Saturday, November 6, 2010

Marital Issues and CFS/Fibro

Fibromyalgia & CFS Blog
By Adrienne Dellwo, Fibromyalgia & Chronic Fatigue Guide

Easing Marital Strain With Fibromyalgia
Saturday November 6, 2010

Marriage is hard enough under normal circumstances.  When one spouse
becomes chronically ill, it can put a lot of strain on the
relationship.

New research predictably shows that husbands of women with
fibromyalgia have worse health -- both physically and mentally -- than
husbands of healthy women.

The fibro husbands reported less satisfaction with their marriages,
saying that sexual, domestic and support issues all had an impact. The
one factor researchers identified that made these men more satisfied
with their marriages was social support.

Looking at my own marriage, I can really relate to this. My husband
has been wonderful and supportive to me, but I haven't always been
able to support him. Even though I'm doing a lot better than I was a
few years ago, he still has to pick up more than his share of work
around the house. He constantly deals with frustrations related to my
illness.

While many of us feel isolated, we do have places to turn for support.
Blogs, forums, Facebook fan pages, local support groups -- they're all
out there, and they can make a huge difference in how we deal with our
illness. But what do our spouses have?

I think men have it especially hard socially when it comes to support.
They don't talk about personal issues with friends like women do.
They're often expected to carry their burdens stoically, and may be
seen as weak if they ask for help -- especially of the emotional kind.
That all combines to create a huge amount of stress.

Knowing that (in this study, anyway) support is the one factor that
improved marital satisfaction, I decided our spouses need someplace to
go. I created a Facebook page called Husbands & Wives of Fibromyalgia
& Chronic Fatigue Syndrome, and I hope you'll let your spouse or
significant other know about it, so they can start building a
community of their own. We benefit tremendously by knowing we're not
alone in this, and the people who are important to us deserve to
experience that feeling as well. You can find the page here:

http://www.facebook.com/pages/Husbands-Wives-of-Fibromyalgia-Chronic-Fatigue-Syndrome/146441578735163#!/pages/Husbands-Wives-of-Fibromyalgia-Chronic-Fatigue-Syndrome/146441578735163?v=wall

Story at: http://chronicfatigue.about.com/b/2010/11/06/easing-marital-strain-with-fibromyalgia.htm

Link to research cited: http://www.ncbi.nlm.nih.gov/pubmed/20939626

Friday, November 5, 2010

Heaven in My Foot: The Tuskegee Mentality: Condemning Antiretrovira

 
 
Researchers are obliged to gather the most objective, accurate scientific knowledge they can while doing, so far as is humanly possible, no harm: clinicians are obliged to do all the good they can for the people in their care, period.  In the clinic, only the individual patient's well-being, not the advancement of science, may be consulted.  The patient has a right to demand, and the doctor a duty to provide, any treatment that in their joint judgement may improve the patient's overall condition.  Far from being obligatory, it is forbidden for a doctor to consider the advancement of science in deciding whether to withhold any reasonable therapy from a patient who wants it.  The idea that patients must—or even may—be denied treatment in order to advance science is nothing short of a Tuskegee mentality.
 
* * *
Which is why I was so outraged that doctors repeatedly refused me sleeping pills (known to be safe) and pain pills (known to be safe) for my demonstrated sleep and pain issues, insisting I could only have anti-depressants (known to be useless for CFS).
 
I wasn't asking for anything risky, I wasn't asking for anything the CFS experts wouldn't want me to have, but they nonetheless flatly refused to give it to me for no reason other than that if the pills I wanted caused more improvement than the anti-depressants, it would prove that I knew more than they did, and they simply could not tolerate that.  Rather than be proven wrong, they'd rather make me worse.
 
Whatever happened to "first, do no harm"?
 
 

New clues found to symptom-free HIV – The Chart - CNN.com Blogs

Art Auction to benefit WPI now open

Please repost widely.

The auction has begun!  It ends Friday, Nov. 12, 2010 at approximately 2:40
PM Eastern, 10:40 Pacific.

