Saturday, April 24, 2010

Note from an MD/Patient

I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter
with ME/CFS/Lyme Disease. I was an emergency physician. After I got
sick, I recovered enough to have a private practice. I treated brain
injury with neurofeedback and HBOT. In that context, I treated  patients
with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in
complementary, alternative, integrative, functional medicines and
bioidentical hormone replacement.

When I read the paper in /Science/ about XMRV being highly associated
with CFS, it was apparent to me as a physician and a patient that this
was it. When I realized that the virus is sensitive in vitro to existing
safe HIV drugs, I thought and still think that it is a miracle. In fact,
I am stunned by the sudden overabundance of caution in the treating
physicians. It would seem that nobody wants to try it.
Despite being
given the key. Never mind that we are a patient population that has been
experimented on for decades.

Frankly, I didn't see what I had to lose. We are culture positive at VIP
Dx. We have tried everything to no avail. So with the assistance of a
wise, compassionate friend who is an ID doc, and a smart family
practitioner, I started AZT 300mg on March 4 and Isentress 400mg on
March 11, both twice a day
. It was my intention to wait for some sort of
confirmatory data before reporting anything publicly. But watching all
that isn't happening with respect to figuring out how to help the
patients, I don't think that anything should depend on how a few
patients do, especially a patient like me who may have been infected for
as many as 40 years. I don't think it is wise to wait while scientists
argue about the validity of lab tests. There are too many who need help
emergently.
HAART is a safe existing protocol for AIDS which includes
three drugs which inhibit XMRV in vitro. We even know that the three
possible combinations of those drugs are each synergistic in vitro. But,
the sickest will die while the scientists try to figure it out
, so it
seems to me that it is up to the doctors to treat with the information
available. As always.

I believe that there is a rationale for treating the sickest patients
now. Physicians are allowed to prescribe drugs off-label.
I think they
should be testing their patients, at VIP Dx, the only commercial lab
right now that seems to be able to find XMRV in peripheral blood, using
the methods validated in the /Science/ paper. *I would be happy to share
with any physician willing to consider treating.

*I certainly don't expect that it will be as easy as taking a few pills.
There is lots of downstream damage that will need to be treated.
But
treating all of the problems that have been identified over the years in
this patient population will likely be more effective for many more
patients than it has been in the past. We will finally be able to
identify the commonalities and differences in the various neuroimmune
cohorts. *Always treat the causative agent if you can.* Then modify the
host environment to the best of your ability so that whatever is left
functions at its highest possible level.

In my opinion, too many of our physicians have gotten caught up in their
own ideas and lost track of the goal, which is to get the patients well.
As a group, doctors and patients alike, we must support a willingness
for the truth to come out, whatever that is.
New discoveries have to be
incorporated into our thinking as they occur.

I thought that it would be OK to sit back and let the dust settle.
Whenever momentous discovery happens in medicine, there is a flurry of
resistance from those who have been made wrong. But this is uglier than
that. Now the WPI is in need of funding. Connect the dots. And the band
is playing on while we go down…

I am no activist. I am politically naive. But I know the power of the
internet. I know how marginalized we have been as patients. The people
at the WPI are our friends. They are fighting for us, when no one has.
As a community, we are often too sick to fight. So we have to let others
slay the dragons for us. We have to support them in any way we can.
Read: *SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD*. Please tell
everyone you know. Pull out all the stops.

Sincerely,
Jamie Deckoff-Jones MD
Santa Fe, NM

[Please disseminate.]

New CFSAC chair

According to the CFS Advisory Committee website (http://www.hhs.gov/advcomcfs/roster/index.html), Dr. Christopher Snell of University of Pacific will serve as the new chairman of the federal committee that meets next on May 10, 2010 in Washington, D.C. Dr. Snell has conducted several studies with funding from the CFIDS Association to investigate and document post-exertional relapse in CFS.
 
* * *
Note the new (more respectful) terminology of "post-exertional relapse" versus the older "post-exertional malaise".  Makes it sound more like a disease than laziness.

Friday, April 23, 2010

CFS - Life Sentence

http://cfsuntied.com/blog1/2010/04/23/the-devastation-of-a-disease-a-lifers-statement/

The Devastation Of A Disease – A Lifer's Statement
This was written and posted by Lisa Simpson, who gave generous permission for us to share it here. While government obfuscates and pontificators pontificate, this is what's happening to an entire population of dreadfully sick people.
 
