Friday, November 12, 2010
Thursday, November 11, 2010
Why do I consider the presence of XMRV to be confirmed if there are conflicting studies?
- The testing and science used in the study was excellent. When looking for a needle in a haystack, you need the right tools or you won't find it. Not finding it doesn't mean it's not there.
- The researchers were unrelated to the WPI researchers and had no financial ties. I consider the WPI folks to be excellent and motivated by the right reasons, but independent verification and confirmation still adds a lot.
- That the healthy patients were mostly negative while CFS patients were largely positive confirms that the testing was not "too sensitive." A second form of confirmatory testing was also done to confirm positive results.
This positive study distinguished people with CFS from healthy controls, was well done, and was conducted independently of any financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing. Given this, other studies that found no XMRV in anyone suggests the researchers might need new eyeglasses.
* * *
As lawyers and debaters are fond of saying "absence of evidence is not evidence". When the quack concluded that "all tests were normal" and therefore there was nothing wrong with me, I pointed out that what he'd tested for merely proved I didn't have diabetes, anemia, or lupus. It did *not* prove that I didn't have something else he hadn't tested for. There were oodles of virii that wouldn't show up on the tests he did, and oodles more for which there wasn't a test yet.
Eventually, another doctor did a C-Reactive Protein test (which confirms infection or inflammation), which was "off the charts" -- 10x what it should be. We still didn't know *which* virus I had, but we did have evidence that there was something very wrong physically.
Wednesday, November 10, 2010
Translating Evidence into Practice
September 22-25, 2011
Crowne Plaza Hotel, Ottawa, Canada
IACFS/ME will begin accepting abstracts for (a) oral presentations
(b) poster sessions; and (c) workshop proposals on January 2,
2011. Further information will follow in December.
Fred Friedberg, PhD
clinical entities although they can be co-morbid and what works for
fibromyalgia alone may prove ineffective or possibly even harmful such
as in the case of exercise in patients with ME/CFS and fibromyalgia.
As the author notes, caution is warranted as 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.
ACR: Device Calms Fibromyalgia Symptoms
By John Gever, Senior Editor, MedPage Today
November 09, 2010
ATLANTA -- Electrodes placed on the scalp to deliver weak,
high-frequency currents significantly reduced symptoms of fibromyalgia
in a double-blind, sham-controlled trial, a researcher said here.
Mean decline from baseline in Fibromyalgia Impact Questionnaire (FIQ)
scores after 11 weeks of treatment was 15.5 points (95% CI 8.7 to
22.3) -- about a 25% drop -- compared with a 5.6-point decline (95% CI
0.1 to 11.2) in patients receiving sham treatment (P=0.03 between
groups), said Jeffrey Hargrove, PhD, of Kettering University in Flint,
"Compared to sham treatment, NICE [noninvasive cortical
electrostimulation] yielded clinically significant improvements in
pain, tenderness, and other typical features of fibromyalgia,"
Hargrove told attendees during an oral presentation at the American
College of Rheumatology's annual meeting here.
The technology is similar to, but distinct from, two other noninvasive
electromagnetic therapies that have been tested in fibromyalgia --
transcranial magnetic stimulation (TMS) and transcranial direct
current stimulation (TDCS).
TMS uses magnets placed on the scalp to induce currents within the
brain, wheres TDCS applies a high-density direct current across the
cranium with external electrodes. Both can be felt by the patient,
making it difficult to conduct a fully blinded trial.
With the weaker currents used in NICE, Hargrove explained, "patients
never feel the signal at all."
But the main idea in all three approaches is the same: to use
electrical currents to alter and normalize pain signaling pathways in
the brain. ...
Primary source: American College of Rheumatology
Hargrove J, et al "Non-invasive cortical electrostimulation in the
treatment of fibromyalgia" ACR 2010; Abstract 647.
Full story may be found at:
Crossing It Off My Bucket List
Reported by: Jennifer Johnson
Published: 11/08 12:55 pm
Updated: 11/08 3:28 pm
Have you had that amazing moment when you thought, "My whole life has
led up to this. This is why I'm here ".
I had it four years ago. It was November 8th, 2006.
The story begins long before that however. It's the story of who I
am. It's the story of why I became a journalist.
Growing up outside of Boston I was a jock. I loved sports, especially
soccer. I worked hard in school but when I thought of college I
thought of where I wanted to play, not what I wanted to study. That
changed a little in 10th grade when I took a journalism class and
liked it. That inspiration came at the perfect time - I just didn't
know it then.
