Saturday, February 2, 2013

Slightly Alive: The US Government and ME/CFS

 
For example, the essential problem with NIH is that they allocate less than $6 per year per patient to this disease (compared to $500 per patient per year for MS). So a meeting never passes without NIH blaming the absence of funding for our disease on the researchers – saying they don't fill out funding requests effectively, but assuring us that they'll hold seminars to fix that. The statement is not only insulting, it's not really true, because most "CFS" researchers have had no trouble getting funding for something other than CFS. They suddenly become all thumbs when it comes to our disease? Sounds like the fault lies within NIH, not the researchers.

But there's no one to say that.

... We need the right to ask questions ourselves of the agency representatives in public. We need the right to be able to point out discrepancies. We need the right to get ANSWERS.

And the questioning can start with why the government ignores all the existing evidence into pathogens, biomarkers, and objectively defined abnormalities, substituting instead popular psychiatry.

* * *

I am not one who generally agrees with conspiracy theories, but where CFS is concerned, I find it plausible that the reason the government isn't actively looking into the cause is because they know the cause is a bioweapon experiment gone wrong.  If they proved we're really sick, they'd have to pay reparations.

 

 

 

 

Robert Miller Hunger Strike

Llewellyn King, who hosts the mecfsalert
YouTube Channel, commented on CFS sufferer Robert Miller's hunger
strike on his weekly PBS television program, "White House Chronicle." Mr.
King opens the program with his commentary on Mr. Miller.

This "White House Chronicle" episode will air beginning this weekend on PBS
stations in Washington --Sunday, Feb. 3 at 9 a.m. on WETA, Channel 26;
Sunday at 11:30 a.m. and 6:30 p.m. on WHUT, Channel 32. It will air
throughout the week on some 200 PBS and public, educational and
governmental cable TV stations and worldwide on Voice of America Television.

An audio version of the episode will air Saturday, Feb. 2 at 9:30 a.m.,
3:30 p.m. and 9:30 p.m. on Sirius XM Radio's POTUS (Politics of the United
States) Channel 124.

The episode will be posted on the "White House Chronicle" Web site,
whchronicle.com, on Monday, Feb. 4.

Friday, February 1, 2013

Dr. De Meirleir lecture at WPI -- summary

Dr. Kenneth De Meirleir recently spoke at the WPI. Below is a portion of
the WPI summary of his lecture from the Wings of Hope blogspot:

Dr. De Meirleir's talk included years of significant research which is very
technical and complicated. Therefore, this review is not meant to be a
summary of the underlying science but rather a summary of the practical
application of this work. However, we will place a recording of this talk
on the WPI website: www.wpinstitute.org, as soon as possible for those who
are interested in the actual research data.

Dr. De Meirleir uses a number of diagnostic tests to diagnose his patients'
underlying biological abnormalities and to guide his successful treatment
protocols. Biomarkers include abnormally low NK cell number and function,
cytokines indicating a shift in the balance of Th1 and Th2 immune
responses, up regulation of Th17 immune cells, and abnormal levels of
nagalase and elastase activity.

He also tests for various active infectious agents including Borrelia,
Bartonella, Brucella, mycoplasma, parasites, and various herpes viruses. He
stated that environmental and genetic factors contribute to aberrant
protein conformation in some patients. Other diagnostic tests include
fecal analysis and tests for levels of LPS or soluble CD14 as an indicator
of gut inflammation.

Basic to Dr. De Meirleir's treatment protocol is a plan that addresses
specific dietary restrictions. He reported that many patients are fructose,
lactose, casein and/or gluten intolerant. His patients often begin feeling
better after eating a diet free of these substances, as they are most
likely to cause an inflammatory response.

In addition, he includes a fecal microbial analysis to determine whether or
not to begin treatment with pulsed antibiotics. Based on the fecal
analysis, which indicates whether or not his patients are suffering from a
compromised intestinal barrier, he also prescribes specific probiotics,
prebiotics such as lactoferrin, and digestive enzymes. When viruses or
other pathogens become chronic Dr. De Meirleir prescribes antiviral
therapies and/or additional antibiotic treatments.

