Friday, February 18, 2011


 Updates on the PatientsLikeMe Study and an Intriguing Connection to Simon Wessely

The social networking health site PatientsLikeMe recently commissioned a study by New Zealand psychologist Keith J. Petrie on "illness perceptions and their impact on health outcomes" in fibromyalgia and ME/CFS.  Stated simply, this means that one’s “perceptions” cause the illness.

PatientsLikeMe was named one of “15 companies that will change the world” by CNN Reports.  Certainly an organization as vital and life-changing as PatientsLikeMe should be aware what “illness perceptions” means when it comes to ME/CFS.

1,100 patients participating

Eleven hundred patients are participating in this PatientsLikeMe study by New Zealand scientist Dr. Keith Petrie. Petrie believes ME/CFS is psychological and has done several studies with Dr. Simon Wessely. The study was closed on February 6.

However, patients can withdraw from the study at any time, which is one reason I’m posting about this study now.  If you believe that Petrie's study is problematic, consider withdrawing from the study and sharing your concerns with patients on the PatientsLikeMe site, who may then elect to withdraw from participation in that study.

If enough patients withdraw, the study will die.  More importantly, I believe it’s important to explain to PatientsLikeMe what's wrong with the study, and thereby change the mindset and the direction of research.

Already, several patients have posted or written to me that they have withdrawn from the study, much to the consternation of Dr. Michael Massagli, who's overseeing the study at PatientsLikeMe. One patient, Omerbasket, received this letter back from Massagli when he asked to withdraw:

Hello Omer.

I've received your request and will do as you ask.
But there is no reason for us to cease the study.  As I've described the purposes of the study in the survey invitation and in the Forum, I'm not going to repeat myself here. 

Thank you for your participation in PatientsLikeMe, limited as it has been. 

Michael Massagli

CFS Central sent a letter on February 7 to Massagli and to Jamie Heywood, co-founder of PatientsLikeMe, explaining why the study is problematic. (Heywood started the company when his younger brother Stephen was stricken with ALS.) 

I have yet to hear back.

Simon Wessely connection
Since then, a patient who calls himself Doogle on the boards sent CFS Central an intriguing series of connections, starting with the fact that a scientist named Dr. Paul Wicks is director of research and development at PatientsLikeMe. 

Why is this important?  Wicks received his doctorate from the Institute of Psychiatry, King's College London, where Dr. Simon Wessely serves as vice dean for the department of psychiatry.  

At King’s College, Wicks’s supervisors were Dr. Laura Goldstein and Dr. Sharon Abrahams. Dr. Laura Goldstein helped draft Matthew Broome’s journal article "A neuroscience of hysteria," which categorizes chronic fatigue syndrome as a “somatoform condition.”  Somatoform is code for mental disorder.
In addition, Laura Goldstein serves on the executive committee of the British Neuropsychiatry Association with Anthony David, a staunch CBT/GET advocate for ME/CFS.

To be fair to PatientsLikeMe's Paul Wicks, he’s intrigued with the emotional overlay in other diseases.  In fact, according to his profile, his main thrusts are the emotional and cognitive effects caused by ALS and Parkinson’s disease.

Neuoimaging studies not psychological studies
In addition, Wicks has collaborated with Dr. Martin Turner on a neuroimaging project using PET scans of the brain. However, at PatientsLikeMe, it doesn’t appear likely that he'll be involved in ME/CFS neuroimaging.  But perhaps the readers of this blog can change that.

If you believe this PatientsLikeMe study on how “illness perceptions” impact health should be stopped, consider withdrawing from the study and explaining on the PatientsLikeMe boards what's problematic with it, thereby encouraging other patients to withdraw.  Tell PatientsLikeMe what biomedical studies you do want.

Wouldn’t it be outstanding, and a far better use of money, if PatientsLikeMe would do a neuroimaging study on ME/CFS instead?  Wouldn't this be a better use of Paul Wicks's time and expertise?

Sample letter 

Below are excerpts from the letter I sent to Heywood and Massagli:

Feb 7

Dear Mr. Heywood and Dr. Massagli,

As a science reporter, health-book author, and blogger to 100,000 Chronic Fatigue Syndrome patients, I'm discouraged by your recent questionnaire devised by Professor Keith J. Petrie on PatientsLikeMe.  His field of expertise is "understanding illness perceptions and their impact on health outcomes," and the questionnaire is for patients with fibromyalgia or Chronic Fatigue Syndrome.  "Illness perceptions" is a well-known phrase to the CFS community. What it means is that your perceptions cause your disease.

I've been reporting on CFS for 20 years and have lost one of my best friends to the illness. Four patients whom I interviewed back in 1994 for a story on the experimental HIV and CFS drug Ampligen called "The AIDS Drug No One Can Have," for Philadelphia magazine, have died from the disease, one in her 40s, another in his 50s. Their "perceptions" did not cause their deaths.

Despite its benign name, CFS is anything but, and it's certainly not the psychogenic disorder that this questionnaire and Petrie's other studies indicate. For many, CFS is a living death and causes seizures, heart failure, rare cancers, and immune and autonomic dysfunction. For many, CFS is comparable to end-stage AIDS and heart disease in its severity.  Due to its pathetic name, coined by the CDC to ward off disability claims, the disease has been hijacked by psychologists, including Petrie.  Doing this study is yet another slap in the face for CFS patients desperate for biomedical research.

