these committees and researchers can go off on tangents and need to be reminded by patients to keep their eye on the ball - biomarkers, understanding of the biological processes causing ME and treatment! Thank you Nancy but you're so good when you're focused. Time to get back on task!

    Lastly, a few words about shame. I want to say thank you to those who have stood up and shouted that they have this damned disease and that they will no longer be ignored. I have not always done that myself. The ME community is probably one of the few that rivals the gay community for being closeted.

    Using your own name on posts is not always easy but it can be a powerful statement.

    Think about it.

    Thanks Mindy.


    Shane Carlson

  29. I sent two more faxes already today. Come on people, we have to start somewhere and we have to be united.

    I just re-read excerpts Larry Kramer’s 2007 speech and yes their tactics were extreme but who could blame them? No one cared about their "faggot's disease" so thousands died. I remember becoming beyond outraged that our government simply did nothing.

    I don't know when our tipping point will happen but I'm already there. I am so angry that this illness had robbed me of my life.

    Here's a perfect example of some of the misinformation we're up against:

    When do we start our brainstorming sessions? I'm free all day today and for the foreseeable future.

  30. Johan makes good points, in particular about the disparity of the organisations that ‘represent’ patients and also the patient community itself. AIDS experienced the same issues in the early years. Larry Kramer himself resigned from the organisation he co-founded (Gay Men’s Health Crisis) because of a clash in campaigning styles. The group then continued to be led by a man who didn’t admit publicly that he was gay. Kramer also was vilified by many gays for promoting safe sex and campaigning to close the bath houses, two actions that, eventually, did come to pass.

    It’s hard to say whether or not a more united patient front would have secured greater and earlier funding from the Reagan Administration(s) at the time (it took six years for this to kick in), but one of the key tipping points was the spread of AIDS beyond gays and drug users and into heterosexuals and children.

    A similar tipping point may occur with ME/XMRV if the latter proves to be pathogenic in cancer. We know that Frank Ruscetti has shown this in prostate cancer but not been published yet. We also see Ila Singh detecting XMRV in malignant breast cancer tissue. Judy Mikovits has trialled ARVs on an XMRV+ lymphoma patient and seen a significant reduction in lymphocyte count.

    For this reason, perhaps cancer patients are more natural allies in this campaign than AIDS sufferers. Perhaps it is the former who we should be lobbying proactively to become involved in the cause.

    As a postscript, and as an example of the overlap between ‘now and then’, in May 1983, an article was published in JAMA that stated AIDS could be transmitted by routine household contact (based upon eight children in high risk households developing AIDS). The data were proven to be erroneous (HIV was transmitted to these children during birth) and the supporting editorial found to be based on the paper’s conclusions only. The author was James Oleske (retired chair of the CFSAC) and Fauci wrote the editorial.

  31. I was living in SF during the early eighties, and had many friends who were in the health-care profession.
    They told me an incredible thing that I could scarcely believe.
    That disgruntled and disenfranchised AIDS patients had become so angry that they started making good on threats to force action by passing AIDS on to as many heterosexuals as possible.
    As I recall, that was the "tipping point", when the medical profession FINALLY sat up and started acting like they cared about AIDS.

    I wondered "What kind of people could deliberately do such a terrible thing to innocent bystanders?"
    I think that perhaps, at last, I understand.

    It's sick people who have hit the point where they realize that society is "innocently" standing by, waiting for sufferers to die-out and disappear, while deliberately doing nothing.
    Rationalizing that "It is all for the best", because this is simply:
    "Nature, taking care of itself"

  32. Johan,

    In response to your problem 4: curse of social media, I am referencing an article regarding social media and its role in Tunisia and Egypt.

    "Social media is a new tool for revolutionaries: "Clearly, the internet doesn't make the dissident," says Nancy Scola in The American Prospect. But activists everywhere in Tunisia and before that in Iran are making use of the web to coordinate and rally their supporters. "What's happening in Tunisia isn't a Twitter or a WikiLeaks revolution. It's just what revolution looks like these days."

    Social media is the tool for ME activists to communicate, coordinate and rally our supporters quickly. Like ACT UP, we need to UNITE and start to do SOMETHING.

    I am still available for brainstorming. Anyone else?

