Friday, October 14, 2011

Top 10 Things NOT to Say to Someone with ME/CFS

 
6. You're just doing it to get out of {insert event}.
This was a really popular one for my ex, and to some extent he was correct.  The stuff that was important to him was not necessarily something that was important to me.  Every weekend excursion had to be weighed against the chance that it might cost me a day or two at work later in the week.  Frankly, most of the stuff that he was interested in wasn't worth it; I wasn't going to enjoy myself enough to justify the risk of losing a few days pay.
 
I'd already discovered that his idea of negotiating was to promise me anything and deliver nothing.  "I'll go with you to the festival if you cook dinner every night so I can rest up" would nonetheless result in my cooking dinner every night.  He'd "forget".  He'd find somewhere else to be when I got home from work.  He'd be "too busy".  My health simply was not important to him, therefore his choice of activities couldn't be important to me. 
 
My highest priority was to keep working so we had a roof over our heads, and if that meant he felt neglected, too bad; me quitting wasn't an option because for half the marriage he didn't have a job.  Someone had to work, and that someone was me.
 

Thursday, October 13, 2011

How Black Death Kept Its Genes But Lost Its Killing Power

 
 

The Truth About Trendy Health Food

 
"that bar may be organic, wheat-free and raw, but it isn't food. So here's my suggestion: Let's look past all these trendy, supposed health products and bring back the real trend -- food.  The problem with trendy foods is that they confuse people about what's healthy and what's not -- sometimes they confuse us so badly that we make very irrational choices."
 
"It doesn't matter how wheat- or dairy- or fat-free your meal is if it isn't actually food."
 
 

A Rant About the Illness Narrative | No Poster Girl

 
"I really did think, when I fell ill, that my getting better would be a matter of willing myself to. After all, I'd gotten sick plenty of times before, and I'd willed myself to get better, and I got better. But that's not how it works. Whether you will yourself to get better or not, your body has an immune system, and either it does its job or it doesn't. You take drugs, and either they work against the disease or they don't. You undergo chemo, and either it turns the tide or it fails to. Will has fuck all to do with it."
 
* * *
EX-actly!
 
I have the willpower to drag myself to work on days when a lot of people would stay home in bed.  But when the immune system is gone and the doctors are doing more to hinder than to help, willpower isn't enough to do the trick.
 
In fact, willpower was causing even more problems.  By willing myself out of bed and to do things, I was using more energy than I was producing and pushing my body into bankruptcy.
 
Eventually I learned that I have to listen to my body, not my mind.  Getting through that To Do List is not as important as getting the rest I need to get well.

Meet Dan Peterson, October 23, 2011

http://www.simmaronresearch.org/index.html

Please join us for Patient Day, Sunday, October 23, 2011. RSVP today!

Patient Day
Please join us
Sunday, Oct. 23, 2011
10:00am to 4:00pm
at the Parasol Building

Speakers To Be Announced
Tour of the new office facilities & Lunch from 12-2
Updates on 2011 IACFS/ME conference in Ottowa
Updates on research from Simmaron
Immunology 101 with Daniel Peterson, MD

RSVP by October 14th
jsmith@simmaronresearch.org or 775-298-0030

We look forward to seeing you...

948 Incline Way, Incline Village, NV 89451

Wednesday, October 12, 2011

New York Downtown Hospital to pay $13.4M to settle Medicaid fraud

 

"The hospital submitted more than 2,000 Medicaid claims worth more than $9.15 million, according to the article.

"Downtown Hospital knowingly submitted false and fraudulent claims to Medicaid from 2002 to 2006"

* * *

Once again, the fraud is perpetrated not by the poor patients, but by the rich doctors.  When will the political system vilify the REAL criminals?

Tuesday, October 11, 2011

Message from Dr. Judy

Message from Judy Mikovits re- WPI research programme UK and Ireland;

To UK/Ireland and all others in the Mikovits Research studies:

I am writing this note today to reassure everyone who consented into the
Research program of the WPI including but not limited to the 5 year R01
pathophysiology of ME/CFS, that as Principal investigator, I have the legal
right to continue that research at another institution and to take with me the
samples and materials and supplies purchased for the sole purpose of that
research. Since the sudden closing of the WPI research program on September
30th, I have been in active discussion with several institutions who are
enthusiastic about the opportunity to participate with me in this important
research. I strongly encourage you to voice your support by emailing me at
jamikovits@gmail.com. As you know, your consent form stated that you could
withdraw from these studies at any time. The funding agencies need to know
that you will withdraw your consent if the research is not done under my
direction and thus two years of precious samples and resources will be wasted.
Emails from participants in support of me continuing my research will
greatly help me. I deeply appreciate not only your participation in my research
but also your ecards, emails, encouragement and most importantly your
trust in my integrity during this difficult time.

Judy

Letter: A Sick Joke?



PERMISSION TO FORWARD, RE-POST ON SOCIAL NETWOKING SITES, ONLINE GROUPS
AND USE IN NEWSLETTERS

Malta Today Letters.

It is difficult to decide which would be worse: (1) not to accept that
M.E. (Myalgic Encephalomyelitis) exists at all as a seriously disabling
discrete neurological illness - even though the World Health Organistion
has done so since 1969 and the most recent International Consensus
Criteria (Carruthers et al, August 2011) reinforces that M.E. is
separate from Chronic Fatigue Syndrome (CFS), or (2) to admit that M.E.
may exist, obfuscate it within the heterogeneous CFS bundle, where it
does not belong, since the nebulous symptom "fatigue" is not a
prerequisite for M.E. but then reckon that M.E. is not sufficiently
debilitating to make the sufferer eligible for welfare payments (A sick
joke? Study reveals how ME sufferers excluded from welfare system, Malta
Today, 9 October 2011 -
http://www.maltatoday.com.mt/news/2011/1008/a-sick-joke-ME-sufferers-welfare-system).
There's no humour here, only rotten science, poor logic, feeble morality
and utter carelessness for one's fellow beings.

May I suggest that representatives of the Maltese Government, who hold
either of these views, visit just one or two people whose M.E. meets the
International Consensus Criteria and, perhaps be shocked into the
reality that current welfare policy is untenable. I am sure that the
caring and supportive group ME sufferers Malta
(http://www.mesufferersmalta.org), which for many is the only life line
they have, will provide you with contact details for a few of the
millions of sufferers there are around the World, who are invisible
because of the severity of their illness and for whom, sometimes, the
consequences of revealing themselves - disbelief, even ridicule;
disciplinary action from schools or social services, even involuntary
psychiatric treatment - may be worse than remaining concealed.

