Friday, December 10, 2010

WPI End of Year Letter

 
Tell your family and friends what you most want for Christmas is a cure.

Stripped-Down Health Plans Must Disclose Limitations To Consumers :

 
It will be interesting to see whether I get such a letter from my insurance company, reflecting the ACTUAL terms of the policy, as opposed to the nominal PPO-1000 coverage indicated by the card.  They've stripped it down so that it covers hospitalization only, with a huge deductible, which does not meet the criteria of the new law, as opposed to the adequate coverage provided by the PPO-1000.

Maes & Twisk vs. Harvey & Wessely

Blessing's & thank u all, for ALL u do.
marie moore

pubmed

BMC Med. <javascript:AL_get(this, 'jour', 'BMC Med.');> 2010 Jun 15;8:35.
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress pathways.

Maes M <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Maes%20M%22%5BAuthor%5D>,
Twisk FN<http://www.ncbi.nlm.nih.gov/pubmed?term=%22Twisk%20FN%22%5BAuthor%5D>
.

Maes Clinics @ TRIA, Piyavate Hospital, Bangkok, Thailand. crc.mh@telenet.be
Abstract

BACKGROUND: In a recently published paper, Harvey and Wessely put forward a
'biopsychosocial' explanatory model for myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS), which is proposed to be applicable to (chronic)
fatigue even when apparent medical causes are present.

METHODS: Here, we review the model proposed by Harvey and Wessely, which is
the rationale for behaviourally oriented interventions, such as cognitive
behaviour therapy (CBT) and graded exercise therapy (GET), and compare this
model with a biological model, in which inflammatory, immune, oxidative and
nitrosative (IO&NS) pathways are key elements.

DISCUSSION: Although human and animal studies have established that the
pathophysiology of ME/CFS includes IO&NS pathways, these abnormalities are
not included in the model proposed by Harvey and Wessely. Activation of
IO&NS pathways is known to induce fatigue and somatic (F&S) symptoms and can
be induced or maintained by viral and bacterial infections, physical and
psychosocial stressors, or organic disorders such as (auto)immune disorders.
Studies have shown that ME/CFS and major depression are both clinical
manifestations of shared IO&NS pathways, and that both disorders can be
discriminated by specific symptoms and unshared or differentiating pathways.
Interventions with CBT/GET are potentially harmful for many patients with
ME/CFS, since the underlying pathophysiological abnormalities may be
intensified by physical stressors.

CONCLUSIONS: In contrast to Harvey and Wessely's (bio)psychosocial model for
ME/CFS a bio(psychosocial) model based upon IO&NS abnormalities is likely
more appropriate to this complex disorder. In clinical practice, we suggest
physicians should also explore the IO&NS pathophysiology by applying
laboratory tests that examine the pathways involved.

PMID: 20550693 [PubMed - indexed for MEDLINE]PMCID: PMC2901228Free PMC
Article

Images from this publication.See all images
(3)<http://www.ncbi.nlm.nih.gov/images?term=20550693[PMID]>Free
text<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
  <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/figure/F1/>
Figure 1
*The (bio)psychosocial model for 'chronic fatigue' of Harvey and Wessely*.
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress
pathways<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
BMC Med. 2010;8:35-35.
<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/figure/F2/>
Figure 2
*The (bio)psychosocial model for myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS) of Vercoulen et al.* Fatigue: the subjective feeling of
fatigue; fatigue subscale of the Checklist Individual Strength. Focusing on
(Bodily) Symptoms: somatisation subscale of the Symptom Checklist. (Level
of) Physical Activity: Sickness Impact Profile (SIP) subscale mobility
(SIP-MOB) and the Physical Activities Ratin...
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress
pathways<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
BMC Med. 2010;8:35-35.
<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/figure/F3/>
Figure 3
*The inflammatory and oxidative and nitrosative (IO&NS) pathophysiology of
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)*. COX-2 =
cyclo-oxygenase 2; iNOS = inducible nitric oxide synthase; PUFA =
polyunsaturated fatty acids; NFκB = nuclear factor κB.
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress
pathways<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
BMC Med. 2010;8:35-35.
   Publication Types, MeSH Terms,
Substances<http://www.ncbi.nlm.nih.gov/pubmed/20550693#>
Publication Types:

   - Comparative Study <javascript:AL_get(this, 'ptyp', 'Comparative
   Study');>
   - Letter <javascript:AL_get(this, 'ptyp', 'Letter');>
   - Review <javascript:AL_get(this, 'ptyp', 'Review');>

MeSH Terms:

