Saturday, April 5, 2008

CFS Research in DC area (needs patients & healthy controls)

Hi There,

This is Dr Ravindran. I am trying to sent out e-mails to as many as I
can who have Chronic fatigue syndrome, Fibromyalgia and other similar
conditions with severe pain and fatigue. The reason for this is,
right now we are conducting a Chronic fatigue syndrome study at
Georgetown University Hospital, in Washington, DC.

The principal investigator in this study is Dr James N Baraniuk, and
he had discovered 10 set of specific proteins in cerebrospinal fluid
in chronic fatigue syndrome patients. These proteins are not likely
to be seen in Healthy controls. If we could get a complete idea about
these proteins and if we can figure out if these proteins have an
impact on these severe debilitating conditions, then we can go ahead
and with the help of leading pioneers in the field of Pharmacology,
we can design drugs which would mark a permanent cure.


Also we truly believe that the high cerebrospinal fluid pressure (
pressure required to maintain an equal flow for cerebrospinal fluid
around the brain and spinal cord) could be a factor behind  certain
issues related with chronic fatigue syndrome. So as you would
imagine, our whole aim with this chronic fatigue syndrome study is to
find out the neurological basis for this disorder. With that aspect
we arrange lumbar puncture procedure to measure the cerebrospinal
fluid pressure and to collect 20 ml of cerebrospinal fluid for
proteomic analysis. The lumbar puncture is done under the
Interventional neuroradiology with Fluoroscopic guidance, by a
Neuroradiologist at our Hospital

We also do a bunch of other tests like allergy skin tests, Capsacin
skin tests, 18 point tenderness tests, Pulmonary function tests, Hand
grip exercise test. 

As far as the lab tests are concerned (Blood tests and CSF lab
tests), you would receive these test results in 10 days. We pay $400
as a financial compensation and we do provide free parking. If you
are form a different state other than, Maryland, Virginia, DC, then
we would try our best to arrange your accommodation, depending upon
the available dates with our clinic openings.

I really appreciate your eagerness in reading the whole e-mail. The
main reason for this e-mail is to look for people who are suffering
with Chronic fatigue syndrome, Fibromyalgia, Multiple Chemical
sensitivity, Irritable bowel syndrome, Interstitial cystitis.
Without
participants( both chronic fatigue, fibromyalgia patients and healthy
controls) for our study the study will not progress and enough
knowledge related with these conditions will not be gained by us. We
are strongly determined to serve the needy.

Please try to make a search for Dr James N Baraniuk MD
(Rheumatologist, Allergist, Immunologist) and you will get an idea
about his different ground breaking work in conditions like Chronic
fatigue syndrome and Fibromyalgia.

If you are interested, or you know anyone who would be interested in
our study, please contact me. I would be very happy to explain more
about the study.

Thanks a lot. Have a great day

Dr Ravindran

202 687 8231 (work)
240 491 7667 (cell)
cfsresearch@georgetown.edu
  

More on the Canadian Consensus Document

Why the U.S. needs the Canadian Consensus Document

MAY BE REPOSTED IN FULL

Twenty years ago, the U.S. CDC concluded that the disease breakout at Incline Village, NV, and other similar outbreaks around the nation, was not Epidemic Neuromyesthenia (as Myalgic Encephalomyelitis, or M.E., was called in the U.S.), but a new disease entity entirely.  CDC epidemiologist Ian Holmes and some members of a committee that had met the previous year on the subject published an article naming the “new” disease chronic fatigue syndrome (CFS), insisted it was not chronic Epstein-Barr Virus (mono or glandular fever), and gave it a definition that looked a lot more like EBV than the disease still known as M.E. in the UK.  [The definition of M.E. from Dr. Melvin Ramsay’s textbook on the disease can be found here:  http://www.cfids-me.org/ramsay86.html]

In the meantime, in Europe, the World Health Organization (WHO) had published its tenth revision of the International Classification of Disease (ICD-10).  By the early 2000’s, every major nation had adopted ICD-10, except the U.S., which is still on ICD-9.  In ICD-10, both M.E. and CFS are coded together at G93.3 in the chapter on neurological diseases. 

After Canada adopted ICD-10, the National ME/FM Action Network of Canada brought together a committee for a consensus document to help physicians diagnosis and treat the disease ME/CFS.  As a group, the clinicians in the group had treated over 20,000 patients.  The Canadian Consensus Document that resulted was published in the Journal of CFS in 2003.  A summary pamphlet is available online:
http://www.mefmaction.net/documents/me_overview.pdf .

Two years ago, the CDC went all-out on a publicity campaign that (finally) stated the disease was significant and debilitating.  Some of us thought that perhaps they were going to join the 21st Century.  But the CDC went in a different direction.

Using a prevalence estimate closer to that of Britain’s Simon Wessely than the 1999 estimate by U.S. researcher  Leonard Jason, they even suggested that there might be as many as four million victims in the U.S. alone, quite a jump from their estimate of 500,000 at an AACFS conference in Boston, 1998.  An increase in eight-fold in eight years?  Either this is a much more contagious illness than CDC will admit – or there is something wrong with the way the CDC goes about diagnosing the illness in the first place.

Along with the new definition came a new set of pamphlets for physicians:  the CDC’s “CFS Toolkit for Professionals,” available on the web at:
     http://www.cdc.gov/cfs/toolkit.htm

It was pretty and respectful, but in the end had little practical information to offer physicians or patients.  According to the CDC, “there is no diagnostic laboratory test or biomarker for CFS.” [CFS Overview].  They offered – as they have offered since the early 1990s – antidepressants and pain killers.  But now they also added the solution British psychiatrists offer overseas:  There is an entire pamphlet on CBT (cognitive behavior therapy).   CBT is a type of behavioral therapy that is used in everything from drug addiction to major mental disorders.  The CDC is not suggesting simple counseling to help the patient accept his or her limitations or live within one’s “energy envelope”  – to the contrary, the program assumes the patient accepts a higher degree of limitation than really exists, and needs to be taught or shown how to try to do more.  The CDC’s belief that improvement is in the willpower of the patient, if the patient only knew how to use it, can be found in the final sentence of the pamphlet on “Managing Activity”:
“A subset of people with CFS are so severely ill that they are largely housebound or bedbound … Hand stretches and picking up and grasping objects may be all that can be managed at first.  Gradually increasing activity to the point patients can handle essential activities of daily living – getting up, personal hygiene and dressing – is the next step.”
- CFS Toolkit, “Managing Activity”

     It apparently has not occurred to the CDC that these patients might be so severely afflicted because they are beset by one or more viruses or other microbes, or have an abnormal immune system that has left them vulnerable to diseases.  Who in their right mind would suggest a program of graduated exercise for a person who had viral encephalitis?  And yet, that is what patients with HHV-6 have.  The problem is that the CDC does not accept the possibility that CFS patients are ill with HHV-6, or enteroviruses (coxsackie viruses, polio viruses), or mycoplasma, or environmental toxins such as black mold.  If the solution is behavioral, we must assume, so must be the problem.
 