Auction URL, including full details and photo gallery:
http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=220692765420

We'd like to thank Popular Woodworking Magazine, Popular Woodworking Books,
and F&W Media for the free publicity for the ME/CFS and neuroimmmune disease
community, as well as for Whittemore Peterson.  Couldn't have managed
without the help of editor David Thiel.  Thanks David!  (email:
David.Thiel@fwmedia.com  )
--------------------
[Original Co-Cure post from Nov. 1, 2010]:

ME/CFS patient Lois Ventura is auctioning one of her pre-M.E. wood
sculptures on eBay beginning Novemeber 5, 2010 for one week, and donating  a
portion of the proceeds to the Whittemore Peterson Institute.  For more
info, see:

[Updated URL]
http://blogs.popularwoodworking.com/editorsblog/Vernal+Equibox+Art+Auction.aspx

Note:  The Popular Woodworking newsletter has a circulation of 100,000 - a
pretty
good size of mainstream folks to teach about ME&  CFS.  This issue and blog
entry dated Nov. 1, 2010 contains info and a link to WPI.

----------
Vernal Equibox Art Auction

Lois Keener Ventura, author of Sculpted Band Saw Boxes, is placing her
one-of-a-kind box sculpture (pictured on the cover of her book) up for a
week-long eBay auction starting November 5. As a bonus, she's including a
signed copy of the book for the auction winner, and donating a portion of
the auction proceeds to medical research.

We asked Lois what inspired this sculpture and if it had any connection to
her charitable cause choice.

"I had the vision of the Vernal Equibox in my mind's eye for years, but had
to wait to find the perfect wood. When I found the most awesome curly
worm-streaked maple, I knew right away this was it! I'd never seen anything
like it. Plus, a few years earlier, a stately walnut tree blew down on my
grandmother's property, and she offered it to me. I first made some family
heirlooms out of it, but I saved some beautiful pieces for the Equibox
concept. I couldn't think of a better way to honor the tree's life and
preserve its natural beauty than to immortalize it as part of this
sculpture. The rich dark walnut made a perfect contrast and complement to
the browns and golds of the figured maple."

This award-winning sculpture is one of the last - and the most elaborate -
of Ventura's tributes to Nature in wood.

The Vernal Equibox theme?

"Renewal," Lois explains. "The walnut base was shaped and hand carved to
symbolize the ever-turning wheel of Earth and Nature's annual cycle. The
solid yet undulating foundation of life. The walnut sapling – resurrected
from a toppled walnut tree – reaches up out of the rich brown Earth,
cradling the life-giving Sun (embodied in the maple mirror) in its branches.
The promise of light and life's response to it. The two maple box halves
depict abstract plants in phases of germination, breaking free of winter
seed coats, while the streaks drizzling down the maple represent
replenishing spring rains."

Ventura is donating a portion of the proceeds from this auction to the
Whittemore Peterson Institute for Neuro-Immune Disease (WPI). She tells us
why: "They are a light to so many reaching to break free of a very long
winter of darkness. WPI is a small independent research group doing what it
takes to make cutting-edge discoveries that set the stage for accelerated
research into neuro-immune disease on a global scale. They've renewed hope
for a vastly underserved population of more than a million severely
debilitated people of all ages in the U.S., and at least 17 million
worldwide. This is personal to me, my family, and to an entire community of
patients and dedicated researchers I've had the privilege to get to know
over the years." WPI is the first multi-faceted center of its kind to
benefit patients with ME/CFS (Myalgic Encephalomyelitis /chronic fatigue
syndrome), along with Atypical MS, Autism, GWI (Gulf War Illness),
Fibromyalgia, related cancers and more. "Vernal Equibox is a metaphor for
WPI in many ways," Lois says.

For more info about the Whittemore Peterson Institute for Neuro-Immune
Disease, see: www.wpinstitute.org

You can find Ventura's "Vernal Equibox" auction through www.ebay.com by
entering the auction title "Award Winning Abstract Wood Band Saw Box
Sculpture" in eBay's search box. (We'll post a direct link to the item when
the actual URL for the auction is generated.) The auction page will include
a photo gallery of the sculpture and a complete description of the box and
processes used in its creation.

Lois asked us to thank all Popular Woodworking and band saw box sculpture
fans for their enthusiasm for this organic woodworking style and their
support over the years. "It's fun reading about other woodworkers having so
much fun!" she says.

