Saturday, May 14, 2011
Friday, May 13, 2011
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: http://www.youtube.com/watch?v=_elj8mcd9Ak
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: http://www.youtube.com/watch?v=_elj8mcd9Ak
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:http://www.youtube.com/watch?v=dcxtgyVuXYI )
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 (http://www.hhs.gov/about/regionmap.html) 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).
o 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.
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>>>>> Help ME Circle <<<<
>>>> 13 May 2011 <<<<
Below you will find the abstract and the
*Xenotropic Murine Leukemia Virus-related
Virus-associated Chronic Fatigue Syndrome
Reveals a Distinct Inflammatory Signature*
By Lombardi et al.
For private members the full pdf file is attached.
List members can download the study from:
If you are not a member of Megaupload, you have
to wait for about a minute.
~jan van roijen
in vivo 25: 307-314 (2011)
Xenotropic Murine Leukemia
Chronic Fatigue Syndrome
Reveals a Distinct Inflammatory
VINCENT C. LOMBARDI1, KATHRYN S. HAGEN1,
KENNETH W. HUNTER4, JOHN W. DIAMOND2†,
JULIE SMITH-GAGEN3, WEI YANG3 and JUDY A.
1Whittemore Peterson Institute, University of
Nevada, Reno MS 0552, 1664 N. Virginia St., Reno,
NV 89557, U.S.A.;
2Triad Medical Center, 4600 Kietzke Lane M242,
Reno, NV 89502, U.S.A.;
3Nevada Center for Health Statistics and Informatics,
University of Nevada, 1664 N. Virginia St., Reno, NV
4University of Nevada Reno, Department of
Microbiology and Immunology Applied Research
Facility,1664 N. Virginia St., MS 199, Reno, NV 89557
The recent identification of xenotropic murine
leukemia virus-related virus (XMRV) in the blood of
patients with chronic fatigue syndrome (CFS)
establishes that a retrovirus may play a role in the
pathology in this disease.
Knowledge of the immune response might lead to a
better understanding of the role XMRV plays in this
Our objective was to investigate the cytokine and
chemokine response in XMRV-associated CFS.
Materials and Methods:
Using Luminex multi-analyte profiling technology, we
measured cytokine and chemokine values in the
plasma of XMRV-infected CFS patients and compared
these data to those of healthy controls.
Analysis was performed using the Gene Expression
Pattern Analysis Suite and the Random Forest tree
This study identifies a signature of 10 cytokines and
chemokines which correctly identifies XMRV/CFS
patients with 93% specificity and 96% sensitivity.
These data show, for the first time, an
immunological pattern associated with XMRV/CFS.
Chronic fatigue syndrome (CFS) is a poorly
understood disease of unknown etiology, which is
commonly characterized by innate immune defects,
chronic immune activation and dysregulation, often
leading to neurological maladies [reviewed in (1)].
It can also involve other biological systems such as
the musculoskeletal, gastrointestinal and
endocrinological systems (2-4).
Although several common symptoms are primarily
reported and predominate, they may differ among
individuals, are often intermittent and can persist for
years, frequently resulting in substantial disability
Some of the most commonly reported physical
symptoms include muscle weakness and pain, tender
or swollen lymph nodes and chronic flu-like
Memory and concentration impairment, blurred
vision, dizziness and sleep abnormalities represent
some of the cognitive symptoms typically observed
while immunological symptoms often manifest
themselves through viral reactivation, RNase L
dysregulation, decreased natural killer (NK) cell
function and susceptibility to opportunistic infections
NK cell dysregulation may be associated with viral
reactivation or viral persistence and may also lead to
malignancy (13, 14).
Indeed, clinical observations corroborate pathological
manifestations in CFS as viral reactivations,
particularly herpes virus such as cytomegalovirus
(CMV), Epstein-Barr virus (EBV) and human herpes
virus-6 (HHV-6), are common occurrences (15-17).
Moreover, epidemiological studies have reported
increased incidences of lymphoma associated with
CFS outbreaks (18).
These clinical observations suggest that a
compromised innate immune system may play a role
in CFS pathology.
The completion of the human genome project
enabled positional cloning studies to identify the
RNASEL gene as the hereditary prostate cancer
allele-1 (HPC1) (19).
This discovery prompted Robert Silverman and his
colleagues to search for a viral component to
hereditary prostate cancer.
