Thursday, November 3, 2011

Petition Our Keepers: Be Heard From Your Home or Bed!

Do you have something to say to our keepers?  Those who have kept us in virtual chains, in our homes, in our beds?  Without knowledgable doctors and social support?

If the answer is "Yes, but...I don't know what to say, I can't think,  I can't write!" here's an easy solution.

Click to petition senior federal officials in charge of ME and CFS policy and add your name.  Some of them will be at the CFSAC meeting on November 8 and 9.   When you sign, an email will be sent to a half dozen people who have the power to change our lives, from Secretary Sebelius to NIAID Director Fauci.

Imagine being bugged daily with emails!  And all you have to do is sign.  Only your signature is shared with the recipients.  There's even an option to hide your signature and still be counted (but really, don't you want those emails sent with one click?)

The text of the emails is simple and to the point:


I just signed the following petition addressed to: Kathleen Sebelius.

Apologize for not responding appropriately to the ME/CFS epidemic.

Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health, recently made the following statement in response to a published study indicating the cancer drug Rituximab may be an effective treatment for ME/CFS:

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Follow the Norwegian Health Minister's example.

In addition, we ask that you:

1.  Double the current NIH funding for extramural research  annually until it achieves parity with funding for similarly debilitating chronic diseases like Multiple Sclerosis.  Priority should be given to research on biomarkers and potential pathogens as well as clinical trials.

2.  Take down information on the CDC's CFS website stating testing for pathogens and biomarkers is "experimental and theoretical" and that GET and CBT are appropriate treatments.


[Your Name]

Simple, right?

So come on and sign!  And don't forget to share the petition with others who are likely to sign.

Let your voice be heard!

Friday, June 10, 2011

The Final Betrayal

 (reposted with permission)

The Final Betrayal

by Danny Ze-dog on Friday, June 10, 2011 at 3:39pm
I'm too sick at the moment to start my own blog, and even if I had one I wouldn't be able to say what I'd really like to the way I'd like to.  But in light of months of following the scientific (and anti-scientific) developments in the XMRV story, and given that it is XMRV Blog Week, I feel the need to say something.  So here it is.

I don't know for certain whether XMRV and any related MRVs cause ME/CFS, or are co-causes or co-factors, but neither does any other scientist.  I don't know what role it plays in ME/CFS, but neither does any other scientist.

I know this: I will not spend the rest of my life sick or die young because some researchers and research journals made a political decision to "close the door" on the MRV-CFS association before it was appropriately investigated.  I want a true replication study NOW.

I want 'science' journals to stop publishing negative studies by authors who haven't used clinically validated assays to detect XMRV.  I want 'scientists' to stop claiming that non-replication studies ARE replication studies.  I want any researcher, journal editor, or 'science blogger'  who claims that true replication isn't necessary in science to be forced to seek alternative forms of employment.  I want an investigation by the Department of Health and Human Services into why the NIH's tiny CFS grant review panel has turned down a series of grant applications by the WPI.

I want at least one sliver of justice for millions of sick people who have had none.  If nothing else, we should have the benefit of supposedly dispassionate, objective science.  We were raised to believe that science is the backbone of modern civilization, and the last pure thing left in a world rife with politics.  If we cannot even get THAT without political interference, then even the highest court of appeal is corrupt.  

For well over two decades we have trusted that, at some point, the system that was ostensibly built for us will finally work in our favor.  At what point do we decide as a community that it clearly will not?  And at what point will we protest en masse that our rights as citizens and as human beings are being denied by medical, "healthcare", political, and scientific establishments?

The most blatant recent example, and the most immediately crucial issue, is the organized attempt to bury XMRV-CFS research.  With whatever energy we have, we need to fight to stop that from happening.  NOW.  We need to let those who would bury it, or let it be buried, know that we will not tolerate this.  We need to let 'advocacy' organizations know that they should either support us in this endeavor or stop posing as advocates and get the hell out of the way.  We need to strategize ways that we as patients and their carers can have a real impact on the scientific institutions and policy-makers that are normally walled off from us, and on the media that increasingly serves only as a mouthpiece for the 'official sources' with the best media connections.  If the high-profile discovery of a potentially pathogenic gammaretrovirus that may infect at least 4% of the population can be whitewashed from the memory of science and history, so can - and will - that of any other pathogen, be it HHV-6, Lyme, or anything else.  This isn't just an issue for people who support the XMRV hypothesis - it is an issue for everyone who wants good science to be done on this disease, now or ever.     

Monday, May 30, 2011

ME/CFS Demo in San Francisco a Success!

Here is Rivka's report on the recent San Francisco demonstration:

ME/CFS Demo in San Francisco, CA, USA
at the Dept of Health and Human Services
May 25, 2011

Contact: Rivka (at) ThatTakesOvaries (dot) org
Video of demo:

PRENOTE: A second small yet successful demonstration for the rights of people with ME/CFS was just held. A key goal of these mini-demos is to inspire more of the same; we hope you (those who are able) will hold a mini-demo, too. Only 1-5 people are needed to pull one off, get some press attention and make some waves. Make your own signs, or we can send you our pre-made 25-foot banner. All 3 goals of this Mini-Demo Strategy are found below.

