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Resource Guide & Medical Database

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Fibromyalgia, CFIDS, IVN, &
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Multiple Chemical Sensitivities (MCS): What It Is,

 

ME & the Pituitary
Maybe
How
Fibromyalgia/CFIDS/MPS/ME Affects the Body

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FOR THOSE OF YOU WHO WERE TOLD
THAT YOU WERE "NUTS"

PLEASE READ PAGE 24. IT MIGHT HELP.
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FIBROMYALGIA CHAT: For Audio Chat:CLICK HERE
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to go OnChat!



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All New Pages & Info on Fibro/CFIDS & ME, "Coming Soon"
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"NEW"
Fibromyalgia, CFIDS,  Myalgic Encephalomyelitis:
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"NEW"
MEDICAL  "CHARTING"  TEMPLATES:
For Charting: Medications, ROM -
Vital Singes, Pain, pt. Progress, & etc.

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MED-HELP.COM & MED-HELP.NET
Ask The Nurse  &  Ask The Doctor
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Tuolumne County: Medical Doctors
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Index - CFIDS/Fibro/ME/ & Pain
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San Joaquin CFIDS/ME/FMS:
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"NEW"
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Fibro- News Updates "Now" Posted @ The Above Page link!
Best Viewed Using: Internet Explorer or AOL, @ this time!

Please sign and post FAR and WIDE!


Although this was not specifically stated in the original Co_Cure posting,
permission is granted to forward the M.E. petition (A CALL FOR ACTION: THE
RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING
DISEASE) anywhere or to add links to websites.
The petition is located at :

http://www.petitiononline.com/MEitis/petition.html


[AOL: <a href="http://www.petitiononline.com/MEitis/petition.html">
Click here</a>]

Permission is hereby granted to any person or group anywhere to include the
petition in newsletters or to have it available at conferences.
For people who do NOT have access to the Internet, and preferably ONLY those,
signed copies of the petition will be collected at our office and we will
take them to the next meeting of the "CFSCC" in whatever incarnation and
timeframe that might occur. Our mailing address is:


M.E. Petition
c/o RESCIND, Inc.
9812 Falls Road
Suite #114_270
Potomac, Maryland 20854


The response thus far has been most impressive and the petition is already
ranked as one of the top 25 at that site. There have been more than 460
signatures in a little more than a week, with NO publicity push, just word of
mouth on the Internet.The comments are very informative and insightful. Many
comments express and capture the pain, frustration and despair of living with
this illness that is so misunderstood (due in large part to the
inappropriate, demeaning name) along with long overdo demands for recognition
and help. They clearly reflect positively on the knowledge, dedication and
resolve of patient community as a whole.

Hillary Johnson, author of Osler's Web, was one of the first to sign. After
all the years of research and dedication thay went into the writing of her
book, her endorsement is significant and reassuring. She wrote:

"CFS was a name selected in 1988 by a small group of politically motivated
and/or poorly informed scientists and doctors who were vastly more
concerned about costs to insurance companies and the SSA than about public
health. Their deliberate intention__based on the correspondence they
exchanged over a period of months__was to obfuscate the nature of the
disease by placing it in the realm of the psychiatric rather than the
organic. In doing so, they also deliberately ignored a substantial body of
published research on ME. The harm they have caused is surely one of the
greatest tragedies in the history of medicine. The government scientists
involved in this fraud should have been prosecuted years ago. Restore the
name in the U.S."

It is helpful to give information as to where you are from when signing the
petition. Also, please remind everyone that family, friends, co_workers etc.
can sign also _ it does not have to be limited to patients.

Tom Hennessey, jr
President
RESCIND, Inc.
www.geocities.com/capitolhill/4277

Jill McLaughlin
Executive Director
National CFIDS Foundation, Inc.
http://www.ncf_net.org 

A Paper On Fibro/ME/CFIDS/IVN/ And its effects on the Pituitary Gland & Endocrine System
Erich. 

I believe that I have found the avenue that the virus uses to attack its victims. It lies in the vascular constriction of the Hypothalamus and the Pituitary Master Gland! Just as you had thought! IVN is a stage associated with this retroviruses But it is attacking the Pituitary & or Hypothalamus vascularities as well. That is why so many patients have such varied
system & glandular abnormalities! Also the severe Pain can be linked to IVN as stated here in this excerpt from an ABC special on fibromyalgia. 
 

                                  It is caused by abnormalities 
                                  in the brain and central nervous system. Sensory Alarms 
                                  Stuck! 
                                  The researchers found that fibromyalgia patients have 
                                  significantly less blood flow to the parts of their brains that 
                                  deal with pain. And compared to healthy people, they also 
                                  have twice the level of a  brain chemical called 
                                  Substance P, which helps  nervous system cells 
                                  communicate with each  other about painful stimuli. 
 