Using a viral micro-array and tissue biopsies from
individuals with hereditary prostate cancer they
identified and sequenced the complete genome of a
novel human gammaretrovirus, very similar in
sequence to xenotropic murine leukemia virus and
therefore termed the new virus xenotropic murine
leukemia virus-related virus (XMRV) (20).
Subsequent studies performed in our laboratory
identified and isolated infectious XMRV in the blood
of 67% of CFS patients (21).
This work was performed using multiple techniques
including PCR, electron microscopy showing budding
viral particles, Western blot analysis of viral proteins
and serology confirming that infected patients
express antibodies to XMRV envelope proteins.
In addition, gene sequencing and phylogenetic
analysis confirmed these patients were indeed
infected with XMRV that was >99% identical to
previously published sequences but was obviously
distinct from the only existing XMRV molecular clone,
Taken together, this work clearly rules out any
possibility of gross contamination and additionally,
represents the first identification and isolation of
naturally occurring infectious XMRV.
The connection between CFS and XMRV was further
supported by the studies of Lo et al., who identified
murine leukemia virus (MLV)-related sequences in
the blood of 86% of CFS patients, further
establishing a retroviral association with CFS (22).
Presently, three families of retroviruses are known to
infect humans; the human immunodeficiency viruses
(HIV), the human T-cell leukemia viruses (HTLV) and
now the human murine leukemia-related viruses.
Both HIV and HTLV are known to dysregulate the
innate immune system and promote the production
of inflammatory cytokines and chemokines (23, 24).
In light of the association between XMRV and CFS, it
is not surprising that some of the most salient
observations in CFS are the differences in cytokines
and chemokines when compared to healthy controls
Previous reports, however, addressing the role of
these molecules in CFS have produced conflicting
Much of this emerges from such hindrances as small
sample size, a limited number of cytokines surveyed
at one time, insufficient patient population
stratification, and insufficient negative control
This has resulted in inconsistent reports in the
literature for a number of cytokines including
interleukins (IL) 6, 10 and 12.
In spite of these conflicting results, a number of
cytokines and chemokines have consistently been
show to be associated with different subgroups of
For instance, Natelson et al. showed elevated levels
of IL-8 and IL-10 in the cerebral spinal fluid of
patients with sudden, influenza-like onset CFS when
compared to healthy controls (25).
Additionally, Chao et al. have show neopterin and
IL-6 to be up-regulated in subsets of CFS patients,
indicative of a pro-inflammatory immune condition
However, these studies did not analyze the complex
relationships between multiple cytokines and clinical
By applying conventional statistical analysis and
'machine logic' algorithms to the multiplex data, it is
possible to identify cytokines and chemokines that
are differentially expressed between two groups.
To support this premise, we have used the xMap®
multi-analyte profiling technology that allows
simultaneous measurements of multiple biomarkers
in serum or plasma.
In this study, a panel of 26 cytokines, chemokines
and growth and angiogenic factors were analyzed in
blood plasma of CFS patients and healthy control
This study revealed a signature of 10 cytokines and
chemokines, which showed a specificity of 93% and
sensitivity of 96% in diagnosing XMRV-associated
CFS in this patient cohort.
MRI scans show CFS link to brain changes
By Gemma Collins on 13 May 2011
An MRI study has suggested that chronic fatigue syndrome may be linked
with a dysfunction in the midbrain, challenging claims that it is not
an organic illness.
Using MRI scanning, researchers at the Queen Elizabeth Hospital in
Adelaide say they found signs that white matter volume in the midbrain
decreased with increasing fatigue duration in patients with CFS.
This "midbrain dysfunction", they say, could explain many of the
symptoms of CFS which are normally consistent with autonomic nervous
system, immunological and cardiovascular dysfunction.
For the study (see link-
http://onlinelibrary.wiley.com/doi/10.1002/nbm.1692/abstract) in NMR
in Biomedicine (online May 11), around 25 patients with CFS and 25
normal controls underwent an MRI scan, and were also scored based on
the 10 most common CFS symptoms.
The MRI scans also revealed disrupted homeostasis in the brain,
suggesting impaired cerebrovascular autoregulation due to astrocyte
"CFS involves an insult to the midbrain, which suppresses levels of
motor and cognitive activity, and affects multiple regulatory feedback
loops to disrupt local CNS homeostasis in parts of the central
autonomic network and elsewhere," the authors conclude.
"The suppressed cerebral activity could contribute to the chronic
fatigue and impaired cognitive function that characterise the
The authors also conclude that further investigation is needed to
determine whether the midbrain volume reduction derives from a one off
brain injury at onset or reflects an ongoing disease.
