Saturday, September 26, 2009

Hillary Johnson on Stephen Straus

 
 
"There may never have been a more paranoid scientist in the government's employ. Though he was accorded the status of national "expert" in the disease, Straus stayed away from every medical conference devoted to "cfs" throughout his entire career out of a stated fear of being attacked, verbally and even physically, by patients. Paul Cheney, who once said Straus practiced science at the "engineering level," predicted that one day people would "dance on the graves" of Straus and his ilk—the flat-earthers."
 
"for several years he presented grand rounds in American and European hospitals on the disease, providing thousands of doctors with the "official" U.S. government line on the disease: "cfs" was a psychiatric disorder of over-ambitious, under-achieving women."
 
 * * *
Which, of course, fails to explain the number of men and children with CFS, but Straus was always good at sweeping under the rug any information that didn't support his theory.
 
I will, however, say that Straus' fear of being attacked by patients was probably a valid fear.  I know what I would've done to him if I'd ever been in the same room.  Although he was touted as a leading expert in the field of CFS, he did more disservice to patients, with his ridiculous notions that we (including the men and children) were just depressed-and-menopausal, or depressed because we were menopausal, or depressed because we were someday going to be menopausal.  I was 28 when I got the virus and 29 when I was diagnosed; nowhere near menopause. 
And the only reason I'm an under-achiever is because of this Damn Disease.  I was on track to accomplish my goals when I got sick and had to cut back everything except the barest essentials required to survive.  I struggled with a full-time job because I had rent to pay, but had to eliminate clubs, church, even casual socializing because I needed all my energy to work.
 
 
 
 
 
 
 
 
 
 
 
 

Friday, September 25, 2009

GMA gets it right!

Thanks to Phoenix CFS for this:
 
Its nice to see chronic fatigue syndrome (ME/CFS) well represented on the national stage. Dr. Donnica Moore was comfortable and poised on Good Morning America as she clearly enunciated many of the major aspects of ME/CFS.  Early on she focused on post-exertional malaise - something we really need to get across. The inevitable depression question didn't come until the end and she handled it well.
She's been on  the national stage before on CNN, Tyra Banks and others. The best thing, though, is that she's  been nominated for the federal advisory panel on CFS (CFSAC) by the CFID's Association of America. Having this sharp and articulate women on the panel could only help. Having "Dr. Dannica" on the panel  should boost the panel's visibility  substantially. I sincerely hope she makes it.
http://abcnews.go.com/Video/playerIndex?id=8664151

http://aboutmecfs.org/blog/?p=895
 

Who are you?

If you're Supreme Court Justice Ruth Bader Ginsburg and complain of fatigue and feeling faint, you get taken to the hospital for observation.
If you're the average CFS patient and make the same complaints, you're told to stop complaining and go back to work.
In 2000, I could not sit up for more than 5 minutes at a time without getting dizzy and having to lie down in a dark room. Thanks to a laptop computer and touch-typing skills, I could do some writing for a friend's website while horizontal with my eyes closed. Nonetheless, my doctor refused to acknowledge my symptoms as anything other than fakery designed to avoid working. I WAS working! But that wasn't what he wanted to hear.


Thursday, September 24, 2009

Next CFSAC meeting Oct. 29-30


The next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting will be held on Thursday, October 29 and Friday, October 30, 2009, from 9:00am-5:00pm EDT.  Please link to http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf to access the Federal Register Notice.

If you would like to submit a request for public comment at the meeting or provide written testimony, please send an email to cfsac@hhs.gov.   

Due to the number of requests, public comment is limited to 5 minutes per person and appointed times for public comment will be provided on a first come-first serve basis.  Written testimony is limited to five (5) pages and must be submitted prior to close of business on Thursday, October 15, 2009.

The proceedings of the meeting will be accessible via videocast.  More information will be posted on the CFSAC website at
http://www.hhs .gov/advcomcfs/.

 
 

Wednesday, September 23, 2009

CDC to make correction!

In response to a letter and e-mail that the National CFIDS Foundation  sent
to the Centers for Disease Control and Prevention (CDC), a call was 
received from Sarah Wiley, the Associate Director of Policy at the center that 
houses the CFS program.  The posting that had our name as one of the 
organizations that provided input into the CFS 5-Year Strategic Plan will be 
removed sometime today, she said..  We also discussed that the CDC is not 
addressing Myalgic Encephalomyelitis (ME) and she understood that was "a bigger 
concern" and she hopes to address that eventually.  (The CDC stated,  in their
"Overview of CFS" that neither CFIDS or ME should be confused with ME  and
the National CFIDS Foundation is referring to ME with their name of  CFIDS. 
Currently, it has no diagnostic code in the United States making  the diagnosis of ME impossible in this country.)