Malta is far from alone in its shabby treatment of M.E. sufferers. The
UK Government is using a foreign outsourcing company, Atos, to do its
dirty work of trying to force some people back to work, who cannot stand
upright, or will suffer relapses due to enforced medical examinations by
unqualified assessors, when there is no one to witness them 24 or 48
hours later. M.E. sufferers are not entitled to assistance with fuel
payments, which some healthy people receive, or prescriptions for
essential drugs which they sometimes go without to pay for food or to
avoid loan sharks at the door. I have no reason to believe it is much
different anywhere else in the world.

Perhaps you have to have this hideous illness yourself, or see it
devastate the life of a loved one before you appreciate its destructive
force. Having done so for more than two decades, I could not wish it on
anyone, not even these who seem to know not what they do but nor can I
forgive them for it. Ignorance is only tolerable if it is accompanied by
a willingness to be educated by those who know.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
M.E. Community Trust.org
Dr John H Greensmith

Monday, October 10, 2011

Premiere of Voices From the Shadows

*World wide premiere of Voices From The Shadows, The Mill Valley,  Film
Festival, USA, Saturday 8th October2011*

*
*

The reason we participated in the film is because we want the secret
suffering  of people with Severe ME to be seen and respected properly,
rather than the common media image of ME which is portrayed only as Chronic
Fatigue, as being "tired all the time" with perhaps a sore throat, or
depressed.


The representation of ME has a form of depression by the media has done so
much damage,  in  ordinary people's understanding and image of people with
ME.


Depression  is the last thing you have in Severe ME ; in order to cope, to
survive, you have to maintain your internal integrity and sense of who you
are in the face of an horrendous onslaught of disabling
and debilitating neurological symptoms,which  tend to be omitted from the
popular image of ME, but ultimately is what the disease is all about.


If you have not  got neurological symptoms , you do not have ME ;  that
reality is neglected to such an extent that biomedical tests and treatments
are completely ignored, even refused to ME patients and they are treated
as malingerers and nutcases, people who just aren't trying hard enough, who
somehow are at fault for just being ill.


If somebody says they have Cancer, they will receive compassion, concern and
support from the medical profession, Social Services, society; if they
manage to walk about, to engage in social activities, they are somehow seen
as heroic , whereas the person who has Severe  ME, who struggles to engage
with ordinary life, every moment of every day, but may be able
to occasionally interact , is more likely to be misinterpreted as being not
really ill and not needing the help and understanding which is critical for
them to survive.


Let us hope this film brings about a radical shift in people's awareness of
serious neurological nature of this neurological disease and the need for
biomedical integrity.


Let us hope that the truth will be finally heard  that ME is not a
psychiatric illness and should not be treated as such.


We believe it is not possible for anyone,   with any spark of humanity, to
watch Voices From the Shadows and  not emerge profoundly shocked , outraged
at what the psychiatric lobby  have done ; it is gut-wrenching.

(Link to the premiere  :  http://mvff2011.inticketing.com/films/166223)


Linda and Greg Crowhurst

--
Greg Crowhurst
www.stonebird.co.uk
(The Lived Experience of Severe ME)

Many mysterious disorders involve the brain and nervous system

US Political Action Opportunity

Join the Coffee Party Movement
We just created a section on our website called "Voices" with some great statements from people around the country. http://bit.ly/enoughstatement

To participate, tell us how Washington's corruption has affected your life. You can write a statement or leave a message at (301) 259-1135. We will also collect some of the comments from this thread.
* * *
OK, folks ... every PWC has a story about how the government has ruined our lives.  GO FOR IT!

Free Webinar: Blood Safety Study Results - Fri., Oct. 14.

Free Webinar: Blood Safety Study Results
>
> Webinar: Fri., Oct. 14.
> Join us on Oct. 14, 2011 to hear from leaders of the Blood XMRV Scientific Research Working Group about the results of their study reported last month in Science. Free registration: https://www1.gotomeeting.com/register/606452768
>
> Background:
> A report in Oct. 2009 linked CFS to the retrovirus xenotropic murine leukemia virus-related virus (XMRV -- http://www.research1st.com/2011/09/13/the-x-factor/). In late 2009 the Blood XMRV Scientific Research Working Group was formed by the U.S. Department of Health and Human Services to design and carry out a study to determine whether XMRV posed a threat to blood safety. The multiphase, multicenter study has been supported by the National Heart, Lung and Blood Institute and coordinated by the Department of Health and Human Services Blood XMRV Scientific Research Working Group.
>
> Results from Phase I of the study were reported in July 2010 at a meeting of the Food and Drug Administration's Blood Products Advisory Committee (BPAC). Phase II results were presented at a BPAC meeting in December 2010 and in a webinar (http://www.youtube.com/watch?v=0HynlkG0cVc). Phase III results were published on Sept. 22, 2011 in Science (http://www.research1st.com/2011/09/22/study-summaries/) and presented at the IACFS/ME conference in Ottawa on Sept. 23, 2011. None of the 19 assays used by nine participating labs was able to distinguish previously XMRV/MLV-positive CFS cases from healthy blood donors or pedigreed negatives on the basis of results for XMRV or the larger family of murine leukemia viruses for which they tested.
>
> Study leaders will repeat the Ottawa presentation via a webinar with open registration, thus enabling a larger number of stakeholders to hear directly about the study design, results and conclusions. Drs. Michael Busch, Graham Simmons and Steven Kleinman will discuss consequences for blood safety and the understanding of these agents' role in CFS. Written questions can be submitted at the time of registration or by participants during the webinar.
>
> Webinar Details:
> Date: October 14, 2011
> Time: 4:00 PM - 5:00 PM (Eastern time)
> Speakers:
> Graham Simmons, PhD of Blood Systems Research Institute
>
> Michael Busch, MD, PhD of Blood Systems Research Institute
>
> Steven Kleinman, BSc, MD of University of British Columbia
>
> Free registration: https://www1.gotomeeting.com/register/606452768
>
> ~~~~~~~~~~~~~~~~~~~
> Related Resources
>
> For more information about the Sept. 22, 2011 report in Science of the Phase III results, please visit http://www.research1st.com/2011/09/22/study-summaries/
>
> For more information about XMRV, please visit http://www.research1st.com/2011/09/13/the-x-factor/
>
> For a list of XMRV-related articles and publications, please visit http://www.cfids.org/xmrv/resource-listing.asp
>
> For information about blood donation by individuals with CFS, please visit http://www.cfids.org/blood.asp
>
> For the recording of the Phase ll results webinar, please visit http://www.youtube.com/watch?v=0HynlkG0cVc