This (less Blood Flow) is IVN effecting the Pituitary, causing the Master Gland Not to receive the correct & efficient blood flow due to vascular spasms and irregularities. 

This in turn is causing a inconsistency in the regulation of vital hormones throughout the Lymphatic system and directly effecting the vascular system as well. 

I wish I could explain exactly what is in my head right now! For I have a clear picture of exactly what is going on but cannot put it into words! This Darn (so called) Fibro Fog!! 
 

MRI's have shown that people with ME/CFS/IVN have a reduced blood flow to the brain. This is a fact! What I am trying to say is, It is not just the whole brain that is being vascularly (for lack of a better term) being deprived of optimum blood flow! BUT the Pituitary is the Gland that is at most compromised by this Virus!!!! 

I have sited Hundreds of cases here at MED-HELP.COM & MED-HELP.NET that show after careful examination and following of the Patients symptoms. That it all can be traced back to the Master Gland, and or arterial / vascular deprivation of the Hypothalamus.
Maybe even something else that we are not aware of !! 

As you know, the whole body's rhythm of normality, (so to say) relies on this one Gland to be set by! If it is off by one second, like a clock! (due to a vascular compromise or abnormality) It can screw everything else up! (small time & big time) depending on the amount of vascular
compromise! 

Rr Ryll, does this make sense to you? Or do you think that I am wrong? 
This would surly coincide with your theory of IVN! 
Please let me know what your thoughts are on this matter! 

May God Bless You & your Wife Richly. 

Mark. 

(Posted on 04/04/00) By: Mark Norwood. Head Nurse & CEO: MED-HELP.COM & MED-HELP.NET

Any reply will be posted as soon as it comes in!

Reply Received Below on same day!
Dear Mark,

Yes, I agree with you. I have always said that the brain blood supply
has been compromised and it could well be t hat the damage done to the
pituitary is worst and causes the most severe symptoms.

As I mentioned, Dr. Silva, Dean of Medical School at UCD is now
reviewing my paper and I will await his reply before I proceed further.
I have now tightened it further and changed some wording that reviewers
might take exception to.

Cordially, Erich 

(Reply Received & Posted on 04/04/00) By: Mark Norwood. Head Nurse & CEO: MED-HELP.COM & MED-HELP.NET  From Dr. Erich Ryll

Click Below for a more indepth over view on this Hypothesis:
Over the next few days I will be working on trying to explain
how this virus does its damage to the brain of Fibro Pt's, in a way
that is easy to understand. Please bear with me! You can Read More on this by Clicking on the Button Below!
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(News Update) 12/06/99

Isoprinosine(R) Clinical Study Shows Promise For Chronic
Fatigue Syndrome

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AURORA, ONTARIO--Isoprinosine®, an approved anti-viral
pharmaceutical used to treat sub-acute sclerosing panencephalitis, has
shown to be promising in the treatment of Chronic Fatigue Syndrome.
FULL STORY
More Information on Isoprinosine treatment for Fibro/ME/CFS will be posted here as soon as it is released!
Also: links on Isoprinosine treatment for further reading will be posted soon on this Page.

(News Update) 10/07/99

 Protein may be culprit for kissing disease. Epstein-Barr virus

                 Japanese and American researchers have
                 discovered how the Epstein-Barr virus takes over
                 certain immune system cells in order to promote its
                own replication and spread throughout the body,
                 according to a study in this week's issue of the
                 journal Science

FULL STORY


(News Update) 8/18/99
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 Epstein-Barr Virus Infection Linked To Human Breast Cancer 

                          WESTPORT, Aug 18 (Reuters Health) - Epstein-Barr virus (EBV) is 
                          present in a high proportion of invasive breast cancers and is 
                          frequently associated with more aggressive tumors, according to a 
                          paper published in the August 18th issue of the Journal of the 
                          National Cancer Institute. 

                 http://ipn.intelihealth.com/ipn/ihtIPN?c=237355



(News Update) 8/03/99
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 Living with fibromyalgia: One woman's  story

                  One day, shortly after the birth of her second baby,
                  a new mother collapsed into a chair in her home. It
                  wasn't quite noon, yet she was already exhausted.
                  She had been noticing that she didn't have as much
                  energy with her second child as she had had with
                  her first. Today was no different than the days
                  before: Her muscles ached and she wasn't sleeping
                  well.

(click)
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Or click here for Archives Copy:


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For More "Past" News On- FM/ME/GWS/IVN/CFIDS/EBV
Click Bellow For Link 5525
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A EMail Letter From: C-Net Central
     From: 
        Richard Hart <richard@cnet.com>
     To:
        "Mark Norwood" <man@med-help.com>


 I just wanted to let you know I have alerted our segment producers to 
 your med-help site. This doesn't mean they will be using you for a story   soon, just that they will be aware of your skills and availability the next   time they do story concerning the Internet and health. Nicely done site,
 by the way, in particular the page about fibromyalgia.