In 2009, a retrovirus called XMRV, similar to the retrovirus that causes HIV, was found in the majority of CFS patients tested. That finding was repeated by the NIH this past summer.  This is not a psychological disorder, and it is way past time to stop treating it as such. Patients with CFS need biomedical research in the same way that patients with ALS and HIV do.

Although I'm sure that you mean well, you're only causing damage and doing patients a great disservice with this study. Please stop Petrie's study, and stop being a party to such studies in the future.

If I can help in any way where CFS is concerned, please let me know.  I would be happy to direct you to researchers who really understand what CFS is and who would draw many more CFS patients to your site.

You may not know that many of the patients Petrie studies don't have CFS; they have idiopathic fatigue or chronic fatigue--entirely different entities.  In addition, Petrie dubs those with CFS "castrophizers."  Is that what you call individuals who are desperately sick, many for decades, with no drugs, little support from doctors or the community because of the stigma caused by the disease's trivial name?  I call these patients courageous.  I call them survivors.

Mindy Kitei
CFS Central

Contact info: 
Mr. Jamie Heywood:
Dr. Michael Massagli:
Dr. Keith Petrie: 
Dr. Paul Wicks:

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.”

Thursday, February 3, 2011


Ousting Dr. Myra McClure from the 
NIH Committee to Approve ME/CFS Grants

Here is an excellent protest letter written by ME/CFS patient Patricia Carter on the occasion of the appointment of Dr. Myra McClure to the Center for Scientific Review Special Emphasis Panel, which approves National Institutes of Health grants for ME/CFS.  Carter has granted permission for patients to copy and paste the letter or any part of it and send to anyone who can make a difference.

Myra McClure, Ph.D. has been appointed to membership on the Center for Scientific Review Special Emphasis Panel, ZRG1 CFSH80 2/22/2011-2/23/2011 meeting. I protest this appointment for the following reasons:
1)  Dr. McClure is not a United States citizen.  Why should a United Kingdom resident be deciding which applicants receive research grants in the United States?  In addition to questions of legality which arise from this, there are further questions of expense, since Dr. McClure's travel expenses will, of necessity, be higher than those of a United States resident.

2)  Dr. McClure has publicly stated that she has no interest in research in the area of Chronic Fatigue Syndrome:  “Nothing on God’s Earth could persuade me to do more research on CFS.”

Source is
this article.

3)  Dr. McClure has publicly stated that she is biased as to the study of the XMRV retrovirus, which is an active area of research in the area of  Chronic Fatigue Syndrome.
Professor McClure was a co-author of the paper published in Plos One in January 2010 titled, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” As the paper’s name suggests, this study found no evidence of XMRV or MLV in CFS patients or controls. This study can be found

Professor McClure has publicly stated on many occasions that there is a high possibility that the XMRV/MLV related virus findings being implicated in CFS are a consequence of contamination.

Source is this article.
I ask that Dr. McClure be removed from this committee and that a qualified retrovirologist who is a resident of the United States be appointed instead.

Here is the list of email addresses kindly provided by Leela Play.

President Obama's Science Advisor, John Holdren, at

Find your congressperson here.

Find your senator here (search in top right corner).

For more on this topic go here.

Tuesday, February 1, 2011

No More Psychological Studies,
An Editorial

In reading the comments on patient forums about the new study, “A pilot study of cognitive behavioral stress management effects on stress, quality of life, and symptoms in persons with chronic fatigue syndrome,” I’m struck by the passion but wonder if patients’ energy might be better served by renewing the government phone call, fax and email campaign.  Why not confront the source of the problem—the National Institutes of Health, which funded the study—and say:  No more. 

The researchers of the new study may all be well meaning, and from my Q and A with Dr. Michael Antoni, the study's corresponding author, I believe he is sincerely trying to help patients, but his agenda isn’t the same as patients’ agendas.  He doesn’t understand the real nightmare of this disease or he'd know that cognitive behavioral stress management (CBSM) is not terribly helpful. CBSM is something most patients learn over time.  They learn, among other things, to pace themselves, to distract themselves, to seek support, and to break an overwhelming project down to bite-size pieces. Are those techniques helpful?  Yes.  Do they get patients back to work or school?  No.  Do they enable patients to socialize with their friends and family regularly, or lead normal lives?  No. 

When Antoni says that CBSM is used on HIV/AIDS and cancer patients with success, I say those patients also have retroviral and chemotherapies, and that is where the real benefits come.  CBSM or cognitive behavioral therapy or talk therapy is just a little more icing on the cake. 

I believe the time has come to renew the campaign, to flood members of Congress, plus Drs. Francis Collins and Tony Fauci at the National Institutes of Health, Secretary of Health and Human Services Kathleen Sebelius, and Centers for Disease Control Director Dr. Thomas Frieden with faxes, emails and phone calls every day, saying, among other things, no more psychological studies.  No more. 

In addition, in my view it's time to stop heeding the advice of anyone who cautions ME/CFS patients to stop hounding government officials.  Are you kidding me?  Change occurs only when people make government officials so uncomfortable, so embarrassed and so beleaguered that they finally relinquish control and begin listening. 

It's my belief that patients should stop bombarding government officials with reasonable demands after the following events occur:  The psychological studies stop, more money is allocated for excellent physiological research, effective treatments are found, and patients quit being patients and, instead, live healthy lives.