Saturday, February 9, 2008

CFS: Inflammation, Immune Function, Neuroendocrine Interactions

http://www.current-reports.com/article_frame.cfm?PubID=RR09-6-2-02&Type=Abstract

Chronic Fatigue Syndrome: Inflammation, Immune Function, and Neuroendocrine Interactions [abstract]

Current Rheumatology Reports 2007, 9:482-487

Investigations into the underlying cause of chronic fatigue syndrome have advanced the field considerably in the past year. Gene microarray data have led to a better understanding of pathogenesis. Recent research has evaluated genetic signatures, described biologic subgroups, and suggested potential targeted treatments. Acute viral infection studies found that initial infection severity was the single best predictor of persistent fatigue. Genomic studies showed that persistent cases express Epstein Barr virus-specific genes and demonstrate abnormalities of mitochondrial function. Studies of immune dysfunction extended observations of natural killer cytotoxic cell dysfunction of the cytotoxic T cell through quantitative evaluation of intracellular perforins and granzymes. Other research has focused on a subgroup of patients with reactivated viral infection. These advances should result in targeted therapies that impact immune function, hypothalamic-pituitary-adrenal axis regulation, and persistent viral reactivation.

Spinal Irritation and Fibromyalgia

Editorial
"Spinal Irritation" and Fibromyalgia: A Surgeon General and the Three Graces

FASEB J. 2008 Feb;22(2):327-31.

Gerald Weissmann, Editor-in-Chief

Spinal Irritation is characterized by multiple tender spots
distributed over the female body, probably caused by sexual
excess.... A couple of leeches to the inside of the nostrils are
remarkably efficacious [and as for] counter-irritants, such as
blisters, croton oil, tartarized antimony, and the actual cautery,
cases every now and then appear in which they seem to be of
service... I suppose the most generally advantageous agent of the
kind is the actual cautery very lightly applied to the nuchae.

William A Hammond, Spinal Irritation, 1886 (2)

1990 ACR Criteria for the Classification of Fibromyalgia 1. History
of widespread pain... 2. Pain in 11 of 18 tender point sites on
digital palpation... Digital palpation should be performed with an
approximate force of 4 kg. For a tender point to be considered
"positive" the subject must state that the palpation was painful.
Tender is not to be considered "painful."

Wolfe et al. The American College of Rheumatology 1990 Criteria for
the Classification of Fibromyalgia. Report of the Multicenter
Criteria Committee (1)

TENDER POINTS

For almost two centuries, doctors (traditionally male) have been
responding to unexplained aches and pains of their patients
(traditionally female) by tweaking various tender or painful points
on their bodies.
Once a particular constellation of points is
elicited, a diagnosis is made and treatment applied. The women have
been in real pain, current treatments have sometimes worked, but the
end-results have varied little over the years. Early in the 19th
century, based on their recent discovery of the reflex arc, doctors
named the syndrome of unexplained aches and pains "Spinal lrritation
(3) ." As described by Dr. Hammond, it was managed by applications of
leeches or by hot iron cauteries applied to the back of the neck (the nuchae).

Nowadays, of course, we are much wiser. Reflexology has been left to
the medically untutored and we attribute the slings and arrows of
daily painnow called fibromyalgia to a "central hypersensitivity to
nociception (4) ".
Experts in the field suggest that

     Persistent or intense nociception can lead to transcriptional
and translational changes in the spinal cord and brain resulting in
central sensitization and pain. This mechanism represents a hallmark of fibromyalgia and many other chronic pain syndromes, including
irritable bowel syndrome, temporomandibular disorder, migraine, etc. (4)
.

Note the full text of this article is available for free at
http://www.fasebj.org/cgi/content/full/22/2/327

All about Pain

Pain and arthritis.

N C Med J. 2007 Nov-Dec;68(6):444-6.

Winfield JB.