Merry Christmas.
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RH 
You can read more on this email from Mr. Hart
By visiting the Bulletin Board: (click)
Sorry But This does excite me!!

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FOR MORE ABOUT THIS SITE &:
Fibro/CFIDS/ME
Go To Next Page!..(click)

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 News on Medicine : (Updated 11/21/99)
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A few new treatments offer hope for Chronic Fatigue.:
#1. we  all know that Vitamin B12 IM-  -up to 3cc every 72 hours works well for Fatigue. But now A Mixture of B12 & Oxytocin a Drug used to help in - -the delivery room in OB, Helps stimulate the same side of the Brain as B12 does. The mixture of these to Drugs given Intramuscularly at an apx Dosage of B12 between 1 & 3cc & Oxytocin 1ml/10U Helps a large % of CFIDS sufferers.My self ( & i have tried the mixture) Did
not help much, but others it has.Each Must be drawn up in a separate syringe- but your Doctor should know this.

#2.Vitamin C  : Given IV piggyback about every 5 to 10 days.


#3. Gamaglobulin,: Ask your Doctor about  this & the coarse of treatment. It has done wonders for those who have used it Im told.


#4. Thalidomide : Just ask your Doctor about this reject from the 1960,s. IT is coming back & ( AND MAY BE OUR BEST -
- BET YET I THINK ) it May  help slow the Virus ability to reproduce.


#5. Oxycontin : This Strong Pain Medicine is a good choice because it is a 12 hour time released form of Percodan so theirs - - no ups & downs / highs & lows / peaks & valleys / as there is in short acting Narcotics that only last a few hours.    Oxycontin comes in strengths of 10mg 20mg & 40mg tablets. Just one dose every 12 hours & it should control your pain -  - adequately, That is  after you titrate up to the dose that's right for you. (UP DATED  11/6/97.


#6. Seratonin Uptake Inhibitors : Like Paxil, Prozak, and many others, Can help you better deal with the everyday-     -Ups & downs of the stress of handling CFIDS. One catch though, It takes about a month for your body to adjust-     -To the medicine, and some work better
than others so you may need to try different brands until you find the right one.      After you get through that rough few weeks you may find that this Medicine is a GOD/SENT. Talk with your MD about-     -Getting on one.


#7. Gamma Globulin is worth trying in CFIDS:  Dr. Ryll's Reply (click)


#8. Can't Afford Your Prescription Medication?
Free Prescription Medicine is Available to those who Qualify. (click)



#9 For more on Chronic Intractable Pain..CLICK HERE
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  In people with chronic pain, the spinal cord 
becomes overloaded with input, leading it to
become hypersensitive to the messages sent
its  way. It in turn abnormally amplifies the 
response so patients feel pain from contact
that should have no effect.

Fibromyalgia


 By Jenifer Joseph:  ABC. NEWS.com
.April 8 - Jan Murphy committed suicide last  summer because she could no longer live with a  disease that many doctors still don't believe exists.  She had fibromyalgia, a chronic pain condition that madecool breeze on her skin feel like fire and caused every part  of her body to ache. After CT scans and MRIs showed no medical reason for her pain, Murphy turned to Dr. Jack  Kevorkian for a final solution. "When you start hearing there is no hope, no treatment, and no cure, over and over, you lose your will to fight," Murphy wrote in a eulogy that was read at her funeral. "What  most people saw of me was a shell of what was going on inside." What exactly was going on with Murphy and other  fibromyalgia patients has long been a controversial matter in the medical profession. Many doctors thought that  fibromyalgia was a mental health problem, with no physical  cause. Until five years ago, grassroots fibromyalgia groups were  virtually chased out of medical conferences when they tried to  spread the word about the syndrome.  Now, researchers at the University of Alabama have uncovered proof that what patients like Murphy experience  isn't a psychological disorder, but rather is caused by abnormalities in the brain and central nervous system. Sensory Alarms Stuck
  The researchers found that fibromyalgia patients have
 significantly less blood flow to the parts of their brains that  deal with pain. And compared to healthy people, they also have twice the level of a brain chemical called Substance P, which helps  nervous system cells           communicate with each  other about painful stimuli.
 Elevated P levels may actually produce the higher levels of pain  throughout the body . Dr. Laurence Bradley,
   a pain management specialist who led the research, presented  his findings at a National Institutes of Health conference on  pain and gender today. About 90 percent of fibromyalgia  sufferers are women, though researchers don't know why.  "It's like a burglar alarm which normally goes off in the  body in response to certain kinds of signals," Bradley  explains. "But in patients with fibromyalgia, benign signals are making them go off as well." Bradley, who estimates that 8 percent of all women suffer  from fibromyalgia, says his research is comforting to those   who thought their symptoms meant they were "crazy." "It was easy for doctors to attribute the pain to psychological disorders," says Bradley, who is also a psychiatrist. "That perception is beginning to change now that   we can show distinctly different brain function that is not  evident in patients with depression."   Treatments Elusive  Now that the cause of fibromyalgia seems clearer, scientists    are searching for better ways to treat the symptoms. One   research team is investigating whether antidepressant drugs   increase cerebral blood flow. Another is looking at injecting  toxins into precise places in the spine to block debilitating  pain without causing the numbing side effects of narcotic  drugs. Meanwhile, gassroots groups like the Fibromyalgia  Network will continue to pursue funding for more research  into the condition.  "It feels like being run over by a Mack truck," says   network manager Steve Thorn, whose wife has
 fibromyalgia. "It's a terrible thing to live with. It doesn't go
            away."  Jan Murphy, for one, wasn't willing to wait. "Please do not  think of this as suicide," she wrote, "but as a self-deliverance  from a life that became too unbearable to live."
 Symptoms of FM Syndrome