     In summary, no matter what the CDC statements imply, when it comes to actually dealing with patients, the treatments are almost entirely psychological:  antidepressants, Cognitive Behavior Therapy, and Graded Exercise Therapy.  The only non-psychological treatment offered is painkillers.

     With fewer and fewer doctors able to offer anything of use to their patients disabled with ME or CFS in the United States, we cannot wait for a solution far in the future.  There already exists a set of criteria for diagnosing, testing, and treating patients with this disease:  The Canadian Consensus Document for ME/CFS. 

     The bibliography from the Canadian Consensus Document makes it clear that the barrier to treatment and care for patients in the U.S. is not scientific:  it is political.  So must the remedy be. 
 
     Join the movement to Adopt the Canadian Consensus Document in the U.S.  To begin, go to: 

http://www.cfids-me.org/index.html#consensus

Mary Schweitzer
Email:  me-cfs@comcast.net
###
How to participate in the Canadian Consensus Drive

MAY BE REPOSTED IN FULL

The U.S. CDC has had two decades to get our disease right.  They have not.  The barrier is not scientific or medical, but political.  The Canadian Consensus Document for ME/CFS can begin showing physicians how to treat patients right now.  It addresses the complexity of the illness, offers tests and treatments, and contains a medical bibliography from refereed professional journals.  The authors, as a group, have treated over 20,000 patients. 

It’s time for the U.S. to adopt the Canadian Consensus Document (Journal of CFS, 2003). You can find a summary pamphlet at:
http://www.mefmaction.net/documents/me_overview.pdf

If you want to join the movementfor the U.S. to adopt the Canadian Consensus Document, just click here to get started:
     http://www.cfids-me.org/index.html#consensus

The petition, in downloadable form, is here:
     http://www.cfids-me.org/petition.html

Since Congress pays more attention to petitions with real signatures on them, you can copy and print out a petition and then send it back to me at this address (even if there’s only one signature):
     Consensus Petition
     P.O. Box 189
     Elk Mills, MD 21920

Signed petitions can also be FAXED.  Write me at me-cfs@comcast.net  for a number.

If downloading and signing a petition is too difficult, it’s okay to copy the petition into an email, add “I agree to this” and “sign” your name.  Then send it back to me at:
     intlconsensus@comcast.net

Be sure to email your Congressman and Senators (the ones from your jurisdiction; they don’t generally take emails from outside their jurisdiction) – a sample email letter and instructions for finding their addresses are here.  (You can also FAX them.)
     http://www.cfids-me.org/petitionemail.html

And if you want to compare the Canadian Consensus Document with the CDC’s own set of pamphlets, the “CFS Toolkit for Professionals”, go here:
     http://www.cfids-me.org/petitiondrive.html

Mary Schweitzer
Email:  me-cfs@comcast.net

 

Patient Stories

Phoenix CFS has been collecting patient stories for their website.  Here's a link to one, and from there you can navigate the site to the others:

Linda  very poignantly talks of the ups  and downs of a 20 year
journey with severe ME/CFS that began in college.   Fiercely
committed to advocacy and improving the lives of chronic fatigue
syndrome (ME/CFS) patients she also provides a resources list at the
end of her story.

Linda's Story: http://phoenix-cfs.org/StoryMacdonald's.htm

FAILURE TO DIAGNOSE COSTS TAXPAYERS

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
       >>>> Help ME Circle <<<<
>>>>    4 April 2008   <<<<
Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by AVG AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

Quote from below:

*..Unfortunately, some providers view patients with
a myriad of complaints common in chronic
illnesses. such as fibromyalgia, chronic fatigue
syndrome, multiple chemical sensitivity, and other
multi-system illnesses, as psychosomatic if the
cause is not immediately found.

It is not uncommon to have colon cancer and be
told it´s "anxiety". Nor is it uncommon to have
Crohn´s disease and be told it´s "malingering".

Prescribing psychiatric drugs that make the
patient´s condition worse draws out pain and
suffering while increasing the societal cost
burden..*

~jvr

``````````
http://www.americanchronicle.com/articles/57370

American Chronicle
Friday, April 04, 2008

Failure to Diagnose Fibromyalgia Costs
Taxpayers and Overburdens the Healthcare System
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Lourdes Salvador
April 02, 2008

Fibromyalgia is a disorder classified by the presence
of chronic widespread pain, often accompanied by
fatigue.

Have you ever wondered what fibromyalgia costs
society and sufferers? Researchers at Ghent
University in Belgium did and what they found is
alarming!

Costs before diagnosis were compared to later costs,
assuming the diagnosis had never been made.
Failure to diagnose true cases of fibromyalgia
increases costs in excess doctor visits,
investigations, and prescriptions.

The highest cost was for tests and imaging, followed
by pharmaceuticals, referrals, and repeated office
visits. These costs go beyond the fibromyalgia
patient to society as a whole.

Since insurance providers are often burdened with
the costs, insurance rates may increase for everyone.
Longer waits to see busier doctors also impacts
everyone when fibromyalgia sufferers are improperly
diagnosed.

Therefore, the fibromyalgia diagnosis reduces
resource useand increases savings.

Thinking logically, this would apply to nearly any
medical condition. If a person is not feeling well,
they will keep seeking answers, additional tests, and
medical opinions in order to get better. All too often
those who are high users of medical care are viewed
as whiners, complainers, attention seekers, or
malingerers, when in reality a medical condition is
undiagnosed. Once the condition is diagnosed, costs
go down, treatment ensues, and the patient returns
to a more productive life. Everyone wins.

Unfortunately, some providers view patients with a
myriad of complaints common in chronic illnesses.
such as fibromyalgia, chronic fatigue syndrome,
multiple chemical sensitivity, and other multi-system
illnesses, as psychosomatic if the cause is not
immediately found. It is not uncommon to have colon
cancer and be told it´s "anxiety". Nor is it uncommon
to have Crohn´s disease and be told it´s
"malingering". Prescribing psychiatric drugs that
make the patient´s condition worse draws out pain
and suffering while increasing the societal cost
burden.

Instead, medical providers need to be more aware of
the various causes of symptoms and also be more
open minded to ruling out all possible causes and
listening intently to the patient with an open and
believing attitude.

Patients should to do their own research and
advocate for themselves. Disorders like fibromyalgia
need not impact life more than necessary or cost
society burdensome amounts.

Reference

Annemans L, Wessely S, Spaepen E, Caekelbergh K,
CaubPre JP, Lay KL, TaVeb C. Health economic
consequences related to the diagnosis of
fibromyalgia syndrome. Arthritis Rheum. 2008 Feb
29;58(3):895-902.

Copyrighted © 2008 MCS America

~~~~~~~~~~

There's also the long-term cost to taxpayers.  Despite a prior diagnosis of a physical illness and the specialist's recommendation that the first treatment should be to improve the quality of sleep, I was given anti-depressants, and when I said they didn't work, I was given different anti-depressants.