Why the 00 studies are invalidated & why Lombardi et al. discovered

Voices From the Shadows Available to View for Free Through Oct 16

jamesoutwest writes:
I attended the screening of Voices From the Shadows yesterday and it was a wonderful film. The film is currently available to view for free through October 16 at:
http://mubi.com/films/voices-from-the-shadows

-James
 

Undiagnosed Diseases Program

Source: PharmaBiz
Date:   October 10, 2011
URL:    http://www.pharmabiz.com/NewsDetails.aspx?aid=65459&sid=2


NIH undiagnosed diseases programme documents two-year pilot
as clinic of last resort
-----------------------------------------------------------

Bethesda, Maryland. After its first two years of work, the Undiagnosed
Diseases Programme (UDP) of the National Institutes of Health (NIH) is
citing successes in patients whose cases have stumped specialists at
leading medical institutions around the country. The researchers
published the programmes first retrospective analysis in the September
26, 2011 early online issue of Genetics in Medicine.

The successes include the diagnoses of siblings whose calcium-riddled
blood vessels made it excruciatingly painful to walk, a woman with
life-threatening protein deposits in her muscles and a 20-year-old
whose diagnosis makes him the oldest survivor of his previously
undiagnosed muscle and lung disorder.

'The UDP responds to a critical unmet need, with compassion, clinical expertise and state of the art genomic technologies,' said Daniel Kastner, MD, PhD, scientific director at the National Human Genome Research Institute (NHGRI). 'A patient who cannot be diagnosed may cycle through the medical system with no satisfactory treatment plan or be abandoned by the medical system. Through the UDP, NIH provides a glimmer of hope to patients and their families, while at the same time gaining remarkable medical insights.'

The UDP is supported by the NIH Office of the Director, NHGRI, the NIH
Office of Rare Diseases Research (ORDR) and the NIH Clinical Centre.
The report focuses on 160 patients of the total 326 cases accepted
into the program. More than half of the accepted patients had
undiagnosed neurological problems. Other prominent disorder categories
include gastrointestinal disease; fibromyalgia and chronic fatigue
syndrome; immune-mediated and rheumatic illnesses; psychiatric
conditions; pain; dermatologic disorders; and cardiovascular disease.

So far, most of the solved cases - 37 of 39 cases for which the UDP
team arrived at a diagnosis - involved diseases previously encountered
in the world of medicine, according to UDP authors. In general, about 500 diseases are common enough to be in any physician's repertoire for diagnosis, while another 6,500 are known but are exceptionally rare, according to ORDR data.

UDP researchers reviewed, evaluated and diagnosed 23 patients with
rare diseases, of which 15 cases reflect extremely rare diseases
affecting fewer than 10,000 people. The authors note that while these
are known disorders, some lack diagnostic tests or medical definitions
to describe them. Rare diseases are defined as those affecting fewer
than 200,000 people in the United States.

The programme has also delved into the realm of unknown maladies. In
February, the UDP announced the programmes first discovery of a new
disease, called ACDC, or arterial calcification due to deficiency of
CD73, in the New England Journal of Medicine. CD73 is a protein that
produces a small molecule, adenosine, which protects arteries from
calcifying. A report on one additional new disorder is pending
publication.

The siblings whose cases led to discovery of ACDC continue to
experience pain while walking more than a short distance. The NIH
researchers, however, have obtained approval to start a drug treatment
protocol that could improve their condition, which will be initiated
within months.

The patient who UDP researchers encountered with an unexplained muscle
condition was diagnosed with a rare form of amyloidosis, a condition
in which bone marrow produces excess immunoglobulin proteins, which
had accumulated in the patient's muscle tissue. The NIH team referred
the patient for a stem-cell, bone marrow transplant, using healthy
donor stem cells. The patient has subsequently experienced progressive
improvement in her condition.

The UDP team also succeeded in diagnosing the 20-year-old patient with
a condition called spinal muscular atrophy with respiratory distress.
The condition causes damage to muscles, including respiratory muscles.
The patient remains dependent on a respirator for much of his day but
last year achieved the significant personal milestone of high school
graduation. The diagnosis has allayed the patient's concern that the
condition might at any point impair his learning.

A typical UDP patient visits the NIH Clinical Center for one week. The
case is evaluated by specialists from several of NIH?s 27 institutes
and centres, with expertise in areas such as neurology, radiology,
dentistry and rheumatology. A key component of the programme is
genetics, so researchers collect DNA from blood or tissue samples from
all participating patients, and often from family members to support
the genomic analyses.

Most of the patients accepted in the first two years of the UDP had
their DNA analysed for known single nucleotide polymorphisms (SNPs),
which reflect differences in the single chemical subunits of DNA that
could indicate a genetic disorder. Their tool in the SNP analysis
process is called a million-SNP array, which can be used to find
potentially important differences between the genome of an affected
individual and an unaffected family member, pointing to the genetic
cause of a disorder. This approach resulted in three successful
diagnoses.

The researchers performed both whole-genome sequencing, deciphering
all of an individual's DNA code, and whole-exome sequencing, an
approach that decodes the 1-2 percent of the genome that contains
protein-coding genes. They analysed DNA from 32 patients, along with
DNA from 78 unaffected family members. This approach proved critical
for the diagnoses of six patients' disorders.

NIH is evaluating use of these advanced genomic analyses for broader
utility. The UDP diagnostic successes have proven the usefulness of
SNP detection techniques and genome sequencing tools - both whole
genome and whole exome sequencing - in the clinical evaluation of
patients, according to the study. But UDP researchers also know that
genome sequencing does not provide the whole answer. In addition to
genomic analyses, clinical findings - from specialty consults to
radiological tests - led to one third of the 39 diagnoses, according
to the study.

Doctors from around the country responded to the May 2008 call for UDP
applications, summarizing, documenting and sending the UDP 1,191 cases
for review within the subsequent two years alone. Each application
includes a referring health care provider summary letter and complete
medical records.

