Friday, October 22, 2010

Dear Doctor...

"Teach thy tongue to say 'I do not know,'  and thou shalt progress."
                          -- Maimonides (1137-1204)

How To Be Sick

Observation from
"When I typed "How to be sick" into Google, the second book result that popped up was something called Never Be Sick Again: Health Is a Choice, Learn How to Choose It. I felt angry, because I believe it's a lie that a person's choices can always bring them to full health, and I believe it's a lie that harms people."

* * *
Firecat has it nailed -- our entire culture (especially the medical establishment) is built around the notion that you must have done something wrong in order to get sick.
The only thing I did wrong was that I left my nice germ-free apartment during flu season.
I've had doctors accuse me of lying to them that I cannot be this sick if I am truly following as good health habits as I describe, trying to get me to cop to it that I lied about smoking, drinking, drugs, caffeine, diet, exercise habits, etc.  It's those stellar health habits that kept me at work full-time for 12 years after being diagnosed.  I'm sure if I'd been doing everything wrong, I would have become disabled a lot sooner than I did.
I didn't "choose" to get sick -- it found me.  I didn't "choose" to stay sick -- doctors who refused to accept the illness for what it was and prescribed the wrong pills made it worse.
Yes, at some point my eating habits deteriorated, because I was too sick to go to the farmers market twice a week to get fresh organic produce -- any time I left my house, it was putting me down for the rest of the week. 
One day, I went to the farmers market, collapsed immediately on arriving home, and by the time I felt up to carrying my purchases from the hallway to the kitchen at the back of the house, everything had rotted from not being refrigerated in 100-degree heat.  I basically hadn't eaten for a couple of days because the exertion of getting the healthy food had exhausted me to the point I couldn't prepare the food I'd bought.
Obviously, if eating well were the solution, I wouldn't have gotten that sick; at that point, life became about survival, and canned vegetables are better than not eating at all. 

If I had my choice, I would have been well and back at work within a week or two after losing my job.  But that didn't happen because I wasn't getting the right prescriptions, and that's something I have no control over.  I don't have a prescription pad, all I can do is ask someone else to prescribe what I need and hope that he complies.  Instead, I got months of "just try this one more anti-depressant and if it doesn't work, then I'll give you what you asked for", followed by accusations that I didn't want to get well when yet another anti-depressant served only to make me sicker, and just for that, another prescription to treat something I don't even have, because he didn't want to admit that his diagnosis was wrong and the one I'd handed him on a silver platter at the first appointment was right.
Most offices told me "Doctor does not see patients with CFS", so I was stuck with the incompetent one I had until I found someone else who was willing to take me on as a patient.  At least I could feel that by going to the bad doctor I was doing something toward getting well instead of just sitting home doing nothing.
That problem is now solved -- I can get to WPI in a few hours.  I will never again need to put up with doctors who don't know what they're doing, because I can go to the experts.  It's been a long time coming, and I'm thankful it's here.

"Courage in women is often mistaken for insanity"


If you have NOT heard this story about how these ladies suffered so that we now have the right to vote, you will want to read.
Subject: Fwd: Fw: Women and the Vote
 This is the story of our Mothers and Grandmothers who lived only 90 years ago. 

Remember, it was not until 1920 that women were granted the right to go to the polls and vote.

The women were innocent and defenseless, but they were jailed nonetheless for picketing the White House, carrying signs asking for the vote. 

And by the end of the night, they were barely alive. 
Forty prison guards wielding clubs and their warden's blessing 
went on a rampage against the 33 women wrongly convicted of 'obstructing sidewalk traffic.' 

(Lucy Burns)
They beat Lucy Burns, chained her hands to the cell bars above her head and left her hanging for the night, bleeding and gasping for air. 

(Dora Lewis) 
They hurled Dora Lewis into a dark cell, smashed her 
head against an iron bed and knocked her out cold. Her cellmate, Alice Cosu, thought Lewis was dead and suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking, slamming, pinching, twisting and kicking the women.
 Thus unfolded the
 'Night of Terror' on Nov. 15, 1917, when the warden at the Occoquan Workhouse in Virginia ordered hisguards to teach a lesson to the suffragists imprisoned there because they dared to picket Woodrow Wilson's White House for the right to vote. For weeks, the women's only water came from an open pail. Their food--all of it colorless slop--was infested with worms. 

(Alice Paul) 
When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited.   She was tortured like this for weeks until word was smuggled out to the press. 

So, refresh my memory. Some women won't vote this year because - why, exactly?   We have carpool duties? We have to get to work? Our vote doesn't matter? It's raining? 
  (Mrs. Pauline Adams in the prison garb she wore while serving a sixty-day sentence.)

I went to a sparsely attended screening of HBO's new movie 'Iron Jawed Angels.'   It is a graphic depiction of the battle these women waged so that I could pull the curtain at the polling booth and have my say.   I am ashamed to say I needed the reminder.
(Miss Edith Ainge, of Jamestown , New York )
All these years later, voter registration is still my passion.  But the actual act of voting had become less personal for me, more rote. Frankly, voting often felt more like an obligation than a privilege.   Sometimes it was inconvenient.

(Berthe Arnold, CSU graduate)
My friend Wendy, who is my age and studied women's history, saw the HBO movie, too.   When she stopped by my desk to talk about it, she looked angry.   She was--with herself.   'One thought kept coming back to me as I watched that movie,' she said.   'What would those women think of the way I use, or don't use, my right to vote?   All of us take it for granted now, not just younger women, but those of us who did seek to learn.'   The right to vote, she said, had become valuable to her 'all over again.'
 HBO released the movie on video and DVD.   I wish all history, 
social studies and government teachers would include the movie in their curriculum.   I want it shown on Bunco night, too, and anywhere else women gather.   I realize this isn't our usual idea of socializing,
 but we are not voting in the numbers that we should be, and I think a little shock therapy is in order.