10th grade started great. My varsity soccer team was going to the
playoffs. I already had a spot on the varsity basketball team and was
planning to return as pitcher for the varsity softball team. I
squeezed in a part time job as I studied for honors classes.
Then I got mononucleosis and was sick for about two months. No
biggie. I was good again by New Years. But a week later, on my 16th
birthday, I felt sick again. I would feel sick for the next 5 years.
Forget playing on the sports teams I mentioned. I could hardly shower
and get dressed. My mom would often cut up my food for me. I
couldn't go to school. Tutors came to my house.
I don't say this as woe-is-me. I say it so you'll know this illness
is no joke. That's important because people often laugh when I say
the name of the illness: Chronic Fatigue Syndrome (CFS or sometimes
called CFIDS which stands for Chronic Fatigue and Immune Dysfunction
They wonder if I sleep all the time. Answer: no (see www.cfids.org
for a list of symptoms). They say they're tired too and think they
must also have CFS. Answer: probably not and comparing your afternoon
yawn to an illness that robbed me of my life for five years is
insulting. But I can't blame people for being accidentally insulting.
Chronic Fatigue Syndrome was/is an illness with a public relations
That's why an article in the Boston Globe in 1994 meant so much.
I met the writer Jackie MacMullan when a friend put us in touch .
Jackie covered the Celtics for the Boston Globe. I wanted some career
advice because I really liked that 10th grade journalism class and
thought if I couldn't play sports anymore I could report on them. At
the end of my conversation with Jackie I mentioned I had Chronic
Fatigue Syndrome. She called me the next day and said she wanted to
write a story about CFS. A few weeks later my story was on the front
cover of the sports section of the Sunday Boston Globe.
It was one of the first mainstream articles about CFS. Up until then
patients were often dismissed as lazy or crazy because doctors had a
hard time figuring out why we felt so awful. So without the support
of the medical community and with a name that sounded benign, CFS
patients lacked support from the public.
Once the Boston Globe article came out I got letters from all over the
country from CFS patients who said none of their friends, family or
co-workers realized how serious their situations were until they read
it in black and white. I was impressed how knowledge led to
understanding and compassion. I was impressed how a journalist could
make such a positive impact. It's what I wanted to do with my life…
if I ever got better.
I met with my school tutors year round and graduated from high school
on time. I talked my way in Syracuse University's Newhouse School of
Public Communications by telling the story of my illness. I was still
sick through most of college but was improving and felt good enough
after graduation to enter the working world.
A lot of people ask how I got better. I have no idea. There was no
miracle drug or treatment. My body just seemed to improve over 5
years. I feel lucky because many CFS patients are sick for decades
and never get better. They never reach their goals. They never live
their dreams. I never forgot these people.
Fast forward to 2006. The medical community was finally paying
attention! The CDC was teaming up with the CFIDS Association for an
awareness campaign. The launch was in Washington DC. I had to be
there. I asked my bosses at the time to send me to cover the story.
It was a big request but they said yes. I will be forever grateful.
I had no idea it would be so emotional standing there at the news
conference. I heard stories like mine and much worse. I heard the
head of the CDC say we had been ignored for too long. It was time we
received respect from researchers and from the public and the CDC
would invest time and money to make sure those things happened. It
brought me to tears. I had wanted to hear those words for more than a
I put the story together with the stipulation from my bosses that I
tell my story. I agreed to use the embarrassing teenage photos if
that's what it took. You can see the story on YouTube.
It ran on November 8th, 2006. I remember feeling like I was naked
while it was airing because everyone was seeing something so personal.
By the time I walked out of work that night I felt 10 feet tall and I
was bursting with pride. Through struggle I had reached my goal of
becoming a journalist and I was telling the story I got into the
business to tell. I was helping all the CFS patients who were not
getting respect. I received thank you notes from hundreds of them and
helped many of them find support groups and find one another.
I'm not sure how much has changed since 2006. There have been small
breakthroughs but there is no cure. However, the CFIDS Association
has a friend in the CDC.
I hope CFS patients know they have a friend in me.
Please visit www.cfids.org to learn more and or go to YouTube to watch
the story I was meant to tell.