  All-over chronic body pain
  Trouble sleeping
  Stiffness
  Severe fatigue
  Memory loss
  Headaches
Nausea

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Fibromyalgia Tender Points
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The dots in the figure indicates various location of tender points
on people with fibromyalgia, slight pressure applied by a doctor causes-
pain or tenderness
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Chronic Fatigue Information  (click)
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     Antibody Associated with Autoimmune Disorders Found
       to Cluster in Families

                         Mostly about clotting related events, but also mentions families
                         with "many other immunologic diseases, including
                         rheumatoid arthritis, systemic lupus erythematosus,
                         Sjogren's syndrome, crohn's disease, multiple sclerosis,
                         low platelets (ITP), thyroid disease and others".


         CDC

                         Complete text of revised case definition for Chronic Fatigue
                         Syndrome by the Center for Disease Control.


         CFS may run in families

                         Science Writer Leigh Dayton writes in the Sydney Morning
                         Herald-Daily News that there is new evidence from Britain
                         and Australia suggesting the CFS runs in families.


         CFS Radio Program on Nov 9th, 1997

                          Roger G. Mazlen, M.D. Host with guest Dr. Elaine DeFreitas,
                         a pioneer in the area of virology, a specialist in retroviruses
                         and one of the first people to tackle Chronic Fatigue
                         Syndrome as a serious disease.


         Chronic Fatigue, Sarcoidosis, and ACE

                           What is Sarcoidosis and why is ACE of interest to Chronic
                         Fatigue sufferers?


         Fact Sheet
         What Is NIAID Doing About CFS?
         Chronic Fatigue Syndrome Resources for Patients

                          CFS: Information for Physicians
                         National Institute of Allergy and Infectious Diseases (NIAID)
                         on-line information


         FAQ - Roger Burns

                         Long document with lots of comprehensive information from
                         Roger Burns on behalf of the CFS Internet Group.


         Guidelines for Doctors

                         Breakdown of the progression of CFS. Covers the physical,
                         psychological, social and work environment of sufferers.
                         Patricia Fennell, CSW, is the founder of Albany Health
                         Management Associates in Albany NY.


     Have I got Chronic Fatigue Syndrome?

                         On-line brochure written by Dr Livingstone, Little Surgery,
                         Stamford, UK. Covers all the basics in easy to understand
                         language.


     Medicine for the Public - CFS


     Moira's Canberra Fibromyalgia and Chronic Fatigue
     Syndrome Page


                         Perspectives on Diagnosing Chronic Fatigue Syndrome

                         Four physicians across the country discuss their procedures
                         for diagnosing chronic fatigue. Good reading for those who
                         have never seen a doctor for a diagnosis.


     Questions And Answers Relating To The Diagnosis Of
     CFIDS

                         Newly diagnosed or just suspect that you might be a PWC?
                         Here is a good place to start learning more about CFS.


     Scientific Workshop Summary:

                         Site for Osteopathy and Accupuncture discusses CFS, FMS
                         and disorders that can mimic them.
                         Tell me what my physician should know
                         Still searching for a CFS diagnosis? Recent doctor change?
                         Here is a good starting point to review with your physician.


     10 Years After First Report, Mystery Lingers


 
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Fibromyalgia, CFIDS, & Myalgic Encephalomyelitis :
The Best Links To The Most Informative Sites-
On The Internet.

Also See Page 1B For More Medical Links (click)
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TOP RECOMMENDED SITES!


Other Related Fibro/CFIDS/CFS/& ME. Sites

Some of the links below need to be updated
Please have patients until I can get this done!!