Conferring over ratification of the 19th Amendment to the U.S. Constitution at National Woman's Party headquarters, Jackson Place , Washington , D.C.  L-R  Mrs. Lawrence Lewis, Mrs. Abby Scott Baker, Anita Pollitzer, Alice Paul, Florence Boeckel, Mabel Vernon (standing, right))
It is jarring to watch Woodrow Wilson and his cronies try to persuade a psychiatrist to declare Alice Paul insane so that she could be permanently institutionalized.   And it is inspiring to watch the doctor refuse.   Alice Paul was strong, he said, and brave.  That didn't make her crazy.
 The doctor admonished the men: 'Courage in women is often mistaken for insanity.' 
 Please, if you are so inclined, pass this on to all the women you know.  We need to get out and vote and use this right that was fought so hard for by these very courageous women. Whether you vote democratic, republican or independent party - remember to vote.

Helena Hill Weed, Norwalk , Conn. Serving 3 day sentence in D.C. prison for carrying banner, 'Governments derive their just powers from the consent of the governed.'


Your Mission, Mr. Phelps, should you decide to accept....

jeanharrison@VERIZON.NET writes:

I think  it's time to start lobbying the only group which will directly  
benefit from our getting treatment - the drug  companies

So I asked a friend who works for Big Pharma how to best do that.  His 
"Need to get to PhRMA and the PACs each  of the big guys have.  Writing to
the CEO and Chmn of the board is a good  and productive  thing."

So, there are your marching orders.  Anyone who can track down 
names/fax/snail mail/e-mail for those people, let the rest of us know so we're  not all
re-inventing the wheel.  We got 2000 people to send e-mail for the  Act Now
issue; surely we can get 2000 for this, too.

Mention 17M potential customers, and I'm sure Big Pharma WILL sit up and 
take notice!

Free at last, free at last, Thank God Almighty, we're Free at Last!

In response to the JAMA article posted the other day, one of our Facebook readers noted: "Once the light shines where there was no light before, it ends up taking over... an unfailing principle."
The light is beginning to shine in those dark places. 
Rome wasn't built in a day and the notion of CFS will not morph into HGRAD overnight, either, but we've reached the cusp of "and then you win".
It takes, on average, 17 years for information to go from research labs to common practice, which is much shorter than the length of time it's taken us to get to this point.  Yes, 17 years seems like a long time, and it is, but we're also past the halfway point in our quest for full recognition, which started 26 years ago.
I'm not denying that the next 17 years will result in even more of our old-timers (maybe even me) dying off, either from old age (in 17 years, I'll be pushing 70, and many of our leading activists will be hitting 80) or from the progressive effects of the disease.  There are some of us who will lose our personal battle before the war is won.  But nonetheless, we're now on the downhill portion of the battle, so kick back and enjoy the ride.
Some people have asked me how I've avoided getting depressed, as so many patients do.  I was diagnosed by an Ivy League-trained virologist, who assured me that he personally was working on it.  Knowing a genius like him was researching, I had no doubt that the answer would be found.  Despite CDC's foot-dragging, I knew there were other, patient-funded researchers working on it.
Just when I was starting to give up hope, Dr. Judy appeared on the scene, and that scenario fit the Hollywood script we'd all imagined it: dedicated parents will give everything to cure their daughter, *female* doctor who doesn't suffer the misogynistic delusion that all women want to be housewives, and, a triple threat, "trained as a cell biologist, molecular biologist and virologist" with experience in "immune response to retroviruses". 
It was just a matter of all the pieces falling into place, the Whittemores meeting Dr. Judy, who just happened to be tending bar while looking for another science job, and therefore, in the right place at the right time, available to head up the Institute the Whittemores were starting.  And Dr. Judy just happening to have the right background to find what needed finding.  And Dr. Judy just happening to have the right temperament to withstand the slings and arrows that the male medical establishment will fling at anyone (especially a woman) who dares to challenge status quo.  They were able to break Elaine DeFreitas and ruin her career, but Dr. Judy seems able to power through – which may be a generational thing: Elaine's generation was raised to defer to men and needed their consciousness raised, while Judy's generation takes equality for granted and thinks nothing of getting in the face of men.  More importantly, the bulk of Judy's funding comes from the Whittemores and other patients; losing government grant money isn't going to kill her career.
We're getting there.  One step at a time.  The chinks in the psychologizers' arguments are starting to be noticed outside the CFS community.
To quote some of the most inspirational language I know, in a similar situation:
"I have been to the mountaintop.  And I've looked over. And I've seen the Promised Land. I may not get there with you. But I want you to know tonight, that we, as a people, will get to the promised land!"

Fly Away to XAND-Ado, or Where is Elaine DeFreitas? - Peggy Munson

Dr. David Bell predicts "I think treatments will be available from every family physician in America who accepts Medicare.  The question is whether this occurs next year or twenty years from now." 

I would argue that the best determinant of whether treatments are available in one year or twenty has a lot to do with whether we remain soft-spoken or ACT-UP, whether we deny history or make sure it never gets repeated, and whether we stop feeding the hands that bite us.   