Thursday, November 4, 2010

What CFS *really* is.....

 
If anyone makes fun of your CFS/FM as being merely "tired", point them toward this symptom list!
 
 
 

What’s Next for X (as in XMRV)? - Health Blog - WSJ

 

A paper published yesterday in the journal Viruses outlines the steps researchers should take in designing studies into whether XMRV is linked to CFS. Everyone agrees that coming to consensus on standards for these studies is critical.

The paper was written by someone who knows what it takes to find XMRV — Ila Singh, a University of Utah scientist who last year published a paper reporting the discovery of XMRV

Wednesday, November 3, 2010

Kutapressin for CFS

An Australian blogger has collated information on research, surveys,
doctors' protocols, etc. on Nexavir (Kutapressin) for CFS at:
http://bit.ly/9Q5saA  i.e.
http://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs

Tuesday, November 2, 2010

Challenge the CDC Campaign

[Moderator's note: This is being posted for a subscriber
who wishes to remain anonymous.]


An email/phone/fax campaign has been initiated to contact the CDC
about the permanent Chief of the Chronic Viral Diseases Branch. A
decision will be made at the CDC about this position in the near
future, so please communicate your opinion as soon as possible.  This
is the suggested message:

Dr. Elizabeth Unger is not qualified to be Chief of the Chronic Viral
Diseases Branch at the CDC. At the recent Chronic Fatigue Syndrome
Advisory Committee (CFSAC) meeting she continued to defend research
done on a group of patients defined by the "empiric" (Reeves, 2005)
definition of CFS, a definition that the DHHS CFS Advisory Committee
recommended be abandoned in 2009. In addition, she has been
unresponsive to communications from ME/CFS researchers and clinicians
outside the CDC. As Acting Chief she has not demonstrated the skills
necessary to advance the CDC's mission as it relates to ME/CFS. The
CDC research program for CFS needs new ideas and new leadership. Dr.
Unger has shown that she is not up to the task. She should not be
appointed permanent Chief.

Please send the message to Stephan Monroe, who will be making the
hiring decision, Thomas Frieden, Director of the CDC, Howard Koh,
Assistant Secretary for Health (with responsibility for ME/CFS at
DHHS) and Kathleen Sebelius, Secretary of the Department of Health
and Human Services.

These are their email addresses:
stephan.monroe@cdc.hhs.gov,
kathleen.sebelius@hhs.gov

To help keep track of how many emails are sent, please also send a
copy
to:
challengeCDCcampaign@gmail.com
Also, if you have questions or comments about the campaign, please
contact
challengeCDCcampaign@gmail.com
and put Comment in the subject line.  Feel free to add any comments
or alter wording if you want to, but please keep in mind that brevity
is probably appreciated by these busy public officials.

If you prefer to phone, fax or write a letter, here is some
additional contact information:

  Stephan S. Monroe, PhD
  Director, Division of Viral and Rickettsial Diseases
  Room NCEZID
  CLFT
  Atlanta, GA  30329-4018
  tel: 404-639-2391
  fax: 404-639-3163
  email:  stephan.monroe@cdc.hhs.gov

  Thomas Frieden, MD, MPH
  Director, Centers for Disease Control and Prevention
  CLFT Building
  Room OCOO
  Atlanta, Ga 30329-4018
  tel: 404-639-7000
  fax. 404-639-7111
  email: txf2@cdc.gov

  Howard Koh, MD, MPH
  Assistant Secretary for Health, Department of Health and Human Services
  Room 7-716G
  200 Independence Ave., SW  HHH B
  Washington, DC
  tel: 202-690-7794
  email: howard.koh@hhs.gov

  Kathleen Sebelius
  Secretary, Department of Health and Human Services
  Room 120F
  Washington D.C.
  200 Independence Ave. SW
  tel:  1-877-696-6775
  email: kathleen.sebelius@hhs.gov


Thank you very much for helping to challenge the CDC to improve their
response to ME/CFS.  This is a group effort to make our voices heard.