WHO CAME:  On May 25, 2011, an ME/CFS public demonstration was held in front of the U.S. Department of Health and Human Services (HHS) Region 9 headquarters, in San Francisco, California. Despite the rain, eleven people came: two people with ME/CFS, Susan Kreutzer and Andy Au; three family members (mother, mother-in-law, spouse), including the protest co-organizer, Bobbi Ausubel; and six able-bodied friends. The multicultural group included people of Asian, Latino and Caucacasin decent, gay and straight, young adult and seniors. The people with ME/CFS came in spite of all the obstacles and barriers this illness throws in their way.

SETTING UP:  At 1:30 pm, the protesters positioned themselves on the busy, highly trafficked sidewalk in front of HHS Region 9, also known as the Federal Building. They unfurled a 25-foot banner that read: "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" (This banner was first used on May 10th at HHS national headquarters in Washington DC:

SECURITY:  Security came out immediately in the form of one person. He appeared to be the Head of Security of for the Federal Building/HHS. Bobbi told him what they were doing and how she had been told by the city police that they could be on the sidewalk without a permit, as long as they didn't have a loudspeaker. The security officer agreed, took some of the demonstrators' literature and went back inside. It was all very relaxed.

PRESS:  The protest co-organizers, Bobbi and Rivka, a mother/daughter team, had spent the days prior reaching out to the press. Success! The New York Times reporter who has covered ME/CFS in the past came "to say hi" (no article expected, but good to keep relations going) and a San Francisco Chronicle reporter and cameraperson came as well. The resulting article is found here: Though this article was disappointing in the usual ways, its publication was still good news, as the SF Chronicle is one of the largest papers in the region. Plus, the reporter said she hoped to do an additional story on kids with ME/CFS. And to our knowledge, this is the first time an ME/CFS protest has made news in the U.S.

ACTIONS:  Standing in front of HHS with the banner for 1 hour, the protesters videotaped prepared and spontaneous statements (see resulting video), handed out flyers to passers-by and in a surprise action sang the song, "Clinical trials now!" (Also seen in this 2010 video:

HHS MEETING:  Also surprising, after the demonstration, there was a group meeting for a half hour with Eric Alborg, Regional Outreach Specialist of HHS's Region 9. His boss, who was out of the country, is Herb Schultz, the Regional Director of Region 9. In the hierarchy, Alborg is positioned directly under Schutlz. (Alborg's job main is to implement the new health care program.) Alborg had thought he'd be meeting with just one person, Bobbi, and had not known about the demo in advance. But after checking with someone (we don't know who), he agreeded to meet with the whole group, that is, the two protesters who have ME/CFS and their three family members. Alborg was open to listening and wanted to know why the protesters were there. People talked about the concerns and needs of people with ME/CFS (funding and clinical trials!). The demonstrators put the struggle regarding ME/CFS in the context of HIV/AIDS, linking the possible retrovirus connection (XMRV). This discussion made sense since HIV is historically a key issue in San Francisco, due to a large and politically active gay community. The protesters emphasized to Alborg that HHS should have an understanding of the politics of all this, due to HIV/AIDS. They also told him that the information about this demo, and the meeting with him, would not be limited to the small group he was presently gathered with, but would be rapidly disseminated all around the globe via the internet, and that ME/CFS was an issue that was not going to go away.

Alborg's suggestion to the protesters: 1) Call/lobby local institutions and legislators; 2) build coalitions with groups with other disabilities and chronic illnesses -- groups that have already-established power and influence. (Though he did not say it, one protester went away thinking HIV/AIDS and Autism groups).

Bobbi gave Alborg copies of a letter she had written with her own personal statement on top, followed by a list of basic needs/demands from our ME/CFS community. Bobbi's letters were addressed to HHS Secretary Sebelius, NIH Director Collins, NIAID Director Fauci and Schultz (Head of HHS Region 9). Alborg promised to make sure the letters were given to each.

OUTCOME:  Protesters reported leaving the demonstration and HHS meeting feeling great; like they had done something important, both personally and politically.

* * *

Note from Bobbi, demonstration co-organizer

== Personal statement, given to HHS officials ==

I am the mother of a daughter with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, which has very severely limited my daughter's ability to lead a simple work and social life for over 20 harsh years. I have been her primary support. Much of the time she has been so sick she is often homebound or bedridden with disabling symptoms, not just "fatigue"!  Our family's life activities and resources are centered around the health needs of this daughter (and sister) we love. We expect more support from our government by way of research and clinical trials for this disabling disease that affects more than a million Americans. Most people with ME/CFS are too ill to be standing outside HHS today for a demonstration.  Those of us gathered here are speaking for all who are ill, and we demand to have more research and clinical trials now.

BAusubel (at) yahoo (dot) com

* * *

Note from Rivka, demonstration co-organizer

== The Goals of Our Mini-Demo Strategy ==

It is my hope that ME/CFS patients will rise up and hold a number of these small mini-demos around the country, at HHS and CDC regional offices, of which there are 20. Demonstrators can use our banner, which we'd ship to them, or they can make their own signs. The 3-part goal of this strategy is to:

1. Get on HHS's radar (get ME/CFS and XMRV patients on HHS's radar).
2. Get press attention (get the patients' perspective in the press).
3. Get the ME/CFS community used to images of people with ME/CFS demonstrating and protesting. Once they are accustomed to these images they won't be as timid or trepidations about going out and doing it themselves (the ones who are able, of course).