As a result of the PCP's stubborn refusal to accept the expertise of the specialist as to the correct diagnosis and medication, I didn't recuperate and go back to work in a few months as I had hoped, and as had happened when the specialist treated me ... I deteriorated to the point that I'm told I'll never work full-time again.  It's taken a few years, but I've now recuperated to the point that I can work a whopping 6-10 hours a week!

When you pay your taxes this year, be sure to thank that arrogant doctor, and many others like him, who have caused you to pay disability benefits/Medicaid/welfare to patients who could have gone back to work if they'd gotten the right treatment in the early phase when it could help.  Instead of them supporting themselves, you're going to support them the rest of their lives because they didn't get the right treatment/diagnosis and are now permanently disabled.

It doesn't even have to be something as controversial as CFS/fibromyalgia -- according to Dr. Groopman's book, people have nearly died of cancer because doctors went for the easy answer "stress" or "anxiety" instead of investigating further.  (When I finally got the referral for a colonoscopy, years after my symptoms started and with a family history of colon cancer that should have made that a first guess, the GI doctor asked "what took you so long to get this test?" and when I said I couldn't get a referral, he said "I hope I find something so you can sue them for all they're worth!")

And, lo and behold, once I had a doctor who took my complaints seriously and looked for a PHYSICAL cause for them instead of stereotypes, and gave me the right pills instead of the brush-off, I started to improve.  Too little, too late, though.

Plus, I need to have quite a few teeth pulled because the other medical group let me throw up every day for years, and all that stomach acid rotted the enamel.  It was easier for them to tell me I was throwing up before dawn because I'm allergic to the milk that I'm going to drink with breakfast 2 hours later, than to think through that it's probably not caused by food if it's happening 12-18 hours after you last ate, and you can't have an allergic reaction to what you haven't eaten yet.  Again, the doctor who listened instead of assuming solved the problem in seconds ... if I hadn't eaten in 12-18 hours, then my stomach acid had nothing to work on but my stomach.  A couple antacids taken at bedtime solved the problem for $3, but only after the damage was done to my teeth. 

Thursday, April 3, 2008

Etiology of CFS

Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses
Using a National Birth Cohort Study.

Journal: Psychosom Med. 2008 Mar 31 [Epub ahead of print]

Authors: Harvey SB, Wadsworth M, Wessely S, Hotopf M.

Affiliations: Institute of Psychiatry (S.B.H., S.W., M.H.), King's
College London, London, UK; Medical Research Council's National
Survey of Health and Development (M.W.), Department of Epidemiology
and Public Health, Royal Free and UCL Medical School, London, UK.

PMID: 18378866


Objective: To review the etiology of chronic fatigue syndrome (CFS)
and test hypotheses relating to immune system dysfunction, physical
deconditioning, exercise avoidance, and childhood illness
experiences, using a large prospective birth cohort.

Methods: A total of 4779 participants from the Medical Research
Council's National Survey of Health and Development were
prospectively followed for the first 53 years of their life with >20
separate data collections. Information was collected on childhood and
parental health, atopic illness, levels of physical activity,
fatigue, and participant's weight and height at multiple time points.
CFS was identified through self-report during a semistructured
interview at age 53 years with additional case notes review.

Results: Of 2983 participants assessed at age 53 years, 34 (1.1%, 95%
Confidence Interval 0.8-1.5) reported a diagnosis of CFS. Those who
reported CFS were no more likely to have suffered from childhood
illness or atopy. Increased levels of exercise throughout childhood
and early adult life and a lower body mass index were associated with
an increased risk of later CFS. Participants who later reported CFS
continued to exercise more frequently even after they began to
experience early symptoms of fatigue.

Conclusions: Individuals who exercise frequently are more likely to report a diagnosis of CFS in later life. This may be due to the direct effects of this behavior or associated personality factors.
Continuing to be active despite increasing fatigue may be a crucial step in the development of CFS.

* * *

This is something we've said for years: those of us who are Type A personalities dragged ourselves out of bed the first day we felt a little better and tried to go back to our normal life before we were truly well.  In 1987, I went back to work the day after I was first able to sit propped up with pillows for an hour.  With no car, "going back to work" required me to walk about 6 blocks uphill from the bus stop to the office, and about 4 blocks from the bus stop to home.  A pretty stringent exercise regimen for someone who's not yet over a serious illness.  Maybe if I had waited another week or two to get back my strength before I undertook that much exercise on a daily basis, I might not have CFS in the first place.  But I had work to do, and I was out of sick days, so I went, never dreaming that the virus I had was not just a particularly nasty case of stomach flu.  As a dancer, I was used to pushing through exhaustion, and that discipline was likely my downfall.

The question that will always be asked -- and never answered -- is, if I had taken a week off in January 2000 to get well instead of dragging myself to work even as I got sicker, would I have wound up in this years-long relapse?  In retrospect, I suspect that giving in and taking to my bed for a week may have been a better decision than continuing to "do the responsible thing" and go to work.

As time went on, I could no longer walk the 2 miles to work and had to take the bus.  At the end, even the 4 blocks from the bus stop to my desk was so exhausting that I had to rest for an hour before I did anything.  Medically, it is impossible to decondition that far that fast; the problem is not, as some doctors have postulated, "deconditioning" but the effects of a virus exhausting the body's resources until the patient collapses.

Philosophy

As a teen, I had a poster in my room with that saying on it. Little did I know that it was preparing me for this stage in my life.

Without the assistance of Modern Medical Science, there is nothing I can do to change the fact that I have CFS. They have to come up with something to treat the virus – all the positive thinking in the world is not going to make it go away. So, I have to have the serenity to accept that that is something that I cannot change; I’m going to feel this way for a long time, and I have to rely on someone else to do the things that will change that.

