-- Maimonides (1137-1204)
Friday, October 22, 2010
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If I had my choice, I would have been well and back at work within a week or two after losing my job. But that didn't happen because I wasn't getting the right prescriptions, and that's something I have no control over. I don't have a prescription pad, all I can do is ask someone else to prescribe what I need and hope that he complies. Instead, I got months of "just try this one more anti-depressant and if it doesn't work, then I'll give you what you asked for", followed by accusations that I didn't want to get well when yet another anti-depressant served only to make me sicker, and just for that, another prescription to treat something I don't even have, because he didn't want to admit that his diagnosis was wrong and the one I'd handed him on a silver platter at the first appointment was right.
I think it's time to start lobbying the only group which will directly
benefit from our getting treatment - the drug companies
So I asked a friend who works for Big Pharma how to best do that. His
"Need to get to PhRMA and the PACs each of the big guys have. Writing to
the CEO and Chmn of the board is a good and productive thing."
So, there are your marching orders. Anyone who can track down
names/fax/snail mail/e-mail for those people, let the rest of us know so we're not all
re-inventing the wheel. We got 2000 people to send e-mail for the Act Now
issue; surely we can get 2000 for this, too.
Mention 17M potential customers, and I'm sure Big Pharma WILL sit up and
"I have been to the mountaintop. And I've looked over. And I've seen the Promised Land. I may not get there with you. But I want you to know tonight, that we, as a people, will get to the promised land!"
Dr. David Bell predicts "I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now."
I would argue that the best determinant of whether treatments are available in one year or twenty has a lot to do with whether we remain soft-spoken or ACT-UP, whether we deny history or make sure it never gets repeated, and whether we stop feeding the hands that bite us.
Judy Mikovitz, who spearheaded the XMRV research at the Whittemore-Peterson Institute, said ME/CFS patients are too debilitated to even easily infect other people. Addressing why XMRV hasn't spread like AIDS, Mikovitz said in Science News, "It's probably not spreading very fast, because people with chronic fatigue 'are too sick to do anything.'"
Too sick to spread our own epidemic! It's almost t-shirt worthy.
So where is Elaine DeFreitas?
This question is important because, as activists, we have to understand what happened to DeFreitas to keep history from being repeated and studies from not being repeated.
A 1996 Newsweek review of Osler's Web reads almost like a prediction about DeFreitas' legacy: ". . .when the CDC publishes a paper saying it has been unable to replicate her findings, her support evaporates. By early 1995, the saga has cost [Dr. Paul] Cheney and [Dr. David] Bell their marriages, and a regretful de Freitas fears her career as a scientist is finished. The book closes with the image of an infectious disease spreading unchecked as an arrogant medical establishment looks the other way."
It is important to note that DeFreitas thought she found in ME/CFS was an unknown human retrovirus. The only known human retroviruses at the time were HIV and HTLV-1/HTLV-2.
As Hilary Johnson reported in Osler's Web:
"DeFreitas spoke next. . . . 'Clearly this virus is not HTLV-two. We now have additional data that verifies that point.'. . .Then DeFreitas moved on to the most interesting aspect of her work: the virus's appearance. 'We've look at four of these five cell lines. We can see particles by electron microscope, but not extracellular virus,' she said. 'We are not looking for a C-type retrovirus.' The significance of DeFreitas's comment most likely was appreciated by most present: every known human retrovirus was a C-type."
The ME/CFS forums are buzzing with people who claim to have "insider information" that Judy Mikovitz thinks DeFreitas actually discovered XMRV in ME/CFS back in the early '90s.
Chronic Fatigue Syndrome Advisory Committee
October 14, 2010
My name is Kenneth J. Friedman. I am the current Treasurer of the International Association for Chronic Fatigue Syndrome/ME and serve on the boards of the New Jersey Chronic Fatigue Syndrome Association, P.A.N.D.O.R.A, and the Vermont CFIDS Association.
Thank-you for your attention.
2. Grady, Denise (October 12, 2009) The New York Times . Is a Virus the Cause of Fatigue Syndrome?
3. Marcus, A.D. (June 30, 2010) The Wall Street Journal. Chronic-Fatigue Link to Virus Disputed. One Research Group Finds Virus XMRV in the Blood of Syndrome Sufferers, One does not; Papers Held From Publication.