It is generally accepted knowledge that ME patients have difficulty
controlling various herpes viruses and other pathogens, in addition to
exhibiting abnormal natural killer cell function. Subsequent searches for
immune modulating drugs have included trials of several different products.
Gc-MAF is a macrophage stimulating substance that has recently shown great
promise. Dr. De Meirleir highly recommends that patients address any leaky
gut issues before beginning treatment with Gc-MAF. He also mentioned risks
that can be associated with this type of treatment. Risks include a shift
to autoimmunity and an immune reconstitution reaction known as IRIS
although none of his patients have developed autoimmune disease as a
result of Gc-MAF treatments and less than 20% have experienced IRIS.

Dr. De Meirleir routinely monitors his patients for IRIS cytokines after
starting them on very low doses of Gc-MAF, as a method of prevention. Other
immune supportive therapies include the use of Kutapression/Hepapressin
complex (Nexavir), which has been reported to inhibit EBV and HHV-6, and
Isoprinosine for those with low serum uric acid levels. Finally, Rituximab,
a B-cell depletion immune therapy, has been used successfully in a small
trial of patients with ME by oncologists Fluge and Mella.

Because of the delayed therapeutic response of two to seven months, the
authors of this study remarked that there is a possibility that ME has an
autoimmune component. (Note: These two physicians are now looking for
collaborative research sites and additional funding to engage in a much
larger clinical trial due to their 67% rate of success.)

Dr. De Meirleir concluded his talk with a detailed slide describing the
various pathways that are disrupted in ME and several other autoimmune
diseases. He spoke about a continuum of autoimmune diseases including ME,
lupus, RA, type 1 diabetes, and remitting MS that involve a dysregulation
of two important immunological pathways, 2'-5'OA synthetase and Th1/Th2
immunity.

Thursday, January 31, 2013

Why All My Friends Live in the Computer - SocialTimes

 
 
 
Because the friends who live in my computer understand CFS better than the people who live next door?
 
 

Moms Who Vax: Consequences--in the language of the courts

 
 
Unfortunately, when a new parent or parent-to-be Googles "Vitamin K newborn" the first link is a video from Mercola touting the "dangers" of the Vitamin K shot. I wish the first link that came up under "Vitamin K" and "newborn" was the coroner's investigation I just read.
 
* * *
 
Any time I'm confronted by a mother who refuses to vaccinate because of her fears that vaccination leads to autism (unproven, and the quack who propounded that "research" has been discredited), I ask whether she'd prefer a living child with autism or a child dead of a preventable disease.  We've had deaths from whooping cough and new cases of polio (which were virtually eradicated in the US until this anti-vaccine movement).  Do you really think living with polio paralysis is preferable to living with autism?
 
Unfortunately, some of the same nonsense pervades the CFS community.  If you're allergic to eggs, then, no, it's not advisable to get a flu shot.  But if you have immune system deficiencies, why run the risk of getting the flu on top of everything else?  Three or four weeks of the flu is not my idea of fun.  The virus in the shot is DEAD; it cannot give you the flu.  (The up-the-nose mist spray is live virus and should not be given to anyone with compromised immunity.)
 
I get a flu shot every year.  I've also had the pneumonia shot (which is good for 10 years).  I don't need what Toni Bernhard calls "sick on sick".
 
 

Coping With Chronic Illness

 

PBS: Coping with Chronic Illness

New PBS show:
Living & Breathing: Coping With Chronic Illness
Chronicling the experiences of three women with the rare lung disease of lymphangioleiomyomatosis (LAM).
 
Like CFS, the only treatment is observation.  Eventually patients get sick enough to require a lung transplant.
 
The patients in the show speak bluntly and honestly about the limitations of living with chronic illness, how friends drift away, how strangers are rude about their limitations, how they've had to change their way of life, find new hobbies and exercises and ways of doing things....
 
All the things we want our friends and family to understand, that they won't listen to coming from us, but may listen when it's on TV.

Monday, January 28, 2013

Tweeting the Klimas Conference

Quick hits from the daylong celebration of the opening of Dr. Klimas
Institute for Neuro-Immune Medicine at Nova Southeastern University. Dr.
Hornig on autoimmune processes in ME/CFS (she's looking for them), Dr.
Broderick on striking differences between men and women with this disorder,
Dr. Peterson on treatment and yes, Dr. Klimas on exercise...it's all here
on

Quick Hits from Dr. Klimas NSU Celebration: Tweeting the Conference

http://www.cortjohnson.org/blog/2013/01/28/quicks-from-dr-klimas-nsu-chron
ic-fatigue-syndrome-clinic-opening-tweeting-the-conference/