  33. 'As I’ve said many times on this blog, when the HIV/AIDS patients started fighting back, that’s when they got results.'

    Mindy, The resignation of McClure from SEP is brilliant news, she should never have been there in the first place and all power to those who challenged her appointment, but your statement above is a little offensive to those of us with ME - I'm in the UK - who have been fighting doctors for decades and trying to mobilise support for the neuroimmune status for our illness. Things do seem to be changing now, slowly, slowly, and that is surely down to the cumulative effort of our years and years of fighting back as well as current concerted efforts and increased sharing of information - and research - through the internet. You write a very informative blog, but it is not good to appear condescending, even if totally unintended, which of course, I am sure it is. Please realise we would be - and have been - fighting back whether you are blogging or not. Boycotting is a great concept, but not really possible to 'boycott' the media, they really would not care and would just print an apology, that is what they have always done. Forgive me, but I think that idea is a little ingenuous. It's doctors and politicians we need to be boycotting, those who make our healthcare decisions. And those boycotting McClure's appointment did a grand job. Well done indeed!

  34. I’m not out to offend anybody. This isn’t personal; this is business. HIV/AIDS patients got drug therapy because of ACT UP. Period. ME/CFS patients got no treatment because they didn’t ACT UP. Period. Change is so slow in the ME/CFS community, and after 20 years of writing about this illness, I’m trying to speed things up because I want patients to get the medications that will get them well, and I want patients to be given the respect that they deserve.

    I think proceeding the way things have been going is a clear recipe for failure. These are my opinions, and this is my blog. If you find my words or attitude offensive, that’s your right, but I'm not going to change them.

    As far as boycotting and the media are concerned, of course you can boycott products: You tell the publisher that you’re no longer going to buy the paper/magazine, and you tell the print advertisers and TV/radio sponsors that you’re no longer going to buy their products.

    I’ve been in magazine publishing most of my life, and one angry protest letter from an advertiser makes the publication’s publisher quake in his/her boots. I’ve experienced it firsthand on several occasions. That’s why a thousand protest letters to advertisers would have a huge impact. If enough advertisers withdraw their advertising, the newspaper/ magazine goes out of business.

    I think patients might consider starting with the publication Retrovirology, which published that group of negative XMRV studies recently. Target the advertisers and start firing off letters. If those advertisers receive a ton of angry letters, they’ll think twice about advertising in the publication, and they’ll certainly complain.

    When enough advertisers complain to Retrovirology or cancel their advertising, the magazine will reformulate new policies and stop pissing on ME/CFS.

    Get them by the balls or the pocketbook, and their hearts and minds will follow.

  35. It is about economics, not ethics. Forget the ideals, the soft fuzzies and the kind words. IT IS hard to think about greenbacks when for 25 years I have heard so many awful stories about what this CRUD illness has done to people. I hear those voices and I want to appeal to human decency, but I KNOW this will not work. Where a lot of money is involved, ya have to go outside the realm of common decency. This does not mean chewing at other patients. It does mean using precious energy, taking risks and thinking about ways to get to the core. FUNDING, LACK of FUNDING = operational boring regulatory stuff = money being spent with negative benefit to us. We all count. We are not invisible.

  36. Mindy, I have a question about Emory. Is all of Emory "bad egg" or only the psychiatry dept? I thought the virology dept at Emory was studying XMRV in rhesus macaques?

    Second, how do we find out who purchases ads in Retrovirology?

  37. I've been experiencing the illness for almost 28 years and the reason progress is so slow is not really the fault of patients, which you seem to be suggesting. It is to do with idealogy and power and of how difficult it is to break it down. Patients - often very sick - have done a fine job in my opinion. Not asking you to change what you write just making you aware of how you might come across to PWME, but that does not seem to concern you! And as far as ME is concerned the political is personal. You have experience in magazine industry, I can't argue with that, I take your point. But the only reason the media publishes nonsense about ME is because it is constantly fed it by biased scientists - and in UK Wessely sits on the Science Media Centre panel as you no doubt know. We need to break the hold of these scientists. As soon as the scientific community and governments start behaving with integrity and doing biomedical research then we are going to get answers. I think PWME tend to use their energy wisely and given the choice of boycotting the media or a medic they would go for the medic. Yes, in an ideal world we could cow the media but boycotting 'trade' doesn't always work in the wider political world. Your last sentence is rousing and I so wish it were true - but this kind of action takes years and PWME don't have the energy.