Monday, November 1, 2010

Pat Fero's review of "Wild Snail Eating"

The Sound of a Wild Snail Eating
By Elisabeth Tova Bailey

HIGHLY RECOMMEND

By Pat Fero


The Sound of a Wild Snail Eating is the perfect book for me. The heft and
print size are exactly right. It's not too large and heavy, it is not very
long, and the print is very readable. The title causes me to ask the
questions: If the snail is wild then who hears it eating?  Is that even
possible? Why write about a snail eating anyway?


The reviews say the book is "beautiful and moving and funny and sweet and
wise and profound." Did you know that Elisabeth Tova Bailey's book has just
been named to the top ten books of 2010 in Science & Technology by the
American Library Association's Book List Editors?


Elisabeth wrote The Sound of a Wild Snail Eating for us . . . for those with
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. It is a book written
about "being" . . . about observing . . . and about escaping the confines of
illness. 


Elisabeth is bed bound, moved from her farmhouse to a studio apartment where
she has caretakers. A friend sets a small pot filled with violets dug up
from the woods beside her bed and says  "I found a snail in the woods. I
brought it back and it's right here beneath the violets." Elisabeth wonders
why she would enjoy a snail and what on earth would she do with it? She is
unable to get out of bed to return the snail outdoors. Yet, now she is
responsible for this tiny living thing. The thought overwhelms her. 


WHY?  You know the answer. People with incapacitating ME and CFS can barely
take care of themselves let alone another living creature.  We are confined
by illness and the challenges it brings are always with us.


Elisabeth writes on page 5: "When the body is rendered useless, the mind
still runs like a bloodhound along well worn trails of neurons, tracking the
echoing questions; the confused family of whys, whats, and whens, and their
impossibly distant kin how.. Sometimes my mind went blank and listless; at
other times it was flooded with storms of thought, unspeakable sadness, and
intolerable loss.


I am hooked on this book. I understand what the author is feeling and I want
to know more. What about the wild snail?


On page 6: "It was all I could do to get through each moment, and each
moment felt like an endless hour, yet days slipped silently passed. Time
unused and only endured, still vanished, as if time itself is starving, and
each day is swallowed whole, leaving no crumbs, no memory, no trace at all.


Do you feel what she means? Our sense of seconds, hours, days, weeks, months
and years change once this devastating illness has hold of us.  What about
the wild snail?


Chapter 2 is called Discovery.   Elisabeth watches the snail.  It is alive
and moving slowly. On successive mornings, she sees small square holes in
scraps of paper, postcards, and envelopes that had been propped against the
lamp on the bed table.  Thinking that the snail might need some other food,
she places withered flowers at the base of the pot. The snail moves to eat.
"The sound was of someone very small munching celery continuously.the tiny,
intimate sound of the snail's eating gave me a distinct feeling of
companionship and shared space."


Early on Elisabeth discovers that the snail can move a distance in her
bedroom before returning to the flowerpot in the morning. What if someone
stepped on its delicate brown shell? Caretakers find a glass terrarium and
landscape it with moss, leaves and bits of native plants.   Elisabeth reads
that snails like to eat mushrooms and a portabella is placed in the "little
green kingdom."


There you have it. Elisabeth cannot get out of bed, but over months she has
so many questions about the snail that she lives those questions.


Chapters weave Elisabeth's limits and lack of "functional capacity" with the
phenomenal abilities and quiet habits of a snail. Snails live in small
colonies, yet they each live very hermit-like lives.  "I knew there were
other people homebound from illness or injury, scattered here and there
throughout rural towns and cities in the world. And as I lay here, I felt a
connection to all of them. We too were a colony of hermits."


Elisabeth Tova Bailey, an observer of Gastropods, read so many books and
articles on snails, that she has become somewhat of an expert.  On another
level, Elisabeth is an expert on living with this devastating illness. It
took her four years to write The Sound of A Wild Snail Eating.


I am still thinking about Elisabeth's observations.  This is a good
read-realistic-but also inspiring. The book can help educate your family
members, your doctor, and your friends about the reality of living with ME
or CFS.
Please help spread the word, go to your bookstore, go online, or request The
Sound of a Wild Snail Eating at your local library.