Rivka (at) ThatTakesOvaries (dot) org

Tuesday, May 17, 2011

San Francisco Demonstration Planned Week of May 23

I'm posting this at the request of Rivka.   Please, anyone in San Francisco who is able to join in, contact Bobbi (contact information at bottom of post).


... San Fran public demo for ME/CFS/XMRV, next week ....

ME/CFS/XMRV Patients, Families and Friends -- Invisible No More

Sick and tired of:
- your government ignoring you and this illness?
- being belittled by the media for a very real illness you have suffered with for years?
- being invisible?

Be Invisible No More! Join us in telling the government & media that we need more research money dedicated to understanding and treating ME/CFS and XMRV. Join us in a public demonstration to be held outside S.F.'s Health and Human Services building. We'll tell HHS Secretary Kathleen Sebelius to finally help the 1 million sick and disabled Americans with ME/CFS and XMRV.


  A demonstration holding a 25 foot banner in front of the San Francisco regional office of the U.S. Department of Health and Human Services. (HHS oversees NIH, CDC, FDA.) This demo will be similar to one held recently on Capitol Hill, Washington D.C., in front of HHS's national headquarters. See video here:
WHY: Our goal is to tell the HHS that we are expecting more for ME/CFS and XMRV: More respect, more attention, more research money, more clinical trials.

WHO:  People with ME/CFS and XMRV, their family and friends.

WHEN:  The week of May 23, any day we can find 5 people available. Preference for Wednesay, May 24, or Thurs, May 25, 1:30-2:30 pm. Tell us, when might you be available? Do you need help with transportation?

WHERE:  In front of the HHS building at 90 Seventh Street (Federal Building).

THE ACTION: The large banner reads, "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" Those who wish can say three sentences about your health, years sick, and your needs, and/or read a bit from a previously drafted statement. An edited video of the event will be made public (YouTube) and presented to HHS. Media will be invited. One of us will deliver a letter to HHS officials.  We will seek a permit from the S.F. Police before hand, if needed.

Daughter sick 21 years ME/CFS/XMRV
Bausubel (at) yahoo (dot) com
(I am the woman on the right of this video: )

Friday, May 13, 2011

Life with Severe M.E.

I was hoping to blog on May 12.  However, between my cognitive function crashing as well as blogger having technical difficulties, this was not to be.

But hey, it is May Awareness Month, right?  In that spirit, I am posting a very moving written submission to the CFSAC, submitted anonymously.  

I think this person's story must be heard, wide and far.  For this is what life with severe M.E. is like.  This is what is being ignored. It is ignored because we, with M.E., don't die within months the way people with AIDS did in the 1980s.  Instead, people like Anonymous #3 are hidden from sight.

They shall never be forgotten.


May 10, 2011
To the Members of the Chronic Fatigue Syndrome Advisory Committee:
In 1994, I was a healthy 20-year-old college student who led an active, happy life.  One afternoon in June, I was struck down by ME/CFS.  Over the years I got gradually worse until I became essentially bedbound in 1999 and again in 2005.  My plans for graduate school, a career, marriage, and children have been on hold for 17 years.
I think there is a common misconception, even among doctors and researchers well-versed in ME/CFS, that this illness is not especially disabling.  Even if they are unable to work, the thinking goes, most patients are able to take care of their basic needs and engage in activities of daily living.
That’s not the case for me and many people I know.  Due to my extreme post-exertional fatigue, muscle weakness, and orthostatic intolerance, I’m forced to spend 95% of my time lying on my back on this mattress in my small bedroom with one window.  I haven’t been able to take a shower since 2005—not even with the help of a shower chair.  I bathe and clean my teeth in my bed.  Once a month my elderly mother washes my hair for me in the bathtub.  
My parents bring all of my meals to my room on a tray.  If I want to go to another upstairs bedroom I have to be pushed in my wheelchair.  I haven’t been able to go downstairs or outside since November.  I’ve gone years at a time unable to leave my home, even to see a doctor.  I’ve had periods of being incapable of feeding myself.  I spend my worst days immobilized and unable to think, watching my bedroom get light, then dark, then light again.  Outside my window, the seasons change, over and over.
My incapacity is not unique.  One of my friends with ME/CFS hasn’t been able to leave her home in seven years and can’t walk; she uses an electric wheelchair to get to the bathroom.  Another needed a catheter in her bladder because she couldn’t get up at all.  Other friends are so weak that they can’t lift a cell phone or speak above a whisper.  I’m lucky that my parents are supportive; some of the worst off have no financial or physical help from their families.   This intersection of severity and poverty turns their lives into a hellish  struggle for food, shelter, and other basics of survival.
As severely ill as my friends and I are, many people are considerably worse off.  At least I can type a little bit, lying down, and talk on the phone a couple times per week.  But some patients have virtually no contact with other human beings or the outside world; their minds are too weak to hold a thought or to interact.  They spend their years in an abyss of isolation and suffering.
How many patients are like me or worse?  No one knows, because our government and advocacy groups have never studied us.  Most doctors don’t know we exist because we have extreme difficulty going to their offices.  We are excluded from virtually every research study, meeting and conversation about this disease.
Despite the realities imposed by severe ME/CFS, our government and even our largest advocacy group continue to portray this illness  as a relatively benign condition that might slow people down for a few years, but otherwise isn’t a big deal.  Average patients, according to them, should be able to undergo the CDC’s recommended treatments--exercise and psychotherapy—in addition to caring for themselves and maybe even working part-time.  
For me, exercise is changing my nightgown.  And the exertion of leaving my home for psychotherapy sessions—transported lying down—would set me back so far that I might not be able to lift a glass of water for a year.