Judy Mikovitz, who spearheaded the XMRV research at the Whittemore-Peterson Institute, said ME/CFS patients are too debilitated to even easily infect other people.  Addressing why XMRV hasn't spread like AIDS, Mikovitz said in Science News, "It's probably not spreading very fast, because people with chronic fatigue 'are too sick to do anything.'"       
Too sick to spread our own epidemic!  It's almost t-shirt worthy.

So where is Elaine DeFreitas?

This question is important because, as activists, we have to understand what happened to DeFreitas to keep history from being repeated and studies from not being repeated.

A 1996 Newsweek review of Osler's Web reads almost like a prediction about DeFreitas' legacy: ". . .when the CDC publishes a paper saying it has been unable to replicate her findings, her support evaporates. By early 1995, the saga has cost [Dr. Paul] Cheney and [Dr. David] Bell their marriages, and a regretful de Freitas fears her career as a scientist is finished. The book closes with the image of an infectious disease spreading unchecked as an arrogant medical establishment looks the other way."

It is important to note that DeFreitas thought she found in ME/CFS was an unknown human retrovirus.  The only known human retroviruses at the time were HIV and HTLV-1/HTLV-2.

As Hilary Johnson reported in Osler's Web:
"DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."

The ME/CFS forums are buzzing with people who claim to have "insider information" that Judy Mikovitz thinks DeFreitas actually discovered XMRV in ME/CFS back in the early '90s.
DeFreitas said, "I could see myself twenty years from now, when I'm a high school biology teacher and someone calls and says, 'Hey they just found a retrovirus in CFS.'  And maybe that's how it will happen.  And I know how I'll feel -- I'll feel great."


Chronic Fatigue Syndrome in science and on the web: A study in contrasts




Hillary on UNUM


Testimony of Kenneth J. Friedman, Ph.D. Chronic Fatigue Syndrome Advisory Commit

Testimony of Kenneth J. Friedman, Ph.D.
Chronic Fatigue Syndrome Advisory Committee
October 14, 2010

My name is Kenneth J. Friedman.   I am the current Treasurer of the International Association for Chronic Fatigue Syndrome/ME and serve on the boards of the New Jersey Chronic Fatigue Syndrome Association, P.A.N.D.O.R.A, and the Vermont CFIDS Association.
Both I and the organizations for which I work are concerned by newspaper accounts of events surrounding the publications linking Chronic Fatigue Syndrome to XMRV and related viruses. 
Our first concern is generated by the New York Times interview of Dr. William Reeves subsequent to the initial publication of the joint findings of the Whittemore Peterson Institute, the Cleveland Clinic and the National Cancer Institute.1   It is not clear to us whether Dr. Reeves' expression of doubt regarding the validity of the published findings were his personal opinion or a representation of the sentiments of the agency for which he works.2   Our second concern is generated by the report in the Wall Street Journal3, that two research papers, one a study performed at the Centers for Disease Control which found no evidence of XMRV in the blood of CFS patients4, and a second study conducted by the Food and Drug Administration, the National Institutes of Health and Harvard Medical School which found evidence of murine leukemia virus in Chronic Fatigue Syndrome patients were both being withheld from publication by senior public health officials of the Department of Health and Human Services.
If these newspaper accounts are correct, we have the following concerns: 
1. While all federal employees have a right to express their personal opinions, they should refrain from doing so when they are being interviewed in their official capacities. 
2. Research programs run by the federal government are paid for by taxpayer dollars.  As such, it is the responsibility of those agencies to publish the results of such research programs promptly. 
3.  Results of research sponsored by the federal government should be published independently of the research findings of other institutions and agencies. 
4. Research studies and the publication of such studies, funded by taxpayer dollars, should not be delayed in publication in deference to divergent outcomes as alleged in the Wall Street Journal.3
Such behaviors are antithetical to the prescripts of science.  We have the expectation of prompt promulgation of peer reviewed research studies.  Censorship by the Department of Health and Human Services is inappropriate and not an option.
I respectfully request that this Committee fashion a recommendation to the U.S. Secretary of Health, affirming that from this day forward, the science conducted by any agency under her purview, and under the purview of her successors, will be conducted to the highest professional and ethical standards of science, and that the research results obtained in any one agency will be published independently of the results produced by any other agency.  The federal government, which invests heavily in the scientific enterprise, must manifest sufficient confidence in the scientific process to refrain from administrative interference. 
I respectfully remind this Committee that the federal government has previously strayed from its mission of dedicated research that benefits the Chronic Fatigue Syndrome Community6,7.  The lay press reports cited above suggest that the unfettered, apolitical, scientific, research investigation of Chronic Fatigue Syndrome has yet to be achieved. 
Senator Edward M. Kennedy stated in his tribute to his deceased brother, Robert F. Kennedy:   Few will have the greatness to bend history itself; but each of us can work to change a small portion of events, and in the total; of all those acts will be written the history of this generation.
Let each of us work to change a small portion of events so that our history will reflect altruism and integrity.
Thank-you for your attention.
1.  Lombardi, V.C., Ruscetti, F.W., Das Gupta, J., Pfost, M.A., Hagen, K.S., Peterson, D.L., Ruscetti, S.K., Bagni, R.K., Petrow-Sadowksi, C., Gold, B., Dean, M. Silverman, R.H. , Mikovitz, J.A. ( 2009) Science 326(5952):585-9.  Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. 
2.  Grady, Denise (October 12, 2009) The New York Times .  Is a Virus the Cause of Fatigue Syndrome?
3.  Marcus, A.D. (June 30, 2010) The Wall Street Journal.  Chronic-Fatigue Link to Virus Disputed.  One Research Group Finds Virus XMRV in the Blood of Syndrome Sufferers, One does not; Papers Held From Publication.
4.  Switzer, W.M., Jia, H, Hohn, O., Zheng, H., Tang, S., Shankar, A., Bannert, N, Simmons, G., Hendry, R.M., Falkenberg, V.R., Reeves, W.C., Heneine, W. (2010) Retrovirology  7:57.   Absence of evidence of xenotropic murine leukemia virus-related virus infection in persons with chronic fatigue syndrome and health controls in the United States.
5.  Lo, SC., Pripuzova, N., Li, B., Komaroff, A.L., Hung, G.C., Wang, R., Alter, H.J.  (August 23, 2010) Proceedings of the National Academy of Sciences 107(36):15874-9.  Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors.
6.  (October 9, 2010)
7.  Johnson, Hillary ( 2006 ) Osler's Web:  Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic., New York, New York

She has a point.....