University of North Carolina at Chapel Hill, School of Medicine, USA.
john_winfield@med.unc.edu

PMID: 18236866


Address arthritis-associated pain as a disease entity, not as a
sensory entity. Attempt to classify chronic pain as nociceptive pain,
neuropathic pain, fibromyalgia-type pain, or psychogenic pain (very
uncommon); specific treatment approaches are required for these
different types of pain.

Overcome your negative bias against fibromyalgia and review recent discoveries that have led to classification of fibromyalgia as a biologically-based neurosensory disorder. Use the simple and
convenient ways that are available to measure pain and its
concomitants (fatigue, poor sleep, depression, anxiety, and impaired
physical functioning) both at initial evaluation and in follow-up
visits as a guide to therapy.

Do not fear use of opioids; just be careful with this class of drug.

[Note: The full text of this commentary is available for free in PDF at
http://www.ncmedicaljournal.com/nov-dec-07/winfield.pdf  ]

* * *

Too often, doctors who are unaware of the nature of fibromyalgia pain will tell the patient to "just take Advil".  I took Advil in ever-increasing doses until I got an ulcer.  The doctor agreed that I had an ulcer and should stop taking the Advil, but when I reminded him at the end of the appointment that he had not prescribed anything for the intense pain, he threw over his shoulder "take Advil" as he left the room.  Leaving me puzzled, since he'd just told me to stop taking Advil because it had given me an ulcer???????

The fact is, fibromyalgia is non-inflammatory pain, therefore NSAIDs (anti-inflammatories) like Advil will, as I discovered, be useless.  You can take them by the handful and they will not help.  My pain was neurological in origin, so the first thing that helped was Tramadol.  It's mild enough to be available without a prescription in Canada, yet many doctors in America shy away from offering it -- they'd rather you get an ulcer by gulping Advil or aspirin than to prescribe even a mild narcotic.

Friday, February 8, 2008

Unlocking Secrets of CFS/ME (or "beware of quackery")

Letter in reply to article in the Manchester Evening News, 28 January 2008,
in favour of the Perrin Technique. (link under my signature)

If you have a response please write to postbag@men-news.co.uk

Cheers
John


*Postbag - Manchester Evening News*.

Carmel Thomason's otherwise well-researched and written article, (*Unlocking
secrets of ME (Manchester Evening News, 28 January 2008*) may unwittingly
give the erroneous impression that we now thoroughly understand the physical
cause of M.E (*Myalgic Encephalomyelitis*) and, further, offer a false hope
of substantial recovery, if not cure, which is rarely, if ever, realised.

It is, essentially, a big advertising splash for one of a number of
treatments, which is, at least, controversial and, like many others
(including Reverse Therapy, Mickel Therapy and The Lightning Process), may
cost hundreds of pounds.

Some of the theories and workings of the treatments are not even understood
by the practitioners themselves, most are untested by independent scientific
research and all are unrecognised by official medical bodies but, instead,
rely on faith and, one-sidedly, testimonials from some who say it helped
them but nothing from the dissatisfied customers.

It is not true to say that, if a treatment does you no good, it will do you
no harm. For veteran M.E. sufferers of decades, the disappointment of the
failure of yet another treatment, which held promise, may be the final
straw
.

Applying some common sense, it would seem reasonable, if any of these
treatments really worked, to expect, by now, a big dent in the number of M.E.
sufferers remaining ill and the NHS would leap at the opportunity to offer
them free and get people back to school and work. Experience shows this does
not happen.

I wonder how many therapists would be sufficiently confident about their
treatments to - just as some lawyers offer a "no win, no fee" service - give
it freely and only take payment if their patient recovered
to their original
state of health and did not relapse for, say, twelve months? And I wonder
how many of those who did would stay in business?

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

http://tinyurl.com/2ov7ya

Unlocking secrets of ME (Manchester Evening News, 28 January 2008)
Carmel Thomason

FOR years ME, also known as myalgic encephalomyelitis or chronic fatigue
syndrome, has baffled medical professionals.

In the Eighties it was known as 'yuppie flu', its symptoms often dismissed
as being all in the mind.