But there are things that I can change.

I have the courage to write letters and e-mails to legislators who can create funding for proper research and mandate physician education so that no one else ever deteriorates because their doctor is so uninformed that he thinks CFS is just another name for depression. I have the courage to attach my real name to letters to the editor published around the world, educating the general public that Chronic Fatigue Syndrome is not a joking matter. I have the courage to run this blog and an online support group to educate as many people as I can. I have the courage to order my Christmas cards from CFIDS.org and enclose a request for research donations with them.

And I have the wisdom to know that there are some people out there who will not change their minds about CFS, no matter how many research studies I post in this blog proving biological underpinnings. They’ll stubbornly cling to their notion that I’m lazy and/or crazy even after the whole rest of the medical community accepts that this really was caused by a nasty virus and not by some personality flaw.

Wednesday, April 2, 2008

TOMORROW ONLY -- Fibro Web Seminar

 If you would like to contact us, please send an e-mail to info@bulldogsolutions.com .


    
    
              Treating Fibromyalgia and Chronic Fatigue: Effective Options for a Hopeful Future


            Renew Your Body and Reclaim Your Life



            For millions of people who have Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS), pain and fatigue are constant companions. If you are suffering or have a loved one or friend who is suffering from FM or CFS, you know how feeling sore, exhausted and possibly depressed can radically alter your life.

            If you suffer from these disorders, feeling better can seem like an unattainable dream. Diagnosis is difficult, and many treatments only address symptoms, not the underlying causes. In addition, when most doctors have only a few minutes to spend with you during a visit, managing these complex, often misunderstood conditions can be confusing and frustrating. But there are options for you that go beyond what many physicians offer. FM and CFS specialists have developed comprehensive, holistic, integrated treatments to help people like you start to feel good again.



            Join us for a complimentary Webinar in which you'll have the chance to chat live with sought-out experts on FM and CFS. They will discuss these disorders and will detail proven and emerging treatments that have improved the lives of thousands of people suffering from exhaustion and pain. You'll learn about a unique treatment protocol that addresses the underlying physiological factors of these disorders. In addition, a Fibromyalgia patient will share their struggles and explain how treatment has improved their health significantly and helped them begin to reclaim their life.

            You will learn :

              a.. Why traditional doctor visits may be insufficient for FM and CFS treatment


              b.. The importance of the right kind of testing in FM diagnosis and treatment


              c.. The real reasons behind Chronic Fatigue Syndrome - what your body is really doing to make you tired


              d.. The link between FM/CFS and immune deficiencies and infections


              e.. How a holistic approach, encompassing medical treatment, nutrition, exercise and stress reduction, can help get you back to your life


           
                
                
                              WEBINAR DETAILS 
                              Event Title:
                              Treating Fibromyalgia and Chronic Fatigue: Effective Options for a Hopeful Future

                              Date:
                              Thursday, April 3, 2008

                              Time:
                              7:00 PM Eastern
                              4:00 PM Pacific

                              Duration:
                              90 Minutes

                              Featured Speakers:
                              Dr. Arlyn LaBair
                              Co Assistant Medical Director
                              Fibromyalgia & Fatigue Centers of Denver

                             Dr. Andre Garabedian
                              Co Assistant Medical Director
                              Fibromyalgia & Fatigue Centers of Philadelphia

                              Moderator:
                              Jennifer Slencak, RN
                              National Clinical Services and Quality Assurance Director
                              Fibromyalgia & Fatigue Centers
                            
                            
                      
                
                

                        Refer a Friend >> 
                
                   
                  Can't make the live event?
                  Register now and after the event you will receive an e-mail with the complimentary presentation content. 
          
    

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           About Fibromyalgia and Fatigue Centers, Inc.
           

FM Update from Immune Support

 Last Week's Question 
            Do you feel safe talking truthfully about your illness or symptoms with your Doctor?

            Yes: 43%   No: 57%  



         FEATURED ARTICLE April 2, 2008
          
              
            Q&A with ME/CFS & FM Research Reporter Cort Johnson (From Mar 7 Chat)
            See why readers say Cort "brings technical information down to a level most of us need to better understand the many issues of ME/CFS/FM." And how we can "unite to persuade our governments to focus on research."

          

                    ARTICLES, EVENTS, SOLUTIONS More new articles 
          
              
            The Vitamin B-12 & Fibromyalgia Connection
            In the search for a unifying theory of ME/CFS and Fibromyalgia, two models have emerged. B-12 - a complicated and misunderstood vitamin - is integral to both of them, and may hold a key to better health for many.

            Pain level in Fibromyalgia linked to neurotransmitter glutamate
            Elevated glutamate levels are found in FM patients; this study links pain reduction to glutamate reduction in the brain's pain-interpreting center (insula) & points to a potential biomarker.

            Your Immune System and How it Works
            A clear and simple explanation of the immune system - Dr. William Collinge lays out the roles of killer cells, helper cells, cytokines, antibodies, and much more, as part of a larger system he calls "the healing system."

            Announcing a Live Chat Q&A with Dr. William Collinge - Friday, April 25, from 3 to 4 pm Pacific Time

            William Collinge, PhD, MPh, is a pioneer in helping Fibromyalgia patients and their families cope with the stresses of chronic illness. He's an expert in how to integrate psychological, spiritual, and physical therapies in healing.

          

                    RESEARCH ABSTRACTS More new abstracts 
          
              
            FM patients get less stage 2 sleep - and duration correlates with pain
            Sleep researchers at three universities conclude that measurement of time in stage 2 sleep may be predictive of pain level in Fibromyalgia.


            'Dopamine Theory' doctor finds another piece of the FM puzzle
            Dr. Patrick B. Wood, MD (Featured in the DVD "Show Me Where It Hurts") identifies another FM pain-related central nervous system clue.

          

      

                    LETTERS FROM OUR READERS
          
               Comments & Suggestions
                  · Tax info for disabled & seniors
                  · Improved energy & flexibility
                  · Migraine/headache poetry contest
                  · TV program a first for FM
                  · FM discussion without shame
                 Q & A Session
                  · Depressed - your advice?
                  · Armour Thyroid?
                  · How supplements interact?
                  · Which form of B-12?
                  · Adult stem cell healing?
                
                  Questions? Comments? Please share your thoughts with us! Send us a letter  
          

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Dr. Collinge - Live Chat 4/25

This message has been sent to you by antoinette.

dr.collinge will be on the live chat on immunesupport on april 25th/08. you can visit him online at www.collinge.org for more. ...