I think it's time to start lobbying the only group which will directly 
benefit from our getting treatment - the drug companies;  perhaps the 
ME-CFS doctors, IACFS-ME, PANDORA, WPI will help us.

Jean Harrison
* * *
I know a few people who work for Big Pharma, so will ask them to pass the word to the right people in their organizations. 
Peruse your college alumni website for similar information, or just look up the name of the corporate presidents and write/fax/phone them.  There are 17 million people in the world who need a cure .... that's a big enough number to get their attention.

Thursday, October 21, 2010

Feds Say Mentally Ill Targeted in $200 Million Medicare Fraud

Who commits the Medicare fraud? Not the poor patients! Yet it's usually the patients who get the blame.
"Two Miami health care companies and four owners and senior managers were indicted today in a $200 million fraud scheme that targeted mentally ill patients, federal authorities said. ... Some of these patients were suffering from Alzheimer's and dementia, and were not aware of what was going on. ... Last week, authorities charged an Armenian-American group with operating fictional health care clinics as part of a $163 million scheme to defraud Medicare, Reuters reported."
Whenever there's fraud in any government agency that serves the poor/disabled, it's always the poor who catch the flak for defrauding the government.  Here again are two more examples of how the patients who *get* the blame, are not to blame -- most of them were too addled to have any idea what was going on, so could not be complicit in the crimes. 
Nonetheless, I can guarantee that this will be held up as evidence that patients scam the government, rather than the truth, that it's rich doctors and business owners who commit the fraud and the patients are generally completely unaware that their Medicare numbers are being used fraudulently.
Put the blame where it belongs.  "Blame The Patient" is NEVER appropriate!

My Life as I "StandUP2ME": #91~ "Time for Action" Campaign - Part 2

"Over a two-week period, ME/CFS patients, their families and friends sent more than 2,000 emails to NIH Director Collins and NIAID Director Fauci."
Patients are now asked to STOP the daily e-mails because....
Bob Miller cleared up what the Logic was behind the "ACT NOW ~ then we reACT Campaign".... and WHY they asked us to STOP all of the Daily emails to everyone and to ONLY send the 2 Thank YOU Emails to Collins and Mangan.

"What made the "Time for Action" campaign a Success was not one person or one patient, it was "All the Patients" seeing the bigger picture and Acting as One. Patients now see we have the attention of NIH Director Collins and that having Dr.Mangan as a Point-Man will move research and funding forward.

* * *


Wednesday, October 20, 2010

A Researcher’s Claim: 90% of Medical Research Is Wrong – TIME Health


Well, we know a lot of "CFS" research is wrong!  :)

Why the illness-affected marriages that last, do


Vulnerability, it turns out, is a word that comes up again and again in reports of successful long-term relationships. The arranged couples put it on their list of the top 10 reasons they still felt close to each other after a length of time that would find most Americans on their second or third marriage. Epstein believes letting someone see us with our guard down is one of the keys to falling—and staying—in love.

Vulnerability can mean a lot of things: From trying something novel, like riding roller coasters or scuba diving together, to engaging in something as tender as caring for a mate who's ill. Vulnerability is so bonding, it's also believed to be the root cause of Stockholm syndrome and the reason so many A-listers fall for their leading men and ladies on set: Getting into character in front of each other requires all the same (emotional) nakedness as Soulgazing.

Upcoming Webinars

October 20, 2010

2010 Webinar Series Update


Date: Thursday, October 21, 2010
Time: 12:00 PM - 1:30 PM EDT



Throw in endometriosis, Lyme disease, Sjogren's syndrome and vulvodynia, and you've got a veritable alphabet soup of conditions that often accompany  chronic fatigue syndrome (CFS).

(Those other initials? FM =  fibromyalgia. GWS = Gulf War syndrome.  IBS = irritable bowel syndrome. IC =  interstitial cystitis. MCS = multiple chemical sensitivity. TMJ =  temporomandibular joint and muscle disorders.)

Join internist Dr. Morris  Papernik of ProHealth Physicians Group and Hartford Hospital in Hartford, Conn.,  for a discussion of CFS's comorbid conditions, or those illnesses or disorders  that are present in addition to a primary disease or disorder. Unfortunately, people with CFS often suffer from more than CFS alone. Dr. Papernik will share information about the most common comorbid conditions found in CFS patients, together with tips for dealing with multiple disorders.

Dr. Papernik is  board certified in internal medicine. He works to educate health practitioners,  as well as the lay public, about chronic fatigue syndrome (CFS) and  fibromyalgia. He is a member of the faculty of the University of Connecticut Medical School. Dr. Papernik is a former appointee to the Chronic Fatigue Syndrome Advisory Committee of  the U.S. Department of Health and Human Services.