Art Auction: Part of Proceeds to WPI



Permission to repost

ME/CFS patient Lois Ventura is auctioning one of her pre-M.E. wood
sculptures on eBay beginning Novemeber 5, 2010 for one week, and donating a
portion of the proceeds to the Whittemore Peterson Institute.  For more
info, see:

http://blogs.popularwoodworking.com/editorsblog/

The Popular Woodworking newsletter has a circulation of 100,000 - a pretty
good size of mainstream folks to teach about ME & CFS.  This issue and blog
entry dated Nov. 1, 2010 contains info and a link to WPI.

----------
Vernal Equibox Art Auction

Lois Keener Ventura, author of Sculpted Band Saw Boxes, is placing her
one-of-a-kind box sculpture (pictured on the cover of her book) up for a
week-long eBay auction starting November 5. As a bonus, she's including a
signed copy of the book for the auction winner, and donating a portion of
the auction proceeds to medical research.

We asked Lois what inspired this sculpture and if it had any connection to
her charitable cause choice.

"I had the vision of the Vernal Equibox in my mind's eye for years, but had
to wait to find the perfect wood. When I found the most awesome curly
worm-streaked maple, I knew right away this was it! I'd never seen anything
like it. Plus, a few years earlier, a stately walnut tree blew down on my
grandmother's property, and she offered it to me. I first made some family
heirlooms out of it, but I saved some beautiful pieces for the Equibox
concept. I couldn't think of a better way to honor the tree's life and
preserve its natural beauty than to immortalize it as part of this
sculpture. The rich dark walnut made a perfect contrast and complement to
the browns and golds of the figured maple."

This award-winning sculpture is one of the last - and the most elaborate -
of Ventura's tributes to Nature in wood.

The Vernal Equibox theme?

"Renewal," Lois explains. "The walnut base was shaped and hand carved to
symbolize the ever-turning wheel of Earth and Nature's annual cycle. The
solid yet undulating foundation of life. The walnut sapling – resurrected
from a toppled walnut tree – reaches up out of the rich brown Earth,
cradling the life-giving Sun (embodied in the maple mirror) in its branches.
The promise of light and life's response to it. The two maple box halves
depict abstract plants in phases of germination, breaking free of winter
seed coats, while the streaks drizzling down the maple represent
replenishing spring rains."

Ventura is donating a portion of the proceeds from this auction to the
Whittemore Peterson Institute for Neuro-Immune Disease (WPI). She tells us
why: "They are a light to so many reaching to break free of a very long
winter of darkness. WPI is a small independent research group doing what it
takes to make cutting-edge discoveries that set the stage for accelerated
research into neuro-immune disease on a global scale. They've renewed hope
for a vastly underserved population of more than a million severely
debilitated people of all ages in the U.S., and at least 17 million
worldwide. This is personal to me, my family, and to an entire community of
patients and dedicated researchers I've had the privilege to get to know
over the years." WPI is the first multi-faceted center of its kind to
benefit patients with ME/CFS (Myalgic Encephalomyelitis /chronic fatigue
syndrome), along with Atypical MS, Autism, GWI (Gulf War Illness),
Fibromyalgia, related cancers and more. "Vernal Equibox is a metaphor for
WPI in many ways," Lois says.

For more info about the Whittemore Peterson Institute for Neuro-Immune
Disease, see: www.wpinstitute.org

You can find Ventura's "Vernal Equibox" auction through the www.ebay.com by
entering the auction title "Award Winning Abstract Wood Band Saw Box
Sculpture" in eBay's search box. (We'll post a direct link to the item when
the actual URL for the auction is generated.) The auction page will include
a photo gallery of the sculpture and a complete description of the box and
processes used in its creation.

Lois asked us to thank all Popular Woodworking and band saw box sculpture
fans for their enthusiasm for this organic woodworking style and their
support over the years. "It's fun reading about other woodworkers having so
much fun!" she says.

"I TOLD YOU I WAS ILL"- THE TRUTH IS COMING OUT ABOUT M.E.

Woman almost dies because of mis-diagnosis

 
There are some people who claim they can "cure CFS" with a gluten-free diet.  What they are curing are misdiagnosed Celiac Disease, because the two have a lot of symptoms in common.
 
Elimination diets are worth a try -- if nothing else, because you'll find out if you have any food allergies so you can avoid making yourself worse.  But if you're really lucky, you'll turn out to have a misdiagnosed allergy and never had CFS at all.
 