"The treatments act on the immune system because we believe that ME, or Chronic Fatigue Syndrome, is an immune system dysfunction," said Enlander, adding that to date 65% of his patients "actually recover from the treatment."
"I do believe that CFS and FMS are related illnesses," he feels.
Not stopping with just a treatment, Enlander promises to keep investigating the disease until more in depth knowledge about it can be discovered leading to further treatments and a possible cure. He is currently embarking on a new research project into the disease.
Tuesday, November 9, 2010
Garbage In, Garbage Outposted by Mary Schweitzer, Ph.D. on 09 Nov 2010 at 10:53 am
You get what you are looking for (or as the old computer phrase goes, GIGO - garbage in, garbage out). The data set for this study does not diagnose the disease the CDC and NIH named "chronic fatigue syndrome" in 1988, though it claims to.
The CDC questionnaires that supposedly "operationalize" the Fukuda definition do nothing of the sort - they duplicate the Wessely definition used in the United Kingdom, which basically looks at chronic fatigue with no physical symptoms (that are not attributed to somaticizing). When the questionnaires were first released, the CDC's own estimate of the prevalence of CFS in the U.S. jumped from 500,000 (AACFS meeting, Cambridge MA, 1998) to 4 million in 2006.
An 8-fold increase in 8 years can mean only one of two things: either we are in the midst of a serious epidemic, or the Dr. William Reeves, head of CFS at CDC for 20 years, continues to play around with the public perception of the disease.
This is a very serious biological illness with a stupid name. (It was originally called epidemic neuromyesthenia in the U.S. and myalgic encephalomyelitis in the old British Commonwealth nations.) In 25 years of outbreaks in the U.S., all CDC has accomplished is giving the disease a silly-sounding name and fooling the public with cooked data sets. Would that be propaganda or censorship? Your choice.
I am not a disinterested observer. I have been disabled with the disease since October 24, 1994.
I tested positive for XMRV, the newly discovered retrovirus, in 2009. Let me share with you what else I test positive for, and have for 12 years: the 37kDa Rnase-L defect, recurring EBV, and HHV-6, Variant A, first discovered among AIDS patients (I was in a study). I do well enough on an experimental immune modulator called Ampligen. But when I have to go off it, I relapse. The FDA took it away from me in February 2008; by September 2008, I was seeing a new specialist who tested me for more biomarkers. We can add a natural killer cell function of 2%, active cases of cytomegalovirus, HHV-7, and three strains of Coxsackie B. My VO2 MAX score was below 15. I had an abnormal SPECT scan, and continue to have NMH, hypothyroidism, and Hashimoto's thyroiditis.
I hardly believe this can be due to a personality disorder - but telling the world that it IS prevents others from being tested and treated. Since insurance does not have to pay for most of this (thanks to CDC), only those of us who can find the money can be tested, let along treated.
The best estimate of prevalence is roughly one million adults - CDC says 4-7 million - either way, it's far too many people to be left to suffer alone. We do not know how many young people have it, but preliminary studies at DePaul would suggest the incidence in adolescence is equivalent to that in adulthood.
Psychiatry is supposed to help people, and it can. But when it is used to help insurance companies deny benefits to the desperately ill, it is time to start thinking harder about standards for that profession.
Mary M. Schweitzer, Ph.D.
Monday, November 8, 2010
Killing Health Care and Deceiving Americans*
*Greg Crowhurst 8th Nov 2010*
*(permission to repost) *
I burned the dinner last night, so enthralled was I by Time magazine's (
Nov 15 p. 20) review of Wendell Potter's *Deadly Spin: An Insurance Company
Insider Speaks Out on How Corporate PR is Killing Health Care and Deceiving
Americans, *which is finally out this week : Nov 9th.
Flinging open all the windows, trying to get rid of the smoke, I was praying
that a lot more smoke and fire will be generated by this blazing expose of
the medical insurance industry.
Potter, according to Time :
"*exposes how corporations manipulate public opinion in the service of
shareholders ,forming front groups, touting misleading studies and
enlisting sympathetic media types to further their causes."*
..It was like reading our life story. For anyone with ME, these words put in
a nutshell all that is so wrong . Everyone knows that it precisely because
of the power of the Medical Insurance lobby that we have the CDC and
Oxford definitions, that we have the nonsense term : "CFS", that we have
CBT and GET, rather than a physical cure.We all know this.