Our webinar series continues on Thurs., Nov. 11, join Dr. Lucinda Bateman, founder of The Fatigue Consultation Clinic in Salt Lake City to learn  some strategies to enhance communication with your medical team and avoid  leaving the doctor's office feeling frustrated and depressed. "DOC TALK: Communicating with your health care team about CFS." Register at

On Thurs., Nov. 18, join us  for "Minimizing Relapses: Pacing Yourself Through the Holidays." Dr. Bruce  Campbell, executive director and founder of the CFIDS & Fibromyalgia  Self-Help program, will give an overview of pacing, focusing on understanding limits and learning pacing strategies. He will also describe practical ways to  use pacing to enjoy the holidays and other special events. And Dr. Dane B. Cook, assistant professor at the  University of Wisconsin-Madison School of Kinesiology, will discuss the research on acute exercise in CFS from an exercise physiology perspective and from a  patient perspective. Register at


Expanding Research:
Building On Your  Investment

Speakers: Suzanne Vernon, PhD, Kathy Light, PhD, Alan  Light, PhD, Gordon Broderick, PhD and Dikoma Shungu,  PhD

Recording of presentation:

Slides  of presentation:

When the CFIDS Association of America launched the Campaign to Accelerate CFS Research (, a year-long, $1-million initiative to expand its  research program in 2008, proposals were judged for both scientific merit and  strategic merit. With three of the researchers funded by the Association,  Scientific Director Dr. Suzanne Vernon discussed how the Association's research  program has helped secure additional funding and accelerate uncovering promising  discoveries for the field. Learn more about how pilot funding helps researchers  secure larger grants, making the investment of dollars in it one of the most  important ones people with CFS and those who care about them can make.

Our Mission:
For CFS to be widely understood, diagnosable, curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.


"Desperate ME/CFS patients plead sotto voce for a triple cocktail of HIV medications and other antivirals like the desperate women of an earlier time who sought clean, illegal abortions from a sympathetic M.D. What person who learns that they're HIV positive is relieved?  But most patients who learn that they're XMRV positive are relieved, for it's validation that their illness is in their bodies and not their minds. That ME/CFS still is not acknowledged as a serious and sometimes fatal physical illness remains for many the worst aspect of having it."
"When the healthy reprove the sick that they're impatient and reckless and foolish and need to wait for treatment, I say isn't it funny how healthy naysayers get to enjoy their lives while admonishing the sick to be grateful that life is not any worse.  It is sickening.  It's also a way for the fit to distance themselves from those who are suffering."
"The gay reporters and activists in Outrage implemented a strategic shift in their way of thinking once gay men started dying from AIDS.  Instead of the hounds chasing the foxes, the foxes turned the tables and started hunting the hounds. This switcheroo has, finally, begun in the ME/CFS community"
* * *
This past week we have seen some subtle paradigm shifts.  Baby steps, but, nonetheless, steps in the right direction.
Kim from may say she empathizes, but she doesn't live with the disease herself.  She can afford to wait for clinical trials.  We can't.  By patients themselves taking control of the situation, with ActUp style protests, we're having an effect.  Meanwhile, leaving Kim to sound like the reasonable voice of conciliation.  There's actually room for both tactics.
As one of our male patients and I have discussed periodically, if he comes off the exam table swinging at the doctor, it's a good sign -- shows he's feisty enough to want to fight this disease.  If I did the same thing, it would result in one more phony psych diagnosis being placed in my file, "hates men".
Having this disease has taught me a great deal about patience, but enough is enough.  It's time to act, and it's time to act out.  After 25 years of patience in waiting for someone to find the cause, we have XMRV (or HMRV or HGRV or whatever they're calling it this week), and now that we have the proof that we're not just crazy, it's time to use that proof to beat the Powers That Be about the head and shoulders until they fast-track clinical trials and treatments.

Notes from NJ Mikovits lecture

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Special Edition

CFS Patient Advocate

Monday, October 18, 2010

NJCFS conference

Dr. Judy Mikovits.

The NJCFS association puts on an annual
conference day, often at the Sheraton in
Eatontown, N.J,. in mid to late October.

This organization is one of the best state
ME/CFS organizations and their conferences
are uniformly strong.

This year's NJCFS conference on October 17
was the best that the Patient Advocate has

It was also the most well attended as
people came from all over to hear Dr. Judy
Mikovits from the Whittemore Peterson
Institiute give a lecture on the most recent
research connecting XMRV (and its
variants) to ME/CFS.

They were not disappointed.

Dr. Mikovits gave a smashing one hour talk,
rattling along at a high rate of speed,
covering an astonishing amount of ground.

The Patient Advocate has followed Mikovits'
talk since 2007 and identified her very early
on as a very special researcher.

This talk was very hard-hitting, dense and
delivered very quickly. It far extends the
Patient Advocate's capacity to give this talk
the justice that it deserves.

Fortunately the talk was visually recorded
and will be available on DVD in six weeks.
Get ahold of it and watch it.

In the first part of the lecture Mikovits:

* drove quickly through the history of
various published papers that establish the
association of a family of gamma
retroviruses with ME/CFS.

* went over familiar ground with the
problems of the negative studies, and
stated her arguments against

* cited "greater sequence diversity than
originally observed", stating that "Variation
is our friend"

* twice cited Sandy Ruschetti's importance
in this research, including a key role in
isolating the virus,

* spoke of how hormones and inflammatory
cytokines turns on the viruses

* speculated about reservoirs, where the
virus hides, where it doesn't

* gave examples of teasing out XMRV with
different testing devices.