  38. Willow,
    You're right. It's the psychiatry department at Emory that's the problem. As far as who purchases ads, you get a copy of the magazine and look at the ads. The best issue to target would be the issue that XMRV negative papers were in.

    Look, I know patients are working hard to effect change, but it's not happening. Einstein's definition of insanity is doing the same thing over and over and expecting a different result.

    What I'm trying to get across is that to change things, ME/CFS patients have to target the government and the media the way the ACT UP people did. The current methods aren't working. You can't argue with success, and the ACT UP people did go after the drug companies, the advertisers, Fauci, etc., and that's why they got results.

    Yes, some scientists are feeding reporters nonsense, but if you strangle the advertising the papers will stop publishing the nonsense, and it's relatively easy to do. That has been my personal experience in publishing. That's how it works. Today nearly all publishing is controlled by advertisers.

    Think about what motivates the opposition. Money, power, control, and the war against the weak. So go after those motivations, and you break them.

    Be open to trying something new. Because it just might work.

  39. Mindy, I am not the least bit offended by your opinions and agree with your statement "HIV/AIDS patients got drug therapy because of ACT UP. ME/CFS patients got no treatment because they didn’t ACT UP...I think proceeding the way things have been going is a clear recipe for failure."

    Yes, we have an illness that makes us very fatigued blah, blah, blah. But if we keep doing the same thing and expecting different results, well I think that is the definition of insanity. We're not on our death beds and can write letters while reclining with our laptops. We can make it really easy and create sample letters to download and use the service that allows two free faxes a day....and they will fax for us. Come on people, we can do that.

    I appreciate and respect your experience in magazine publishing and what does and does not work with advertisers. I do have the same question though as Willow. I am looking at Retrovirology and am having some difficulty identifying the advertisers. I see one ad for Scientist Without Borders...and then I think my brain fog is taking over and I do not see any more.

    I really want to thank you for giving us a push. Obviously, we needed a big one.

  40. Anonymous,
    Most of the advertising in journals is for drugs.

  41. Great Blog Mindy. Is there more mileage to be got from continued pressure on why McClure was selected in the first place? Her inclusion was an insult not just to patients, but also to dedicated physicians who have studied ME/CFS for many years. What is she supposed to know about it?

  42. Mindy, you may want to take David Streeten off of your list of Scientists who M.E. patients might want on the SEP and other committees. He died in 2000. Patients are sending that list to the NIH. Might look kinda weird asking for a dead guy to be on the panel...

  43. Anonymous,
    You know why they appointed McClure: to keep the psychological camp in power. Instead, in my view, it's a better use of patients' time and energy to find a good replacement for McClure, pound it into the government that that's who you want and get Jim Jones off the SEP panel as well and find a replacement for him. Keep your eyes on the prize; don't get sidetracked with things that won't get you what you want.

  44. Don't like hectoring tones, Mindy, that's all. It's not about been opening to new things. And I suspect the advertising issues might be more relevant in the States, which of course is where you are coming from, but we don't all live in USA! I don't think you fully comprehend the stranglehold Wessely and co have had here. (Oh and I wrote a novel about ME, that was quite new.)

  45. @Chris
    I think you're right that the tipping point for AIDS was when it was no longer a gay-disease.
    Back to ME/CFS. What is it? On what can we build a case? What is a solid foundation? Not on XMRV, too risky.

    Glad you see the situation in the UK change in a positive way, albeit slowly. To my astonishment there is an opposite flow in Netherlands and Belgium. In the Netherlands they (biopsychosocial) will launch a 3 day campaign with the main event on May 12th (of all days) to convince doctors and policymakers that CBT and GET are the only treatments for CFS.
    In Belgium there have been several articles in the major (quality) newspaper, some neutral, but most based on Oxford criteria and mentioning chronic fatigue. Yesterday, an article by a patient advocate got published (in the opinion section), received lots of comments and then first comments became unavailable and then the article got removed. I still can't believe it. This is the most influential newspaper in Belgium and they censor! Am anxious to get hold of paper copy, they can't unpublish that. Luckily article is available on Facebook, but this is worrying.
    Boycotting is one thing, we need more doctors and politicians on our side. To win them over.