Contact Webmaster to Report Dead links!
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THE
MYALGIC-ENCEPHALOMYELITIS
TREE
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Myalgic Encephalomyelitis:

Is the name given to an unknown virus that Infects & Inhibits the Auto Immune System & Neuro Muscular System Of those who have been Diagnosed with (Fibromyalgia)- (CFIDS)- & (IVN). This Disease can lay Dormant in an individual, or be contracted Through unknown, causes, ways, or even possibly Hereditary Factors. The Method of transmission (again) is only speculatory To Infection. For instance, A husband may get it & his wife may not, but his child or neighbor may become Infected. & Visa Versa. You might get CFIDS & not progress to Fibro- & your Immune system may fight it off, or you might progress to the Fibro- stage, & even in rare cases progress to Severe Fibromyalgia or Severe- Myalgic Encephalomyelitis. Severe Myalgic Encephalomyelitis is Characterized by the Virus Mutating To the point of irreversible, Muscle-Nerve-&-Fibrous Tissue Degeneration. In the late stages of this Retro Virus known as Severe ME, can be found Changes in the Blood Chemistry similar to that of MS & ALS Pt's especially the CPKmm & the CPKmb, The markers that point to the probable cause of the unpredictable chest pain & muscle pain in which so many Pt's have. This CPK fluctuation in the mm differential can climb in the thousands, & is hard to track due to the transient nature of the virus. That is to say that in fibro & CFIDS, the virus runs around attacking different Body systems, until that particular system fights it off & It moves on to another (or other) systems to attack. In Severe ME the body has no longer the ability to fight off the virus, & as a Result the body system (lets say Neuro) sustains irreversible damage. This can happen to the muscular system, or any other organ or system under attack. The chart above shows what course the virus might take in its attack on the Human Body. This Analogy of the ME Virus is not taken from text or Published Articles- But from Pt's own experiences & my tracking of this disease over a period of years. I am a Nurse & a Scientist, & a casualty of this terrible disease, with Severe ME.  I was a hard working Nurse & Paramedic for over 16 years & My Hobbies for over 30 years  were Body Building, Martial Arts Instructor, Aerobics, Gymnastics & Running. I had CFIDS for 5 years, Then Fibro for 1 year, and now for the past 2 &1/2 years Severe ME. 2&1/2 years ago I could still Bench Press @ least 300 pounds- Today I am wheel chair & crutches Bound. Can hardly lift a cup of coffee without dropping it from either- to week or shaking to much. I also require around the clock Nursing care. We have charted all my blood tests, Medications & other tests. And have found no other disease present. Also followed CPK tests weekly for 6 months along with sed rate & liver functions All are either slightly abnormal, or grossly abnormal

CONCLUSION:
Is this a new ME Retro Virus?
I BELIEVE IT IS
Mark Norwood     man@med-help.com

 

 
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How Does Ampligen Work?

  Patients with CFS seem to be missing
  certain antiviral material in their immune
  systems, and Ampligen ingeniously
  takes the place of the missing material.
  According to Dr. Marsha Wallace, here's
  how it works: Most, if not all, cells in the
  body contain an anti-viral defense
  system called the RNase-L pathway. By
  interfering with the cells' reproduction of
  viruses and destroying the viral RNA, it
  appears to prevent cellular damage. A
  few days after a person becomes ill with
  a virus, the level of 

 RNase-L rises and then falls.
 Scientists believe that this activation
 of RNase-L allows a patient to
 develop immunity and produce
 antibodies to the virus. 
 But some viruses beat this
 defense mechanism by inactivating
 the RNase-L. Ampligen seems to
 reverse this process and stop an
 overly active defense system.
 Patients taking Ampligen receive
 twice-weekly infusions; the drug's
 molecular structure is too fragile to
 be put into pill form. 

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Safety Of Hydrocortisone As CFS Treatment Questioned
 CHICAGO, IL -- Sept. 22, 1998 -- Low-dose hydrocortisone may be an effective treatment for  chronic fatigue syndrome (CFS), but patients experience a potentially-dangerous side effect, according  to an article in the Sept. 23/30 issue of The Journal of the American Medical association.

Robin McKenzie, M.D., of the National Institutes of Health in Bethesda, MD., and colleagues studied the effect of low-dose hydrocortisone as a treatment for CFS. Participants who received low-dose hydrocortisone reported feeling better than participants who only received a placebo treatment. 

  The study used a wellness score that rated overall health using a scale with zero representing the worst the participant had ever felt and 100 representing the best they had ever felt.

 "The percentages of patients recording improvement of at least five, 10 or 15 points on the wellness  scale were greater for hydrocortisone than placebo recipients [five points, 53 percent versus 29 percent; 10 points, 33 percent versus 14 percent; and 15 points, 20 percent versus six percent]," the researchers  said. "The mean improvement on treatment in the hydrocortisone group was 6.3 points, being higher than
 the mean improvement of 1.7 points for the placebo group."