'The applications may represent years of evaluation by multiple
doctors at more than one medical facility - but with no conclusive
diagnosis,' said William Gahl, MD, PhD, NHGRI clinical director and
UDP director. 'We look for some clue in the medical record - from an
abnormal lab test to a collection of symptoms that don't usually occur
together. If we can establish a direction for further follow up, we
may invite that patient to be seen by our team at NIH.'

NIH clinicians participating in UDP - up to 60 health care providers
at the nation's largest research hospital - screen the applications
and accept patients based on the availability of clinical and research
resources. The program currently has a backlog of applications and
since July 2011 has suspended acceptance of new applications until
November 2011.

'In addition to our discovery of new disorders, the UDP work has
expanded the clinical description - or phenotype - of numerous
disorders,' Dr Gahl said. 'The limited rate of diagnosis during the
programme is sobering. While we wish we could arrive at a conclusive
diagnosis for each patient, the reality is that many of their
conditions are likely new diseases and we continue to pursue clues
long after patients depart the hospital here at NIH.' To increase the
success rates, the UDP plans to make case descriptions available to
designated expert researchers, to both validate findings and enhance
understanding of disorders.

NHGRI is one of the 27 institutes and centres at the NIH, an agency of
the Department of Health and Human Services. The NHGRI Division of
Intramural Research develops and implements technology to understand,
diagnose and treat genomic and genetic diseases.

The NIH Clinical Centre (CC) is the clinical research hospital for the
National Institutes of Health. Through clinical research,
physician-investigators translate laboratory discoveries into better
treatments, therapies and interventions to improve the nation's health.

The NIH Office of Rare Diseases Research stimulates and coordinates
research on rare diseases and supports research to respond to the
needs of patients, healthcare providers and the research communities
involved in the care, treatment, and evaluation of products for the
prevention, diagnosis, or treatment of these conditions.

The Office of the Director, the central office at NIH, is responsible
for setting policy for NIH, which includes 27 Institutes and Centres.
This involves planning, managing, and coordinating the programs and
activities of all NIH components. The Office of the Director also
includes program offices which are responsible for stimulating
specific areas of research throughout NIH.

NIH, the primary federal agency conducting and supporting basic,
clinical, and translational medical research, and is investigating the
causes, treatments, and cures for both common and rare diseases.

--------
(c) 2011 Saffron Media Pvt. Ltd

Sunday, October 9, 2011

Partial transcript of Friedman's podcast

[Jane Clout took the time to prepare this (partial/near complete?)
transcript and posted it today on mecfsforums with permission to
repost.  @XMRV_GA yesterday found an alternative link that may work in
all browsers for those who want to listen:
http://www.radio4all.net/index.php/program/54805 . I can't listen at
the moment so can't comment on accuracy . Tom (@TomKindlon) ]

http://bit.ly/qZPapF  i.e.
http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKenFreedmanChronicFatigue59m52s.mp3

Dr Ken Freidman on the future for Chronic Fatigue Syndrome research
and treatment - thoughts from the IAME conference.

This recording doesn't play properly until 12:00, and even then there
are breaks in the recording until the second half.  I'm transcribing
that section, because Ken has some important stuff to say there.  I
just wish I could hear it all.

Having played it right through and gone back to the start, it seems to
be playing ok now. Loading problems.

Disrespect welcomes Dr Ken Friedman.


04:00 Ken: "In the United States there was just a very recent - I'm
going to use the term battle -with regard to the ICD because the US
government was going to place Chronic Fatigue Syndrome as a somatoform
disorder as opposed to maintaining it as a neurological disorder so a
group of organisations banded together  and wrote a long, very
scientific argument as to why Chronic Fatigue Syndrome should not be
considered a somatoform disorder but rather a neurological disorder,
and went to essentially an appeal hearing in Baltimore, Maryland on
September 14th and presented their argument, their document, and what
we were told is that based upon the strength of that document, and the
scientific arguments, that in fact Chronic Fatigue Syndrome would be
retained as a neurological disorder and not moved into a somatoform
disorder.  So we are very pleased with that but we certainly want to
maintain that from this point going forward.

05:17  Interviewer: Asks question about difference between Neuro and
Somo disorders... Ken explains.  Talks about prejudice against people
who work in the field, the difficulty in getting disability insurance
payments,  and doctors under investigation for treating biomedically,
including Myhill, and one other whos name is not yet in the public
domain and is not given here either.

10:00  Talks about his SOK presentation April 6th this year and the
prejudice against researchers and patients and doctors.  "The
underlying thing (belief) is that if you don't have a test for it,
then it doesn't exist"  Goes on to talk about sectioned patients in
England and forcibly removed children in the US

15.30  Music break

18:44  Interviewer:  "Did the conference hold out hope for any of
these situations in its attempts to change the view of CF and of new
research?

Ken:  I think there is - um - I think we all, both patients and
researchers and healthcare providers left the conference with a much
more positive attitude, and I think that because we all left knowing
that it is still a puzzle and that we do not have all the answers or
know all the pieces of the puzzle but that we are divising a method or
methods of working with the pieces of the puzzle.  For example, there
are now at least four different definitions of Chronic Fatigue
Syndrome, and we think we have a pretty good research definition of
Chronic Fatigue Syndrome and a pretty good definition for diagnosing
and treating Chronic Fatigue Syndrome.

Interviewer:  Care to share any of those?

Ken:  Well the research definition that seems to be used is something
called the Fukuda case definition, Fukuda et al, which dates back to
1994, and that definition has been used since that date forward.  It
is much more restrictive a case definition than one would like to see
used on patients, but it helps to define a patient population that is
relatively suffering from similar symptoms and so therefore for
research purposes you are apt to get results that are clearly defined

Interviewer: So it's a conservative definition

Ken: A conservative definition that may exclude some patients and
therefore is not workable in a  clinical situation.

In the clinical situation, you want something that is more relaxed, or
a more inclusive definition, and there are actually a couple of
those.  There's what's called the Canadian case definition, which was
developed in 2003, 2004, and that seems to be very good at identifying
patients and their key symptoms, and having them diagnosed as having
Chronic Fatigue Syndrome and then there is a brand new one that has
been developed in 2011 that is called the International case
definition, and that one is essentially too new for anyone to have any
sense of how it will fare, as either a patient case definition or as a
research case definition.