    But I can't help but watching how much energy of ME/CFS patients is wasted on all kinds of small initiatives: changing avatars, Facebook groups, awareness for other diseases, preaching to the choir, ...

  46. I think along side new names it should be stated patients are looking for CONCRETE EVIDENCE of change in policy toward ME. Let's let them know slippery phrases and manouvers like was used in the Tower study and press realease are not going to work on us.

    I suppose the U.S. government really thought they would push McClure through without a reaction, or just handle us using political tactics. Boy, do polticians have to join modern culture. Let's all prove them wrong.

  47. Mindy hasn't employed a hectoring tone, NMJ. I wish I could say the same for you. Please stop.

    Mindy, thanks for providing the inspiration we all need to commit ourselves to new and more effective forms of activism. This blog has been a beacon of hope for our community.

  48. @ nmj
    Where does Retrovirology, a British publication, get part of its money to publish? Advertising! As far as Mindy’s “hectoring” tone, what are you talking about? She's simply identifying a model that works: the squeaky wheel gets the grease. Pointing out strategies that haven't been effective in 25 years isn't attacking anyone. It's important to stop seeing this as a personal attack and see it for what it is: the current advocacy tactics haven't worked. If we want crumbs, we can continue on as we've been. I, for one, want something more. I want effective treatment to get well. Sure, Wessely’s entrenched. All the more reason why we have to force him out with ACT UP tactics and whatever else works.

  49. Until they ultimately start singing together in harmony and unison, it IS the choir that needs preaching-to.

  50. Mindy, would you mind answering a very novice question for me?

    When I click on the link “Study finds contamination in virus link to chronic fatigue syndrome” in Retrovirology, it takes me to another page where the article actually appears for readers:

    On that page, I see three advertisers:
    331 NW Kensington Lane
    Suite 14
    Lake City, FL 32055

    RJO Futures
    222 South Riverside Plaza
    9th Floor
    Chicago, IL 60606

    Aberdeen Asset Management Inc
    1735 Market Street
    32nd Floor
    Philadelphia, PA 19103

    Am I on the right or wrong track regarding these being the advertisers to write and boycott?

  51. Here in the UK a lot of media are wary of carrying stories about ME/CFS *because* of the backlash they get. They carry a story and there's always patients who disagree strongly and soon there's a lot of arguing and infighting. So a lot of good journalists are wary of being dragged into that.

    I don't know how this fits with the discussion. Just to say that hitting media with thousands of outbursts can backfire. If everyone says the same (considered) thing then that might have a different effect. But even by naming the condition you will get a splintered reaction.

    I wholeheartedly agree that the they is us/me. But there's always going to be sections of the community who cannot or will not align themselves with a voice which is a compromise in any form. The key is to become the dominant voice and looking at how other patient groups have done that is I think very valuable.

    A lot of food for thought in your blog and the subsequent comments so thanks for that.

  52. @Erik
    Great comment "it IS the choir that needs preaching-to"
    Got to remember this one.

  53. Anonymous,
    Every time you click on an article, the ads change, so be aware of that. And depending where you live and other factors, you may also see different ads. You can target these advertisers, but I'd get a print copy of that issue, and target the print advertisers as well. They're paying big bucks to advertise in the journal.

  54. Okay, let's go with the advertising boycott. Most people who subscribe to Retrovirology, BMJ (also dodgy re. ME) etc are doctors and scientists, the general public does not. How can we be a threat when we are not even buying the journal in the first place? We tend to only know about these journals when an ME article is highlighted, and then we often only have access to the abstract. We depend on others to link to the full article or we could borrow a hard copy from library, if well enough to go there.

    And it seems not that easy to work out who the advertisers are from comments above. But, once clear, we could all email each other the details and get on with the boycott. Okay.

    And how will we pressure the science mags to revise their policies - demand they only publish XMRV findings that are pleasing to us?