Nicole Roberts-Morris is one of hundreds of thousands who know differently.
The mum-of-three from Bollington watched the condition transform her
daughter, Imogen from a happy go-lucky 11-year-old into a pale shadow of her
former self and, sometime later, the same thing happen to her younger
daughter, Lena.

"Imogen had a bit of a back problem, which we couldn't get to the bottom of,
but other than that she was a fit and healthy 11-year-old," Nicole
remembers. "She was the fastest runner in her class and was about to take
grade three on the cello. Then her teacher said Imogen didn't seem to be
able to concentrate in class and Imogen herself started complaining that she
couldn't think straight or run around the playground any more.

"I took her to the doctors about six times. He could find nothing, but she
went downhill so quickly it was frightening - she became a different person
altogether. We'd find her scrabbling around in the bottom of the bed doing
low moaning because she was in agony, half conscious and hallucinating with
bad vivid dreams. Every other night she'd wake up in a cold sweat with
palpitations and shaking uncontrollably. Eventually it got to the stage
where she couldn't get dressed and come downstairs."

Imogen had many of the associated symptoms of ME such as severe and
debilitating fatigue, painful muscles and joints, disrupted sleep, gastric
problems, headaches and poor concentration. However, diagnosis still proved
difficult.

Currently diagnosis is made through a process of elimination.

The cause of the condition is still uncertain and diagnosis remains
problematic because the symptoms are similar to those present in several
other medical conditions. There are also currently no examination findings
which can confirm a diagnosis, no accepted cure and no universally effective
treatment.

"Both Imogen and Lena were given blood tests to rule out other illnesses,
but doctors said to both of them, 'There is absolutely nothing we can do to
help you - you'll get better in your own time.'"

Suffered

Nicole feels that perhaps she was more prepared than some because her
brother had suffered with the condition in his early 20s following a bout of
glandular fever. Nevertheless, it was still a desperate and frustrating time
for all the family.

"It was heartbreaking for us. We didn't understand the illness so we could
never really expect friends and family to.

"Imogen was out of school for five years and Lena for two. When Imogen was
getting better people would see her out and think, `What's she doing?' But
they wouldn't see how she was when she came back home.
I suppose that caused
a lot of doubt in people's minds - `Why was she having a tutor at home when
she could go to the park and enjoy herself? She should be in school.'

"You worry about what people might think, but in the end you just see your
child getting better and think: `Great!'"

It is estimated that ME affects 193,000 in the UK and in August last year
the National Institute for Health and Clinical Excellence (NICE) launched
long-awaited guidelines on its diagnosis and management.

Consultant Paediatrician, Dr Esther Crawley, was part of the guideline
development group working towards making access to treatments more available
within the NHS.

"ME causes symptoms of varying severity and can be very debilitating in
children and young people," she says. "We frequently see children who are
very severely affected and unable to get out of bed. The guideline provides
useful advice on how to diagnose children with suspected ME and makes it
clearer when a child or young person should be referred to a specialist
service. Although there is no known drug to treat or cure the condition,
clinicians can provide practical help to individuals such as advice on
managing activity, rest periods, sleep patterns, diet, equipment to help
maintain independence and advice and support with education."

Although the outcome is far from perfect at least there is now a recognition
that this, often controversial condition, is indeed very real.

The ME Association suggests that an early diagnosis together with adequate
rest during the acute phase and during any relapse appear to bring the most
significant improvement.

However, here in Manchester, pioneering work led by osteopath, Raymond
Perrin, seems to be leading towards a more specific diagnosis and treatment.

The Perrin Technique is based on the belief that ME is a physical disorder
that leads to a build up of toxins within the brain and the spine. It uses
definite physical signs to diagnose the condition and treats it by improving
the drainage of toxins from the central nervous system.

Dr Perrin explains: "It such a baffling disorder because it's not one bug or
virus that causes it - it's much deeper than that. I think that I've come up
with some answers and we are getting there, bit by bit.