The profoundly moving and important testimony of Anonymous #3 to the May 2011 cfsac meeting, speaking for the very sick.
[lp: In my opinion, this should be mandatory reading for every person in the field.]
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 postexertional 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 its 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.
* * *
Anonymous makes a good point, that doctors are unaware how sick patients can be because when you're that sick, you can't get out of the house to go to the doctor.
There are doctors out there who believe you can't have CFS unless you are so sick that your husband has to carry you into the doctor's office. What about those of us who don't have a husband? Does our single status make us immune to CFS?
I've been told "if you can get to my office, you can get to a job", oblivious to the fact that I was fired for reliably getting to a job that I couldn't do once I got there. It didn't register with him that I was trying to tell him that in the weeks that I had to get to a doctor appointment, that was ALL I did. It took a total of 7 days to rest up for and rest up from, so I wasn't able to go to the grocery or the pharmacy or do laundry that week; I made my own meals and fed the cats and that was it. Slept in my clothes the night before the appointment so that I'd have the extra energy necessary to get to the doctor's office. But all he could see was a woman who was capable of getting out of bed, getting out of the house, and getting to his office, therefore I couldn't be as sick as I was telling him because I wasn't 100% bedridden.
No, just 99.9%.
He would tell Anonymous, as he told me, that she's not disabled -- her ability to write a letter proves she could work if she wanted to. That it took days to write a one-page letter didn't faze him; the average employer wouldn't tolerate such a snail's pace, but it proved to him that I "could" do the work I claimed I was incapable of doing. He saw the world in black and white -- either you can type a letter or you can't -- with no concern for whether you can do it in an acceptable timeframe or whether you could sit at a desk or had typed lying down in bed. Then I hit him with the zinger, since the letter was typed, how did he know that I was the one who wrote/typed it? Had never crossed his mind that perhaps someone else composed the letter and I just scrawled a signature on the bottom.
But even that did not budge him off the notion that I was capable of working. Next time he needs surgery, I hope they call in a doctor who's as sick as I was at that time -- someone who's, by his assessment, "capable of working", and that that doctor slices into him, then needs to rest for six hours before the second step, and somewhere during the operation reaches that level of exhaustion that she throws up on the nearest surface, which just happens to be his formerly-sterile "surgical field". Tell him not to worry about the fact that a 15-minute operation took three days and the wound is now contaminated by her vomit -- she's perfectly capable of working, and no employer (or patient) minds that it takes too long and results in barfing on the work surface because she's by then too exhausted to stand up and run to the bathroom in time.
More doctors need to be made aware of just how bad it can be, so they stop accusing patients of exaggerating, cooing "oooh, it can't be that bad!" Cheney says the most frequent reason CFS patients are admitted to the hospital is Inability To Care For Self -- let's march the medical students into those hospital rooms and show them what a truly debilitated CFS patient looks like, the kind who can't get to the doctor's office under her own power. The kind they'll never again see because bedridden patients don't go to the doctor.
Thursday, May 12, 2011
– And The Band Played On
From the Trans-NIH ME/CFS Research Working Group website: http://orwh.od.nih.gov/CSF%202011/resources.htm
Resources For Research Investigators
Current Funding Opportunities Announcements
Investigators are strongly encouraged to go to the NIH Guide for Grants and Contracts (http://grants.nih.gov/grants/guide/index.html) for the most current opportunities. Below are some NIH announcements of potential interest for ME/CFS investigators.
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R01)
PA-08-246 Expires: 9/8/2011
Standard R01 receipt dates: (Next receipt date for new applications: 6/5/2011)
A call for R01 applications that propose innovative, interdisciplinary research to examine the etiology, diagnosis, pathophysiology, and treatment of ME/CFS in diverse groups and across the lifespan.
Web address: http://grants.nih.gov/grants/guide/pa-files/PA-08-246.html
Chronic Fatigue Syndrome: Pathophysiology and Treatment (R21)
PA-08-247 Expires: 9/8/2011
Standard R21 receipt dates: (Next receipt date for new applications: 6/16/2011)
A call for R21 applications (exploratory/developmental research) that propose innovative, interdisciplinary research to examine the etiology, diagnosis, pathophysiology, and treatment of ME/CFS in diverse groups and across the lifespan.