* stated that "sample processing is

* stated that the association of
XMRV-related viruses is stronger in ME/CFS
than in prostate cancer

* reiterated that the WPI is the only one
who has isolated virus from ME/CFS

* talked about subgroup P

* indicated that X -variant and P-variant
are two independent viruses

* found x and found p in individually cloned

* stated that XMRV and its variants is not
a mouse virus

* stated that this is not a recombination,
but a new human retrovirus

In the second Part of the lecture she
presented data on the XMRV work being
done in UK. Along the way she

* 50 UK samples went to two independent
labs, each tested multiple ways

* David Bell (recently retired) is working as
a clinical consultant, presumably with the

* ME/CFS is not a woman's disease

* Ruschetti cultured samples from Alter
cohort and found x-variant in all of them

* found complete concordance between
viral isolation and detection of antibody
reactivity in UK plasma

* Lo's primers picked out negatives as

* Conclusion: found evidence of HMRV in
>70% ME/CFS meeting CCC criteria

* 1st generation testing will get better.

Finally Dr. Judy talked of XMRV-related
virus in family and other illness

* presented Cheney's patient XMRV

* showed family trees with illness

* detection of XMRV in 16 of 17 families
with neuroimmune illness

* "Methods matter!"

* HMRV research is in it infancy as much
more research needs to be done.

This was an astonishing talk and its
implications are far reaching. This gal has
blown the lid off of ME/CFS research and it
is going to be interesting to see where
things go from here as the WPI continues
to dig deeper into research (with
unpublished papers) and at the same time
reach out to others in an attempt to build a
coalition to make inroads into this illness.

The Patient Advocate, along with many
others, sees the momentum coming out of
this research and the possibilities and it is
time to drop the detachment and give the
WPI and its affiliates any help that one
can, in any form.

This lecture, along with others the day
before, clearly point where things are going
with ME/CFS research and treatment.

There are other reports on the internet on
this conference. The Patient Advocate
would recommend reading them to get a
fuller picture.


XMRV Global Action

Dr Mikovits' lecture
at the NJCFSA

XMRV positive's notes

XMRV Global Action, 17 October

I'll preface this by saying that I had no
sleep and I may have gotten some of these
points wrong. I also forgot to get a
conference booklet with Judy's slides, so
I'm writing from memory. I didn't stay for
the Q&A, so this is just from her lecture.

     * Judy reiterated that there is NO
evidence of contamination and highlighted
that Bill Switzer's mtDNA test was used to
rule it out as an additional check besides
all the other verifications that were done
for the Science paper.

     * Evidence that HMRVs are associated
with CFS is MUCH stronger than the
association with prostate cancer because
they have isolated the virus - something
none of the prostate cancer studies have

     * One of the negative studies (Groom
et. al) used a method to detect monoclonal
antibodies to MLV Env proteins (gifted by
Chesebro/Evans). This test recognizes all
PMRVs except XMRV. Oops.

     * Frank Ruscetti and Rachel Bagni
isolated virus from the Lo/Alter patients (I
believe it was those that had a fresh blood
draw - the 8 of 9 that retested positive)
and what they found was XMRV. THIS IS

     * Over 70 species of mice were tested
by Coffin and none of them contained
XMRV. This is clearly a new human

     * Lo/Alter ran the WPI UK samples
through their probes and picked up a couple
more positives than the WPI found

     * The WPI family studies were
elaborated on. Judy showed family trees of
a few generations - some have CFS, some
Fibro, some lymphomas, ASD, one heart
attack (11 yr old boy), some are not
infected, some are infected but
asymptomatic. Overall, it demonstrated a
strong familial link.

     * They've found HMRVs in people as
young as one years old and as old as 88
years old.

     * Judy estimates prevalence at between
10-20 million Americans infected. I think
she said this was based on data from the
Blood Working Group.

     * Emphasis on the German study that
found XMRV via nasal swabs in
immunocompromised patients suggests
transmission through respiratory secretions
is highly likely. She also mentioned blood,
urine, and feces again as probable

Oh, I should mention that there were many
of our most beloved in attendance including
Hillary Johnson, Annette Whittemore, Marly
Silverman, Donnica Moore, and the Cairns
family (Peter shot another video of Judy
outside before the conference started)

I just remembered another point.

The latest negative autism study used
Cooperative Diagnostics 'drop o' blood on
paper' test. They've been trying to get that
thing published since last fall and only
after the WPI presented their autism
poster at the XMRV Workshop did they
finally published this 'crap' study. Her
words, not mine.


Tuesday, October 19, 2010

Is There a Cure for Autoimmune Disease?


Functional Medicine: Treating Causes, Not Symptoms

I just lectured at the Institute for Functional Medicine's basic training course for physicians. Even though the course is expensive--because unlike most other continuing medical education pharmaceutical companies do not support it--this conference was sold out. There were practitioners from 27 countries, and 24 faculty members from medical schools.

Functional medicine is a hidden movement sweeping across the globe, and it is based on a different method of diagnosing and treating disease--one that focuses on causes not symptoms, one that is based on an understanding of the dynamic way our genes interact with environment, one that goes beyond simply treating diseases based on their label. The training I lectured at teaches practitioner to understand the body as a system; to seek the causes of illness; to understand the body's basic functional systems, where they go awry, and how to restore balance; to understand the interconnections between symptoms and organs rather segregate diseases into specialties.

I simply asked the question WHY

* * *

And there's the problem -- most doctors DON'T ask "why" because it would require them to listen to the patient for more than 18 seconds.

The other side of the equation: PEOPLE

While doctors and government officials debate how HMRV science should proceed, they need to comprehend the other very human side of the equation, what we HMRV patients are going through.