For better health for all those with CFIDS/ME,

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931

http://www.NCF-NET.org 
 






Fibromyalgia Pronounced "Real Disease"


Neurologic signs common with fibromyalgia

Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)

By Michelle Rizzo

NEW YORK (Reuters Health) - Fibromyalgia isn't
all in your head, new research suggests.

In a study, researchers found that people with
fibromyalgia were more likely than those without
the chronic pain condition to have poor balance,
tingling and weakness in the arms and legs, and
other "neurologic" signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that
affects 2 to 4 percent of the population, is
characterized by chronic pain, fatigue and
difficulty sleeping. It's a somewhat mysterious
condition with no clear-cut cause. Many people
with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of
Arthritis and Rheumatism, support a growing body
of literature suggesting that the condition is
real and also support the possibility that a
"neuroanatomical" cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of
Washington Medicine Sleep Institute at
Harborview, Seattle, and colleagues studied 166
people with fibromyalgia and 66 pain-free controls.

All of them were examined by a neurologist who
was unaware of their disease status. All study
participants also completed a standard questionnaire on neurologic symptoms.

In 27 of 29 neurological categories tested,
significantly more neurologic symptoms were seen
in the fibromyalgia group than in the control
group, Watson and colleagues found.

The greatest differences were found for light
sensitivity, or "photophobia," seen in 70 percent
of fibromyalgia patients but in only 6 percent of
pain-free controls; poor balance, which plagued
63 percent of fibromyalgia patients but only 4
percent of controls; and weakness and tingling in
the arms or legs, seen in more than half of
fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater
dysfunction than controls in certain nerves in
the brain. They also had more "sensory" problems,
motor abnormalities and gait problems.

Within the fibromyalgia group, there were
significant correlations between several
neurologic signs and symptoms. For example,
numbness in any part of the body or tingling in
the arms or legs correlated with neurologic test
findings. Poor balance, poor coordination and
weakness in the arms or legs also correlated with
objective findings on neurologic tests.

These observations, Watson told Reuters Health,
underscore the need for "careful neurological
examinations in all fibromyalgia patients,
particularly those with neurological complaints."

Watson cautioned that this study does not confirm
a neuroanatomical basis for fibromyalgia and that
much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

Copyright © 2009 Reuters Limited.

Tuesday, September 22, 2009

CFS now on Dr. Oz website!

DrOz now has a "Ask Dr Oz" section on his show website
and I think some of our Tweets finally got him to check into
it "a little" as WE HAVE a Category NOW ;-) and He has
received some replies from other other Medical "experts"?

He EVEN has a quote at the TOP stating the 4 Million Number
in the USA instead of the old quoted 1 million number...

Here's the page:

http://ask.doctoroz.com/question/chronic-fatigue-syndrome

Main website:
http://www.doctoroz.com/

Ask Dr Oz section: soon to be functional to ASK....
http://ask.doctoroz.com/

If you use Twitter remember to Tweet him @DrOz

"Voices 4 a Cure Campaign"
28 million Voice WILL Be HEARD
"Stand UP 2 ME"

Please report in to let us know who all is doing what, OK?

Hope you are not flaring and are having a
"Happy Autumnal Equinox"

in gratitude,
MacAngel


Monday, September 21, 2009

More from John Herd on Medical Entrenchment

 Our Compass - Getting Out From Under The Tragedies of ME/CFS

  John Herd
  johnherd@johnherd.com

  Several hundred people have written to me about an article I wrote
  entitled "Medical Entrenchment and ME/CFS." (1)

  The article described in part my experiences with entrenched flawed
  beliefs about ME/CFS within my family.

  Readers first reactions have been to say how sorry they are for what I
  went through. Experiencing the minimalization and disbelief about the
  illness and what it causes a person to go through is something no one
  can be prepared for.

  And yet as I read the letters and have been trying to gradually write
  back to each person whom has written to me, I have wanted to explain
  why I do not feel sorry for myself. I've wanted to find the means of
  explaining that while their caring letters are deeply appreciated,
  they need not feel sorry for me. How do I explain why it is that when
  I witness flawed bias about ME/CFS and feel my inner cauldron of
  emotions getting churned up, my feelings are not for myself but for
  others?

  And so I wrote the following.