Thanks all
khalyal@yahoo.com
khaly@cfsunited.com
 
 

Elton John's letter to Ryan White, 20 years after his death from AIDS

 

"Most important, Ryan, you inspired awareness, which helped lead to lifesaving treatments. In 1990, four months after you died, Congress passed the Ryan White Care Act, which now provides more than $2 billion each year for AIDS medicine and treatment for half a million Americans. Today, countless people with HIV live long, productive lives. ... It would sadden you that today, in certain parts of the United States, some poor people with AIDS are still placed on waiting lists to receive treatment. It would anger you that your government is still not doing enough to help vulnerable people with HIV and populations that are at high risk of contracting the virus"

* * *

We can hope that, in the future, there will also be government money to provide treatment to CFS/XMRV patients, instead of the haves being able to get it through their insurance or own funds, and the rest of us being left to wither unnoticed.

 

 

More proof it's not just attention-seeking

23 April 2010



http://www.bmj.com/cgi/content/extract/340/apr22_3/c1799

Published 23 April 2010, doi:10.1136/bmj.c1799
Cite this as: BMJ 2010;340:c1799

Editorials

Pragmatic rehabilitation for chronic fatigue syndrome
Has a short term benefit, but supportive listening does not

First 150 words (subscription required for full editorial)

--------------

http://www.bmj.com/cgi/content/abstract/340/apr22_3/c1777

Published 23 April 2010, doi:10.1136/bmj.c1777
Cite this as: BMJ 2010;340:c1777

Research
Nurse led, home based self help treatment for patients in primary care with
chronic fatigue syndrome: randomised controlled trial

Free [Abstract] [Full Text] [PDF]

Abstract:

Alison J Wearden, reader in psychology1, Christopher Dowrick, professor of
primary medical care2, Carolyn Chew-Graham, professor of primary care3,
Richard P Bentall, professor of clinical psychology4, Richard K Morriss,
professor of psychiatry and community mental health5, Sarah Peters, senior
lecturer in psychology1, Lisa Riste, FINE trial manager1, Gerry Richardson,
senior research fellow in health economics6,7, Karina Lovell, professor of
mental health8, Graham Dunn, professor of biomedical statistics3, on behalf
of the Fatigue Intervention by Nurses Evaluation (FINE) trial writing group
and the FINE trial group

1 School of Psychological Sciences, University of Manchester, Manchester, 2
School of Population, Community and Behavioural Sciences, University of
Liverpool, Liverpool, 3 School of Community Based Medicine, University of
Manchester, Manchester, 4 School of Psychology, University of Bangor,
Adeilad Brigantia, Bangor, Gwynedd, 5 School of Community Health Sciences,
Institute of Mental Health, University of Nottingham, Nottingham, 6 Centre
for Health Economics, University of York, York, 7 Hull York Medical School,
University of York, Heslington, York, 8 School of Nursing, Midwifery and
Social Work, University of Manchester, Manchester

Correspondence to: A J Wearden alison.wearden@manchester.ac.uk

Objective To evaluate the effectiveness of home delivered pragmatic
rehabilitation-a programme of gradually increasing activity designed
collaboratively by the patient and the therapist-and supportive
listening-an approach based on non-directive counselling-for patients in
primary care with chronic fatigue syndrome/myalgic encephalomyelitis or
encephalitis (CFS/ME).
Design Single blind, randomised, controlled trial.

Setting 186 general practices across the north west of England between
February 2005 and May 2007.

Participants 296 patients aged 18 or over with CFS/ME (median illness
duration seven years) diagnosed using the Oxford criteria.

Interventions Participants were randomly allocated to pragmatic
rehabilitation, supportive listening, or general practitioner treatment as
usual. Both therapies were delivered at home in 10 sessions over 18 weeks
by one of three adult specialty general nurses who had received four
months'
training, including supervised practice, in each of the interventions. GP
treatment as usual was unconstrained except that patients were not to be
referred for systematic psychological therapies during the treatment
period.

Main outcome measures The primary clinical outcomes were fatigue and
physical functioning at the end of treatment (20 weeks) and 70 weeks from
recruitment compared with GP treatment as usual. Lower fatigue scores and
higher physical functioning scores denote better outcomes.