But how hard to talk to anyone about what we know , without hearing oneself
sound like a crackpot conspiracy theorist. Well maybe from this week, it
will be easier to have that confabulation.
As Mercurio states :
"*What's truly novel about **Deadly Spin **is that it provides an inside
look at how health insurance industry spinmeisters mobilize to justify the
actions of health plans that deny care, to discredit supporters of
healthcare reform, and to position the industry as "part of the solution" to
our healthcare problems. The formula: extensive use of industry-funded front groups, fearmongering campaigns, disinformation and reliable industry allies (third-party advocates and pundits) to disseminate pro-health plan messages that can't be traced to insurers.*"
One example Potter gives concerns the use of PR firm APCO Worldwide who
were recruited by insurance giant Cigna , "t*o place stories with
reporters, editors, and producers it had good relationships with and to get
'third parties' to convey Cigna's messages*."after a 17-year-old health plan
member died of cancer , because she was denied coverage of a liver
He also describes how the industry hired PR firm Porter Novelli to set up
the Health Benefits Coalition, which effectively killed the Patients Bill
of Rights in the late 90's.
Who are these people, I have often wondered, who cause so much suffering ???
Potter's description is harrowing :
*"I didn't feel then that we were doing anything unethical or underhanded.
We were all well read and well educated….We all wore nice clothes and ate at
the best restaurants and had kids in good schools and houses in the right
zip codes. We knew people in Congress and the White House. We talked every
day to reporters at the **Wall Street Journal **and the **New York Times**.
We were powerful and influential….The American dream didn't get any better
In a House of Lords debate last year (March 18th 2009) the Countess of Mar
quoted this from *Health Insurance News (*
*"Medical Insurance May Not Cover Chronic Fatigue",*
gives a condensed description of ME. It then states:*
sounds like a physical problem, doesn't it? However, the NICE guidelines
suggest that it is a psychiatric condition rather than a physical one.".*
goes on to say:*
of the NICE guidelines private health insurance companies are within
right to refuse cover if an applicant's policy does not include
cannot find any confirmation for the extraordinary suggestion that ME is a
psychiatric condition in the NICE guidelines. Will the Minister ensure that
this misinformation is rapidly withdrawn?"*
*The Countess of Mar then added: *
*"I have been dealing with ME sufferers for 17 years and I have never encountered a group of patients who are so maligned. The last straw for them
is the requirement that they undertake a course of CBT and/or GET in order
to qualify for benefits and private insurance payments.*
Replying to the debate for the Government, Baroness Thornton said:
"The noble Countess, Lady Mar, made a very interesting and well informed
speech about CFS/ME, whose sufferers she has championed for many years. I
will be pleased to investigate the issues that she has raised about CFS/ME
treatment, recommended by NICE. It is important to restate the value which
the Government place on the independence of NICE's evaluation process, but I
undertake to follow up the disturbing point she made and see whether I can
provide her with clarification."
Well, we can only hope that Baroness Thornton, now Opposition
Spokesperson for Health and for Equalities Office , reads Deadly Spin !
For, as Anne Landman explains, it reveals all :
"*The book details disinformation campaigns that health insurers use to
cover up their misdeeds and manipulate public policy, reveals insurers'
public relations tricks, like commissioning bogus scientific studies, working through fake "grassroots" organizations, and disseminating rhetoric designed to scare the public. (Think phrases like "socialism" and "death panels," that Wendell reveals were created by health insurance companies.) Wendell tells about the methods
insurers use to "dump the sick," discusses the skyrocketing premiums and
high deductibles that are putting health care out of reach for working
people, and discloses the outrageous salaries that insurance companies
executives make while denying care to patients.* "
(The Lived Experience of Severe ME)
Sunday, November 7, 2010
Friday, 5 November 2010, 2:31 pm
Press Release: ME Society
Leading World Expert in Myalgic Encephalopathy/ Chronic Fatigue
Syndrome to visit New Zealand
Professor Nancy Klimas will be visiting New Zealand in late November,
at the invitation of Associated New Zealand ME Society (ANZMES), to
update the medical community on recent developments in the research,
diagnosis, management and treatment of patients with ME/CFS, and the
ongoing investigation into the possible links with xenotropic murine
leukemia virusrelated virus (XMRV).
Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) is a
debilitating long-term disease that can affect anyone. In New Zealand,
it is estimated that there are around 20,000 sufferers. It is thought
to afflict around 150,000 in the UK, and over one million in the US.