Web address: http://grants.nih.gov/grants/guide/pa-files/PA-08-247.html
Center for Inherited Disease Research (CIDR) High Throughput Genotyping and Sequencing Resource Access (X01)
PAR-11-210 Expires: July 2, 2014
Receipt Dates: Applications are accepted by continuous receipt
Awards for high-throughput genotyping, sequencing and supporting statistical genetics services.
Web address: http://grants.nih.gov/grants/guide/pa-files/PAR-11-210.html
Women's Health And Sex/Gender Differences Research
Funding opportunity announcements are posted regularly on the ORWH website. Some might be of interest to ME/CFS researchers.
Web address: http://orwh.od.nih.gov/research/pa-rfa.html
NIH Guide for Grants and Contracts
Many other funding opportunity announcements of possible relevance to ME/CFS research are listed in the NIH Guide. Enter the keyword search term or a co-morbid condition and then click the Search button.
Web address: http://grants1.nih.gov/grants/guide/index.html
Dennis F. Mangan, Ph.D.
Chair, Trans-NIH ME/CFS Research Working Group
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Wednesday, May 11, 2011
Historic Opportunity" To Help Millions Of Women Suffering From
Neglected Chronic Pain Disorders
Article Date: 11 May 2011 - 9:00 PDT
Today, leading women's health advocates called on the Institute of
Medicine (IOM), through the release of the first
Congressionally-mandated report on the state of our nation's effort to
eradicate chronic pain, to "seize this historic opportunity" to help
the millions of afflicted American women suffering from prevalent,
longtime neglected pain disorders.
In a letter sent today to Dr. Phillip Pizzo, Chair of the IOM
Committee on Advancing Pain Research, Care and Education,
organizational leaders of the Campaign to End Chronic Pain in Women
thanked the IOM for their important work and called on the special
Committee to be bold in its recommendations, which are expected by the
end of June. The letter notes that up to 50 million women in America
suffer from one or more of the following prevalent, neglected and
poorly understood chronic pain conditions that frequently co-occur and
disproportionately affect women: chronic fatigue syndrome,
endometriosis, fibromyalgia, interstitial cystitis, TMJ disorders
andvulvodynia, at an annual cost of up to $80 billion a year.
They called on the IOM to recommend a concerted and coordinated effort
to confront this costly problem: "The report should call on our
nation's leaders to enact a long overdue, concerted, coordinated, and
serious effort to tackle this costly problem through an expanded
collaborative research effort and improved clinical care. Doing so has
the potential to not only lead to an improved quality of life for
millions of Americans, but will start the process of reducing wasteful
and inefficient health care spending."
Last year Congress directed the IOM to develop recommendations on how
to significantly improve the state of our nation's pain research,
medical management and educational efforts. This report is expected to
be delivered to Congress by June 30, 2011. Since the IOM study began
in November 2010, the Campaign has, on every available opportunity,
submitted oral and written testimony; today's letter outlined
essential elements of the solution to this complex problem.
"Through the release of this report, the IOM has a historic
opportunity to redefine how our nation confronts our chronic pain
epidemic," said the Campaign leaders. "These recommendations hold the
promise of stimulating long-overdue improvements in the quality of
medical care provided to millions of chronic pain sufferers."
Campaign to End Chronic Pain in Women
Tuesday, May 10, 2011
Now, of course that was a silly story. But it is exactly how I was treated by the first specialist I saw for this disease. "Self-reported" is an insurance term that is used by British psychiatric "experts" on CFS; and there is a published paper out there about CFS and fibromyalgia that uses the correlation between these diseases and fear of pain to conclude that people who fear pain are "catastrophizers," and "catastrophizing" causes pain. There is a large body of psychiatric research on this disease that is just plain silly.
So don't be surprised if patients are a bit worried about what researchers say about them, or what the government does about them. If you had a badly broken leg and nobody in the medical profession would believe you, you'd be a little cranky too.
Monday, May 9, 2011
Sunday, May 8, 2011
Our Advocacy: Lasting Damage Done, Despite the Best of Intentions
By Craig Maupin at http://www.cfidsreport.com
In the cinematic realm, good intentions are always rewarded. Real life is less forgiving than cinema. In real life, a poor strategy may be well-intentioned, but poor strategy may still hurt vulnerable people --deeply and irrevocably.
Several actions by a small minority of the CFS community are hurting vulnerable people. Like most strategies, their actions may be well-intentioned. Through their efforts, this minority may feel an emotionally cathartic release and empowerment. Yet, the best of intentions won't keep counterproductive strategies from hurting families affected by CFS -- all of us.