Physical problem

"ME is a very real physical problem. There are physical signs of it - tender
points in the chest and abdomen, areas of the spine that are not normal
shape and the cranial rhythm the fluid drainage is very dysfunctional.
Everything is very congested and tight.

"I've discovered with ME that there is a backflow of drainage of lymph from
the central nervous system - it should drain out but it's draining back into
the system causing toxins to build up in the brain and the spine. What our
treatment does is to reverse that - we increase the drainage of the
lymphatics by manual massage techniques, gentle manipulation, very gentle
movements of the spine and cranial treatments which stimulate the fluid
around the brain.

"Once the toxins are out of the brain it will start working better and
eventually the body will follow suit.

"Treatment is initially once a week and the frequency gradually reduces over
time.

"It can take a few weeks or months to see an improvement but most people
begin to feel the benefit within a month."

Clinical research at the University of Salford has seen hundreds of ME
sufferers helped though the Perrin Technique. Now further research is
underway at the University of Central Lancashire, to include a larger
clinical trial looking at diagnosis of the illness.

Meanwhile, Nicole is convinced that it is thanks to the Perrin technique
that both her daughters have recovered so well.

After being out of school for five years, Imogen, now 18, is studying for
her A-levels at the same time as the rest of her peer group and Lena, 15 is
also back in school full-time, working towards her GCSEs.

Relief

"It was such a relief to talk to Raymond and get an explanation for some of
what was happening," Nicole says.

"He never claimed to cure it, but said that he might be able to control it
and once he explained what was going on in their systems it all made sense.

"Even though people say everyone with ME is different and they all have
diverse ailments - they don't.

"They all have similar ailments but at different stages and some don't go
down as low down the ME scale as others.

"The Perrin Technique is a non-intrusive treatment so you know you're not
going to come to any serious harm.

"After six months of treatment Imogen could start reading again and we could
go out together as a family - it was then that she was able to restart her
education and the tutoring service began an hour a day with her.

"She still has to pace herself. But she is managing it and sees Raymond
every three months to keep her spine in balance so the drainage works quite
well.

"Lena was out of school for two years with ME. Luckily she began treatment
much earlier than Imogen - I'm sure she would have got as bad if it wasn't
for her early diagnosis by the Perrin clinic."

Raymond Perrin has clinics in Manchester city centre and Prestwich.

Vitamin D Warning

Vitamin D discovery outpaces FDA decision making.

You can get the full free text for this paper at the following link:

http://www3.interscience.wiley.com/cgi-bin/abstract/117885976/ABSTRACT?CRETRY=1&SRETRY=0 

Marshall TG. Vitamin D discovery outpaces FDA decision making.
Bioessays. 2008 Jan 15;30(2):173-182 [Epub ahead of print] Online
ISSN: 1521-1878 Print ISSN: 0265-9247 PMID: 18200565

If Marshall is correct, taking Vitamin D supplements could be as bad
for the immune systema/lyme infection as a prescription-only steroid.

Regards
Lara

PS - also see the news article with a summary of the Marshall
research:

Vitamin D Deficiency Study Raises New Questions About Disease And
Supplements

http://www.sciencedaily.com/releases/2008/01/080125223302.htm

ScienceDaily (Jan. 27, 2008) — Low blood levels of vitamin D have
long been associated with disease, and the assumption has been that
vitamin D supplements may protect against disease. However, this new
research demonstrates that ingested vitamin D is immunosuppressive
and that low blood levels of vitamin D may be actually a result of
the disease process. Supplementation may make the disease worse.

In a new report Trevor Marshall, Ph.D., professor at Australia's
Murdoch University School of Biological Medicine and Biotechnology,
explains how increased vitamin D intake affects much more than just
nutrition or bone health. The paper explains how the Vitamin D
Nuclear Receptor (VDR) acts in the repression or transcription of
hundreds of genes, including genes associated with diseases ranging
from cancers to multiple sclerosis.

"The VDR is at the heart of innate immunity, being responsible for
expression of most of the antimicrobial peptides, which are the
body's ultimate response to infection," Marshall said.