Our government so devalues this illness  that it spends 100 times more per capita on MS research than it does on ME/CFS research.  As I struggle to brush my teeth and walk a few steps to the bathroom or bedside commode, I remember that our government considers my life only 1% as valuable as the life of someone with MS.  
The government claims that ME/CFS is a poorly-defined condition, but surely I have as many abnormal test results as an MS patient:  an abnormal SPECT scan; a LMW protein in RNase-L; undetectable IgA and low IgG3; POTS/NMH; and evidence for numerous infections (Lyme, Bartonella, Babesia, Erlichia,  Mycoplasma, C. pneumoniae, EBV, and HHV6-B).  I am also XMRV-positive.
On behalf of all the severely ill patients who can’t represent themselves at CFSAC or anywhere else, I ask you to pass vigorous resolutions on the following issues: 
1.  The International Classification of Diseases must accurately categorize CFS.   This is an extremely urgent matter because the draft proposal is due to become final within months.  The International Classification of Diseases 9 Clinical Modification  (ICD-9-CM), currently used in the United States, will become the ICD-10-CM in 2013 and remain our country’s medical bible for years or decades.  Unfortunately, the draft proposal for the new edition continues to place CFS in a wastebasket section of the ICD for “ill-defined conditions”.  Another problem is that CFS will be renamed to CFS NOS (Not Otherwise Specified) .  Excluding CFS from classification as a neurological disease under G 93.3, and renaming it CFS NOS, perpetuate the myth that CFS is a vague, poorly-defined non-disease.   These actions may cause us to be labeled as hypochondriacs or malingerers, may adversely affect our insurance and disability payments, and will undermine research efforts into biomedical causes of CFS.
You must strongly advise that the CDC reclassify CFS as a neurological disease under G 93.3, the code used for CFS by the rest of the world in their versions of the ICD.   Secretary Sebelius must be made aware that this is a serious issue with a looming deadline.  Furthermore, please discuss additional means of pressuring the CDC to recode CFS under G 93.3. 
2.  In the name of equal rights for equal disability , you must pass a resolution seeking  parity in funding for ME/CFS research.  ME/CFS should receive funds from Congress commensurate to the serious nature of the disease, and equivalent to what is received by similarly disabling illnesses, like MS.  Asking for $100 million in funds would be a step toward righting the current gross disparity in research dollars.        
3.  The NIH has rejected every grant proposal from the Whittemore Peterson Institute since the publication of its landmark paper in Science linking ME/CFS to the retrovirus XMRV.   Please pass a resolution stating that this is unacceptable, and investigate why this has occurred.  Is it because the Special Emphasis Panel responsible for reviewing ME/CFS grants is composed of so many dentists, psychiatrists and psychologists?   If so, the review process for ME/CFS grants needs to be changed, perhaps by moving ME/CFS research out of the ORWH to NIAID.
4.  Please resolve that the use of the Empirical Definition (Reeves Criteria) in research is absolutely unacceptable and should not be funded by the United States government.  The Empirical Definition does not correspond to any disease entity but to a hodgepodge of psychiatric conditions, simple tiredness and unwellness.  Research based on this definition,  which grossly inflates the number of Americans with CFS, is virtually meaningless.   Furthermore, please advise the CDC and NIH to adopt the Canadian Consensus Criteria, or the equivalent, as the official ME/CFS definition.
Thank you.  It will take me a week to recover from writing this letter, which was the only activity I could manage for several days. 

Wednesday, May 11, 2011


It can be done!

My friend and fellow advocate Rivka organized a kick-ass mini-demonstration in front of the US Department of Health & Human Services on May 10, while the CFSAC met inside.  Watch her newest video, read her account, and consider doing your own mini-demonstration, especially during May Awareness Month!    


ME/CFS Demo May 10, 2011 -- Dept of Health and Human Services, Washington DC
Contact: Rivka (at) ThatTakesOvaries (dot) org

On May 10, 2011, 6 individuals with ME/CFS, each sick and disabled from 9 to 21 years, demonstrated in front of the U.S. Department of Health and Human Services (HHS), 200 Independence Ave, S.W., Capitol Hill, Washington D.C. They carried with them just one sign, a 25 foot banner that read:

"Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!"

The representatives from the ME/CFS community were Kitty Lorenz, Karen Ravitz, Sharon Stapleton, Kat Stephens, a patient from New England, and the demo organizer, Rivka Solomon. They ranged from 21 to 70 years old and came from Connecticut, Massachusetts, North Carolina, Texas and Pennsylvania.