4. Switzer, W.M., Jia, H, Hohn, O., Zheng, H., Tang, S., Shankar, A., Bannert, N, Simmons, G., Hendry, R.M., Falkenberg, V.R., Reeves, W.C., Heneine, W. (2010) Retrovirology 7:57. Absence of evidence of xenotropic murine leukemia virus-related virus infection in persons with chronic fatigue syndrome and health controls in the United States.
5. Lo, SC., Pripuzova, N., Li, B., Komaroff, A.L., Hung, G.C., Wang, R., Alter, H.J. (August 23, 2010) Proceedings of the National Academy of Sciences 107(36):15874-9. Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors.
6. http://oslersweb.co/newsletter.htm (October 9, 2010)
7. Johnson, Hillary ( 2006 ) Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Backinprint.com, New York, New York
benefit from our getting treatment - the drug companies; perhaps the
ME-CFS doctors, IACFS-ME, PANDORA, WPI will help us.
Thursday, October 21, 2010
"What made the "Time for Action" campaign a Success was not one person or one patient, it was "All the Patients" seeing the bigger picture and Acting as One. Patients now see we have the attention of NIH Director Collins and that having Dr.Mangan as a Point-Man will move research and funding forward.
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Wednesday, October 20, 2010
Well, we know a lot of "CFS" research is wrong! :)
Vulnerability, it turns out, is a word that comes up again and again in reports of successful long-term relationships. The arranged couples put it on their list of the top 10 reasons they still felt close to each other after a length of time that would find most Americans on their second or third marriage. Epstein believes letting someone see us with our guard down is one of the keys to falling—and staying—in love.
Vulnerability can mean a lot of things: From trying something novel, like riding roller coasters or scuba diving together, to engaging in something as tender as caring for a mate who's ill. Vulnerability is so bonding, it's also believed to be the root cause of Stockholm syndrome and the reason so many A-listers fall for their leading men and ladies on set: Getting into character in front of each other requires all the same (emotional) nakedness as Soulgazing.
2010 Webinar Series Update
COMORBID CONDITIONS: THE ALPHABET SOUP OF CFS
Date: Thursday, October 21, 2010
Time: 12:00 PM - 1:30 PM EDT
CFS. FM. GWS. IBS. IC. MCS. TMJ.
Throw in endometriosis, Lyme disease, Sjogren's syndrome and vulvodynia, and you've got a veritable alphabet soup of conditions that often accompany chronic fatigue syndrome (CFS).
(Those other initials? FM = fibromyalgia. GWS = Gulf War syndrome. IBS = irritable bowel syndrome. IC = interstitial cystitis. MCS = multiple chemical sensitivity. TMJ = temporomandibular joint and muscle disorders.)
Join internist Dr. Morris Papernik of ProHealth Physicians Group and Hartford Hospital in Hartford, Conn., for a discussion of CFS's comorbid conditions, or those illnesses or disorders that are present in addition to a primary disease or disorder. Unfortunately, people with CFS often suffer from more than CFS alone. Dr. Papernik will share information about the most common comorbid conditions found in CFS patients, together with tips for dealing with multiple disorders.
Dr. Papernik is board certified in internal medicine. He works to educate health practitioners, as well as the lay public, about chronic fatigue syndrome (CFS) and fibromyalgia. He is a member of the faculty of the University of Connecticut Medical School. Dr. Papernik is a former appointee to the Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services.
Our webinar series continues on Thurs., Nov. 11, join Dr. Lucinda Bateman, founder of The Fatigue Consultation Clinic in Salt Lake City to learn some strategies to enhance communication with your medical team and avoid leaving the doctor's office feeling frustrated and depressed. "DOC TALK: Communicating with your health care team about CFS." Register at https://www1.gotomeeting.com/register/303014216
On Thurs., Nov. 18, join us for "Minimizing Relapses: Pacing Yourself Through the Holidays." Dr. Bruce Campbell, executive director and founder of the CFIDS & Fibromyalgia Self-Help program, will give an overview of pacing, focusing on understanding limits and learning pacing strategies. He will also describe practical ways to use pacing to enjoy the holidays and other special events. And Dr. Dane B. Cook, assistant professor at the University of Wisconsin-Madison School of Kinesiology, will discuss the research on acute exercise in CFS from an exercise physiology perspective and from a patient perspective. Register at https://www1.gotomeeting.com/register/226498113
Building On Your Investment
Speakers: Suzanne Vernon, PhD, Kathy Light, PhD, Alan Light, PhD, Gordon Broderick, PhD and Dikoma Shungu, PhD
Recording of presentation: http://www.youtube.com/watch?v=RMurW2LIwjs
Slides of presentation: http://www.cfids.org/webinar/slides-100510.pdf
When the CFIDS Association of America launched the Campaign to Accelerate CFS Research (http://www.cfids.org/about/acceleratecfsresearch.asp), a year-long, $1-million initiative to expand its research program in 2008, proposals were judged for both scientific merit and strategic merit. With three of the researchers funded by the Association, Scientific Director Dr. Suzanne Vernon discussed how the Association's research program has helped secure additional funding and accelerate uncovering promising discoveries for the field. Learn more about how pilot funding helps researchers secure larger grants, making the investment of dollars in it one of the most important ones people with CFS and those who care about them can make.