"Molecular biology is now forcing us to re-think the idea that a low
measured value of vitamin D means we simply must add more to our
diet. Supplemental vitamin D has been used for decades, and yet the
epidemics of chronic disease, such as heart disease and obesity, are
just getting worse."

"Our disease model has shown us why low levels of vitamin D are
observed in association with major and chronic illness," Marshall
added. "Vitamin D is a secosteroid hormone, and the body regulates
the production of all it needs. In fact, the use of supplements can
be harmful, because they suppress the immune system so that the body
cannot fight disease and infection effectively."

Marshall's research has demonstrated how ingested vitamin D can
actually block VDR activation, the opposite effect to that of
Sunshine. Instead of a positive effect on gene expression, Marshall
reported that his own work, as well as the work of others, shows that
quite nominal doses of ingested vitamin D can suppress the proper
operation of the immune system. It is a different metabolite, a
secosteroid hormone called 1,25-dihydroxyvitamin D, which activates
the VDR to regulate the expression of the genes. Under conditions
that exist in infection or inflammation, the body automatically
regulates its production of all the vitamin D metabolites, including
25-hydroxyvitamin D, the metabolite which is usually measured to
indicate vitamin D status.

Vitamin D deficiency, long interpreted as a cause of disease, is more
likely the result of the disease process, and increasing intake of
vitamin D often makes the disease worse. "Dysregulation of vitamin D
has been observed in many chronic diseases, including many thought to be autoimmune,"
said J.C. Waterhouse, Ph.D., lead author of a book
chapter on vitamin D and chronic disease.

"We have found that vitamin D supplementation, even at levels many
consider desirable, interferes with recovery in these patients."

"We need to discard the notion that vitamin D affects a disease state
in a simple way," Marshall said. "Vitamin D affects the expression of
over 1,000 genes, so we should not expect a simplistic cause and
effect between vitamin D supplementation and disease. The
comprehensive studies are just not showing that supplementary vitamin
D makes people healthier."

Journal reference: Marshall TG. Vitamin D discovery outpaces FDA
decision making. Bioessays. 2008 Jan 15;30(2):173-182 [Epub ahead of
print] Online ISSN: 1521-1878 Print ISSN: 0265-9247 PMID: 18200565

Adapted from materials provided by Autoimmunity Research Foundation,
via AlphaGalileo.

When will they ever learn? (2 more opinions on What's in a Name?)

WHEN WILL THEY EVER LEARN?

by
Gurli Bagnall

When a moral debate  is in progress, the views of those who are affected are often ignored or dismissed as irrelevant.  Be the latter six or sixty, they are all regarded as minors who have no legal say in the decision making process.

A good example is the voluntary euthanasia debate. The conscience vote cast
by politicians is often determined by personal religious beliefs which
override the beliefs of all others including the terminally ill.
Those in the medical profession who argue vehemently against voluntary euthanasia,  do so on the grounds that, "I'm here to save lives!  Not to kill people off!"  If only their ethics were as strong when committing one of those many preventable medical "errors" which contribute to the iatrogenic epidemic.

Common to nearly all who argue against,  is the use of the word "euthanasia"
without qualifying it by ³voluntary².  This gives the impression that a
death sentence has been passed by others rather than death being the choice
of someone suffering unbearably.

Such strategies are dishonest and whatever the case, if it can only be
argued  dishonestly, then there is no case.   A patronizing attitude is in
no way, shape or form,  kindness, and it generally hides an agenda that
bears no relationship to the wishes of those affected.

In the current debate  over what to call ME,  we see both strategies in
abundance.

In the 1980s when the name was changed from ME to CFS, we were told that CFS
described the condition better.  Of those shoved  into the CFS melting pot,
genuine ME sufferers  were not convinced  then and, judging by Co-cure and
various support groups,  they are not convinced now.  One would have thought
that after twenty years, those preaching in favour of CFS could have come up
with a different argument if for no other reason but to relieve the boredom.