Some of us may not be able to wait for the long-drawn-out scientific process to mature before we get treatment.

Those medical power brokers need to hear our voices. We need to demand being fast tracked into experimental treatment studies.

If we can accomplish that, by doing so we patients will be helping to move the science ahead.

My blog post, "Where The Dragon Lurks" can be found at:

Cover up- ME-CFS: New CDC CFS/ME Website & Dangerous Lies!

New and "improved" ... and worse than ever!

Monday, October 18, 2010

Medical Mistakes: Foul-Ups That Should Never Happen


"Never events" are mistakes the National Quality Forum says should never happen during a patient's hospital stay. The NQF calls these events "serious, largely preventable, and of concern to both the public and health-care providers."

* * *
Roughly 1 in 5 diagnoses is wrong.  Not because the doctor lacks the skill to figure out the right one but because he stopped listening after 18 seconds.  Patient says "Doctor, I'm so tired all the time", forget it, don't bother telling him about all your neuro-immune symptoms, you've already been diagnosed with depression and nothing you say from here on out will change his mind.
I walked in and handed him an expert diagnosis on a silver platter.  The virologist who diagnosed me called me a "textbook case".  That didn't matter; I was a bespectacled middle-aged divorcee, and therefore, no questions necessary, I was automatically depressed.  Had the doctor listened to me, instead of diagnosing by stereotype, years of misery could have been avoided.
Changing a correct diagnosis to an incorrect one should be a Never Event.  Nonetheless, it happens.  And then the patient is blamed for not improving when given the wrong drug for the wrong disease.
Don't let it happen to you.  Periodically, request to review your medical records.  HIPAA says you have the right to request a change of inaccurate information.  The problem is, the decision on whether to change it is up to the doctor/hospital, and they may not want to admit that they put inaccurate information in your file, so they may steadfastly insist that this is what you told them.
Therefore, protect yourself -- put your medical history in writing.  I keep a copy on my computer so all I have to do is type "Dear Dr. Smith" on top and print it out.  Voila, written proof that I communicated that my diagnosis is virologist-diagnosed CFS, not post-divorce depression, and that the CFS diagnosis was confirmed by a rheumatologist just a couple months before I saw the doctor who swears I don't actually have CFS.  Written proof that the doctor was advised (whether he read it is a different matter) that there are stairs between me and the sidewalk, meaning he should've taken that into consideration before insisting that I had to walk outdoors, not indoors, for exercise. 
You should've seen my doctors scramble to cover their butts when I pinned them down on false statements in the medical records that were contradicted by what I'd submitted to them in writing.  :)  They still were not inclined to change the records, but at least the lawyer reading my HIPAA submission saw the proof that the doctors at that institution repeatedly committed the criminal act of placing false and inaccurate information in medical records, and hopefully gave them a lecture on "go to jail, go directly to jail" if they do it again.

Medical Mistakes: More Common Than You Think

"around 98,000 people die in hospitals every year primarily of mistakes and many, many more suffer preventable harm," says Peter Pronovost, MD, professor in the departments of anesthesiology and critical care, surgery, and health policy and management at Johns Hopkins University School of Medicine in Baltimore. One study suggests that if you randomly pull 100 hospital charts, you'll find 40 errors."
* * *
My medical records from one respected institution, there's not a single page that doesn't have an error on it.  Things where the doctor wrote down what he wanted to hear, and not what I actually said.  The date I stopped working full-time is listed as the date that I was diagnosed, not the date 12 years later when I finally lost my job because I couldn't function for 8 hours.  A fictitious history of lifelong depression was created to cover up my statement that all my symptoms stemmed from a severe virus in 1987, so that he could falsely state that I'm "self-diagnosed" with CFS, as opposed to the truth, that I was diagnosed by a virologist in 1988.  Etc., etc.

Can you spell iatrogenic, boys and girls?

"Catastrophic surgical errors are "a lot more common than the public thinks," says Dr. Martin Makary, M.D., a professor of surgery and public health at Johns Hopkins University, in Baltimore.

"Each hospital, whether they publicly admit it or not, and whether or not it's discoverable in a lawsuit, has an episode of wrong-site or wrong-patient surgery either every year or once every few years," says Makary, who wrote an editorial accompanying the study."

* * *

80% of medical malpractice claims are PREVENTABLE error.  If doctors would listen to patients, pay attention, that number could be reduced.

Instead of "physician, heal thyself", they run around screaming about greedy patients.  Instead of taking responsibility for their errors, they blame the patient.

How many of us are permanently impaired due to iatrogenesis?  I was told I'd never return to work full-time because the amount of physical damage caused by doctors who refused to do the right tests or prescribe the right pills was too severe.  Had the doctor listened to me at the first appointment when I told him "this is what my former specialist recommended", I probably would've been back to work in a month or two.


Professional Patient Tip: Emergency Preparation – Remember the six M's

Whether you live in Hurricane Alley or in the Quake Zone, that emergency kit is important.  And especially if your health is variable and you can't guarantee that you will be able to stand in line at the store on the day an approaching storm makes it mandatory.

X Rx: More Lyme Disease

"I know these guys. I knew them when I was in practice and some of them were my doctors. I can list all the reasons why they are behaving like ostriches for as long as they can get away with, but the reality is, I don't understand. They aren't dumb, though you couldn't tell from their behavior. So I can only conclude that they are self-serving. Poor patients."

* * *
Typical male doctors.  Ego first, patient second.

Glatirimer Acetate Beats Interferon for MS Fatigue

Note: As the study authors note, the impact of immunomodulatory drugs
on fatigue has not been extensively tested and biomarkers for fatigue
reduction instead of self-report do not really exist - this particular
drug is thought to work both because of it's anti-inflammatory
components as well as neuroprotective components.