For CFS to be widely understood, diagnosable, curable and preventable.
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
Our Core Values:
To lead with integrity, innovation and purpose.
Send an Email for free membership
>>>>> Help ME Circle <<<<
>>>> 20 October 2010 <<<<
Editorship : email@example.com
CFS Patient Advocate
Monday, October 18, 2010
Dr. Judy Mikovits.
The NJCFS association puts on an annual
conference day, often at the Sheraton in
Eatontown, N.J,. in mid to late October.
This organization is one of the best state
ME/CFS organizations and their conferences
are uniformly strong.
This year's NJCFS conference on October 17
was the best that the Patient Advocate has
It was also the most well attended as
people came from all over to hear Dr. Judy
Mikovits from the Whittemore Peterson
Institiute give a lecture on the most recent
research connecting XMRV (and its
variants) to ME/CFS.
They were not disappointed.
Dr. Mikovits gave a smashing one hour talk,
rattling along at a high rate of speed,
covering an astonishing amount of ground.
The Patient Advocate has followed Mikovits'
talk since 2007 and identified her very early
on as a very special researcher.
This talk was very hard-hitting, dense and
delivered very quickly. It far extends the
Patient Advocate's capacity to give this talk
the justice that it deserves.
Fortunately the talk was visually recorded
and will be available on DVD in six weeks.
Get ahold of it and watch it.
In the first part of the lecture Mikovits:
* drove quickly through the history of
various published papers that establish the
association of a family of gamma
retroviruses with ME/CFS.
* went over familiar ground with the
problems of the negative studies, and
stated her arguments against
* cited "greater sequence diversity than
originally observed", stating that "Variation
is our friend"
* twice cited Sandy Ruschetti's importance
in this research, including a key role in
isolating the virus,
* spoke of how hormones and inflammatory
cytokines turns on the viruses
* speculated about reservoirs, where the
virus hides, where it doesn't
* gave examples of teasing out XMRV with
different testing devices.
* stated that "sample processing is
* stated that the association of
XMRV-related viruses is stronger in ME/CFS
than in prostate cancer
* reiterated that the WPI is the only one
who has isolated virus from ME/CFS
* talked about subgroup P
* indicated that X -variant and P-variant
are two independent viruses
* found x and found p in individually cloned
* stated that XMRV and its variants is not
a mouse virus
* stated that this is not a recombination,
but a new human retrovirus
In the second Part of the lecture she
presented data on the XMRV work being
done in UK. Along the way she
* 50 UK samples went to two independent
labs, each tested multiple ways
* David Bell (recently retired) is working as
a clinical consultant, presumably with the
* ME/CFS is not a woman's disease
* Ruschetti cultured samples from Alter
cohort and found x-variant in all of them
* found complete concordance between
viral isolation and detection of antibody
reactivity in UK plasma
* Lo's primers picked out negatives as
* Conclusion: found evidence of HMRV in
>70% ME/CFS meeting CCC criteria
* 1st generation testing will get better.
Finally Dr. Judy talked of XMRV-related
virus in family and other illness
* presented Cheney's patient XMRV
* showed family trees with illness
* detection of XMRV in 16 of 17 families
with neuroimmune illness
* "Methods matter!"
* HMRV research is in it infancy as much
more research needs to be done.
This was an astonishing talk and its
implications are far reaching. This gal has
blown the lid off of ME/CFS research and it
is going to be interesting to see where
things go from here as the WPI continues
to dig deeper into research (with
unpublished papers) and at the same time
reach out to others in an attempt to build a
coalition to make inroads into this illness.
The Patient Advocate, along with many
others, sees the momentum coming out of
this research and the possibilities and it is
time to drop the detachment and give the
WPI and its affiliates any help that one
can, in any form.