 Although these results were promising, the study also found that patients who received hydrocortisone experienced significant adrenal suppression. It was previously believed that low doses of corticosteroids  were relatively safe and would not cause this type of suppression. 

 "Although steps were taken to avert serious or potentially life-threatening adrenal insufficiency in the face of emergent stress, the fact that it could happen with less cautious widespread use precludes the present
regimen of hydrocortisone or comparable doses of other systemic corticosteroids as acceptable choices  for the prolonged treatment of chronic fatigue syndrome," they said.

 The researchers have been exploring the possible connection between the endocrine system (especially the hypothalamic-pituitary adrenal axis) and CFS. Corticosteroid hormones are an important part of   making nutrients and energy available to the body. The adrenal glands are the source of natural production of corticosteroid hormones, such as cortisol, commonly known as hydrocortisone. 

 The researchers tested the amount of hydrocortisone in patients with CFS and found that they had on average about 30 percent less hydrocortisone than healthy controls. This led the researchers to consider
low-dose supplementation with hydrocortisone to possibly correct the imbalance.

 The researchers used the more complex 1988 Centers for Disease Control and Prevention criteria todefine the cases to be included in the study. The 1988 case definition requires debilitating fatigue and  eight or more of 11 signs and symptoms occurring for at least six months. The patients also met the 1994 CDC criteria. The eight symptoms are memory or concentration complaints, sore throat, tender lymph nodes, muscle pain, multi-joint pain, a new pattern of headaches, unrefreshing sleep and malaise after exertion that lasts more than 24 hours.

 The researchers conclude that though this is the first study, to their knowledge, to show an improvement in CFS due to a drug treatment, the low-dose hydrocortisone treatment probably is not viable in a clinical setting. 

"What little improvement might be attributable to hydrocortisone treatment was achieved at the expense of significant adrenal suppression," they explained. 

 

 
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MYALGIC ENCEPHALOMYELITIS.

MYALGIC ENCEPHALOMYELITIS. This name has been used in scientific literature since 1956, although not as broadly as CFS, and has been widely accepted in most of the world outside of the U.S. This term is listed in  the World Health Organization's classification of diseases. However, many scientists nowadays consider this name inaccurate and they discourage its broader use, since the "-it is" portion refers to inflammation of the brain, which is  not sufficiently supported by medical evidence. The recent British Royal Colleges' Report recommends against using this name and recommends using CFS instead. Yet that report has been criticized by the journal Lancet as being biased towards psychiatric views.

     MYALGIC ENCEPHALOPATHY. This new alternative has been discussed by several scientists recently. It  allows use of the familiar term "M.E." yet omits "-itis" to which many scientists object (see above). This name has not been in use by scientists or patients. In addition, while "encephalopathy" means "brain disease" to American doctors, it has a much more serious connotation to British physicians, and there could be objections based on lack of scientific evidence for this term as well.

 

 
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FDA approves Trinity
     Biotech EBV markers

                    WESTPORT, Jun 02 (Reuters) - Trinity Biotech,
                     based in Dublin, Ireland, said on Monday that the Food
                     and Drug Administration approved the company's two
                     markers for detecting Epstein Barr Virus.
                     In a press release posted on Business Wire, Trinity said
                     that enzyme immunoassays detect the presence of virus
                     antibodies, EBNA-1 IgM and EA-D IgG, associated
                     with acute and chronic infection, respectively.
                     Carter Wallace's Wampole Laboratories will distribute
                     the markers in the US.
                     Trinity Biotech CEO Ronan O'Caoimh said that the
                    company now has over 80 FDA-approved test kits.

 

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Cytotoxic T-Cell Therapy Shows Promise In EBV-Positive Hodgkin's Disease