But what seems to have happened at this meeting is that there seems to
be agreement that we will collect data or get information from each
patient that will permit us to diagnose patients using several of
these case definitions, (interviewer: really?) so that the information
will not be lost, and so that we will then in retrospect be able to
see which case definition works best, both in the clinical situation
and in the research situation, and that's a much more intelligent
approach than trying to squeeze all patients into one case definition,
and obviously excluding some patients from treatment because they
don't fit this particular case definition.

(i.e. suck it and see.  This bit really worries me. jc)

One of the interesting papers that was presented at this meeting was
by a clinician, I believe he's at GW, near Washington DC, was sort of
a courageous thing, what he did was he took his Chronic Fatigue
Syndrome patients, and he treated them for Lyme disease, and
approximately a third of them improved, their physical condition
improved when treated for Lyme disease.  Its not sure exactly what
that means.  We're not sure whether that means that approximately one
third of the patients in his patient population had Lyme disease, and
were just missed with the Lyme disease diagnosis, but when they were
treated for Lyme disease actually improved,  or whether the actual, or
their particular kind of Chronic Fatigue Syndrome is susceptible to
the same sort of treatment with anti-biotics
that are used in the
treatment of Lyme disease, so that there is at least potential overlap
between Chronic Fatigue Syndrome and other illnesses, and this is
something that needs to be looked at much more carefully.

24:15 Interviewer:   And you spoke of multiple causes too, or multiple origins?

Ken:   Yes, I do believe that there are multiple origins, and I
believe that the majority of clinicians and researchers at this
meeting were coming to this point of view.  Because there are a number
of infectious agents that have been found to be initiators of the
illness cycle in patients.  One of the names, former names of Chronic
Fatigue Syndrome was chronic Epstein Barr Virus, and now there is work
to show that patients that get sick with other viruses also develop
Chronic Fatigue Syndrome.  HHV6 for example, and enterovirus.  If
patients do not recover from these viral infections they can develop
Chronic Fatigue Syndrome.  So it would appear that Chronic Fatigue
Syndrome is essentially the body's response, or perhaps the body's
immunological response to an infection that isn't cleared from the
body, which might argue that the people in whom this occurs have
immune systems that are unable to clear these infections and therefore
Chronic Fatigue Syndrome represents an immune system abnormality
or
defect because these patients lack the ability to clear these
infections from their body.

Interviewer:   And they have an immune system what?  Inability?

Ken:  Inability or defect to clear these infections from their body
and so they persist.

Interviewer: Yes, I think immune abnormalities have long been found in
Chronic Fatigue patients haven't they?

Ken:  Immune abnormalities have been found.  The problem is that there
isn't one consistent finding. And perhaps the reason for that is that
there are these sub-categories of Chronic Fatigue Syndrome patients
and that if we define the right subcategory of Chronic Fatigue
Syndrome patients then we may be able to find a clear, uniform,
distinct pattern of immunological abnormalities in a subset - in this
particular subset of Chronic Fatigue Syndrome patients.

Interviewer:  So then the job becomes defining the subsets?

Ken:  Absolutely.  And researchers are beginning to turn their
attention to that, and some of the questionnaires that are being
developed to screen Chronic Fatigue Syndrome patients are beginning to
ask questions that will assist us in being able to differentiate the
subgroups and perhaps the infective agents that are precipitating
Chronic Fatigue Syndrome in these patients.

27:20 Interviewer:   So this is a hypothetical, broad immune response
to neurological agents of possibly many origins with a common human
adaptation to it which involves fatigue and neurological abnormalities
and consequences - am I correct? Is this what's hypothesized?

Ken:  Well the agents are believed to be infective, and they don't
necessarily have to be neurological, although some of them may be.
There is another theory that's beginning to go around now, and that is
that if infectious agents are not cleared from the body they can
establish themselves in one or more of what's termed the body systems,
for example the gastrointestinal tract or the central nervous system
or in the cardiovascular system so that we are now beginning to see at
least the suggestion that things like cardiovascular disease or
hardening of the arteries or the deposition of plaque in the arteries
is not only caused by the deposition of cholesterol, but might also be
the reaction to some bacteriological agent that has been deposited in
the blood vessels and therefore the plaque is an attempt to cover up
or seal off those kinds of infections.  And so Chronic Fatigue
Syndrome in an analogous manner may be a reaction that is akin to that
kind of mechanism

29:15 Interviewer:  Yes, there are so many effects, and now you are
saying there are so many agents

Ken:   Well, the idea is to tease them out.  I'm pretty exited by it
because I think what we are beginning to see is a whole new area
opening up to us about how infection invades the body and the
consequences of it.
  And so that what we discover about chronic, what
I would call hidden infections in the body will be applicable to a
whole variety of diseases and answer a lot of questions that have been
around for a long time but have never been answered before.  And this
will give us a tool, a mechanism of possibly providing answers to
these questions.

30:00 Interviewer:   What else came out of the conference that you took away?

Ken:  What I took away from the conference is first of all the
willingness to work with multiple questions that lead to the
possibility of diagnosing patients by multiple case definitions.  I
think there is a renewed excitement in the involvement of the brain in
Chronic Fatigue Syndrome because there is more evidence of different
kinds.  I think there is also a lot more work in the area of genetics
and Chronic Fatigue Syndrome.   People are looking ate genes being
turned on, being turned off in what I call the subsets, or some
subsets of Chronic Fatigue Syndrome versus "normal subjects".  They
are being able to find differences, or particular genes being turned
on and turned off.  And based upon that they are looking for proteins,
or protein differences, or differences in concentrations of proteins
between patients and normal controls. And so we are beginning to see
what the differences are between normal controls and patients with
Chronic Fatigue Syndrome.  And this is all very exciting because
eventually we will be able to understand the differences between
normal healthy people and Chronic Fatigue Syndrome patients by
understanding the difference in the molecules that they are producing.
And once we do that, we should be able to alter, or change back, or
normalise the molecules that they are producing
that are producing
their symptoms.