Those who favour CFS/ME or ME/CFS  seem to be under the impression that
Myalgic Encephalomyelitis sufferers will be delighted to accept this
compromise.  But we have already lived with that particular compromise for
some years and we are still ³kindly² being told  that thischoice describes
the disease the best.  As for the inclusion of ME҆. hang on to your hats,
chaps! We can now have it both ways  -  we can choose whatever we want, be
it:  ³itis² or ³opothy².

For goodness sake!  This is a serious matter.  It is not a child¹s game!  We
do not live with Alice in her Wonderland.  We live in the real world where
the name of a disease influences impressionable members of the medical
profession to the point where their prejudices turn to outright abuses.

Having seen and experienced the disastrous effect CFS had and has upon our
lives, we now hear that certain  experts in the States have taken up the
good fight for a "fair name".  No wonder outsiders are often confused! The
cool, calm and kindly manner of the "experts" is at odds with the patients'
very apparent anger.

As a few crocodile tears slide down the "experts"  cheeks, they say:  "Oh
please! There's no need to thank us!  ME/CFS WILL be the official title and
we'll fix it so you can use 'itis or 'opothy.  The choice is yours!"
Well....hallelujah!

I do not believe there are many under any illusion about the merry-go-round
that is currently being planned for ME patients if  the ³experts² are
allowed to bulldoze this proposal through.


Frank Twisk had this to say in his recent posting to Co-Cure:
³My disease [has] already got a fair name: Myalgic Encephalomyelitis.  A
name which is used in medical literature for more than 70 years, a name of a
disease well defined by dr. Melvin Ramsay, a name used for all epidemics in
the last century, and above all, a name acknowledged by the WHO as a
(neurological) disease.²
(Nightingale definition/Byron Hyde, 2006:

< http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf  

I could not agree more and a realistic explanation for the  insistence in
continuing the CFS lie,  is long overdue.

Remember the old song,  ³Never Smile at a Crocodile²?  Well, the  one that
is smiling so ³kindly² at us (as it murmurs sweet nothings about ³sympathy
and understanding²), is anticipating our further disenfranchisement from
society in general, and the severing of ME from  official recognition by the
WHO in particular.

Is it acceptable to refer to  P/CFS (Parkinson's disease) , MS/CFS (Multiple
Sclerosis), MN/CFS (Motor Neurone disease), C/CFS (Cancer),  HF/CFS (Heart
failure) etc.?  With all the connotations that accompany CFS, it would be
outrageous to expect sufferers to have the added burden of such insulting
nonsense.  Without doubt, there would be a hue and cry, and  a tarring and a
feathering after which those no-longer-smiling crocodiles would be run out
of town!

Suffering a disease like ME requires great inner strength because of the
constant pressure  to deal with incorrect diagnoses,  physical and mental
abuse,  and attacks upon our honesty and integrity  -  not to mention the
imposed financial hardship.

We need to continue to be strong and to insist that the disease we suffer is: MYALGIC ENCEPHALOMYELITIS which is categorized by the WHO as a  NEUROLOGICAL DISEASE.


Fatigue is to ME  as it is to all of  the above conditions. It is  one of
the many nasty symptoms that plague sufferers.  How can it be that so many
doctors do not have the intellectual capacity to understand this?


Kind regards to all.
Gurli Bagnall   (URSULA@xtra.co.nz )
7 February, 2008

 

Much of what will follow is a discussion of what I "believe" about these names.  From a scientific standpoint, CFS is not a name.  It is a misdiagnosis, and it has successfully hidden a severe and probably contageous illness from view in the United States - and the World - for twenty years. 

The term Chronic Fatigue Syndrome is not only subliminally dismissive, but it is also tarnished by no fewer than SEVEN different, and sometimes conflicting, definitions.  The Holmes and Fukuda definitions require physical symptoms; the Oxford definition precludes them.  From a purely SCIENTIFIC standpoint, the name is useless.