Results A total of 257 (87%) of the 296 patients who entered the trial were
assessed at 70 weeks, the primary outcome point. Analysis was on an
intention to treat basis, with robust treatment effects estimated after
adjustment for missing data using probability weights. Immediately after
treatment (at 20 weeks), patients allocated to pragmatic rehabilitation
(n=95) had significantly improved fatigue (effect estimate -1.18, 95%
confidence interval -2.18 to -0.18; P=0.021) but not physical functioning
(-0.18, 95% CI -5.88 to +5.52; P=0.950) compared with patients allocated to
treatment as usual (n=100). At one year after finishing treatment (70
weeks), there were no statistically significant differences in fatigue or
physical functioning between patients allocated to pragmatic rehabilitation
and those on treatment as usual (-1.00, 95% CI -2.10 to +0.11; P=0.076 and
+2.57, 95% CI 3.90 to +9.03; P=0.435). At 20 weeks, patients allocated to
supportive listening (n=101) had poorer physical functioning than those
allocated to treatment as usual (-7.54, 95% CI -12.76 to -2.33; P=0.005)
and no difference in fatigue. At 70 weeks, patients allocated to supportive
listening did not differ significantly from those allocated to treatment as
usual on either primary outcome.

Conclusions For patients with CFS/ME in primary care, pragmatic
rehabilitation delivered by trained nurse therapists improves fatigue in
the short term compared with unconstrained GP treatment as usual, but the
effect is small and not statistically significant at one year follow-up.
Supportive listening delivered by trained nurse therapists is not an effective treatment for CFS/ME.

Trial registration International Standard Randomised Controlled Trial
Number IRCTN74156610.

© Wearden et al 2010
This is an open-access article distributed under the terms of the Creative
Commons Attribution Non-commercial License, which permits use,
distribution, and reproduction in any medium, provided the original work is
properly cited, the use is non commercial and is otherwise in compliance
with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and
http://creativecommons.org/licenses/by-nc/2.0/legalcode.

------------------

(FINE Trial Protocol, published 2006)

http://www.biomedcentral.com/1741-7015/4/9




Suzy Chapman
_____________________

me.agenda@virgin.net
http://dsm5watch.wordpress.com
http://meagenda.wordpress.com

For information on the proposed structure of ICD-11, the Content Model and
iCAT, see key documents on ICD-11 Revision site:
https://sites.google.com/site/icd11revision/
 
* * *
If I suggested counseling/talk therapy as the cure for cancer or AIDS, I'd be laughed off the planet.  Yet they're still trying to talk us out of having the CFS virus!
 
 
 

Monday, April 19, 2010

Virologists on XMRV

 
XMRV's Effects - He stated one team had followed primates over a year; they found that XMRV levels peaked at one week after infection, then declined to low levels for the rest of the year but that they found it in a lot of tissues. It's a real virus
 
* * *
Similarity to polio:
They were unable to find live poliovirus until a child was brought to the hospital very early in the disease process.  They found that the typical polio symptoms did not appear until after the production of antibodies started.
 
So, there's a brief period of severe infection and that's that, but the damage continues.
 
 

Taking Back the CFSAC

 
You can request to speak at the meeting or to post your written testimony to the CFSAC at this address - cfsac@hhs.gov - prior to 5pm, April 26th. If you do this your testimony will be placed in the public record and it will be counted.
 

Sunday, April 18, 2010

Hillary on Fauci

Given the interest in whether federal funding for XMRV research into
X-associated neuroimmune disease will be forthcoming, I'm re-posting
a blog from September 23, 2009 about Anthony Fauci, the director of
the National Institute of Allergy and Infectious Disease.  Fauci has
refrained from public comment for eight months on the discovery of
XMRV in "chronic fatigue syndrome," a discovery that suggests "cfs"
is an infectious disease.

http://www.oslersweb.com/blog.htm?post=693814

Best wishes,
Hillary Johnson
 

"the agency refused to fund nearly every grant proposal going forward, most notably, proposals from UCSF molecular biologist and HIV-discoverer Jay Levy; University of Pittsburgh Cancer Institute scientist Seymour Grufferman, a nationally recognized cancer epidemiologist who identified evidence for infectiousness among a simultaneous cluster outbreak of "cfs" and B cell lymphomas; and Elaine DeFreitas, a retrovirus investigator and rising star at the world-renowned Wistar Institute in Philadelphia who had identified evidence for retroviral infection in "cfs" in the late 1980s."
 

Journalist needed -- BREAKING NEWS

Readers: pass this along to anyone you know who works for a newspaper, magazine, TV or radio station.  Even if they're just the receptionist, they know who to give it to.