32:15 Interviewer:    Wow!  And that sounds quite in line with current
research too, it doesn't sound far afield

Ken:    No, it's not far afield, and what it means is that there is
new excitement, and that the field of Chronic Fatigue Syndrome is
keeping up with the more advanced technologies and people are
beginning to apply those technologies to the field of Chronic Fatigue
Syndrome.  Not only are they beginning to apply it to the field, but
they are also obtaining results, significant results that will
eventually lead to better treatments.


http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKennethFreedmanChronicFatigue59m52s.mp3

Dr Kenneth Freidman on the future for Chronic Fatigue Syndrome
research and treatment - thoughts from the IAME conference.

music break until
36:25 Interviewer:  Where's the leading edge of the research and the
treatment right now:

Kenneth:  I believe the leading edge of research and treatment will be
in two area.  One will be in the neurological, in the involvement of
the brain, and the other will be in the genetics and the proteins,  or
what's called the proteanomics of Chronic Fatigue Syndrome, those to
me at this point seem to be the two most promising areas.  And again,
those are the areas that are keeping up with the most sophisticated of
treating all diseases, and trying to make gains in all diseases

Interviewer:  Which is why you said that it's keeping up - in other
words, its in the mainstream of research to treat diseases

Kenneth: That's correct.  At the meeting we had people, granted mostly
from the United States, some from Canada, some from Norway, Japan,
Australia, New Zealand, there was one fellow there from France, I'm
afraid I'm going to leave someone out and I may be chided for it but
essentially the research is coming in from all over the world.
There's a fellow there from Spain, who presented a lovely paper in a
session there that I chaired, so I believe that it's all over the
world.

38:00 Interviewer:   There's an initiative, the Chronic Fatigue
initiative, that's attracted prominent professionals that have been
treating Chronic Fatigue Syndrome some of them for as long as 20 - 25
years, can you tell us anything about that?

Kenneth:  Well the Chronic Fatigue Initiative is relatively new, and I
don't think that they are at the point where they are actually
expending grants.  The board of the IACFS/ME did meet with the folks
that run the initiative, and what we were told is that they wish to
stimulate Chronic Fatigue Syndrome research, and they are at the point
where they are gathering information to essentially determine the
status of Chronic Fatigue Syndrome research, and what they will be
doing is formulating a series of questions which they believe will
most quickly and expeditiously provide initial research results that
will stimulate other research that will provide treatment and get at
the cause of Chronic Fatigue Syndrome.

Once they have formulated those questions, they will put out a request
for proposals to address those particular questions about Chronic
Fatigue Syndrome.  It's going to be a very targeted program based upon
what they feel will be the most productive research challenges that
need to be addressed in order to quickly get to treatment and
potential cures of Chronic Fatigue Syndrome.

And I should add that there is another organisation that is coming out
of the gate, if you'll permit me to use that term, and that is called
Simmeron Research which is headed up by a group of people who are of a
similar mind, namely to promote research into Chronic Fatigue Syndrome
that will yield results in a short time-frame, and the director of
this program is a well-known internist by the name of Dan Peterson.

Dan has been working with Chronic Fatigue Syndrome patients for I
guess somewhere between twenty-five and thirty years.  (int:  He's in
Nevada, isn't he?)  Yes, yes, Incline Village.  So he has been I guess
the resource that is responsible for the formation of Simmeron and
again, this is another venue for stimulating research.

And of course we also have the Whittemore Peterson Institute where
Annette Whittemore, also with the assistance of Dan Peterson have
established a research institute, and they certainly have shaKenneth
up the field of Chronic Fatigue Syndrome and stimulated a lot of
research about Chronic Fatigue Syndrome with their initial finding of
XMRV in a large percentage of a defined patient population with
Chronic Fatigue Syndrome.

These are new players, I would call them, to the field of Chronic
Fatigue Syndrome that will bring an element of excitement, and
hopefully will accelerate Chronic Fatigue Syndrome research, not only
by virtue of their own investments into Chronic Fatigue Syndrome
research, but also by stimulating the Federal Government to pay
attention and to also put in more funds to Chronic Fatigue Syndrome in
order to balance out these private research efforts.

42:10 Interviewer:   You hear that?  Federal Governments everywhere,
pay attention!

You mentioned XMRV too, and I think that was dealt with ambivalently
at the conference wasn't it - there was one rese...

Kenneth:    Oh, I would not characterize it as ambivalence, I would
say that there are a number of findings that put the initial 2009
Science paper into doubt.  The Whittemore Peterson Institute and, I
would characterize her as the lead researcher, Judy Mikovits, still
maintain that there are many questions generated by their initial
finding that have not been addressed by the papers that have come out
subsequently, that tend to characterize their initial findings as
being negative,

and that before the issue of XMRV is fully understood, that much more
research has to be done, that the WPI is continuing to do research on
XMRV, and so are many other laboratories, in an attempt to understand
what is the relationship of XMRV to Chronic Fatigue Syndrome, and now,
if the results presented at this particular conference are to be
believed, the relationship of XMRV to a lot of cells in culture, and
possibly even to a lot of vaccines that are currently being used
throughout the United States and throughout the world.

The situation is far from resolved.  It begs to be resolved. And
hopefully it will be resolved.

44:30 Interviewer:  So what I describe as ambivalence, is described by
people like Judy Mikovits as a need to resolve unresolved implications
that the research has uncovered. (Kenneth:  Correct.)So ambivalence
would not describe the researchers attitude at all.

Kenneth:  No, I don't think there is ambivalence.  It depends upon how
you wish to view Judy's data.  If you look at it one way, it pertains
to Chronic Fatigue Syndrome, if you look at it another way it has
consequences throughout the world and throughout laboratories who do
tissue cultures throughout the world.

And there was one report there that XMRV is a contaminant that has
contaminated commercial products that are used in tissue culture.  And
if that's the case, if that proves to be the case, then the
implication is of tremendous impact and of tremendous consequence to
tissue culture and all the research that is done using tissue culture,
and if that is the case then Judy Mikovits needs to be applauded for
what she has done in terms of uncovering this contamination, which is
far beyond anyone's initial expectation.

45:50 Interviewer:   OK, so the relationship of XMRV to chronic
fatigue is still unestablished

Kenneth:   The relationship to Chronic Fatigue Syndrome is still
unestablished, and the initial - I would go as far as to say the
initial hypothesis has been called into question, but it remains
unresolved

Interviewer:  What would you like to summarise your experience at the
conference with before we close?

Kenneth:  I think it was a great conference.  I think that the world
is paying more attention to Chronic Fatigue Syndrome.  I think that
Chronic Fatigue Syndrome as demonstrated at this conference is there
is a huge amount of very promising data.  There was a summary of the
conference provided by Tony Komaroff, which is a name for people that
have been following Chronic Fatigue Syndrome research will be familiar
with.