Please read the following Health Related Article from provided by:


ImmuneSupport.com

Article Entitled: Principles of Healing in Fibromyalgia and ME/CFS by William Collinge, PhD, MPh*
ImmuneSupport.com

03-31-2008 In more than a decade of working with people with these illnesses in self-healing retreats and home-based programs, I have seen ten principles emerge which seem to lay a foundation for exceptional healing.

I've been heartened and inspired to see people who follow these principles make the transition from a cyclical pattern of unrelenting chronicity into a process of gradual improvement over time. Healing from CFS and FM is possible - regardless of how long you have been ill. It is, however, a long, slow and unpredictable process.


1. Perspective on medicine. Whatever medical support you use - conventional or alternative - see it as secondary, and what you can do to create the optimal conditions for self-healing as primary.


2. Illness as teacher. You did not cause your illness, but it is a call to re-evaluate your priorities and master some valuable life lessons. See your disease as an opportunity for positive change. People who find meaning in their illness have better medical outcomes.


3. Meditation. Develop a daily practice of meditation. Hundreds of studies prove its effects in reducing pain and healing the nervous system, circulatory system, immune system, digestive system, and hormonal system. It will also help you attune to inner guidance and inspiration.


4. Radical simplification. Reduce or eliminate television, news, noise and other agitating sources of neurological stimulation. Let your nervous system be at peace. Practice the art of being simple and present by asking yourself, "What really matters in this moment?"


5. Exercise. Exercise stimulates your vital energy which is needed for healing. However, exercise must be gentle, non-impact, and not cause pain. Aerobic exercise such as walking, cycling or movement in water is helpful, as well as practices such as tai chi and chi kung. De-conditioning is common in people with CFS or FM who avoid exercise for fear of aggravating their symptoms, and this causes a further downward spiral of vitality.


6. Practice loving kindness. Frequently stop, close your eyes, and bring your awareness to your heart. Summon feelings of appreciation, gratitude, compassion and love - for yourself and others. This will cause body-wide changes, including the relaxation response, that can reduce the severity of symptoms.


7. Joy and passion. The subtle energy behind all healing is stirred by joy, pleasure and passion. Find ways to nourish your soul whenever possible, whether through music, art, creativity, being in nature, or whatever arouses these feelings in you.


8. Inspirational breathing. In my retreats for people with CFS and FM, as well as in the home-based programs, patients have reported their pain completely gone for a time after using breathing exercises - particularly a technique I call Evocative Breath Therapy, which involves a blend of breathing exercises, music, and guided imagery.


9. Connecting. The social isolation due to physical limitations of CFS and FM is one of the greatest challenges. Yet, research shows that supportive relationships promote physical healing. Invest in relationships that support you, and practice saying "no" to those that don't.


10. Letting go of the outcome. It is a paradox that when we let go of striving for an outcome, an inner relaxation arises that enables our healing responses to work at their maximum. Replace your focus on future outcomes with an attitude of trust that your highest good will prevail.

___
* Reproduced with permission of the author. Dr. Collinge consults with healthcare professionals and the lay public on the emerging paradigm of integrative healthcare. Visit www.collinge.org  to read more about his extensive work and upcoming trials in this area.

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any disease. It is very important that you make no change in your healthcare regimen without researching and discussing it in collaboration with your professional healthcare team.



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B-12 and CFS


IS ANYONE TAKING B-12 SUPPLEMENTS AND ARE THEY WORKING FOR YOU?...

Please read the following Health Related Article from provided by:


ImmuneSupport.com

Article Entitled: The Vitamin B-12 - ME/CFS/FM Connection: A Key to Improved Health for Many? by Dr. Dana Myatt, NMD, and Mark Ziemann, RN*
ImmuneSupport.com  

03-22-2008 What we know as vitamin B-12 is really a collection of four different cobalt-containing molecules, each with distinct and crucial roles to play in the body.
Triggers thought to initiate ME/CFS and Fibromyalgia (FM) are numerous and varied. Because these diseases have consistent symptoms, researchers believe there are biochemical abnormalities common to all sufferers. If shared biochemical aberrations can be found, treatments directed toward these aberrations could hasten improvement for those affected.


In the search for a unifying theory of ME/CFS/FM, two models with much scientific credibility have emerged. Research shows that a connection between ME/CFS/FM, Lyme disease, Multiple Chemical Sensitivities (MCS), and Gulf War Syndrome - and an equally complicated and misunderstood vitamin - may be a key to improved health for many sufferers.


The Vitamin B-12 - ME/CFS/FM Connection


In searching for common biochemical threads among ME/CFS/FM patients, researchers have noted numerous similarities between vitamin B-12 deficiency and symptoms of ME/CFS/FM and other multi-symptom diseases.


In fact, most respected ME/CFS/FM researchers and physicians - including Drs. Paul Cheney, Charles Lapp, Kenny DeMeirleir, Jacob Teitelbaum, and Martin Pall - consider vitamin B-12 a mainstay of treatment.


Symptoms of Vitamin B-12 Deficiency


Vitamin B-12 is required for manufacture of red blood cells, the myelin sheath surrounding nerve cells, and DNA. In its various forms, B-12 is required in numerous other physical functions. Deficiencies can have widespread effects.


a.. Energy. Even minor deficiencies of vitamin B-12 can cause anemia, fatigue, shortness of breath and weakness.

a.. The Nervous System. Deficiencies of B-12 can cause neurological changes including numbness and tingling in the hands and feet, balance problems, depression, confusion, poor memory and Alzheimer's-like symptoms.

a.. The Gastro-Intestinal System. B-12 deficiency can cause decreased appetite, constipation, diarrhea, and abdominal pain.

a.. The Immune System. Vitamin B-12 is necessary for normal functioning of white blood cells, helps regulate Natural-Killer T-cells, and prevents chromosome damage.

a.. The Cardiovascular System. Vitamin B-12 participates in the conversion of homocysteine to methionine. Elevated homocysteine levels are a known independent risk factor for heart attack, stroke and thrombosis

Vitamin B-12: Which Form Is Best?


What we know as vitamin B-12 is really a collection of four related but different cobalt-containing molecules. Each form plays a distinct role in the body.


Hydroxocobalamin - a unique form of B-12 that is essential in quenching excess nitric oxide (NO), the precursor to peroxinitrite (ONOO-). Hydroxocobalamin also participates in detoxification, especially cyanide detoxification.


Methylcobalamin - the most active form of vitamin B-12, is a required nutrient in the Methylation Cycle. It protects the nervous system by regulating glutamate-induced neuronal damage and has been shown to improve sleep quality.