   - Fatigue Syndrome, Chronic/immunology* <javascript:AL_get(this, 'mesh',
   'Fatigue Syndrome, Chronic/immunology*');>
   - Fatigue Syndrome, Chronic/pathology* <javascript:AL_get(this, 'mesh',
   'Fatigue Syndrome, Chronic/pathology*');>
   - Free Radicals/toxicity* <javascript:AL_get(this, 'mesh', 'Free
   Radicals/toxicity*');>
   - Humans <javascript:AL_get(this, 'mesh', 'Humans');>
   - Inflammation/pathology* <javascript:AL_get(this, 'mesh',
   'Inflammation/pathology*');>
   - Stress, Physiological* <javascript:AL_get(this, 'mesh', 'Stress,
   Physiological*');>

Substances:

   - Free Radicals <javascript:AL_get(this, 'subs', 'Free Radicals');>

LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/20550693#>
Full Text Sources:

   - BioMed Central <http://www.biomedcentral.com/1741-7015/8/35>
   - PubMed Central<http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20550693/?tool=pubmed>
   - PubMed Central
Canada<http://pubmedcentralcanada.ca/articlerender.cgi?tool=pubmed&pubmedid=20550693>
   - UK PubMed Central <http://ukpmc.ac.uk/abstract/MED/20550693>

Medical:

   - Chronic Fatigue Syndrome - MedlinePlus Health
Information<http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html>

Thursday, December 9, 2010

Why myalgic encephalomyelitis/chronic fatigue synd... [Neuro Endocr

 
"Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder."
 
* * *
I have NO intention of dying any time soon.  I want to live to dance on Reeves' and Wessely's graves!

Hemispherx Biopharma Extends GP Pharm License to Mexico for Ampligen

Yvette Cooper and ME/CFS Misquote

 
"The correct statistic is that 90% of recoveries occur in the first year, not 90% of people recover"
 
* * *
In the first year (1987-1988), I did manage to recover enough to return to work full-time for 12 years.  When I lost my job in 2000, it was straight downhill, because what little was being done by doctors was all wrong -- they were treating me for conditions I don't have, with drugs known to be ineffective against CFS.
 
However, turning that quote around, 10% of recoveries happen after the first year.  While I'm certainly not recovered enough to return to a full-time job, proper treatment has finally broken the endless loop of pain causing insomnia, lack of sleep causing more pain, causing more insomnia and I am back on an upward trajectory.

Monday, December 6, 2010

THIS IS WHAT PATIENT ADVOCACY LOOKS LIKE - OSLERSWEB.COM

Dr. Judy in Santa Rosa CA January 17, 2011

http://www.facebook.com/event.php?eid=116039965127864&ref=mf

Dr. Judy Mikovits to speak in Santa Rosa, CA

Time
Monday, January 17, 2011 · 2:00pm - 5:00pm

Location
The Friedman Event Center
4676 Mayette Avenue

More Info
Gordon Medical Associates is proud to host: Dr. Judy Mikovits PhD

The XMRV Retrovirus and Human MLV-related Viruses

The latest updates on testing, treatments, and research into its
relationship to chronic neuroimmune disease, including Chronic Fatigue
Syndrome, Multiple Sclerosis, chronic Lyme disease, and cancer.

Survey finds gap in doctor-patient communication - USATODAY.com

 
 
"Only 48% of patients said they were always involved in decisions about their treatment"
 
"Emphasis on better communication has increased in recent years as the medical community has become more aware of its effect on patient healing. Since 1995, U.S. medical students have been required to get training in communication skills. And in 2005, the United States Medical Licensing Exam began to include testing on interpersonal and communication skills.

Communication skills and high patient-satisfaction scores can give hospitals a competitive edge as well as reduce malpractice claims, says Debra Roter, a professor at Johns Hopkins University in Baltimore."

* * *
With most doctors, my involvement in decisions about treatment was limited to "take it or leave it".
 
I had an argument with a doctor about something he wanted to prescribe which I'd been told never to take due to an adverse reaction to a related drug.  (Two days later, another doctor inquired "are they trying to kill you?" and concurred that I should never take anything in that family.)
 
Yet, despite the fact that it might be fatal, the doctor kept insisting "it'll be fine" and refused to change the prescription, even after I made it clear that I was not going to fill the prescription.  From his arrogant viewpoint, he won the argument because he was able to leave the room before I could make him do what I wanted.  However, he lost the patient because it was obvious that his ego was more important than my health.
 
 
 
 

The ad

 
if you haven't gotten a copy of the Washington Post today, this is what we're talking about.
 
TEXT:
New HIV-like Virus in the Blood Supply
Up to 20 Million Could Be Infected
 
FDA and NIH research recently uncovered a new family of retroviruses in 7% of healthy blood donor samples.*  This could mean that 20 million Americans are already infected.  These viruses were also detected in an astonishing 87% of Chronic Fatigue Syndrome patient samples.
 