    I think there are cultural differences here: the XMRV findings are now central to the USA struggle against ME. They are, of course, also very important in UK, but we are still fighting the all pervasive Wessely effect, it ladders down to NICE, MRC, NHS. Boycotting Retrovirology mag is not going to loosen that grip, I feel sure. Maybe boycotting advertisers *alongside* our fight against Wessely, but not INSTEAD of. Does that make sense? We can't pin a whole revolution on this Retrovirology mag is what I am saying. And yet, you, Mindy, are determinedly saying that we have done the Wessely fight to death, give it up. I think UK people with ME would largely disagree with you.

    (And as for hectoring tones, I am only making my points clearly and robustly, but if someone said to me politely over at my own blog 'you seem a bit dismissive' - as I did to Mindy - then I would take that on board in a polite way. Tone is very difficult to get right in these kind of discussions and as this is Mindy's place, if I am perceived to be challenging her, of course I am going to be told off by her followers, that seems to be how it works! People don't like to find dissent in their comfort zone. Mindy's blog is a great source of info on the ME battle, I never said otherwise.)

  55. @Johan
    I would like to specifically address your "Problem 4: curse of social media" in a previous post.

    Quoting an article that addresses the role of social media in Tunisia and Egypt:

    "Social media is a new tool for revolutionaries: "Clearly, the internet doesn't make the dissident," says Nancy Scola in The American Prospect. But activists everywhere in Tunisia and before that in Iran are making use of the web to coordinate and rally their supporters. "What's happening in Tunisia isn't a Twitter or a WikiLeaks revolution. It's just what revolution looks like these days."

    The web and social media are the newest tools we (ME Activists) can use to communicate, coordinate and rally our supporters. Act Up did not have the web to create and unify their revolution but they still accomplished their goal.

    Here is the link to the article I just quoted:

  56. You may not be aware of the additional information regarding your comment about the Klimas study, "I believe one of the reasons that patients became so pissed about the recent Klimas study was because it felt like a slap in the face: How could Nancy Klimas, who knows full well that biomedical research is what’s needed, participate in a cognitive behavioral therapy study? I believe Klimas’s name on that study shows that her priorities are not always patients’ priorities, no matter how proactive she’s been to the cause over the years..."

    It helps me gain perspective when I am able to view both sides of an issue. My opinion is totally different after reading Dr. Klimas' post on January 30, 2011, to which is as follows:

    "I pressed Dr. Antoni to get this study published in large part to rebut Dr. White’s claim to cure 25% of ME/CFS patients with CBT. Dr Antoni’s study shows that while CBT helps people with the illness as it does in every chronic disease model ever tested, it does not cure the illness. Dr. White challenged me in a meeting a year ago saying nothing else had been published to deny this finding. SO now you have a publication, written by a psychologist and well regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness.

    It is easy to pick apart any study after the fact, but put this in the context of the time (2001 when the grant request was written) and place (the US where we were absolutely obliged to use the CDC case definition if we hoped for funding at the time.)

    I am very proud to work with a multidisciplinary team that includes experts in autonomic function, immunology, cell biology, psychoneuroimmunology, genomics, systems biology, nutrition, measurement illness state… the list goes on. Its a very exciting time and the team is very much jazzed and wants to see the work we do in all of these areas lead to both a clear understanding of the illness at the cellular level and then to effective treatments. You are going to see many papers this year from the different members of the team and taken separately you may fail to see the big picture. Don’t get sucked into too narrow a view. Wait and see… some amazing science is underway."

    Nancy G. Klimas, M.D.

  57. Mindy,
    I did some research and it appears that Retrovirology is strictly an online journal. I even called several bookstores and asked for a print copy but could not find one.

    Their website states "Retrovirology is an open access, online journal that publishes stringently peer-reviewed, high-impact articles on basic retrovirus research."

    Did I misunderstand what you meant by "print copy"?

  58. Anonymous,

    Great work. OK, so it's only online. Click on the study several times to see the ads change.

  59. >As I’ve said many times on this blog, when the HIV/AIDS patients started fighting back, that’s when they got results.

    Their results were a disaster. the government got away with large scale mass murder. There is not that much that separates serials killers and members of congress and presidents. Where were all those tens of thousands of state and local officials while it was happening. Just like they kept quiet about the treason and mass murder during 911, they were keeping very quiet about AIDS and touting the big lies. sociopaths don't give a rats ass about human life.