I love this community. Like each of us, I have suffered and experienced great loss as a result of this biomedical illness. But poor strategies compound that loss. To stand by and say nothing is to idly watch damage being done.
What strategies am I speaking of?
1. Verbal abuse and anger-fueled interactions with the scientific community.
This illness will never be defeated until we forge positive relationships with the scientific community. Period. A solution will not come any other way.
For every bridge burned or researcher incited, lasting damage is being done to families and children suffering from this disease. I am deeply concerned that the roving bands of internet advocates extending, rather than alleviating, the suffering caused by this disease.
2. Unreasonable demands and heated interactions with journalists.
Solid journalists must tell more than one side of a story. Objectivity should be their job.
A few weeks ago, the professionalism of a journalist who has been fair in her coverage of this disease was harshly criticized. It didn't surprise me that her next article seemed to subtly portray those with this illness in a different, and harsher, light.
Like my aforementioned concerns about interactions with the scientific community, burning bridges to journalists will extend and entrench public attitudes behind the suffering of those with this disease.
3. Patients acting as 'laymen virologists', passionately engaging the scientific community.
I have felt this disease's full impact. As a result, I am absolutely, 100% confident this disease will have its day. I say that with no hesitation. A virus or immune defect is a reasonable explanation for the subgroups of CFS patients with a viral onset, high titers to various viruses, and abnormally expressed cytokines.
That said, those 'laymen virologists' who are passionately combative with the virology and scientific community online are creating poor perceptions of people with CFS and stifling curiosity about the illness. Sufferers of CFS desperately want hope. But a passionate desire for hope should not cause us to overlook the qualifications needed to engage complex virological topics, without losing our credibility. The scientific community undeniably knows the difference.
These heated engagements make it less likely that sympathetic researchers will establish cooperative relationships and successfully challenge attributions blocking progress. Published research by credible scientists is the best way to change perceptions about this disease. Laymen debating scientists -- on our behalf --will have the opposite effect.
4. Mass letter campaigns
Given some of what I am seeing written on behalf of those with CFS on message boards and blogs, I am very concerned that mass letter writing campaigns are a counterproductive strategy. I'll leave it at that.
Anger is often a byproduct of loss and suffering, and the CFS community has seen its share. But rather than let anger and passion guide our decisions, each advocate should consider the long-term effects of their efforts. If our efforts are not creating collaborations, do not build trust and confidence in our community, and fail to portray those with CFS in a positive light, families affected by CFS will harmed. The harm done may last decades.
Harmful and permanently damaging strategies may stem from very real problems. Unfortunately, much of the scientific community's history with this disease has been sloppy and disinterested. Science is often a human consensus, and we are naive to think that consensus is not influenced greatly by gender attitudes, cultural beliefs, professional environments, and language. But trust, relationships, and credibility must be built over time, if we are to change perceptions. Our history is no excuse to deepen our problems.
These four strategies (listed above) are not helping those with CFS. Rather, they are reinforcing and entrenching negative perceptions of CFS - -and hurting people in the process. In the last six months, what I have seen on blogs and forums -- often purported to be done our behalf -- is extremely disheartening and discouraging to me. Lasting damage is lasting damage, even if done with the best of intentions.
Articles on the CFS Report may be copied and posted to forums and other sites.
Craig Maupin may be reached at firstname.lastname@example.org
" it can be a sign of serious infection," says Lisa Shives, MD, medical director of Northshore Sleep Medicine in Evanston, Ill.
- Menopause, due to changing hormone levels
- A bacterial infection, often with an uncommon cause, such as brucellosis or tuberculosis; or a viral infection, such as HIV
- Hypoglycemia (low blood sugar), which is most likely to happen to patients with diabetes when their medication causes blood sugar to plummet during sleep
- Cancer, particularly prostate, thyroid, renal solid tumor cancers, or lymphomas — but other cancers may also cause sweats
- A disorder of the endocrine system, including hyperthyroidism (overactive thyroid)
- Side effects of medications, including antidepressants, chemotherapy drugs like tamoxifen (Tamoxen, Nolvadex), niacin, omeprazole (Losec, Prilosec), aspirin, or acetaminophen
- Neurological conditions, like a stroke or an injury to the spinal cord
- Chronic fatigue syndrome
- Hyperhidrosis, or chronic excessive sweating without a specific cause