Wed, 29 Apr 1998 12:53:01 GMT    
By Nancy Ehrlich

 WESTPORT, Apr 29 (Reuters) - Epstein-Barr virus (EBV)-specific cytotoxic T lymphocytes drawn from patients with EBV-positive Hodgkin's disease can be expanded in vitro and reinfused as treatment during relapse.  In the April 15th issue of Blood, Dr. Cliona M. Rooney, presently at Texas Children's Hospital in Houston, Texas, describes the approach she developed to treat this disease with colleagues at St. Jude's Children's Research Hospital and the University of Tennessee College of Medicine, both in Memphis, Tennessee.  Dr. Rooney and her colleagues explain that EBV-positive immunoblastic lymphoma cells are often EBV-antigen positive and may therefore be vulnerable to treatment with virus-specific cytotoxic T lymphocytes. However, the researchers add, the immune effects of Hodgkin's disease likely prevent the generation or proper function of EBV-specific cytotoxic T lymphocytes.  In the study reported this month, the investigators attempted to determine whether or not autologous EBV-specific cytotoxic T lymphocytes could be expanded ex vivo, "...in the absence of in vivo immunosuppressive effects." According to the article, Dr. Rooney's team was able to generate cytotoxic T lymphocyte cell lines from 9 of 13 patients with Hodgkin's disease. Five of the 9 had active disease, and 4 were in remission. "Although these lines had an abnormal pattern of expansion comparable to EBV-specific [cytotoxic T lymphocytes] generated from normal donors, their phenotype was normal except for reduced expression of the zeta chain of the T-cell receptor," the authors report. Reduced expression of the zeta chain is a recognized T-cell abnormality in Hodgkin's disease, they add.  The researchers then infused labeled cells from these cell lines into three patients with multiply relapsed disease. The cytotoxic T lymphocytes "...persisted for more than 13 weeks postinfusion and retained their potent antiviral effects in vivo," they report.  "Many barriers remain to prevent the successful therapy of EBV-positive Hodgkin's disease using virus-specific [cytotoxic T lymphocytes]," according to Dr. Rooney and her associates. "Nonetheless, our demonstration that it is possible to generate EBV-specific [cytotoxic T lymphocytes] from patients with advanced Hodgkin's disease, that these cells survive and function in vivo, and that [cytotoxic T-cell therapy] may be directed to the subdominant viral epitopes expressed by Hodgkin's cells, provides reason to hope that such...therapy will become a useful adjunct to conventional treatments for EBV-positive Hodgkin's disease."  Blood 1998;91:2925-2934. Copyright 1998 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

 

 
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Cognitive, Physical Disability Linked In Patients With-
Chronic Fatigue Syndrome.
.       Fri, 10 Apr 1998 12:53:02 GMT

 WESTPORT, Apr 10 (Reuters) - There may be an association between functional disability and neuropsychological impairment in patients with chronic fatigue syndrome, according to researchers in New Jersey and North Carolina.  The investigators assessed neuropsychologic impairment and functional disability in 53 patients with chronic fatigue syndrome and 32 healthy controls, none of whom exercised regularly.  Lead author, Dr. Christopher Christodoulou of the University of Medicine and Dentistry of New Jersey-New Jersey Medical School and his team report in the April 6th issue of the Journal of Neurology, Neurosurgery and Psychiatry that "...patients with chronic fatigue syndrome who perform worse on neuropsychological testing are also more likely to display greater functional disability in their daily activities." Specifically, patients who failed tests of list acquisition and free recall had significantly more days of general inactivity than those who passed the test.  Although this is the first study to show a relationship between cognitive function and physical impairment in patients with chronic fatigue syndrome, similar associations have been observed in patients with HIV, multiple sclerosis, Alzheimer's disease and stroke, Dr. Christodoulou and others say.  Neither cognitive impairment nor physical disability correlated with the presence of psychiatric symptoms or depression, according to the report.
 Co-author Dr. John DeLuca, of the Kessler Institute for Rehabilitation in West Orange, New Jersey, told Reuters Health that the data provide a "strong suggestion" that cognitive impairment in patients with chronic fatigue syndrome "...could cause significant functional disability." He said, "It is important for physicians and health professionals to realize that [chronic fatigue syndrome] patients have real cognitive problems and that these problems can have real consequences for their everyday activities."  J Neurol Neurosurg Psychiatry 1998;64:431-434. Copyright 1998 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

 

 
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New Chronic Fatigue Drug Available in U.S. and Canada