  Losing almost every remnant of my past healthy life, my family aside
  from my daughter, my home, career and incoming, my social networks and
  all the activities I loved was emotionally crushing at the time.
  Although those years now feel like a brief time, when it was happening
  they felt like an eternity, I felt as if I was lost inside an infinite
  vacuum. As difficult as surviving in that vacuum was, I had a magic
  compass to guide me out.

  That compass was built not of matter but of life experiences.

  Thirty something years of prior wonderful living had allowed me to
  build within myself an inner foundation upon which I could rebuild
  myself and my world again. I had an inner confidence and insights
  acquired from years of living life to the maximum to steer me along my
  new journey. I knew who I was even if many of the people around me had
  lost sight of the real inner John.

  So too did I have thirty something years of living a life as good as
  it gets. Though one can always yearn for more, those years were full
  of the best of love and friendships, gratifications and rewards of
  fulfilled opportunities, quenched quests of curiosities and adventure.
  My life had been 'the good life' and was racing ahead towards better
  yet when I contracted ME/CFS.

  I had been raised with a silver spoon in my mouth, and once on my own
  replaced it with a gold one, maybe not in terms of excessive economic
  wealthy, but certainly in terms of living and learning wealthy.

  The illness and the ramifications of closed minded thinking about ME/
  CFS could steal from me all my economic wealth, family and
  friendships, life as I had known it, but not that living and learning
  wealthy, not the inner John that had been tempered inside me.

  That was my compass and the foundation upon which to build a new life.
  And build a new life I did, complete with vast new insights from all I
  was seeing and learning in my new life. My advocacy activities,
  meeting so many people and hearing of their experiences, gave me new
  appreciations and perspectives on what 'quality of life' really is
  about. ME/CFS and those afflicted with it helped me recalibrate my
  ruler with which a now measure quality of life.

  Though I may not have good health, economic comfort and all that comes
  with it, nor an ability to do all the kinds of things I was able to do
  before getting ME/CFS, I do have a quality of life. It's a quality of
  life that no one and nothing, even poor health can take from me.

  This is why I can not find within myself sorrow for what I lost, nor
  anger about those whom betrayed me along the way. Although the first
  leg of my journey to rebuild my life was painful and rocked with
  betrayals, each of those people who betrayed my trust in their own
  ways propelled me towards finding the sweetness and rewards of a
  deeper richer quality of life.

  So no, I do not feel sorry for myself -- I feel sorry for all those
  who become afflicted with ME/CFS before having the opportunity to
  build such a sturdy foundation of learning and experiencing with which
  to build a new life. I feel sorry for those whom have been unable to
  taste so much sweetness of rewards, the joys of adventure, and all of
  life's mortar so essential for constructing a better life ahead. I
  feel sorry for those who are missing out on the intoxication of
  laughter and the giddiness of happiness in all its colors.

  I can't give to others some of my years of good living and good
  experiencing, though I wish with all my heart I could.

  All I can do is keep making an effort to move ME/CFS advocacy
  initiatives ahead, most notably medical research.

  Above all else, advancements in medical research are what will someday
  allow people afflicted with the ME/CFS to once again taste all the
  sweetness of full spectrum living they so dearly deserve.

  That is my future, that is their future, but we can not get there if
  each and every one of us doesn't financially support moving that
  research ahead.

  Medical research costs a lot, far more than what a small portion of us
  can afford, but research can accomplished attaining our freedom from
  the agony of ME/CFS if each and every one of us gives what we can.

  I'm not talking about our each contributing huge checks, but if each
  of us invested the equivalent one or two magazines, cappuccino drinks
  or snacks a week our contributions would get us the research
  advancements we've all been waiting for.

  This is why I ask to people, "Have you bought a piece of our future?"
  The general public is not going to do it for us, the government has
  made it clear that it can't be depended on to do it, we are going to
  have to do it for ourselves.

  This month the Whittemore-Peterson Institute (2) will be revealing
  more details about what it is doing to move our research and eventual
  treatment options ahead. Although I am not affiliated with the
  institute, I was fortunate enough to privately hear just a hint more
  of their strategy and what may be announced.

  No time during my 20 years of having ME/CFS and being involved in
  advocacy have I felt so encouraged by an organization and the
  potential of its strategies.

  I know I am going out on a limb, but I'll say I do have faith that WPI
  may be if not THE compass that will guide us out of the confines of ME/
  CFS, at least the needle pointing the way. Let's give them the
  economic fuel to do so as quickly as possible.