This lecture, along with others the day
before, clearly point where things are going
with ME/CFS research and treatment.
There are other reports on the internet on
this conference. The Patient Advocate
would recommend reading them to get a
XMRV Global Action
Dr Mikovits' lecture
at the NJCFSA
XMRV positive's notes
XMRV Global Action, 17 October
I'll preface this by saying that I had no
sleep and I may have gotten some of these
points wrong. I also forgot to get a
conference booklet with Judy's slides, so
I'm writing from memory. I didn't stay for
the Q&A, so this is just from her lecture.
* Judy reiterated that there is NO
evidence of contamination and highlighted
that Bill Switzer's mtDNA test was used to
rule it out as an additional check besides
all the other verifications that were done
for the Science paper.
* Evidence that HMRVs are associated
with CFS is MUCH stronger than the
association with prostate cancer because
they have isolated the virus - something
none of the prostate cancer studies have
* One of the negative studies (Groom
et. al) used a method to detect monoclonal
antibodies to MLV Env proteins (gifted by
Chesebro/Evans). This test recognizes all
PMRVs except XMRV. Oops.
* Frank Ruscetti and Rachel Bagni
isolated virus from the Lo/Alter patients (I
believe it was those that had a fresh blood
draw - the 8 of 9 that retested positive)
and what they found was XMRV. THIS IS
* Over 70 species of mice were tested
by Coffin and none of them contained
XMRV. This is clearly a new human
* Lo/Alter ran the WPI UK samples
through their probes and picked up a couple
more positives than the WPI found
* The WPI family studies were
elaborated on. Judy showed family trees of
a few generations - some have CFS, some
Fibro, some lymphomas, ASD, one heart
attack (11 yr old boy), some are not
infected, some are infected but
asymptomatic. Overall, it demonstrated a
strong familial link.
* They've found HMRVs in people as
young as one years old and as old as 88
* Judy estimates prevalence at between
10-20 million Americans infected. I think
she said this was based on data from the
Blood Working Group.
* Emphasis on the German study that
found XMRV via nasal swabs in
immunocompromised patients suggests
transmission through respiratory secretions
is highly likely. She also mentioned blood,
urine, and feces again as probable
Oh, I should mention that there were many
of our most beloved in attendance including
Hillary Johnson, Annette Whittemore, Marly
Silverman, Donnica Moore, and the Cairns
family (Peter shot another video of Judy
outside before the conference started)
I just remembered another point.
The latest negative autism study used
Cooperative Diagnostics 'drop o' blood on
paper' test. They've been trying to get that
thing published since last fall and only
after the WPI presented their autism
poster at the XMRV Workshop did they
finally published this 'crap' study. Her
words, not mine.
Tuesday, October 19, 2010
Functional Medicine: Treating Causes, Not Symptoms
I just lectured at the Institute for Functional Medicine's basic training course for physicians. Even though the course is expensive--because unlike most other continuing medical education pharmaceutical companies do not support it--this conference was sold out. There were practitioners from 27 countries, and 24 faculty members from medical schools.
Functional medicine is a hidden movement sweeping across the globe, and it is based on a different method of diagnosing and treating disease--one that focuses on causes not symptoms, one that is based on an understanding of the dynamic way our genes interact with environment, one that goes beyond simply treating diseases based on their label. The training I lectured at teaches practitioner to understand the body as a system; to seek the causes of illness; to understand the body's basic functional systems, where they go awry, and how to restore balance; to understand the interconnections between symptoms and organs rather segregate diseases into specialties.
I simply asked the question WHY
* * *
And there's the problem -- most doctors DON'T ask "why" because it would require them to listen to the patient for more than 18 seconds.
Some of us may not be able to wait for the long-drawn-out scientific process to mature before we get treatment.
Those medical power brokers need to hear our voices. We need to demand being fast tracked into experimental treatment studies.
If we can accomplish that, by doing so we patients will be helping to move the science ahead.
My blog post, "Where The Dragon Lurks" can be found at:
Monday, October 18, 2010
"Never events" are mistakes the National Quality Forum says should never happen during a patient's hospital stay. The NQF calls these events "serious, largely preventable, and of concern to both the public and health-care providers."
* * *
"Each hospital, whether they publicly admit it or not, and whether or not it's discoverable in a lawsuit, has an episode of wrong-site or wrong-patient surgery either every year or once every few years," says Makary, who wrote an editorial accompanying the study."