       PHILADELPHIA, June 26, 1997 -- Five clinical sites across the United States have received approval to participate in the FDA-approved  Ampligen(R) treatment protocol for patients with Chronic Fatigue Syndrome (CFS). Ampligen, developed by HemispheRx Biopharma, Inc., is a new drug under development for potential restoration of physical and cognitive functions of patients with CFS.  This is the first specific FDA approval for treatment with cost recovery for this disorder. An estimated 500,000-to-2,000,000 patients in the  U.S. suffer from CFS.   This first approval for treatment with cost recovery means that patients reimburse the cost of the drug, allowing the  company to recover a  portion of the research, development and manufacturing costs associated with its development to date. Patients   also   absorb  the cost of twice  weekly drug infusion and lab tests.  The treatment program in the U.S. initially will be directed towards the most severely disabled patients       who are expected to be treated for  24 weeks followed by medical evaluation and reassessment.  Simultaneously, sales of Ampligen have also begun in Montreal and Vancouver under the Canadian Emergency Drug Release Program. The   approval in Canada covers patients in all stages of the disease, where the CFS patient population is estimated at more than 100,000. As in   the United States, patients on the treatment may also absorb additional costs associated with drug infusion and medical oversight.   The five sites approved in the United States are New York City, Charlotte, NC, Houston, TX, Charleston-area, SC, Philadelphia-area, PA   and San Francisco Bay/Reno, NV area. All sites have received or are awaiting confirmation from their local Review Boards or Ethics   Committees that they may begin treating patients with Ampligen. Treatment will begin as soon as customary baseline lab tests, scheduled over   two weeks, are completed. In addition to the five approved sites, an additional twelve sites are under consideration for approval to treat CFS   patients with Ampligen.  CFS, also known as Chronic Fatigue Immune Dysfunction (CFIDS), or Myalgic Encephalomyelitis (ME), is a  serious and complex illness that affects a vast number of different body systems. It is generally characterized by disabling fatigue, problems   with concentration and memory,  flu-like symptoms, pain in the joints and muscles, sleep disorders, etc. As a result, the Centers for Disease   Control (CDC) has assigned the disorder to its priority one list of "new and reemerging infectious diseases" in the U.S.  Hemispherx is a biopharmaceutical company engaged in the manufacture and global clinical development of new drug entities in the nucleic  acid (NA) class for chronic viral disease and disorders of the immune system. The Company is working with regulatory agencies, physicians   and patients to help ensure that epidemic diseases are prevented, managed and cured with maximum benefit and minimum costs to patients   and society.  This press release contains statements of a forward-looking nature regarding future events. These statements are only predictions and actual  events may differ materially. Please refer to documents that Hemispherx files from time to time with the Securities and Exchange Commission  for a discussion of certain factors that could cause actual results to differ materially from those contained in the forward-looking statements.   More information on: Hemispherx, Ampligen

 

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Scientists Uncover Marker Of Autoimmune Disease Activity
September 16, 1998
UT Southwestern Medical Center at Dallas/MedscapeWire DALLAS -- UT Southwestern Medical Center at Dallas researchers have uncovered what they believe is a marker of autoimmune disease activity in patients with lupus and rheumatoid arthritis, which may one day enable doctors and patients to predict disease flare-ups. In today's issue of the Journal of Clinical Investigation, Dr. Mark Siegelman, associate professor of pathology at UT Southwestern, and colleagues described the correlation of disease flare-ups in pediatric patients with lupus and rheumatoid  arthritis with the level of activated CD44 (the marker) in circulating blood. The activated form of 
CD44, a cell surface molecule induced on a small subpopulation of white blood cells called T-lymphocytes (T-cells) during immune reactions, was measurable only in patients who were experiencing an exacerbation of their condition. Dr. Pila Estess, UT Southwestern assistant professor of pathology and a co-author of the study, envisions the day when patients with autoimmune diseases or their physicians will be able to monitor blood levels for  activated CD44 much the same way that diabetes patients monitor their blood-sugar levels. "T-cells are thought to be the cells that start and perpetuate autoimmune disease," said Siegelman. "In our study, every time there was an exacerbation, there was another wave  in the blood of T-cells with activated CD44 on their surface. The implication is that these cells may initiate the autoimmune exacerbations." Activated CD44 T-cells have the ability  to bind to a specific molecule called hyaluronan (HA) induced on the inner surface of the blood vessels near or in the inflammatory site. These particular T-cells repeatedly bind to HA as they roll along the blood vessel wall. The result of this "rolling" is a slowing  down of the T-cells so that they can bind more firmly to other adhesion molecules and  move out through the blood vessel to the site of inflammation, where they cause further injury. Previous work by these investigators showed that in mice the migration of T-cells into an inflammatory site (extravasation) was dependent on this interaction of CD44 with HA (Science 278:672, 1997). They proposed that in humans activated CD44 initiates extravasation of T-cells at sites of inflammation. This paper supports that proposal by clearly showing that circulating blood only from patients with disease flare-ups contains activated CD44 T-cells that undergo "rolling." "There has never been a reliable cell surface marker that  correlates with an autoimmune exacerbation,* said Siegelman. "Regarding therapeutic treatment, if these are truly the T-cells that enter the tissue and initiate damage, you should be able to intervene in the disease process by directly getting in the way of the CD44-HA interaction, thereby preventing injury. Currently we are trying to design molecules that
block the  CD44-HA connection."

 

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PATIENTS REPORT IMPROVEMENT WITH
    EXPERIMENTAL TREATMENT FOR CHRONIC
    FATIGUE SYNDROME

But treatment causes potentially dangerous suppression 
of   adrenal system  CHICAGO-Low-dose hydrocortisone may
be an ffective treatment for  chronic fatigue syndrome (CFS), 
but patients experience a potentially   dangerous side effect, 
according to an article in the September   23/30   issue    of The 
Journal of the American Medical Association (JAMA). 
Robin McKenzie, M.D., of the National Institutes of Health in
Bethesda, Md., and colleagues studied the effect of low-dose&