Adenosylcobalamin (dibencozide) - another active form of vitamin B-12, is essential for energy metabolism, normal myelin sheath formation, and nucleoprotein synthesis. Deficiencies are associated with nerve and spinal cord degeneration.


Cyanocobalamin - the most common form of B-12 found in nutritional supplements, is a synthetic not found in nature. It has the lowest biological activity and must be converted in the liver to more biologically active forms. However, it is required to balance hydroxocobalamin in performing NO-quenching functions.


Is ME/CFS/FM a Vitamin B-12 Deficiency?


Although B-12 deficiency symptoms share many commonalities with ME/CFS/FM, researchers do not suggest that ’Chronic Fatigue Syndrome’ and related multi-system diseases are simply a vitamin B-12 deficiency.


Instead, two biochemical abnormalities, each heavily involved in ME/CFS/FM and other multi system diseases, are both related to forms of vitamin B-12 deficiency.


The Nitric Oxide/Peroxynitrite (“No, Oh No!”) Model of ME/CFS/FM


ME/CFS/FM is thought to be triggered by many different factors. Viral, bacterial or other infections, physical or psychological trauma, chemical exposure or other stressors often precede disease symptoms. In this regard,ME/CFS shares similarities with Fibromyalgia, Lyme disease, Multiple Chemical Sensitivities, and Gulf War Syndrome.


Noted researcher Dr. Martin Pall observed that virtually every initiator of ME/CFS/FM and other multi-system diseases increases either nitric oxide (NO) or the superoxide radical (O2-) or both. These quickly react to form peroxynitrite (ONOO-), a potent oxidant capable of damaging a wide range of biological molecules.


There is increasing evidence to support this pathway as a primary underlying abnormality in ME/CFS/FM and Lyme disease, Multiple Chemical Sensitivities (MCS), and Gulf War Syndrome. [For more on Dr. Pall's research, see “Nitric Oxide Cycle Theory: Will It Explain ME/CFS, FM, and Other ‘Unexplained’ Illnesses?”]





KEY to Figure 1: The NO/ONOO- Cycle


Nitric oxide (NO), a naturally occurring "messenger molecule" in the body, is a pro-oxidant and free radical. Depending on amount and where it is released, NO can be either beneficial or toxic.


Superoxide (O2-) is a potent free radical.


OONO- (peroxynitrite) is a powerful oxidant formed when NO and O2- react with each other. Peroxynitrite is known to damage cells through a variety of mechanisms. OONO- acts through multiple mechanisms to regenerate NO and O2-. Hence, a “vicious cycle” of damage creating more damage begins.


This runaway NO/ONOO- cycle is also associated with increased perception of pain.


Hydroxocobalamin Breaks the NO/ONOO- Cycle


Hydroxocobalamin, a unique form of vitamin B-12, is a potent nitric oxide (NO) scavenger and the ONLY form of vitamin B-12 that neutralizes the NO molecule. Hydroxocobalamin is the form of vitamin B-12 needed to break the NO/ONOO- cycle of oxidative damage.


The Methylation Cycle and ME/CFS/FM


The Methylation Cycle is a biochemical pathway in the manufacture of DNA, RNA, phospholipids (myelin sheath of nerves), neurotransmitters, adrenal hormones and over 100 enzymes. The Methylation Cycle is also required for numerous detoxification reactions.


Defects in the Methylation Cycle are a second proposed mechanism in the development of ME/CFS/FM.


Methylation defects reduce detoxification ability and cellular energy production, decrease serotonin, dopamine, melatonin and other neurotransmitter production, decrease adrenal hormone production and increase levels of toxic homocysteine.


The methylcobalamin form of vitamin B-12 is required in the Methylation Cycle. If any one step in the Methylation Cycle fails, the entire cycle fails.


Who is Vitamin B-12 Deficient and Why?


Irritable bowel syndrome (IBS), affecting some 80% of ME/CFS/FM patients, is a major cause of B-12 deficiency.


A much larger segment of the general population is vitamin B-12 deficient than previously thought. Recent studies indicate that up to 78% of seniors are deficient.


Vitamin B-12 deficiencies often appear so slowly as to go unnoticed, and blood tests miss early deficiency states at least 50% of the time.


Vitamin B-12 Is Best Obtained From Supplements


Food is not a significant source of vitamin B-12. Further, absorption is hampered by low stomach acid, IBS, bacterial overgrowth of the small intestine and many other conditions.


The U.S. Institute of Medicine recommends that adults over 50 obtain their vitamin B-12 from supplements.


Oral Vs. Injectable: Which Is Best?


Vitamin B-12, once administered by injection, can now be obtained through oral supplementation. Oral vitamin B-12 is as effective as injection in treating B-12 deficiencies.


Conclusions and Recommendations


Suffering from ME/CFS/FM and related multi-system diseases is widespread. Current research provides new insights into the underlying mechanisms of these complicated illnesses.


The Nitric Oxide/Peroxynitrite (NO/ONOO-) and Methylation Cycles have emerged as two primary mechanisms for ME/CFS/FM, Lyme disease, Multiple Chemical Sensitivities, and Gulf War Syndrome. Deficiencies of hydroxocobalamin and/or methylcobalamin play a significant role in these biochemical processes.


Since vitamin B-12 (especially hydroxocobalamin and methylcobalamin) offers such potential benefits for ME/CFS/FM sufferers, without known risks, it seems prudent for those suffering with ME/CFS/FM or other related multi-system illness to consider taking a supplement containing these two unique forms of vitamin B-12.


(A version of this article including footnoted citations of more than 70 sources will be available later on Immunesupport.com.)

___
* Dr. Dana Myatt, NMD, is a practicing naturopathic family physician, educator, author, and speaker with a special interest in nutrition. She lectures widely to medical and lay audiences, and hosts a website. Mark Ziemann, RN, Dr. Myatt’s husband and collaborator, is also an educator, author, and speaker specializing in holistic nursing practice and patient education.


Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.



Post or Read Comments on this piece.



ImmuneSupport.com
-Your Fibromyalgia Chronic Fatigue Syndrome Chronic Pain Specialist-
Treatment Research
Vitamins Supplements
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Sincerely,
Your Friends at ProHealth, Inc.
Patient Owned, Dedicated to research.
Phone 805-564-3064
Fax 805-965-0042
http://www.ProHealth.com
"empower people to take control of their health
by providing comprehensive health resources,
current treatment information, quality health products
and advocating for the rights of the patient."

Monday, March 31, 2008

Encephalitis lethargica

http://news.bbc.co.uk/1/hi/health/3930727.stm

Came across the above article after strolling through the ICD-10CM. 
Delighted that Professor John Oxford, Drs. Russell Dale and Andrew 
Church were open minded enough to study this illness and not blame it 
on hysteria.