He's a well respected Chronic Fatigue Syndrome researcher and
commentator, and he provided the overall summary, and at the end of it
he was asked "Which of these projects do you think deserves the most
attention" and his statement in response was that they all do.  They
are all exceedingly promising results and I agree with that.

The only thing I would add is that these are all exceedingly promising
results done on relatively few patients with relatively or
comparatively relative small budgets and that there needs to be an
infusion of much more money into these studies, now that their promise
has been shown.  I think that as we have now all learned, based on the
jumping in of these few new benefactors to Chronic Fatigue Syndrome is
that we cannot rely solely on federal governments to support Chronic
Fatigue Syndrome.

That we need benefactors but benefactors are few and far between, and
so I believe that the patient population, or patient populations
throughout the world really do need to get more involved and support
these kinds of research.  And now with the advent of what is termed
social media, people are getting on social media and saying "tomorrow
is my xx birthday, and instead of sending me gifts because I am a
patient, send money to this or that research institute or send money
to this organisation to fund clinical care services.

And that I think is the only way that we will be able to achieve the
magnitude of funding that we will need to be able to make Chronic
Fatigue Syndrome understood in terms of pathophysiology, to make it
treatable, with definitive treatments in a time frame that will
benefit the patients who have it now

49:25 Interviewer:    I appreciate that point of view, it's quite
compelling.  Perhaps, only perhaps because I'm not personally
acquainted, I understand the attitude with our federal government is
that we are not going to be able to meet our need for skilled workers
in the near future by immigration alone, that we need to expand the
number of people who work past retirement, and that in that light they
might be willing to look at something like chronic fatigue as limiting
a great number of the population who could contribute to the workforce
and the tax base in the future

Kenneth:  Well it would be wonderful if any federal government would
be willing to put more money into Chronic Fatigue Syndrome.  I think
that in most countries it's the patients who have to advocate for
greater federal funding.  Not only do we need to keep older
researchers working in Chronic Fatigue Syndrome but we need to somehow
stimulate new researchers into the field of Chronic Fatigue Syndrome
which raises the whole issue of how do you do that?

Unfortunately Chronic Fatigue Syndrome because it is an underfunded
area of research, most young researchers when looking for a career in
research, are not going to go there, they are going to go to the
better funded areas because that is where they see that they can earn
a living.  I think that we need to address the concern that Chronic
Fatigue Syndrome is a viable area of research by demonstrating that
there is funding for it and consistent funding for it.  In the United
States several years ago we had five centers of excellence, and then
precipitously the government said "We're not doing this any more".

51:22 Interviewer:    And they were centers for research, for
promoting research?

Kenneth  These were centers for research, for research and clinical
care, spread throughout the United States, and the federal government,
the National Institute of Health who funded it, decided they were not
going to do it anymore, and so the centers closed.  The people who did
the research in the centers, who were senior researchers, junior
researchers laboratory research associates and technicians, were then
without funds, were without salary, so what were they to do?  They
were forced to go into other areas, and I suspect that if one ever did
this study they were loath to coming back

Interviewer:   Well I understand we established a new center in BC in
British Colombia in Canada for chronic fatigue, but I don't know..

Kenneth: Yes, and when it was done, I clipped the announcement of it
that I received, and I sent it to the Center for Disease Control and I
said "If British Colombia can do this, why can't we?" (int: yes
exactly, exactly)  so I applaud the province of British Colombia, and
I hope that other provinces can do the same.  And I hope that the
Canadian experience will embarrass governments in other countries to do the same

Interviewer:   I hope you're right!  I appreciate all the time you've
spent with me, it's been a very thorough interview.

Kenneth:  Well I hope that I have been able to both illuminate, and
also to provide hope and to provide inspiration and to provoke
enthusiasm of the Chronic Fatigue Syndrome community that you serve,
in Chronic Fatigue Syndrome research and patient care, and to please
not give up on us - the educators, the researchers, the clinicians
because we really are trying our best to meet the needs and advance
the field of Chronic Fatigue Syndrome.

Interviewer:  And again, I thank you for your time.

Kenneth:   You're quite welcome.

Permission to repost both parts granted.

This season I will suffer from....

Note: Comments are not enabled for this article, however the paper can
be contacted here:
http://www.dutchnews.nl/contact/



This season I will suffer from...electrosensitivity -

09-10-2011

According to gynaecologist Cees Renckens who is stepping down as
chairman of the association against quackery, less people are
suffering from 'fashionable illnesses'. But he remains vigilant.
'So-called illnesses, such as chronic fatigue syndrome, are difficult
to eradicate and new ones are cropping up all the time', he says in an
interview in Trouw.

Chronic Lyme

Chronic whiplash and RSI are on the wane and so are most of the trendy
aches and pains that figured in Cees Renckens' 2004 thesis. It listed
pelvis instability, post natal depression, fibromyalgia and
premenstrual syndrome. 'We now see a lot of people with chronic Lyme
disease', he says. 'It's a label used by the alternative medicine
circuit to put on people who are inexplicably tired. 'You have chronic
Lyme', some quack tells them. Recognition at last, thinks the patient
who is then put on a weekly dose of antibiotics which won't do any
good and is expensive.'

Electrosensitivity

Another newcomer, according to Renckens, is 'electrosensitivity
syndrome'. Victims claim that radiation from wireless electronic
equipment and mobiles causes a range of health problems, from poor
concentration to sweats and fatigue. But tests have shown that the
complaints persist even when the electronic equipment is turned off.

'It's tragic really', says Renckens. 'People do genuinely suffer and
they can get very angry if you take their diagnosis away. Some critics
have even received death threats.'

Official quack

Fashionable illnesses are not difficult to recognise. They appear
suddenly and are limited to certain countries or areas. Sufferers are
mostly young women who have symptoms that are difficult to quantify,
like fatigue or listlessness. Doctors usually can't find anything
physically wrong with them. Once it becomes clear to doctors what they
are dealing with, the influx of patients usually comes to a halt.
'People don't like to be laughed at', Renckens says.