Glatiramer Acetate Beats Interferon for MS Fatigue

By Richard Robinson, Contributing Writer, MedPage Today
Published: October 17, 2010
Reviewed by Michael J. Olek, DO; Director, Newport Doctors Multiple
Sclerosis Clinic and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner 

Action Points

    * Note that this study was published as an abstract and presented
at a conference. These data and conclusions should be considered to be
preliminary until published in a peer-reviewed journal.

    * Note that patients receiving glatiramer acetate for one year had
more improvement in their fatigue symptoms than those receiving
interferon beta-1b or placebo.

GOTHENBURG, Sweden -- Glatiramer acetate (GA) reduces fatigue in
multiple sclerosis patients more than interferon beta-1b (IFN-1b)
after 1 year of treatment, according to a new study.

IFN-1b had no impact on two clinical measures of fatigue, while GA
(Copaxone) reduced the score on the Fatigue Severity Scale (FSS) by
20%, and the score on the Fatigue Descriptive Scale (FDS) by 34%,
according to a study presented here at the European Committee for
Treatment and Research in Multiple Sclerosis meeting.

Based on the results, the authors, Tatiana Shmidt and a colleague at
the Kozhevnikov Clinic for Neurological Diseases in Moscow, Russia,
concluded in their poster, "Copaxone is recommended as a first-line
imunomodulating drug for patients with severe fatigue." The authors
were unavailable for comment at press time.

While fatigue may be a significant symptom in multiple sclerosis (MS),
"the impact of immunomodulatory drugs on fatigue has not been
extensively investigated," they wrote. So the authors compared GA,
IFN-1b, and no treatment in patients with severe fatigue in a clinical
study, supplemented by a laboratory study to find biomarkers for
fatigue reduction.

They enrolled 63 patients with relapsing-remitting MS who had FSS
scores of at least 4. The FSS is a 9-item scale assessing the impact
of fatigue on daily living, with a minimum score of 1 and a maximum of
9. An FSS score greater than 4 indicates severe fatigue.

Patients received either GA (n=27), IFN-1b (n=19), or no
immunomodulatory treatment (n=17), and were followed for 1 year.

At the end of the year, FSS score in GA-treated patients had fallen
(improved) from 4.5 to 3.61 (P<0.01), while there was no significant
change in patients receiving IFN-1b. Scores in untreated patients rose
from 4.48 to 4.82 (P<0.05).

Scores on the FDS, an alternative measure of fatigue severity, fell
(improved) from 7.26 to 4.78 for GA-treated patients (P<0.01),
remained unchanged in IFN-1b-treated patients, and rose from 6.92 to 8
in untreated patients (P<0.05).

A similar pattern was seen for measures of cognitive fatigue and the
Fatigue Impact Scale.

Patients in the GA-treated group had a "trend to reduced IL-6 and to
increased vanillylmandelic acid and homovanillic acid," which, the
authors concluded, "may be suggested as presumable markers of fatigue
in relapsing-remitting MS." Data for these biochemical changes were
not presented in the poster session.

"The positive impact of this drug on fatigue in relapsing-remitting MS
is possibly associated with its double mechanism of action," they
said, involving both anti-inflammatory and neuroprotective components.

The authors reported no disclosures.

"Without a Mask" ,Eva Caballé's latest article on Stonebird

 "Without a Mask" ,Eva Caballé's latest article on Stonebird :
"an ill person cannot be like that. You have to be well-behaved, let
yourself be brain-washed
and follow the established road wearing a mask
without thinking. If you have Multiple Chemical Sensitivity, an illness that
is not recognized, you fight to survive. But don't make too much noise and
just follow others. Don't think, don't do. You are sick. Behave as such. You
have to be obedient
and ask for permission so that you will not be thrown
out of the herd, a herd for which others kill themselves to be a part."

* * *
And this is what doctors expect of us.  Just be quiet, let yourself be brainwashed, be obedient -- don't question the doctor, even if what he's advising is not what the experts recommend.
The problem is, if you just go along with what is wrong, you may wind up permanently debilitated.  There's a window in which proper treatment must be given, and you can't afford to miss it.  Several studies have shown that the treatment being studied is only effective in patients who've had CFS less than 5 years.  If you waste that 5 years listening to doctors who want you to try one anti-depressant after another, "prove to me that this doesn't work", you miss your best opportunity to regain your health.
Fortunately, I come out of the Women's Movement, where questioning authority is commonplace.  Male doctors don't like me, because I don't think that either men or doctors are superior to me.  I may go along for a short time, willing to prove that one or two varieties of anti-depressant don't help, trying to convince them that I'm not depressed, but eventually, I'll tell them in no uncertain terms that they suffer from Rectal-Cranial Inversion Syndrome, now you listen to me, buster! 
For many doctors, their ego is more important than the patient's health.  They'll ignore evidence that they're wrong.  Refuse to order certain blood tests.  If those blood tests are ordered by someone else, they'll make excuses, things like "lab error" or "that test is meaningless".
When you realize a doctor is stuck in that mindset, change doctors!  And try to see the next doctor before he sees your old medical records, so he doesn't mindlessly confirm the prior doctor's diagnosis.  Let him start the diagnostic process from scratch.

Gut inflammation in CFS

This is available for free at:

Gut inflammation in chronic fatigue syndrome

Author: Shaheen Lakhan and Annette Kirchgessner
Credits/Source: Nutrition &Metabolism 2010, 7:79