  How many ME patients have been tested for the variant of 
streptococcus bacteria, diploccoccus, which can cause the massive 
immune reaction which can cause Encephalitis lethargica?

Some practitioners, students of the "youngest science", might want to 
re-think their insistence on Evidence Based Medicine.  Why aren't the 
brains of deceased ME sufferers being studied as a matter of course?  
Who can say for certain that ME is not related to Encephalitis 
Lethargica.  It's the easiest thing in the world to postulate  that 
some conditions are caused by 'hysteria'.  No Evidenced Based proof 
is needed for that conclusion.
  All that is needed is an absence of 
evidence to the contrary.  Absence of evidence there will be if the 
medical establishments, increasingly run by governments, refuse to 
test individuals with ME.

Perhaps there is a different way to treat those who fair poorly with 
graded exercise and CBT. Instead making the ad hoc decision that the 
problem is is that the patients "think" they have a 'real 
illness'  ( a very Victorian approach), research funding should be 
given to those scientists who have found significant abnormalities in 
patients with ME.

The current situation, where in doctors are allowed - even encouraged 
- to blame the victims of this scourge for their maladies will be 
looked at in wonderment in the not to far distant future.  
Governments which support these misguided medics should look to 
history.  The scenario has been played too many times.

Jean Harrison

* * *

AMEN!  Polio, MS, and AIDS, which were once thought to be psychological in origin, have been proven to have physical causes.  Eventually, CFS will also achieve the same status, and we will have a record of those who took the easy way out andblamed the patient, thinking there was no need to do any testing. 

Or who were afraid that if they did the tests the patient requested, they'd have to reconsider their own "aberrant illness beliefs", and face the fact that this is not a hysterical, hypochondriac woman, but an educated professional who is telling the truth that a rogue virus changed her life forever.

Disease makes dubious doctor a believer

Reply to "Disease makes dubious doctor a belliever", Huntsville Times,
Alabama, 25 March 2008 (link below my signature).

e-mail address for anyone who has a letter in them is letters@htimes.com

Cheers
John
drjohngreensmith@mefreeforall.org


*HuntsviIIe Times Letters*.

It's a shame that some doctors have to have a chronically disabling illness,
like M.E. (*Myalgic Encephalomyelitis*) or Fibromyalgia, themselves (*Disease
makes dubious doctor a believer, Huntsville Times, 25 March 2008*), before
they believe it exists, despite all the evidence there is already.

It is also a shame that some doctors and nurses, who have M.E., deny it or
hide it away for fear of disbelief or ridicule from their fellow
professionals, thus going without any support or treatment; suffer,
invisibly, in silence, thereby appearing to reduce the number of those
affected; become unemployed and even contemplate suicide.

Hopefully, Dr Bryan Evan's conversion will not only encourage belief,
vicariously, without unnecessary suffering but also promote research to
understand the cause and provide a cure for these illnesses which have
devastated so many lives.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

http://www.al.com/living/huntsvilletimes/index.ssf?/base/living/120643834717090.xml&coll=1

Disease makes dubious doctor a believer
Huntsville Times

Tuesday, March 25, 2008
By YVONNE BETOWT

Before suffering illness Bryan Evans wasn't sure CFS was real

Dr. Bryan Evans used to enjoy playing volleyball at the gym with friends a
couple times a week.

The Huntsville family practice physician often felt sluggish after seeing
between 30 to 40 patients a day at his southeast Huntsville office. But when
he stepped onto the volleyball court, the adrenaline rush restored his
energy.

"The only time I felt good was when I was playing volleyball, and I never
wanted to quit," he said.

But eventually that high began to wane as his body continued a downward
spiral. He suffered from excruciating muscle aches and pains, profuse
sweating and total exhaustion without exerting any energy, unexplained
weight loss and gain, skin rashes, headaches and a number of other
debilitating problems.

After countless tests and trips to several local specialists - an
oncologist, a cardiologist, rheumatologist, pulmonologist and an infectious
disease internist - with no definite diagnosis, Evans began to suspect he
had Chronic Fatigue Syndrome and/or fibromyalgia.

He was right about both.

Gradually, Evans was so tired and weak he could hardly get out of bed each
morning. After a shower, he had to return to bed for about 30 minutes to
muster enough energy to get dressed. He began cutting back his office hours,
thus reducing his workload - and his income.

He and his wife had divorced, leaving him in a state of turmoil, emotionally
and physically. Despite his vast knowledge of medicine, he was perplexed at
what seemed to be a phantom illness.

Finally, Dr. Dan Prince, a rheumatologist in Gadsden whose wife has
fibromyalgia, confirmed his suspicion.

"Initially I thought it was just a bad viral illness," said Evans, the
46-year-old father of two daughters. "I was just glad it had a name."

In 2002, he started having symptoms, but thought it was secondary stress. In
2004, it started affecting his work schedule. He was soon able to see only
10 patients a day.

Earlier this year Evans sent a letter to his patients informing them of his
"catastrophic" illnesses and situation, which he says, is in dire straights.
He may be headed for bankruptcy because of his inability to function as a
physician and is applying for disability.

He said he feels like he has flu-like symptoms "24 hours a day, seven days a
week. It never goes away."

Many things can trigger an attack of fibromyalgia or Chronic Fatigue
Syndrome, ranging from loud noises, to excessive light, smelling potent food
such as onions, or even the weather.

Before he began showing symptoms, like many doctors, Evans was a "doubting
Thomas" when his patients claimed to have Chronic Fatigue Syndrome or it's
closely related cousin, fibromyalgia. Two decades ago, some physicians
called CFS the "yuppie flu."

"I have never been a strong believer in Chronic Fatigue Syndrome in the
past," Evans said in hisletter, "but, after extensively researching the
subject, I have every sign and symptom pointing to this as my diagnosis."

Now he feels those same patients' pain - literally and figuratively.

"Yes, I've seen eyes roll," said Evans of some of his colleagues when they
learn about his diagnosis. "It's like you are talking about the tooth fairy.
I was probably more sympathetic than most doctors to patients with Chronic
Fatigue or fibromyalgia, but I have rolled my eyes when I've had patients
with them. But mostly it was because there is very little you can do to help
them."

One of the newest drugs with promise to help people suffering from
fibromyalgia is Lyrica, approved by the FDA last June. Time magazine called
it one of the top 10 medical breakthroughs of 2007.