 

Sunday, October 31, 2010

Norwegian TV interview

Submitted by Mary Schweitzer <marymsch@comcast.net>:


A fantastic TV interview aired on NRK1, Norway's main national
television channel, on Friday, 29 October.

The interview has been made available on You-Tube in Norwegian with English subtitles available, but I've included a translation done for us personally in English.

The reporter interviewed Anette Gilje from the movie "Get me well!"; Dr. Mette Johnsgaard from Lillestrøm Health Clinic; and Ellen Piro from the Norwegian ME Association.

Here is the Youtube version:
http://www.youtube.com/watch?v=xPOvWsSf1oU&forumid=331851

Click the red CC link on the bottom right for English subtitles
And here is a translation in English (thanks Renee and Ellen):

Reporter: Scientists now believe they are one step closer to solving the riddle of ME. Around 18,000 [in Norway] suffer from the disease chronic fatigue syndrome. A new virus discovery has given them new hope.

Dr. Mette Johnsgaard to Annette Gilje: "You have a positive serology test."

Anette Gilje: "Wow!"

Reporter: Last Friday the result confirmed what she had thought a long time. She has a virus. For 15 years, Anette Gilje has had a diagnosis of Chronic Fatigue Syndrome diagnose, also known as ME.  Many people have told her that it is all in her head. This virus may be the evidence that proves they were wrong.

Anette Gilje: "It's good to get an explanation as to why I've had such terrible problems with IBS and chronic inflammation for such a long time, and been so ill. But while it is great to get a serious explanation, the health services do not have any medications as yet."

Reporter: A new Norwegian study shows that 50 out of 80 people diagnosed with ME had the newly discovered virus. It has similarities with the HIV virus, but no one has been able to prove yet that it is contagious. The discovery could revolutionize research.

Dr. Johnsgaard: "It's the first time we have completely objective measurements on some patients in this group. It is time that we begin to find lab tests we can take, which can define the disease.  If the ME sufferers are sick because of this virus, they must get a completely different treatment than today."

Anette Gilje: "We are a big step closer to the solution ... and it gives hope for treatment!"

Transcript of the interview with Ellen Piro:

Reporter: Ellen Piro, welcome!  Hope is taken hold now; you may be on the trail of the cause of this disease. What does it mean?

Ellen Piro: "This is a very misunderstood disease. We patients have always felt that there is an underlying infection. We do not know yet if this virus is the direct cause or secondary.

"There are many questions that remain to date. Anyway, it's very exciting.

"What concerns us now is that we see ME patients giving blood."

Reporter interrupts: We will come back to it, but let me first ask you: At what degree is what we see now ... this discovery of this virus more than a hypothesis?

Ellen Piro: "It is absolutely certain that the virus is there, and it does not go away. And they find it in large quantities in this patient group. It was first detected in men with prostate cancer, and then in 2009 came this discovery. It is very, very exciting."

Reporter: Why is it so important to clarify the cause?

Ellen Piro: "Of course we want to know why we have had an infection and never become healthy, and we are also looking for treatment. This disease has turned our lives upside down. And many are very, very sick."

Reporter: What kind of problems do these patients meet who suffer from this disease?

Ellen Piro: "Especially distrust,  because the standard tests show nothing, or very little, so patients are not believed and it becomes very hard and very difficult."

Reporter: What challenges are raised if it is a virus that is causing this?

Ellen Piro: "It's what we have believed all along, but it opens the possibility for treatment and now there's a lot of activity in research around the world."

Reporter: Is it about time, do you mean?

Ellen Piro: "Yes, it's about time!"

Reporter: Why?

Ellen Piro: "We have been at it for a long time, waiting and searching and hoping. And this gives absolute hope."

Reporter: You said yourself that you have been working with this issue for 23 years. Tell us a little about the struggle for recognition of the disease.

Ellen Piro: "In my case I was lucky because I got an early diagnosis in London and help there. At that time, 23 years ago, ME was totally unknown in Norway even though it has been listed in the World Health Organization's diagnostic system under neurology since 1969. But it was unknown at the time."