Around 2:15 pm, the demonstrators unfurled their banner in front of HHS's imposingly large building. They stood by the side of the street, thinking they were on what must constitute the public sidewalk, where, in most cases, people are allowed to partake in their civil rights to protest without arrest. However, it was hard to tell where the sidewalk was, given the design and layout of HHS's plaza. But it was a good guess, as the very traffic-y and thus noisy street, Independence Ave, was just a few steps behind the protesters. They choose not to position themselves across the street, on the opposite side of Independence Ave. By choosing to stay on the same side of the street as the HHS building itself, they knew they were taking more of a risk, since this would attract more police attention. The police that circulate around the vicinity of HHS include the Capitol Hill Police, the Washington DC Metropolitan Police, Homeland Security and of course the security for HHS itself. (Just before they started their protest, a cluster of 12+ cops were seen across the street. Later it was learned they were there for *another* nearby demonstration regarding abortion).

The ME/CFS demonstrators began filming themselves holding the banner and reading aloud a statement focusing on the plight of people living with ME/CFS. The statement included demands -- next steps they hoped the government would take. (Statement text found below.)

Within seconds, HHS Security came out of the building. At their peak, there were 7 members of HHS Security standing around watching the protest -- but they never approached the demonstrators. Instead they stood back about 50 feet, allowed the proceedings to continue until the protesters deemed their work done (i.e. the shooting of the video), a total of about 15 minutes. The resulting video can be seen here:

After the shooting, the demo organizer, Rivka, walked up to the first tier of HHS Security, the men who had been closest, to thank them for allowing the protest and videotaping to go on uninterrupted. The one plain clothed security official present in that tier (apparently plain clothed equals higher up in authority) grumbled something, and then he and all the other (uniformed) men pointed behind them to two women standing further away. Assuming they were the bosses, Rivka approached the two women and thanked them, too. One was a security officer in uniform, the other was plain clothed, and it was she who was head of security for HHS. The conversation went something like this:

Rivka: Thank you for letting us to protest here.

Head of HHS Security: (grumbling, shaking head, angry)

Rivka: It was legal, right? We were on the sidewalk.

Head of HHS Security: No. No --

Rivka: (interrupting) But I spent last week calling the Capitol Hill Police, Washington DC Metropolitan Police and Homeland Security, trying to find out who has jurisdiction over the sidewalk in front of HHS --

Head of HHS Security: (talking at the same time) No. No. No. We have jurisdiction.

Rivka: (interrupting) And I talked to Commander xxxx from Homeland Security  -- did he call you and tell you about us?

Head of HHS Security: No, he did not call.

Rivka: He said he wouldŠ? Or I thought he said he'd let everyone know. I mean, uuuh, are you head of HHS Security? He told me your name (drawing a blank) --

Head of HHS Security: Yes, I am xxxx xxxx.

Rivka: (nervous, but realizing that actions speak louder than words, and they *had* allowed the demo to take place) -- and Homeland Security Commander xxxx said the Washington DC Metropolitan Police had jurisdiction over the sidewalk, but that we'd --

Head of HHS Security: (angry, shaking head) No, if you had been on the other side of Independence Ave, that would have been legal.

Rivka: -- that we'd be fine protesting on the sidewalk as long as we did not do anything too outrageous.

Head of HHS Security: Not here. You need a permit here.

Rivka: Oh. Well, we really appreciate it. We came from very far away --

Head of HHS Security: (still shaking her head, but maybe, slightly, warming a bit?) I know.

Rivka: -- and we're very sick. Will pay a price for doing this demonstration. Could be bedridden a long time after thisŠ

Head of HHS Security: I know, we had to put out cots for those at the meeting. [She meant CFSAC, happening inside HHS that day.]

Rivka: Right. Exactly. Well, uh, thank you again, we appreciate it.

It was clear she had cut us some slack by allowing us to demonstrate uninterrupted and without a permit. Rivka walked back to the protesters packing up, then did an about-face and returned to hand the Head of HHS Security the protesters' informational one-pager (same as what was spoken into the video), asking her to give a copy to Sebelius, and adding, "Could you please tell Secretary Sebelius that this happened, that we were here today?"

"Oh, she'll be hearing all about this, all right."


Goal #1 Mission Accomplished: Put Sebelius on notice that she is being impatiently watched by patients and their families. After years of her ignoring the CFSAC recommendations, after her refusals to meet with representatives from the ME/CFS community, she will now most definitely hear (from the head of her own security team) that we exist, that we were on her home turf, unfurling a 25 foot banner, demanding attention, respect, action.

Goal #2 of this demo: Inspire ME/CFS patients to make their voices heard in mini protests everywhere; to not wait for that elusive big demo to be organized by someone else, but to instead (for those who are able) get out in public and just do their own mini-demos around the U.S. and globe. Goal #2 will be accomplished, hopefully, by folks viewing this video of the HHS May 10th demo:
A hearty "Thank you, you were amazing," to the HHS protesters. They were brave, ready for action, fun and quite photogenic individuals who signed on just days before, or the day of, the demo. At least 3 of the 5 are MCWPA volunteers.