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80% of medical malpractice claims are PREVENTABLE error. If doctors would listen to patients, pay attention, that number could be reduced.
Instead of "physician, heal thyself", they run around screaming about greedy patients. Instead of taking responsibility for their errors, they blame the patient.
How many of us are permanently impaired due to iatrogenesis? I was told I'd never return to work full-time because the amount of physical damage caused by doctors who refused to do the right tests or prescribe the right pills was too severe. Had the doctor listened to me at the first appointment when I told him "this is what my former specialist recommended", I probably would've been back to work in a month or two.
* * *
on fatigue has not been extensively tested and biomarkers for fatigue
reduction instead of self-report do not really exist - this particular
drug is thought to work both because of it's anti-inflammatory
components as well as neuroprotective components.
Glatiramer Acetate Beats Interferon for MS Fatigue
By Richard Robinson, Contributing Writer, MedPage Today
Published: October 17, 2010
Reviewed by Michael J. Olek, DO; Director, Newport Doctors Multiple
Sclerosis Clinic and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
* Note that this study was published as an abstract and presented
at a conference. These data and conclusions should be considered to be
preliminary until published in a peer-reviewed journal.
* Note that patients receiving glatiramer acetate for one year had
more improvement in their fatigue symptoms than those receiving
interferon beta-1b or placebo.
GOTHENBURG, Sweden -- Glatiramer acetate (GA) reduces fatigue in
multiple sclerosis patients more than interferon beta-1b (IFN-1b)
after 1 year of treatment, according to a new study.
IFN-1b had no impact on two clinical measures of fatigue, while GA
(Copaxone) reduced the score on the Fatigue Severity Scale (FSS) by
20%, and the score on the Fatigue Descriptive Scale (FDS) by 34%,
according to a study presented here at the European Committee for
Treatment and Research in Multiple Sclerosis meeting.
Based on the results, the authors, Tatiana Shmidt and a colleague at
the Kozhevnikov Clinic for Neurological Diseases in Moscow, Russia,
concluded in their poster, "Copaxone is recommended as a first-line
imunomodulating drug for patients with severe fatigue." The authors
were unavailable for comment at press time.
While fatigue may be a significant symptom in multiple sclerosis (MS),
"the impact of immunomodulatory drugs on fatigue has not been
extensively investigated," they wrote. So the authors compared GA,
IFN-1b, and no treatment in patients with severe fatigue in a clinical
study, supplemented by a laboratory study to find biomarkers for
They enrolled 63 patients with relapsing-remitting MS who had FSS
scores of at least 4. The FSS is a 9-item scale assessing the impact
of fatigue on daily living, with a minimum score of 1 and a maximum of
9. An FSS score greater than 4 indicates severe fatigue.
Patients received either GA (n=27), IFN-1b (n=19), or no
immunomodulatory treatment (n=17), and were followed for 1 year.
At the end of the year, FSS score in GA-treated patients had fallen
(improved) from 4.5 to 3.61 (P<0.01), while there was no significant
change in patients receiving IFN-1b. Scores in untreated patients rose
from 4.48 to 4.82 (P<0.05).
Scores on the FDS, an alternative measure of fatigue severity, fell
(improved) from 7.26 to 4.78 for GA-treated patients (P<0.01),
remained unchanged in IFN-1b-treated patients, and rose from 6.92 to 8
in untreated patients (P<0.05).
A similar pattern was seen for measures of cognitive fatigue and the
Fatigue Impact Scale.
Patients in the GA-treated group had a "trend to reduced IL-6 and to
increased vanillylmandelic acid and homovanillic acid," which, the
authors concluded, "may be suggested as presumable markers of fatigue
in relapsing-remitting MS." Data for these biochemical changes were
not presented in the poster session.
"The positive impact of this drug on fatigue in relapsing-remitting MS
is possibly associated with its double mechanism of action," they
said, involving both anti-inflammatory and neuroprotective components.
The authors reported no disclosures.
yourself be brain-washed and follow the established road wearing a mask
without thinking. If you have Multiple Chemical Sensitivity, an illness that
is not recognized, you fight to survive. But don't make too much noise and
just follow others. Don't think, don't do. You are sick. Behave as such. You
have to be obedient and ask for permission so that you will not be thrown
out of the herd, a herd for which others kill themselves to be a part."
* * *
Gut inflammation in chronic fatigue syndrome
Author: Shaheen Lakhan and Annette Kirchgessner
Credits/Source: Nutrition &Metabolism 2010, 7:79