  -------------------------

  (1) Medical Entrenchment and ME/CFS
  http://cfsknowledgecenter.ning.com/profiles/blogs/medical-entrenchment-and-mecfs

  (2) Whittemore-Peterson Institute
  http://www.wpinstitute.org/
 


 

Sunday, September 20, 2009

NIH and ORWH want your input!

The National Institutes of Health and its Office of Research in Women's
Health are currently holding a series of conferences at which health care
providers and members of the public can offer testimony about what they
think are the key issues that biomedical scientists should be exploring. The
ideas and recommendations emerging from these conferences will help inform
future women's health research priorities at the NIH.

The format of each of the regional scientific workshops is designed to
promote an interactive discussion involving women's health advocates,
leading scientists from across the Nation, public policy experts, healthcare
providers, and the general public.  Individuals representing the full
spectrum of academic institutions, professional associations, advocacy
organizations, or healthcare facilities interested in biomedical and
behavioral research on women's health and sex/gender issues, or individuals
wishing to present their personal opinions on these issues are encouraged to
provide both written and public testimony at each of the regional meetings.
Scientific panels and concurrent workshops will address a wide range of
topics, from the interplay of research and health care, to specific areas of
research.

On October 14–16, 2009, the Office of Research on Women's Health (ORWH) is
convening a public hearing and scientific workshops to update the Women's
Health Research Agenda at the NIH for the coming decade. The meeting is
cohosted by the ORWH, Northwestern University, Feinberg School of Medicine
and Northwestern Memorial Hospital.

The ideas and recommendations emerging from this conference and other
regional conferences will help inform future women's health research
priorities
at the NIH.

Wednesday, October 14


The Public Hearing will take place at the Feinberg School of Medicine
Robert H. Lurie Medical Research Center
Room 1-129
303 E. Superior
Chicago, IL 60611

Testimony begins at 2 p.m.

Those wishing to present oral testimony are asked to submit a written form
of their testimony that is limited to a maximum of 10 pages, double spaced,
12 point font, and should include a brief description of the organization.
Please submit your testimony on this web page.

Because of time constraints for oral testimony, testifiers may not be able
to present the complete information as it is contained in their written form
submitted for inclusion in the public record for the meeting. Therefore,
testifiers are requested to summarize the major points of emphasis from the
written testimony not to exceed 7 minutes of oral testimony.

Those wishing to present written testimony are asked to submit a written
form of their testimony that is limited to a maximum of 10 pages, double
spaced, 12 point font, and should include a brief description of the
organization. Your testimony will be included in a catalog prepared for
distribution at the meeting. Please submit your testimony at
http://www.orwhmeetings.com/movingintothefuture/northwestern/testimony.aspx

Please submit your testimony on this web page by midnight October 4, 2009
(e.s.t.)

Please contact orwhmeetings@esi-dc.com m if you have any questions.
 






Methylation and CFS

Thanks to Rich for providing this!  Proving there ARE things you can do for CFS that don't require waiting for Modern Medical Science to come up with a cure.
 
This is a response I posted recently to a person on the ProHealth CFS board. It may be of interest to people on Co-Cure as well.


It's been about two and a half years since I
proposed the Glutathione Depletion--Methylation Cycle Block hypothesis
for the pathogenesis of CFS, and a simplified treatment approach based
on it. About six months ago, I presented a poster paper proposing that
Lyme disease is a route of entry into CFS for people who are
genomically predisposed to developing a partial methylation cycle
block, based on the observed depletion of glutathione by Borrelia
burgdorferi.

During the past two and a half years, I estimate
that at least several hundred, and probably now over a thousand PWCs
have tried this treatment. There are several physicians who have added
methylation cycle treatment to their protocols. Dr. Neil Nathan and I
also carried out and reported on an open-label clinical study of the
simplified treatment approach on patients in his practice in Missouri.


There have also been a large number (I don't know how many, but I have
probably personally seen a couple of hundred) methylation pathways
panels run by Vitamin Diagnostics in New Jersey and the European
Laboratory of Nutrients in the Netherlands. For people who have CFS,
nearly all have shown a partial methylation cycle block and/or
glutathione depletion, most showing both.

The treatment used
by itself seems to help about two-thirds of those who try it. When it
is combined with other treatments, it has brought what appears to be
complete recovery to at least a few people, who have been able to
return to full-time work. Some of the other treatments have been
treatments for Lyme disease, mold illness, or toxic metals overload.


Based on all of this experience, I continue to believe that this model
does describe the pathogenesis of CFS for many and perhaps most PWCs.