    The government with collusion of 535 members of congress and many presidents over many terms openly genocides thru hepatitis B vaccines. Also colluding were virtually all the AIDS organizations and most gay groups.

    ACT UP is one of those covertly controlled government front groups. It aided and abetted in the cover up and mass murder. there are no shortage of sociopaths who will do the dirty work.

    The gay community in US sticks their head up their rear end just like your average cfids patient. The can't confront reality.

    They point at real petty stuff and imagine they are making strides.

  60. Great post, Mindy. Agree with everything you said.

  61. I was not pissed off at Dr. Klimas's study in the least. And, I LIKE YOUR bLOG AND YOUR PASSION FOR OUR CAUSE. I can see how politics and science are woven into interlocking spheres where all avenues must be explored to become established. I also see how rough it is to concede to being mandated to study an alternate route in a proposed scientific study; just to get your own study to be funded. SIDEBARS ARE a part of our political process.Its' a nasty tool used to pass many unwarrented objectives....tagging on mandated dictations.....vs.....not getting funded. ACT UP and Earth First, in my opinion, are old news. It is my belief that we need "out of the box" and new, highly progressive ideologies if we want help with our illness. Heres the crux, Our Federal Government IS FUNDING our disease. The DOD, THE CDC, THE NIH and a plethora of major philanthropic donors have already recently spent 50 million bucks towards stealth virus hunting and research. Our Government and private sector has acted up for us. But who on Earth will give millions of dollars to those that "Act Out?" I agree with many of your opinions, I just think we need to strategize more efficiently. It is obvious there is power here to overthrow a disliked individual or alliance, this is the obvious. But is this our Mission? Have we lost sight of what we really want as patients? I want remission for those infected and vaccinnes to stop this pandemic. What does everyone else want? Our equation and political climate is vastly different now, than the early 80's. The landscape has changed. I believe we are going to have to create a new model by which to fight with. Once again, I commend you for using your first amendment right and for your blog.

  62. "Scientists who ME/CFS patients might want on SEP, and other committees that decide the fate of ME/CFS patients, include: [...] Charles Lapp, Fred Friedberg, Ellen Goudsmit"

    Nix on these ones, Lapp is pro-GET and conservative, Friedberg often straddles the CBT fence and Goudsmit rejects almost every US ME/CFIDS biomedical discovery and claims ME is less severe nowadays. Lucinda Batemans is also pretty pro-GET.

    "“Experts” ME/CFS don’t want include Deirdre Buchwald, John Coffin, Suzanne Vernon, Brigitte Huber, Jonathan Stoye, Peter Manu, Edward Shorter, Christine Heim, any psychiatrists/psychologists from England or Germany, any “scientists” from the CDC or Emory University."

    Don't know about Germany but the Netherlands (Nijmegen) are ones you want to totally avoid.

    You also don't want Susan Abbey.

    There are some non-psychiatry people from the UK its best to avoid also, because all they do is work as a palatable CBT/GET "front" for them, eg. Selwyn Richards, Prof Findley, Prof Pinching, some others.

    Re Klimas, sounds partly she's almost tryiing to distance herself from that study now. The stuff about it being ok because the results were poor is a weak argument because the CBT school thrives on distortion and there were all sorts of untenable claims made before the conclusion.


  63. Thanks for clarifying about Emory, Mindy.

    M and all:

    about Klimas, she's done a lot of good work and she stands up for us all the time. I don't care for her NPY study--particularly the way someone else wrote it up, but she's characteristically in our corner.

    As a (baccalaureate) cell biologist, I think stress as a factor in disease is unscientific and I respectfully invite Klimas and Jason and everyone to explore that possibility, see for example (HT biophile) the very small effect sizes in the analyses of positive studies of conditions where stress is generally thought to be a factor: (in respiratory infections, 0.21, a significance so small that one cannot rule out confounding factors) (in heart disease, a correlation to depression [a biomedical disease] and social isolation, but not other stress such as overwork and anxiety)

  64. The emphasis in my above post came off with the incorrect balance and I again wanted to say: Dr. Klimas is in our corner. She is with us and not against us. She tirelessly researches generally useful things like NK cell profiles, attends meetings and advocates for us. She makes bold statements like:

    "I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it. "

    So please remember all of this whenever Klimas' name comes up. She's on our side.