Similar to HIV, this infection is likely to be transmitted through blood.**
 
Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS, is a serious and sometimes fatal neuroimmune disease that can be as disabling as chemotherapy or late-stage AIDS.  ME/CFS afflicts more than 1 million Americans. 
 
Will you or your child be next?
 
Stop the Suffering
We need More ME/CFS Research Now
 
 *footnote to research
**footnote to quote from Dr. Jerry Holmberg of DHHS
 

Three briefs from News On One Click

 7.  Autism & ME/CFS - A Modern Day Munchausen Syndrome By Proxy Scandal

Lisa Blakemore Brown, Psychologist
For whatever reason – and I can think of quite a few – vast numbers of professionals in legal, health and educational circles misconstrue symptoms of Autism, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and related disorders as child abuse and parents, usually mothers, are accused of Munchausen Syndrome by Proxy (MSBP/FII). I first came across this problem in 1995 and was so concerned that the entire system could be duped by this approach that I began to write about it in 1997 after a mother lost all four of her children, two of whom were ASD/ADHD. Over time I also saw an emerging pattern in MSBP cases – many children changed after  reacting to vaccines. In a recent news item on FOX in the United States, a case was reported in which the parents of a child with a mitochondrial disorder were accused of MSBP as they attended hospital very frequently with their ill daughter and the hospitals could not detect the mitochond rial condition. Now this is an interesting case because mitochondrial disorders are suspected as being at the root of many cases of ME/CFS and indeed Autism and recently the family of a young autistic, vaccine damaged child with a mitochondrial disorder, Hannah Poling, won considerable damages for the harm done to their child. To demonise parents of ill children whose conditions are iatrogenic by accusing them of MSBP adds insult to injury, is grossly immoral and unethical, destroys families and prevents recognition of children's real problems thereby preventing them getting the help they need, possibly forever.  Could we get it any more wrong?
Lisa Blakemore Brown, Psychologist
Related Links:
*
Parents Of Mitochondrial Disease Child Accused Of Munchausen Syndrome By Proxy
Kathryn Malone, My Fox9
*
Hannah Poling Autism-Vaccine Case: Implications for ME/CFS-Labelled patients
Lara, Health Advocate

 8.  
Red Cross Bars Chronic Fatigue Syndrome (ME/CFS) Patients From Donating Blood

The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease. The virus is known as xenotropic murine leukemia virus-related virus or XMRV. The National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop the disease, it said. Another task force that reviews blood safety for an organization known as the AABB recommended in June that blood collecting organization "actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome ... or myalgic encephalomyelitis (ME), from donating blood or blood components."  The statement said: "The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS." The recommendation came after new research strengthened the possible connection between the virus and the syndrome.
Rob Stein, The Washington Post  

 9.  
RiME Questions ME/CFS Apostate Countess Of Mar

ME/CFS patients stick it to big hat, no cattle Countess of Mar
(Caption & Pic Courtesy Of One Click)

The Committee on Standards in Public Life lays out seven principles. These include, objectivity, honesty and accountability. Did the Countess of Mar not condemn the CMO Report saying the terminology was ambiguous and confusing and that it denied the true nature of ME? Did you not argue for a strict adherence to G93.3 Code and criticise the use of GET, CBT? You signed up to the APPG Inquiry Report March 2010, yes? You realise that the 13 CNCCs and satellites set up from 2002 were based on the recommendations of the CMO Report which you criticised 16/4/02. Because the clinics were based on that report, many are saying that they are not about ME eg the clinics in Kent exclude people with neurological illness putting them outside the ICD 10 G93.3 classification; didn't you argue for a strict adherence to it 22/1/04? Does this mean that you are no longer trying to represent patients who have the illness described by G93.3 (and Canadian criteria) but patients who would fit wide definitions of CFS? Why the turnaround? Would you care to explain?
Paul Davis, RiME, Campaigning for research into Myalgic Encephalomyelitis
 

"Sick and Tired of Chronic Fatigue Syndrome"

Received from TomK:
 
[I was asked to post this by somebody who wishes to remain anonymous]

Here is an article from the Mountain View Voice in California about someone
with severe ME/CFS. Mountain View is Google's international headquarter and
a part of Silicon Valley.
 
http://www.mv-voice.com/news/show_story.php?id=3673#add_comments  
or http://bit.ly/f1foir  
 
A lively discussion has followed. More comments are welcome.
 
* * *
It's always important for those who are able to write letters to the editor and comments to educate people to what lurks behind the silly name.
 