With regard to viruses or other pathogens, I believe that they are
responsible for the onset of CFS in some cases, especially in the
cluster or epidemic cases, such as the one at Incline Village. These
cases fit within the GD-MCB model, except that the genomic
predisposition aspect does not seem to be as important, or is not
involved at all. But the rest is likely the same, i.e. that the viral
infection depletes glutathione and brings on a partial block in the
methylation cycle. I think the explanation for this is that the virus
in the cluster cases has been particularly virulent, at least until it
mutated and became less so, ending the local epidemic.

So as
far as the pathogenesis model is concerned, I think it is correct and
that it is able to explain essentially all the features of CFS. The
model allows for a variety of routes into this pathogenesis, i.e. a
variety of etiological factors. These include the whole variety of
stressors--physical, chemical, biological and psychological/emotional.
The stressors involved in the onset of each case can be differerent
from those involved in other cases, but they all channel into causing
oxidative stress and a partial methylation cycle block.

In
most cases the oxidative stress is accompanied by a depletion of
glutathione, but in a minority of cases, there is a genetic
polymorphism in the glutathione peroxidase enzyme. In those cases,
glutathione does not drop, but the effect is the same, because it
cannot be used effectively to counter the oxidative stress without a
functional glutathione peroxidase.

There's still an issue in
the model that is unsolved, and that is how the partial methylation
cycle block interacts with glutathione synthesis to deplete
glutathione. We know that it does, in both autism and CFS, because when
the methylation cycle block is lifted, glutathione comes back up
automatically. But the details of this interaction are still undefined
from a theoretical biochemical standpoint.

Note that the issue
of whether the methylation cycle block is at the root of the
pathogenesis is a separate issue from what is the best way to treat it.
There may be, and likely are, better ways to treat it than the
simplified treatment approach. I proposed that as a simple and
relatively inexpensive, and thus accessible treatment for PWCs, and at
the same time a way to test the model for pathogenesis. I would say
that it has been successful in testing the model, and the model has
survived the test. I think we still have more to learn about treatment,
though the simplified treatment approach has made a significant
contribution, and for some PWCS, has been the last thing they needed to
get well.

I don't know if you have been following the
"demonstration project" for treating M.E. patients that is going on in
Ohio, USA, at present, which is updated on the forum called "A New Day," part
of Cort Johnson's forums. The approach to treatment being used there
involves IV nutrition, homeopathic neural therapy, acupuncture,
proliferative therapy, and laser therapy. This is quite an innovative
approach to treatment, and I can't say that I understand how it works
from a fundamental scientific viewpoint. It does, however, so far
appear to be a promising approach, and I am following the updates.?


I don't know the details of what is included in the IVs, and perhaps
there is some B12 and folate involved, which would seem to be important
for lifting the methylation cycle block. On the other hand, perhaps the
other techniques used are able to cause the body to make more effective
use of the resources of B12 and folate that it already has. In any
case, I do think there is good evidence that many or most PWCs have a
methylation cycle block, and to lift this block, the methionine
synthase activity has to be increased, which entails greater functional
use of B12 and folate. So I'm trying to understand how this treatment
intersects with that need.

You asked about treatment
timescale. This seems to vary, depending on a variety of factors. If
the simplified treatment approach is used by itself, the experience is
that improvements usually occur within a couple of months, but full
recovery hasn't happened for many people over a year later, though it
has for a few. Lately I've been studying some of the cases with slow
improvement, and I think that the lack of enough of the cofactors or
enough of the amino acids to feed the methylation cycle and associated
pathways may be the reasons for the slow progress in at least some of
the cases. B-complex vitamins, minerals including zinc, copper,
magnesium and selenium, and amino acids including methionine, serine,
and the precursors for glutathione (glycine and glutamine or glutamate)
are frequently found to be low.

Dysfunction of the gut seems
to be at the basis of the low amino acids. I think that's why the IV
amino acids are an important part of the treatment in Ohio, but for
many PWCs, it may be possible to take free-form amino acids in order to
increase their absorption, even with gut dysbiosis going on.


Beyond this, there are other treatments that may need to be added,
depending on the particular case. These include attention to food
sensitivities, efforts to improve the condition and function of the
gut, support for the adrenal and thyroid axes, treatment of infections,
treatment for mold illness if present, and treatment of heavy metal
toxicity. There are various ways of approaching these issues in
treatment, and physicians differ in their methods, but I think these
are the things that can be required.

So in summary, I think
the theoretical model and the lab test are holding up well, and though
there is more to be learned in treatment, lifting the methylation cycle
block and thereby bringing up glutathione seem to be essential parts of
the treatment.

Rich Van Konynenburg, Ph.D. richvank@aol.com