  65. Willow said:

    "about Klimas, she's done a lot of good work and she stands up for us all the time. I don't care for her NPY study--particularly the way someone else wrote it up, but she's characteristically in our corner."

    That's the understatement of the year. Klimas has done more for patients than any of the doctors mentioned above.

    She runs a clinic that doesn't gouge patients with outrageous fees like Paul Cheney. She has a far better track record than Cheney, who in 2008 admitted to the NCF that he didn't have a SINGLE patient who had recovered. Klimas has numerous patients who have done so.

    Willow said:

    "As a (baccalaureate) cell biologist, I think stress as a factor in disease is unscientific..."

    Well, good luck with that one. I guess we should all just keep pushing ourselves mentally and physically (GET anyone?) and we'll all be fine?

  66. I thought I left another comment here, but I must not have gotten it posted. I meant to clarify because my last post didn't come of with the right balance.

    I meant to say about Dr. Klimas that she stands up for us all the time, and works tirelessly as an advocate and as a researcher doing usually studies that you can't even nitpick, like her NK cell studies--these will likely (the uncertainty here is the politics) be getting us biomarkers which will provide the legitimacy with physicians that we so desperately need. And Dr. Klimas has been known to make bold statements like:

    "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

    Dr. Nancy Klimas has since left her AIDS practice where she likely could have made more money, to work exclusively with the ME/CFS patients who needed her more. She is absolutely in our corner.

  67. Anonymous,

    I was talking more about possible precipitating factors such as stressful life events and chronic overwork, which are often cited as factors relevant to onset, but which I think are not scientific.

    After the Disease is present the game has changed because the body's homeostasis mechanisms are already disrupted. It is this disruption in homeostasis which makes stress a factor (not the other way around).

    About Cheney, I know little of his fees (barely anything that isn't hearsay), but he doesn't publish and I find that troubling.

    About Klimas, hopefully my longer comment came through, but I wholeheartedly believe she's on our side.

  68. @ Michelle above; ON BOTH TUNISIA and ESPECIALLY the recent Coup in Cairo, Social media tools used by AGYM and other groups were only as "an extension to their actvism arm". It took "on the streets activism", (fliers, meetings, oranizational face-to-face,etc) to win the coups....the social and wired media was good.....and enhanced their strategy, but could never and did never "get the win" on its' own. It took much more than social media tools........this is from on the ground recon. I think Mindy has a fine point with ....enough is enough....the time being ripe for activism......I made my other points clear above......Thanks again Mindy.

  69. Wow, and the comments are also very thoughtful.

    Keep it up Mindy! I think most of us think of you as part of our neglected and unfortunate group (though without the disease--thankfully).

    This is the problem as I see it, we, as a community, don't have the energy to have the degree of demonstrations and so forth as an "ACT UP" but we desperately need that brand of public activism to "hold their feet to the fire"... so to speak.

    We *need* public activism with meaningful demands. We are probably going to have to be creative and use social media and other tools to have the same effect as the ACT UP people had. This is the challenge.

    People need to know history is watching.

    And when we do "pick a battle" we need to go all out to win since we can fight less battles than the HIV activists.

    I remember in a history class a prof of mine mournfully noted that throughout all civilization people have risen up, to fight oppression with justice on their side, and that mostly they were crushed...Maybe so... we've taken heavy losses a lot of good people have died...

    But not this time. This time we need to win.

  70. Go Mindy! We are NOT crumbs! Time to get more aggressive and vocal. We will never get the help we deserve if we don't really raise hell!! Let's do whatever it takes!

  71. First we need to get the NAME changed by C.D.C. to Myalgic Encephalomyelitis. Who named it 'chronic fatigue'? Anyone know? Anyway, I do wonder if that was a political move (probably was). Because saying you are tired or fatigued..... lessens the severity in the bulk of the public eye.
    I have it myself. I am willing to write and email. We need to get a billboard up in N.Y. City 'screaming' on behalf of the millions like me and you who are tired of being overlooked and under-believed!


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