 
We need someone who can handle Breaking News on the medical front.  Here are the smoking guns; contact the Institute for more details.  We've got the facts, you've got the connections.
 
FYI, Canada has banned CFS patients from giving blood to avoid contamination of the blood supply, but the US has not.  How many Americans have (or will) become infected when they get a transfusion?  (This is something else the Institute is studying.  Like the "Congratulations, you *had* hemophilia, now you also have AIDS" phenomenon in the 1980s.)
 
Item #1
 
Item #1A
English Translation for Ortho web post by Toine de Graaf
Notes:

1. This is not approved by the author, but was translated by Monique Drost and edited by Heidi Bauer. All effort has been made to stay true to the intention of the author while making sentences grammatically correct in English.

2. Ms. Drost changed the name of the place Nijmegen into UMC St. Radboud (the hospital that facilitated this research), because she would have to use Dutch conjugations like Nijmeegs, Nijmeegse and Nijmegen, and she felt that would be a bit confusing for readers.

***********************************************************************************

Ortho
- Orthomolecular magazine


Ortho no. 2, sent today to subscribers, contains once again an article on the retrovirus XMRV and the relationship to ME/CFS. However, recent developments couldn't be included in the article, hence this web publication.
By Toine de Graaf

Latest news – 'UMC St. Radboud's' blood XMRV-positive after all

Gendringen, the Netherlands – April 16th, 2010. Researchers from the UMC St. Radboud announced in February that they didn't find the XMRV virus in the blood of Dutch Chronic Fatigue Syndrome (ME/CFS) patients. However, they left out that American researchers did find the XMRV virus in blood samples, taken from the same patients.

This is concluded from a letter that Annette Whittemore, director from the Whittemore-Peterson Institute (WPI) in Reno, sent on Monday, April 12, to Dr. Myra McClure (1). Dr. McClure is a professor in retrovirology at the Imperial College, London, and one of the authors of the first negative "replication study" for XMRV contamination with ME/CFS (2). In her letter, Whittemore invited McClure to co-operate with the WPI to research XMRV. She also reveals some information on the other two negative replication studies that have been produced so far, including the UMC St. Radboud study.

Email correspondence

The experimental virologist Dr. Frank van Kuppeveld from UMC St. Radboud and internist doctor Jos van der Meer didn't find a trace of XMRV in the frozen blood of 32 Dutch CFS patients, taken in 1991 and 1992. Also, in the blood of 43 healthy control subjects they didn't find the retrovirus. They published their findings online in the British Medical Journal (3), late January.

However, in her letter, Whittemore points out that the WPI, at the request of van Kuppeveld, has tested some blood samples from the Dutch research cohort before the study at UMC St. Radboud was completed. The WPI found traces of XMRV in those blood samples. Whittemore claims she possesses over email correspondence, which proves that van Kuppeveld was informed about these WPI research results before he published his negative study. However, in his scientific publication, no word is spoken about the co-operation with WPI (3). The redaction at Ortho has requested a copy of the email correspondence with UMC St. Radboud from Annette Whittemore, but this request has not (yet) been honoured.

Furthermore, Whittemore writes in her letter that van Kuppeveld has asked WPI for the reagents and a positive blood sample to determine if his test procedure was able to detect XMRV in positive blood. The WPI met that request. In her letter, Annette Whittemore questions why he didn't use these materials in his research.

Confirmation

Annette Whittemore's letter raises a lot of questions concerning the UMC St. Radboud XMRV study. The most pressing question is whether Van Kuppeveld can confirm WPI's findings. And if so, how many blood samples were sent from the Dutch research cohort to Reno, and how many positive samples did WPI find? And last, but not least, why did the UMC St. Radboud researchers keep silent about all of this in and around their research publication in the British Medical Journal?

Last Wednesday, the redaction of Ortho called virologist van Kuppeveld after emailing him Annette Whittemore's letter. During the call, he declared he had never seen that letter before. Van Kuppeveld also said he wasn't able to respond on such short notice. "I will first have to study the letter, and at least discuss this with my colleagues, who might be out of the country right now," he said.

However, after some urging, van Kuppeveld confirmed Whittemore's findings. He says that the case is slightly more complicated then the letter assumes. According to him, one or more of the 43 healthy control subjects from the UMC St. Radboud cohort has been positively tested on XMRV by the WPI. In conjunction with the findings of van Kuppeveld, this has raised some questions concerning the reliability of the WPI methods. Besides this, he has also stated that he had requested more samples from WPI, but has never received more than one XMRV positive sample.