If you meet the Ramsay or Hyde definitions for Myalgic Encepalomyelitis, then from a SCIENTIFIC standpoint, use that term.  If you do not, find out what you have.  It is has no name, come up with a different name.

So much for science.  What follows is my personal opinion.  The term Myalgic Encephalomyelitis has been used to diagnose a disease recognized by researchers since 1934; given the name M.E. in the mid-1950s, and recognized as a neurological condition by the World Health Organization since the 1960s. 

I strongly believe that WE SHOULD NOT TAMPER WITH A DIAGNOSIS THAT PATIENTS ALREADY HAVE.  That is a position that speaks to ETHICS and MORALITY.

I can see ME/CFS being used IN THE UNITED STATES, ONLY as a temporary transition to Myalgic Encephalomyelitis for those of us who meet the defiition for M.E.  Temporary, along with a publicity campaign to introduce the term and definition.

It would be grossly unfair to use it to suggest that M.E. is the same thing as CFS.  Many patients with the misdiagnosis CFS actually have M.E. - but many do not. 

It would also be grossly unfair to use it to shoehorn the term Myalgic EncephalOPATHY as a synonym for CFS. 

Patients have been diagnosed for SIX decades with Myalgic EncephaloMYELITIS, which is not the same thing as CFS. In the United States, the name Myalgic Encephalomyelitis was not used.  instead, until roughly 1980, the term Epidemic Neuromyesthenia was used for M.E. (also called atypical polio or Icelandic Disease).

Although the Holmes Committee article of 1988 mentioned only chronic Epstein-Barr Virus as the condition being renamed, very quickly it became "common knowledge" that CFS was the "same thing" as M.E.  The term Epidemic Neuromyesthenia disappeared into the dustbin of history.

Stephen Straus's 1988 article on "Chronic Mononucleosis" in the Journal of Infectious Diseases, which he saw as a companion piece to the Holmes article, described the Incline Village outbreak under the subheading "Epidemic Neuromyesthenia."  Then he dismissed it as not really being an outbreak (as he also dismissed the patients as probably being neurotic). 

I find it interesting that Straus, the national expert on Epstein-Barr and "CFS" at NIH, was fully aware that the Incline Village outbreak was probably E.N.  I imagine that in the 1980s, a nationwide outbreak of a disease with "epidemic" in its name would have been most unwelcome. 
 
What could be more easy than to bury it by renaming it "the chronic fatigue syndrome"?

Likewise, psychiatrists in the UK were delighted to have a new name to use to bury M.E.  And they did their best, but people continued to be diagnosed with M.E. and thus Myalgic Encephalonyelitis remains the only name in contiguous us for over SIXTY years as a term for the disease I have.

Where did Encephalopathy come from?  It was a proposed compromise term in the 1990s.  When patients in the U.S. asked to have M.E.-itis recognized here, the authorities responded that "that wouldn't be scientific."  They said there was "no evidence" of "inflammation" - that is, the "itis" part.  Never mind that patients with poliomyelitis do not have inflammation beyond the initial onset, and nobody renamed that poliomyopathy.

Indeed, the "renaming" was Chronic Fatigue Syndrome. Better to have admitted it was wrong to RENAME it in the first place and go with what was there at the time - which would have to be M.E. (unless CDC wants to resurrect Epidemic Neuromyesthenia, which I doubt.)

At the same time the M.E. community in England was reeling from the onslaught of "Cogitive Behaviour Therapy" and "Graded Exercise Therapy" as recommended treatments for this very serious disease.  Some in Europe also hoped that if the offending "itis" were removed from the name, the disease could remain recognized as separate from "chronic fatigue syndrome", "neurasthenia", and somaticizing (the physical expression of a psychological problem). 

But the compromise was not accepted.  Once again, the authorities insisted it was not "scientific."

So why the sudden rush to accept M.E.-opathy now?  I believe there are a number of reasons.  The British psychiatrists are betting they can completely bury M.E. if the public becomes confused between "itis" and "opathy." In America, in some cases patients just do not know the history.  In other cases, patients who do not meet the definition for M.E.-itis are worried that they will get left behind with "CFS".