A special thank you to Robert, a wonderful demo-collaborator who knows how to make a great banner (banner-making video: )

The biggest thank you, however, is reserved for those who will take the next step, those who will hold their own mini-demos. It does make a difference, and it will have an impact. In the U.S., there are plenty of places to demonstrate:

- 10 HHS regional offices ( in Boston, MA; New York; Philadelphia, PA; Atlanta, GA; Chicago, IL; Dallas, TX; Kansas City, KS; Denver, CO; San Francisco, CA; Seattle, WA.
- 10 CDC satellite offices in Anchorage, AK; Cincinnati, OH; Fort Collins, CO; Hyattsville, MD; Morgantown, WV; Pittsburgh, PA; Research Triangle Park, NC; Puerto Rico; Spokane, WA; Washington, DC

Each of these sites is calling for a small group of 1 to 5+ ME/CFS patients and their families to stand in front, on the sidewalk, demanding to be heard -- even for just 15 minutes. Each head of security of each site will be mandated to let their national headquarters know that there was a person there that day, holding a sign in front, protesting HHS/CDC's policies on ME/CFS. Eventually, with enough mini-protests, this will impact policy.

If not you, who? If not now, when?

If anyone wants to use our already made banner for their demo, we'll ship it to you.

==  Organizer's Costs Prepping for Demo (Money & Time) ==

1. Bolt of cloth (40 feet): $38.56
2. Red and black paint: $13.17
3. Paint brushes: $7.99
4. Popcorn for late night banner making: $3
5. Flight to Washington DC: $169.80
6. Taxi to Health and Human Services (HHS) demo: $31.10
7. Return trip Metro card: $3.40
8. Banner making: 2 wks.
9. Calls inquiring which police has jurisdiction over the sidewalk at HHS: 6 hrs.
10. Pitching to the media: 2 days. (Media that came: None).
11. Trying to get a 5 minute meeting with HHS's head of Public Affairs: 4 hours. (Minutes approved: None.)
12. Writing script/statement for the video; also served as the handout for the press (that did not come): Half a day.
13. Expected post-demo relapse (based on previous post-demo relapses): 6 wks in/near bed.
14. Influencing the U.S. government's ME/CFS policies and funding allocations: Priceless!

== Statement Read Aloud at Demo (and handed to HHS staff) ==

Why are we protesting at the Dept of Health and Human Services?
Advocating for people with ME/CFS -- Chronic Fatigue Syndrome
o  We are Americans who have spent much of the past 10-30 years bedridden and homebound with a severe disability that was given a belittling name by our government, Chronic Fatigue Syndrome (CFS).

o  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the full name of our illness.

o  It is an "invisible disability": We often look fine, but are severly disabled, many of us are unable to leave bed.
o  This belitting name, Chronic Fatigue Syndrome, sounds like we are "just tired" and thus it does not reflect the seriousness of our disease. But it certainly makes it easy for our government, medical community and media to dismiss and ignore those who suffer with it.
o  However, if you have ME/CFS it is not easy to ignore. It stops your life. We lose our ability to work, attend school or have a social life. Many of us are bedridden and using wheelchairs. Some of us have died early from leukemia, other cancers or health complications.

o  There are 1-4 million Americans with this illness --17 million people worldwide.

o  ME/CFS drains $18 billion to $23 billion annually from the US economy.

o  The US government, media and medical communities have delegitimized the illness and falsely psychologized patients.

o  This has resulted in very little federal money spent on research to discover the cause, treatments or cure of this illness.
o  Then, in 2009, there was a research breakthrough, and scientists found a retrovirus (called XMRV) linked to CFS. A retrovirus is a virus that never goes away (like HIV).

o  Still, the FDA has not banned people with ME/CFS from donating blood (the Red Cross has).
 Today, we are here protesting to demand that Obama and Sebelius (Dept of HHS):
- Protect the nation's blood supply: Ban peole with ME/CFS from donating blood.
- Fund research via Centers of Excellence just for this illness, including the Whittemore Peterson Institute (the lab that discovered XMRV's link to CFS).
- Fund fast-track clinical trials for treatments, medications.
- Act on the recommendations of CFSAC (the Chronic Fatigue Syndrome's Advisory Committee). They have ignored these recommendations for years, while patients and their families suffer with a devastating illness.

Tuesday, April 12, 2011

NIH SoK: The Good, the Bad, and the Ugly

In  the mid-1990s, I attended a conference organized by the International Association for Chronic Fatigue Syndrome (IACFS, now IACFS/ME).  It was my very first and I found myself excited and energized by the presentations and discussions.