Seven blood samples

Searching for answers, we contacted Dr. Judy Mikovits yesterday. She is the research director for WPI and leader of the XMRV research. She gave us several answers during a telephone interview. "Frank Van Kuppeveld has sent us seven samples", Mikovits said. "They were numbered 1 to 7. It was about cDNA, that he had made out of RNA".

WPI tested these seven samples with advanced PCR techniques in a closed system, so that contamination was impossible. Three samples appeared to be positive. After they reported the positive numbers to UMC St. Radboud, a message was returned, saying it concerned 2 patients and one control subject. For Mikovits, this result was expected. "We never were informed how many control persons there were on those seven samples, but two positives in seven is approximately what I expected. I didn't count on a 100% score, especially not with PCR.

That one control subject has been found positive by WPI was no surprise to Mikovits. "It totally depends on where you get the blood." At BMJ the UMC St. Radboud researchers have declared that the control samples were taken from people from the same environment as the patients. "The positive control subject is no surprise if it concerns family or a care taker. Control subjects that come with the patients to give blood we call contact-controls. Some of these people might be infected."

It is a fact that XMRV has been discovered with healthy persons. With WPI's own Science Research, in a group of 218 healthy control persons, showed that 8 people had a positive XMRV test (3.7%) (4).

No replication

Judy Mikovits and her colleagues are disappointed that the UMC St. Radboud research group has stated nothing about the co-operation with WPI in the BMJ publication. "During a month, we contacted each other at least every 3 or 4 days,' she said. "Material went back and forth, including co-operation agreements, signatures." She felt van Kuppeveld was keeping her on her toes. "He was very strenuous and kept asking whether I had received, tested or looked at stuff."

About a week before the BMJ published the UMC St. Radboud online, the communication fell silent. "That was after I had sent the positive results," said Mikovits. "I considered it to be good news. You've got something to work with. But Van Kuppeveld didn't consider it good news, because they didn't find anything. His message was, on your side, there must have been contamination. Even though I got his material, I was speechless. That was the end of our contact. A week later their publication followed."

Mikovits finds it unbelievable that the UMC St. Radboud researchers haven't used the material they got from WPI in any way. They did claim to have done a replication study. "We sent them antibodies, positive serum and positive DNA," said Mikovits. "Van Kuppeveld could have cultivated his samples, just like we did in our Science study. They could have tested their plasma for antibodies and they could have used our reagents to search for proteins and that kind of stuff. But they didn't, and have also mentioned nothing about the possibilities to do it. We would have wanted Van Kuppeveld to report all the data. If there is a difference in opinion or a misinterpretation, you can look at it together. They could have adjourned the samples, and worked together with us. But you can't just create the appearance to the outside world that nothing happened."

In retrospect, van Kuppeveld and his colleagues only were interested in the PCR technique, while Mikovits assumed that at the UMC St. Radboud the entire Science study would be replicated. "I had no idea he didn't want to do the rest of the research. That totally surprised me."

Silence

The WPI kept silent until the beginning of this week. Mikovits suspects that Annette Whittemore was triggered by the statements Dr. Myra McClure recently made on television, where the British retrovirologist disregarded the meaning of XMRV with ME/CFS. After this, Whittemore decided to enter the arena with this letter. "For a long time we thought the best way to deal with this was to continue with the research and forget about the lies. What else can you do? We got seven samples, we did our jobs and reported honestly what we found."

Mikovits confirmed that van Kuppeveld requested more samples. "I wanted to send him more, but what would he have done with it? Find out they were negative and say bad things about it? Mikovits is determined to walk the XMRV-route further, and she sounds more motivated than ever. "We've isolated a virus, and we displayed from a hundred people how their immune system is reacting. Did you know that there is no immune response to a contaminant? The patients obviously are infected with a virus."

Mikovits isn't the only one that takes XMRV seriously. Previously this month it was announced that in Canada people with ME/CFS aren't allowed to donate blood. Canada is the first country in the world that has taken this precaution.



1. Whittemore A, Dear Dr. McClure, April 12th 2010 (www.wpinstitute.org)
2. Erlwein ), Kaye S, [..], Cleare A. Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 2010; 1e8519
3. Van Kuppeveld FJ, de Jong AS, [..] van der Meer JWM. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. BMJ 2010 340:c1018
Lombardi VC, Ruscetti FW, [..]. Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with