Remember, the purpose is to educate, not to argue.  As Sgt. Friday says "just the facts, ma'am."
 
 

Wow!

Although I recognize all those articles as being almost verbatim recitations of the press release, just the fact that it's being published in so many different places, reputable websites, with varied audiences, gets the word out that we are now a force to be reckoned with, and, more importantly, that CFS is a virus, not a laughing matter.  By the end of today, more people than ever will know about it.
 
Now let's swamp the Washington Post and Miami Herald with letters to the editor thanking them for having the guts to run the ad (in the case of the Post) or article (in the case of the Herald)!
 
 
 
Actually, every website where you see the story should rate a thank you note.
 
For the letters to the editor, keep it short, about 200 words.
 
I have stuff to do today, so I'd appreciate the rest of you carrying the ball on this one.
 
 
One week free trial of the Post:
 
Just the ad:

Chronic Fatigue Syndrome Patients Run First-ever Ad in Wash Post

 

Sunday, December 5, 2010

Hillary asks Why?

How did the Soviet Union discredit its dissidents? It called them mentally ill.
 
 
* * *
And this is exactly what CDC and the Wessely School have done to us -- they've discredited patients by announcing that we're mentally ill and therefore not to be believed.
 
Yet, ironically, when a mentally-ill person appears in front of a Disability judge with no objective evidence but his own testimony that he's "depressed and suicidal", benefits are granted on the spot -- they BELIEVE him.  It's those of us who have abnormal blood test results, friends who testify to our physical inabilities, who are not believed, and made to wait a decade or more for benefits.
 
WHY????
 
Hillary's speech at the above link answers a lot of those questions.
 
Meanwhile, remember:
First they ignore you, then they insult you, THEN YOU WIN!
 
They've been insulting us for 25 years.  Thanks to the Whittemores and Dr. Judy, we're about to win.  The ball is on the five-yard line.  We're (finally) that close. 

Is “CFS” the agency’s new Tuskegee?

Hillary Johnson asks:
Is "CFS" the agency's new Tuskegee? I believe that unless we are vigilant history will see it that way. We are observing the natural history of a catastrophic disease in real time. We've been writing live history here, and we can't sit around passively waiting to see how it turns out. The career quacks at the CDC have all the time and money and PR support in the world. Patients have none of those things. But patients are not entirely without resources. For one thing, we can look to the Whittemore Peterson Instititute, which thus far demonstrates no proclivity whatsoever to buy shares in the CFS industry.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

 
 Be sure to pick up your copy tomorrow (Monday)

NY presentation on March 29, 2011

Source: New York Academy of Sciences
Date:   November 30, 2010
URL:    
http://www.nyas.org/Events/Detail.aspx?cid=0918b8d8-9a46-4334-b194-23ade9c2a7aa
         http://wpinstitute.org/news/docs/BloodPathogens.pdf


Pathogens in the Blood Supply
-----------------------------

Tuesday, March 29, 2011 - 1:00 PM - 5:00 PM
The New York Academy of Sciences

Presented by the Emerging Infectious Diseases &
Microbiology Discussion Group

According to the American Blood Center, approximately 14
million units of blood are transfused in the United
States every year. Current screening methods routinely
test for several pathogens, including the Hepatitis B
virus, Hepatitis C virus, Human Immunodeficiency viruses,
Types 1 and 2, Human T-Lymphotropic virus Types 1 and 2
and syphilis. Recent headlines indicate that the blood
supply may contain other organisms, such as Xenotropic
Murine Leukemia Virus Related Virus (XMRV), that are not
currently being identified in these routine screens. This
symposium will diagnose the current problems, reveal
recent advances in the testing and screening of the blood
supply, and will explore future directions.


Organizers

Lorrence H. Green, PhD, Westbury Diagnostics
Jennifer S. Henry, PhD, The New York Academy of Sciences


Speakers

W. Ian Lipkin, MD, Columbia University
Judy A. Mikovits, PhD, Whittemore Peterson Institute for
  Neuro-Immune Disease
Gail Moskowitz, MD, Healthcare Consultant

Presented by the Emerging Infectious Diseases and Microbiology
Discussion Group at the New York Academy of Sciences


Registration

Member: FREE
Non-Member: $30
Non-Member
(Student/Postdoc): $15


Location

The New York Academy of Sciences
7 World Trade Center
250 Greenwich St, 40th Fl
New York, NY 10007

For additional information,
e-mail nymeetings@nyas.org or call 212.298.3725


Sponsorship Opportunities

For sponsorship opportunities, please contact Cristine Barreto
at cbarreto@nyas.org or 212.298.8652

--------
(c) 2010 New York Academy of Sciences