But for Evans, neither Lyrica, nor any other drug, has helped the symptoms
that leave him aching, weak and exhausted.

"At various times, I tried several medications, none of which helped any of
my symptoms," Evans said. "Most made me feel worse, if anything."

CFS and fibromyalgia are so similar in their symptoms, some doctors believe
they may be one in the same, with different symptoms affecting people in
different ways.

The book "Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible
Illnesses" (Hunter House, 2001) was written by Dr. Katrina Berne, who was
diagnosed with CFS and fibromyalgia in 1985.

She says research shows the two diseases "overlap by as much as 75 percent."
She said the disorders "share common symptoms, demographics, sleep
physiology, and abnormalities in neurological, immune system, and endocrine
function."

Evans said no one is quite sure what causes CFS or fibromyalgia and there is
no known cure. No federal money is allocated for research either.

"It's not a glamorous illness so there is no money for research," said
Evans, a graduate of the University of North Carolina in 1983 and Wake
Forest Medical School in 1987. "Some people say be glad I don't have
Parkinson's, but I wish I did. At least they have money for research."

* * *

We've said it for years -- the only way to convince some people that CFS is real is for them to get it themselves.  They may not believe me that I'm sick-not-lazy, but when it hits closer to home, they know that they themselves are physically ill, not lazy or crazy.

The State of CFS Research Today

When SARS came along, CDC jumped right on it.  Other new diseases surface, CDC jumps on them. 

As a doctor told me about a local medical group, they're only interested in what will get them worldwide headlines, and CFS is "old news" that's not worth their time.

A few years ago, there was some groundbreaking research proving that CFS is biological in nature.  Our leading news station ran a brief story about it during the noon news, but not a word during the evening/late night news when our employed friends and relatives would hear that it's not just all in our heads.

Similarly, the first reports from Dr. Kerr about abnormalities in the blood rated a few words in the crawl on CNN, but I could not find a word about it on their website and no other media said anything. 

Ditto, Dr. Montoya's excellent results with anti-virals.  Not one word in the mainstream media.  You have to hang out at Co-Cure, ImmuneSupport or other CFS-specific places to find out about it.

Then CDC holds a press conference at which Dr. Klimas says it's real, it's disabling, it's physical in origin, and most of the media ignore her comments to focus on Reeves' subsequent description of us as emotional basketcases who can't handle a little stress.

And then we wonder why people still have the idea that CFS is just depression?

I'm going to say it here, because I'm not afraid of retaliation: it makes you wonder whether CDC has warned the mainstream media that publicizing anything that contradicts Reeves' stance will get them uninvited from future CDC press conferences.

God bless our dedicated CFS researchers, going it against the odds and without proper funding.  As Pat Fero observed, since it's not a prestigious subject with big-bucks research grants, our researchers are as shabby-looking as the patients, with holes in their shoes.  But they keep at it, because they -- unlike CDC -- have forged a personal connection with the patients and are willing to forego the big bucks and prestige in order to get their patients well.


Tags: ,

Sunday, March 30, 2008

Random Thoughts

As a CFS activist, I’m often subjected to venomous attacks from people who think my ideas that CFS is a physical illness are right up there with the wearers of tin foil helmets.

What they don’t understand is that I don’t give a flying rat’s patoot about public opinion.

I was performing all over the tristate area as a teenager. Sometimes we wouldn’t set foot inside the school building for a week at a time – our bus to a performance left before the doors opened and returned after school let out. We were on the road so much we sometimes joked "class? We’re supposed to go to class?!" I didn’t see M*A*S*H in the original run because I was never home when it was on; I got hooked on it in late-night re-runs, a good half-hour of laughs to come down from a performance high so that I could get to sleep. Other shows that our classmates were talking about and it just went right over my head, never heard of it.

We got used to being out of synch with the rest of the world, marching to our own drum, laughing about it that Karen and Peter were going to waltz to everything including Pink Floyd. (Hey, we did the best waltz this side of Vienna ... you play to your strengths.)

OK, it was not a normal teenagerhood, but it was good preparation for being an activist, because I learned early on not to care if people were making fun of our costumes, our dancing, our class attendance, etc.

If you’re going to be in the public eye (as I have been since I was 14), someone is always going to criticize something about you. At dancing weight – 20 pounds below the minimum acceptable weight on the height/weight chart – I was still a size 12 because I have linebacker shoulders and hips to match. There were people who complained I was too skinny (my friend Jon says I "looked like an Auschwitz survivor") and people who thought that anyone who wears a size 12 needs to lose weight because anything over a size 4 is "too fat". You can’t be too fat and too skinny at the same time, so you learn to ignore all the negative comments and do things your way, because in the end, the only opinion that counts is your own.

In this case, I know that the research supports my position. Yes, there’s research that "appears" to support the claim that CFS is psychiatric, but if you analyze that research carefully, the patients didn’t have CFS at all. They had depression (if that’s what the researcher wanted to prove) or stress (if that was his goal) or some other psychiatric problem; the diagnostic criteria that would differentiate CFS from depression were not applied to the patients in the research pool – they weren’t asked about infectious onset, fever, rash, swollen glands, etc., they only needed those symptoms where the two overlap, and then were passed off as having "CFS" when no ME/CFS researcher would have made that diagnosis because they don’t meet the criteria for True CFS. (See Dr. Hooper’s article posted recently.)

And since the research – which I have read and the attackers apparently have not – does support my position that CFS is a post-viral illness that in some ways resembles serious diseases like AIDS, MS and polio, I really don’t care what they say about me and my ideas, because all it does is prove their ignorance and immaturity to think that name-calling is going to either make me cry or crawl under a rock and hide.

As my debate coach used to remind us, ad hominem attacks prove only that the opposition has no valid argument and can only hope to win by attacking your credibility.

Except in this case, it’s not only my credibility, but that of Ivy League-trained doctors, some of whom are professors at Harvard. I may not have the medical credentials to come up with or support these theories on my own, but Harvard-trained researchers like Dr. Bell and Dr. Komaroff have all the credentials and credibility needed to support the validity of the notion that CFS patients are neither lazy nor crazy ... they’re being maligned for having had a virus that Modern Medical Science has not yet identified. Patients should not be held accountable for the failings of doctors.

But for too many of us, our lives and finances have been ruined through no fault of our own. When you give the doctor all the information he needs to diagnose post-viral CFS, including a previous diagnosis from a virologist, and he still gets it wrong, that’s not the patient’s fault.

But the patient is the one who will suffer the rest of her life because her condition deteriorated due to lack of proper treatment. And that makes activists for any disease very angry, in ways that insults and verbal abuse won’t.