Reporter: You mentioned earlier in this interview; there is a debate if ME patients should be able to give blood or not. What can you say about that?

Ellen Piro: "Scientists abroad are very concerned because they have found positive XMRV in the blood supply, or in healthy people. I have got figures from Belgium now; they have looked in the blood banks - in healthy people. In Europe, it seems that there are 2% of healthy people who test positive. In Japan, they found 1.7%."

Reporter: What does it mean?

Ellen Piro: "This means that it is found in healthy people and we are concerned about transmission. We see that it occurs in families, and we now want the Norwegian health authorities to take this seriously and give a total ban for patients with ME that they should not donate blood."

Reporter: Because you fear that this disease is transmitted by blood transfusion, for example?

Ellen Piro: "Yes."

Reporter: Ellen Piro, thank you for coming to the Morning News.
---------- End of interview -----------

Proofiness - Charles Seife - NYTimes.com

 
Anytime there is something that is happening, we try to find a cause. But sometimes in medicine, sometimes things are absolutely random. Our minds don't accept that. We must find a cause for every effect.

A really good example is the autism issue. Whenever a parent has a child who ends up being autistic, the parent more than likely says, "What caused it? How did it happen? Is there anything I could have done differently?" This is part of the reason why people have been so down on the M.M.R. vaccine, because that seems like a proximate cause. It's something that usually happened shortly before the autism symptoms appeared. So our minds immediately leap to the fact that the vaccine causes autism, when in fact the evidence is strong that there is no link between the M.M.R. vaccine or any other vaccines and autism.

* * *

This is the problem with CFS.  On the surface, it seems entirely random -- often affecting people who have good health/exercise habits -- so the doctors blame the one thing they can: psychology.  The patient who exercises daily and eats her veggies, doesn't drink or smoke, obviously can't be blamed for bringing it on herself (unless the doctor wants to accuse her of lying about her health habits), so he goes for the one thing that's hard to prove or disprove: what's inside her head.

The first doctor I saw in 1987 kept harping on psychological causes, finally going through a long list of things that might produce anxiety.  With that prompting, I finally remembered that I did have a minor legal matter in process -- one where I was almost 100% guaranteed to win because the law was on my side and it was in the hands of one of the best lawyers in town.  I had, frankly, forgotten about it because it caused me so little concern.  But it gave him something to hang his amateur psychologist diagnosis on.  "Aha!  I was right!"  No, you were wrong, but there's no way to prove that I was not worried about it in the least.

Since he didn't want to accept my cause/effect that this debility related to a flu-like illness I'd had months earlier, he had to find his own cause/effect and kept coming up with new reasons until he finally found one that actually existed, however peripherally.

 

10 Things I've Lost To CFS - EmpowHER.com

 

3. Church family
I hung on to my church long after I should have been hanging onto my bed. I'd gradually dropped out of every departments as I got sicker, and with each resignation I mourned. Eventually I had to quit going at all.

A few people sent cards at first. Then silence. Big, echoing, heart-breaking silence. For me, the Church Family proved to be a myth, like the unicorn.

* * *

Ditto.  The minister, with his "vast medical knowledge", decreed that I was just lazy (despite the fact that I was struggling mightily to continue working against the odds) and this opinion was internalized by the rest of the church.  Not one card.  Not one phone call.  Not one casserole.  Nothing.

The myth that the church will take care of its members when they get sick is just a myth.  The church takes care of Preacher's Pet.  I wasn't one.  I was dumped like a bag of smelly garbage.

 

 

 

Chronic Fatigue Syndrome: 10 Things People Misunderstand About This Fatigue

Chronic Fatigue Syndrome: 10 Things I've Lost To CFS By Jody Smith

Chronic Fatigue Syndrome: 10 Things I've Lost To CFS
By Jody Smith

I've suffered many areas of loss because of Chronic Fatigue Syndrome.
I'm one of the lucky ones who has been recovering, but it's anyone's
guess as to how much of a life I'll be able to reclaim

Here are some of the things I've lost to CFS.

Years of my kids' childhoods
Special occasions
Church family
Any trust in conventional medicine
Any security in my government

The full post can be found at:
http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-10-things-ive-lost-cfs?page=0,1