Fast-forward to April 7 and 8, 2011, when the NIH held its most recent ME/CFS State of Knowledge Workshop.
With the passage of fifteen years, wouldn’t it be reasonable to expect an even more exciting event?  Yet I felt I was time traveling -- and in the wrong direction.  In 2011, two years after the discovery of XMRV and other HGRVs in a majority of  ME/CFS blood samples, most presentations covered pathophysiology and potential biomarkers.  There was more discussion of potential causation at the earlier conference than at this “State of the Science” workshop.  
Things got bad after that IACFS conference.  DeFreitas’s research was killed and no researcher dared to go near infectious agents.  Psychoneuroimmunology was in vogue and heavily applied to ME/CFS research.  Fauci, director of the large and powerful National Institute of Allergies and Infectious Diseases (NIAID) stated publicly that he didn’t understand why people with “CFS” couldn’t accept that they had a new psychological illness. Backward we slid. 
Our nemesis, Straus, left NIAID and with that there was no interest in CFS at all.   The Office of Research on Women’s Health offered us a supposedly temporary home which now has become permanent. The amount of research sponsored by NIH from the time CFS was moved to ORWH to date has been abysmal.  And what has been funded is often only tangentially related to CFS.
So what’s this NIH State of the Knowledge Workshop?
NIH is supposed to hold these type of workshops or conferences on a regular basis.  This is just the most recent.  One was held in 2000 and another in 2003.  The previous State of Science conferences were heavy on psychological factors.  There was much less mind-body talk at the April workshop, yet the idea that psychology plays a role in ME/CFS still came up.
Did this Workshop change anything?
Yes and no.   
The NIH Workshop was well-organized, packed with presentations, and attracted staffers from all over the U.S. Public Health Service. We now have people in influential positions who get that we are very sick.  They understand the devastation CFS has created. 

And yet, while we may have people at NIH and other parts of the U.S. Public Health Service who finally recognize that we have a “real” biomedical illness, I still feel we have progressed from the Dark Ages to the Middle Ages, with no one seeming to recognize we are in the Twenty-first century.
The only real progress I noted was the impact of new technology and measurement tools on what we patients already knew.  I’m not saying that’s not helpful; it is.  Objective and quantifiable means of presenting data on our symptoms is welcome.
But the elephant in the room remains.  And it is XMRV and other members of the HGRV family of retroviruses that could explain the symptoms studied by the presenters.
Mikovits was the sole proponent of HGRVs role in ME/CFS.  As usual, she did a terrific job explaining her research and attempting to educate her critics.  But why weren’t Ruscetti and Lo there?  And why was Alter put in the position of moderating?  Instead he only had a few minutes to explain his MLV study with Lo, which meticulously ruled out contamination.  Coffin’s statement that XMRV should be left behind said more about the politics than the science. 
I spoke with a number of people at the workshop. Several researchers expressed interest in studying XMRV/MLVs but felt strongly no such research will be funded by the NIH until the Ian Lipkin study is completed.  Lipkin’s study will take at least eighteen months to complete.
In the meantime?
We were told that the researchers at the table would be collaborating more, sharing their data, and standardizing their research.
Which brings us the patient cohort issue, something that still is not agreed on. Thankfully, NIH Director Collins mentioned the need for a new definition (albeit with subsets) and several presenters informed me that the Canadian Consensus Document is in the process of being updated. 
What’s next?
Funding, funding, funding is what everyone wants to know about.  The two NIH grant mechanisms for ME/CFS will run out in September.  While we were told that NIH was “looking to move on with other initiatives", it turns out that the funding opportunity announcements will simply be rewritten and renewed.  So much for any earth-shaking changes, such as a Manhattan Project for this disease as suggested by presenter Baraniuk, who is quite familiar with the ins and outs of NIH having worked there for years before moving on.
My prediction? 
The “new initiatives” will use the now more sophisticated research on what we knew years ago to educate the people in the various NIH Institutes and Centers and hopefully “stimulate more research”.  Perhaps researchers will share data and collaborate more; perhaps not.  Scientists are not known for sharing as they fear being scooped on a discovery.
Of concern to me was the cozy relationship between CFIDS Association (CAA) CEO McCleary and Mangan, Chairman of the Trans-NIH ME/CFS Working Group. McCleary was not on the planning committee for this conference, yet she hovered near Mangan toward the end, asking if there was anything else she could do.
How helpful is McCleary making herself?  The funding opportunity announcements are significant for researchers who are trying to move the science forward.   Will McCleary have a role in rewriting them?  If so, brace yourselves for more denials of any research applications proposing infectious etiology, especially retroviral. 
Where to from here?
The inter-disciplinary research NIH favors spreads scarce resources too thin.  Funding should go to the most promising areas.  Why make everyone sit on their hands while Lipkin finishes his study? Why not focus on the infectious characteristics seen in many ME/CFS patients and connect them to pathogens, such as retroviruses, that could explain most if not all symptoms?
Well-designed and funded clinical trials are needed now, not years from now.  Already practitioners are using combinations of immune modulators, antivirals,  antibiotics and antiretrovirals on their patients.  It is the only way to get to the bottom of the core question raised by the research -- are infectious agents causing this disease?
Baraniuk is correct.  We need to look outside the confines of the current system of funding ME/CFS research if we want cutting-edge research to move forward. Major restructuring is called for. NIH can move mountains if it wants to; it just takes guts.  

Sunday, February 27, 2011

Let Government Agencies Know the CAA Does Not Speak for You

Petition–CAA Does Not Speak For ME

Several independent advocates have collaborated to produce a petition requesting that government agencies recognize the CAA is not our voice.   The petition is on and I urge you to sign it by going here.