Nancy Klimas is a professor of Medicine, Psychology, Microbiology and
Immunology at the University of Miami School of Medicine. She leads a
multidisciplinary research team representing the fields of immunology,
autonomic medicine, neuroendrocrinology, behavioural psychology,
rheumatology, nutrition and exercise physiology.
Prof Klimas is also director of Research for the Clinical AIDS/HIV
Research at the Miami Veterans Affairs Medical Centre.
Over the week of 21-30 November Prof Klimas will be lecturing in
Auckland, Whangarei, Hamilton, Rotorua, Tauranga, Wellington and
Dunedin. Recent investigations by the Whittemore-Peterson Institute
have been verified by independent studies performed by the National
Institutes of Health (NIH) and the Food and Drug Administration (FDA)
confirming the strong association between a family of murine leukemia
viruses (MLV), that includes XMRV, and ME/CFS.
Although this is at the early stages of investigation it does show
that ME/CFS is a real physical illness and patients need long-term
medical support and assistance from others.
There is currently no cure for the illness and there are difficulties
in making a clear diagnosis of the condition. The study by
Whittemore-Peterson Institute, NIH and the FDA may lead to the
development of both a diagnostic tool and a treatment, potentially
using medications already in use today for other conditions.
Relationships among pain and depressive and anxiety symptoms in
clinical trials of pregabalin in fibromyalgia.
Arnold LM, Leon T, Whalen E, Barrett J.
correspondence and M.D., 222 Piedmont Ave., Suite 8200, Cincinnati, OH
BACKGROUND: Fibromyalgia, as defined by the American College of
Rheumatology, is characterized by widespread pain lasting for at least
3 months, with pain in at least 11 out of 18 tender points when
palpated with digital pressure.
OBJECTIVE: The authors investigated the relationship between changes
in pain and symptoms of anxiety and depression, using data from
pregabalin clinical trials.
METHOD: Results from three double-blind, placebo-controlled trials of
pregabalin monotherapy in fibromyalgia (8-14 weeks) were pooled, and
baseline to end-point changes in pain and Hospital Anxiety and
Depression Scale (HADS) scores were analyzed. Path-analysis evaluated
the association between improvements in anxiety and depression and
RESULTS: Baseline HADS scores indicated moderate-to-severe anxiety in
38% of patients and moderate-to-severe depressive symptoms in 27%. The
improvement in pain was not related to baseline levels of anxiety or
depression. The correlation between changes in pain and depressive or
anxiety symptoms was low-to-moderate. Path-analysis showed that most
of the pain relief observed with pregabalin treatment was a direct
analgesic effect and was not explained by improvement in mood.
CONCLUSION: Response to treatment of pain in the pregabalin trials did
not depend on baseline levels of anxiety or depressive symptoms, and
pregabalin improved pain in fibromyalgia patients with or without
depressive or anxiety symptoms. Changes in the level of anxiety or
depression had a low-to-moderate impact on pain reduction. Pain
reduction with pregabalin treatment appeared to result mostly from a
direct treatment effect, rather than an indirect effect mediated
through improvement in anxiety or depressive symptoms.
Secret documents reveal that government-funded experts were warned nearly 30 years ago that tranquillisers that were later prescribed to millions of people could cause brain damage. The Medical Research Council (MRC) agreed in 1982 that there should be large-scale studies to examine the long-term impact of benzodiazepines after research by a leading psychiatrist showed brain shrinkage in some patients similar to the effects of long-term alcohol abuse. However, no such work was ever carried out into the effects of drugs such as Valium, Mogadon and Librium – and doctors went on prescribing them to patients for anxiety, stress, insomnia and muscle spasms. MPs and lawyers described the documents as a scandal, and predicted they could lead the way to a class action costing millions. There are an estimated 1.5 million "involuntary addicts" in the UK, and scores display symptoms consistent with brain damage. There are a growing number of claims a gainst individual doctors for negligent prescribing benzodiazepines. Ray Nimmo, prescribed Valium as a muscle relaxant for stomach pain in 1984, received £40,000 in an out-of-court settlement in 2002 after 12 years of addiction. In the 1980s 17,000 claimants began a class action against the pharmaceutical manufacturers Roche Products and John Wyeth. Procedural delays, technical motions and escalating costs prevented the cases coming to trial.
Nina Lakhani, The Independent On Sunday