Renckens remembers one memorable case which nearly finished off the
association. The court ruled that calling orthomanual therapist Maria
Sickesz a quack was inadmissible. In 2009 the high court overturned
the verdict. Since then Sickesz, who claimed she could cure autism,
schizophrenia and a whole raft of other illnesses by manipulating
people's vertebras, can be officially called a quack.

http://www.dutchnews.nl/features/2011/10/this_season_i_will_suffer_from.php

Healthcare spending versus results

 

"Health care is far larger, with the United States spending at least 50 percent more per person on medical care than any other country, without getting vastly better results. (Some aspects of our care, like certain cancer treatments, are better, while others, like medical error rates, are worse.) The contrast suggests that a significant portion of medical spending is wasted, be it on approaches that do not make people healthier or on insurance-company bureaucracy."

Ancient gene found to control potent antibody response to retroviruses

 

HIV: Ancient Gene Found to Control Potent Antibody Response to Retroviruses

ScienceDaily (Oct. 6, 2011) — A researcher at MIT's Koch Institute for Integrative Cancer research has identified a gene that controls the process by which antibodies gain their ability to combat retroviruses. Edward Browne shows that the gene TLR7 allows the antibody generating B cells to detect the presence of a retrovirus and promotes a process by which antibodies gain strength and potency, called a germinal center reaction. The findings are published in the Open Access journal PLoS Pathogens on October 6th.

TLR7 is a member of an ancient family of genes whose distant ancestors can also be found as far back as insects and worms, but these results show that the immune system has co-opted these genes for a new purpose -- the generation of antibodies.

Antibodies are a key feature of our ability to fight off disease causing viruses, but for some viruses such as HIV, this response goes horribly wrong. People infected with HIV generate large amounts of apparently useless antibodies that lack to power to hurt the virus. Why this happens during HIV infection, and how to fix the problem is one of the biggest challenges facing researchers in the HIV field.

During the germinal center reaction, antibodies become mutated and undergo selection to allow the strongest antibodies to dominate. Dr. Browne notes that "these results identify TLR7 as an important gene that could be targeted to improve antibody responses in HIV patients. It's possible that in HIV patients this process could be enhanced or accelerated to speed up the formation of high affinity broadly neutralizing antibodies."

New targets for treating inflammatory, autoimmune diseases discovered

 

New Targets for Treating Inflammatory, Autoimmune Diseases Discovered

ScienceDaily (Oct. 8, 2011) Researchers have discovered a cellular pathway that promotes inflammation in diseases like asthma, rheumatoid arthritis, psoriasis, inflammatory bowel disease, and multiple sclerosis. Understanding the details of this pathway may provide opportunities for tailored treatments of inflammatory and autoimmune diseases.

Discovery of this pathway was the work of an active collaboration between Xiaoxia Li, Ph.D., and Thomas Hamilton, Ph.D., Department Chair, both of the Department of Immunology at Lerner Research Institute of Cleveland Clinic.

Their publications in Nature Immunology, selected for a News and Views article in the same issue, portray how a protein molecule known as interleukin-17 (IL-17) spurs inflammation by recruiting specific white blood cells to sites of infection and injury, producing a strong, pathogenic response.

Being able to block this pathway may treat IL-17-induced inflammatory diseases. Molecular factors discovered by Li and Hamilton make this concept a potential strategy.

"We are excited by the possibilities that this new research opens up for developing improved therapeutics for these difficult diseases," Hamilton said.

"Being able to collaborate like this really expedites the science," Li added, "ultimately leading, we hope, to profound improvement for those suffering from these autoimmune and inflammatory conditions."

Bloggerama Day -- Two Years and Counting

Two years ago today, the Lombardi study, "Detection of infectious retrovirus, XMRV, in the blood cells of CFS patients" was published in Science.
 
Where has it gotten us?
 
A lot of squabbling over whether XMRV exists – but only as relates to CFS; I haven't heard of a single study discrediting its existence in prostate cancer patients.  Why is that?  Because they're men and have that scary disease called cancer, but we women can only have an imaginary illness caused by inability to handle a little stress?
 
As of February, I will have been sick for a quarter-century and unable to work full-time for 12 years.  That means I've lost somewhere upwards of a half-million dollars of income, which means the government has lost six figures of taxes that would've been paid on that income. 
 
If they want to balance the budget, the best way to do it would be to do the research that would get us back to work.  Lenny Jason estimates the cost to the US economy at $26B – billion with a B – per year.  Extremely rough figures, that's $6B in lost tax revenue each year.  In a really good year, we used to get $6M in research funding ... that's 1/1000th of the taxes we're too sick to pay.  Why not give us research funding of a mere 1% of the annual taxes we could be paying – that's $60M – and find something that gets us back to work?
 
Or bootstrap every patient to a year of Ampligen to see how many of us improve enough to get back to work and start paying for our own?  Oh, no, wait, that's right ... Ampligen isn't FDA approved, because the FDA can't approve an anti-viral treatment for something that CDC says is purely psychiatric.  The two government agencies can't contradict each other in that way.
 
I hope that eventually our disease will be taken seriously, but that hope is always tempered with the reality that the various treatments that have shown promise have worked for those who've been sick 5 years or less.  Ten years ago, I could delude myself that because of the 12-year remission before I became disabled, I might still slide in under that limit because I was less than 5 years into the disabling relapse, but no longer.  I now have to face the fact that any treatment they come up with will probably be too late to help me; I'm now fighting for the health of the next generation of patients.
 
I am doing remarkably well for a long-time patient, but, nonetheless, I am an old-timer, and have to acknowledge that there are nascent health problems that worry me because I know what they lead to.  Most of my friends in the CFS community are now past the average life expectancy of 58 and living on borrowed time.  I'm sneaking up on that number myself. 
 
As I write this, the word is spreading that one of our younger patients, Amberlin Wu, has passed, far short of that average 58 years.  Why me?  Not only "why me?" in the sense of why did I get this incurable disease which gets no respect and almost no research funding, but also "why me?" in the sense of why are younger patients succumbing while I'm still here and holding my own?  Did they perhaps get an even more virulent strain than my generation had?  If so, will there be anyone for me to pass the torch to when my time comes?
 
Meanwhile, I keep doing my part-time paying work, and writing activism/educational information when I can't maintain concentration long enough to earn money with proofreading.  I spend a lot of time resting in hopes of maintaining my health as long as possible, and try not to worry too much about the things that hint that I'm starting to lose that battle.  And that back-of-the-mind realization is spurring me on to spend more time working on the CFS book I've been writing, so that it will be ready to go before I do.
 
What do we have to do to get the respect, attention, research, treatment and cure that we deserve?