The text of the petition:
Targeting: National Institutes of Health, Centers for Disease Control and Prevention, and Chronic Fatigue Syndrome Advisory Committee
The CFIDS Association of America has proven itself to be an inadequate representative of our illness.  The following petition is designed to be presented to the NIH, CDC, and CFSAC.  Our goal is to present it at the May 2011 CFSAC meeting.
Recognize that the CFIDS Association of America is not our voice.
We the undersigned are patients who have been told by our doctors that we have “Chronic Fatigue Syndrome”, advocates for our loved ones who have been diagnosed with “CFS”, and individuals who have otherwise suffered under the constraints of the label “CFS”.
As such, we ask that you honor our voice. Collectively, the undersigned DO NOT RECOGNIZE the CFIDS Association of America as being our representative agency, nor as being capable of advocating properly for our illness.
Over the last few decades, we have implored the CFIDS Association of America to advocate for the illness that was given the “Chronic Fatigue Syndrome” label by the Holmes Committee … the outbreak of what was most likely Myalgic Encephalomyelitis in Incline Village, Nevada.
Instead, the CFIDS Association of America has maintained a steady inclination towards advocating for the CDC’s version of a mythical cohort of chronically fatigued people. The CFIDS Association of America has failed repeatedly to portray our illness as the devastating entity that it is, choosing instead the middle road and collaboration with the false science that has been built around the many fatiguing illnesses that have been lumped together under the CDC’s “CFS” umbrella.
For years, CFIDS Association of America was a CDC contractor, accepting millions in funding and in return collaborating with the CDC in the effort to brand CFS as a fatiguing illness.
Development of the SPARKS awareness campaign in conjunction with the CDC produced a campaign that included elements such as the traveling photo exhibit depicting people who looked tired. There were no pictures of what this illness actually does. Other elements included banner ads directing people to the CDC website for further information, a press conference in conjunction with the CDC and promoting the CDC as a reliable source of information on CFS, and a patient brochure that focused heavily on cognitive behavior therapy.
In the March 2010 newsletter, CAA included an article by Alex Howard entitled “The Art Of Pacing”, in which we were told that patients did not understand what may be required for “recovery”, and that not pacing properly will slow down or hinder our recoveries. The article has since been replaced due to patient outcry.
Recent commentary by the CFIDS Association of America in response to the PACE Trial indicate that the CAA still sees CFS through the eyes of the CDC’s chimera of emotionally induced illness.
In the process, our voices have been lost. It has not been until the advent of social media that the sickest of us have been able to advocate for ourselves. But social media has interconnected us, and allowed us to watch as the CFIDS Association of America consistently fails to represent our needs.
Interaction with the CFIDS Association of America on social media has given us the opportunity to question the Association repeatedly. Their response to us has not been satisfactory. Their response to changing science has not been satisfactory. Their response to our requests to address the upcoming issues has not been satisfactory. Their responses to issues as they unfold in major news outlets has not been satisfactory.
We ask that you no longer rely on the CFIDS Association of America as “our voice”. We have our own voice, and it is not that of the CFIDS Association of America. With today’s technology, the vast patient population can be interacted with directly. We ask that you do so.

Thursday, February 17, 2011

More on Steps Toward a Congressional Hearing

One of the best ways to build momentum for a Congressional hearing is to cultivate a relationship with your Representative and Senators, especially those on the committees listed in my earlier blog post.

Groups or individuals can do this by asking for a meeting at their Representative's or Senator's local in-state or district office. Try calling and asking for the staff person in charge of health for such a meeting.

Explain that you have a disease that was investigated by the CDC in the mid-1980s but that federal research into it has been derailed from the original cohort and subsequent pandemic.

Bring some information with you to the meeting that summarizes the situation but isn't overwhelming. Many members of Congress know little or nothing about our disease, or are misinformed. Start making them aware of the politics involved by handing out copies of something like Hillary Johnson's Op-Ed piece in the New York Times:

After the initial contact, it's very important to continue to call, email, and visit and provide more information.

The idea is to keep up a sustained campaign of engagement, even if it is simply a semi-monthly email to the health staffer.

For those who aren't able to get out, I'd suggest calling  and getting the name of Washington, DC legislative assistant in charge of health matters. Then keep in touch by email as outlined above.

Sunday, February 13, 2011

Steps Toward A Congressional Investigational Hearing

A number of advovates, including me, would like to see a Congressional Investigational Hearing (a type of "oversight" hearing) into the activites of federal agencies involved with ME/CFS.

This type of hearing acts much like a judicial hearing.   Information is gathered (by subpoena if necessary) and federal ageny officials must testify under oath.

In other words, it's  a great way of getting the accountability that has been lacking by some who have a great deal of power over our lives and health.   

Ideally, a professional lobbyist would do the legwork for this.   But sometimes all it takes to get the ball rolling is for one constituent to get the right member of Congress interested.

So, for anyone who wants to put their political power (yes, you do have power, you are a voting constituent!) to work, here are the Congressional Committees that are most likely to undertake such a hearing, with listings of members and their contact information.

Why not take a look and see if your Congressmember or Senator is on one of these lists?  If so, contact them and tell them what is (and is not) going on.

House Committee on Energy and Commerce
Subcommittee on Health

Senate Committee on Health, Education, Labor, and Pensions