I became very concerned about the rush to "M.E.-opathy" when a national fibromyalgia group happily emailed its members that they would be able to use M.E.-opathy instead of fibromyalgia. 

So - let's get this straight.  If you want a different name to use than CFS, let's admit out loud that CFS was a horrid mistake and return to M.E.-itis, the name AND DEFINITION in contiguous use since the mid-1950s. 

As a compromise, I'm okay with the Canadian M.E./CFS (which refers to M.E.-itis) because that references ICD-10's placement of both M.E. and CFS in ICD-10, and the Canadian Consensus Document, available at the website of the M.E./F.M. Society of Canada, has the best diagnosic criteria currently available from an authoritative source. 

If you do not fit either the Ramsay definition for M.E. (which focuses on CNS disruption) or the Hyde definition for M.E. (which requires a SPECT scan, and focuses on poor blood flow in the brain), then do not use M.E.-itis for yourself.  In that case, consider what Byron Hyde has said:  "CFS is a misdiagnosis." Find out what you DO have. 

I see nothing wrong with the name fibromyalgia, even though it has been dissed by the New York Times, because it is accepted as a rheumatological condition (a fact which apparently escaped that once respectable newspaper).  But fibromyalgia is not M.E., and using M.E. as an umbrella term can only do harm in the long run.

Just as it was wrong for the United States to foist "chronic fatigue syndrome" upon the world, it would be wrong for a large number of U.S. citizens to foist the term "Myalgic Encephalopathy" upon the world.  Yes, there are some Europeans who use the phrase, but they are in a minority and have been effectively voted down by their compatriots, who still use M.E.-itis. 

So:
1.  M.E./CFS is okay in the U.S. as a transition term - until Myalgic Encephalomyelitis is an accepted diagnosis for a neurological condition under 323.9 in ICD-9-CM and G93.3 in ICD-10.

2.  M.E./CFS is okay in the U.S. when accompanied by the Canadian consensus document's diagnostic criteria.

3.  M.E./CFS is NOT okay if the intention is to foist the name Myalgic Encephalopathy upon the world, because it is unfair to change an existing diagnosis. Myalgic Encephalomyelitis is an existing diagnosis.  Leave it alone for those who have that diagnosis.  Come up with a different name if you don't meet the definition for that diagnosis.

4.  M.E./CFS is not okay if you mix it up with the British psychiatrists' phrase CFS-M.E., which they believe is the same thing as "neurasthenia," a neurosis, a "nervous" disease (like a "nervous breakdown").  "Neurasthenia", by the way, is not listed in DSM-IV.

5.  M.E./CFS is not okay as a permanent solution. 

According to the CDC, at least one million Americans have "CFS" although most have no idea what is wrong with them.  According to the CDC, their families lose an average of $20,000 in lost income because of the disease.  That means the nation loses $20 billion dollars in GNP annually because this disease is ignored and misportrayed.  That means the nation loses $7.9 billion annually in income taxes because this disease is ignored and misportrayed.  This game has gone on too long. 

Ultimately, we need to focus on biomarkers and solutions.  For that we need homogeneous samples from populations with similar symptoms.  Patients should be diagnosed by the symptoms they have, not the diseases they do not have.  Keep that in mind.

Mary M. Schweitzer, Ph.D.
Patient - Full Disclosure:
I have HHV-6A, the 37kDa Rnase-L Factor, a low natural killer cell function, and recurring EBV.  I am in partial remission on an experimenal antiviral-immune modulator.  When in relapse, I meet the Ramsay definition for Myalgic Encepalomyelitis - I actually fit it better than the Fukuda definition for CFS.


Improving Physician Attitudes toward CFS/FMS

 Journal of Chronic Fatigue Syndrome
       Vol. 14, #2, pp 25-30
Datum: Summer 2007
URL:   http://jcfs.haworthpress.com
       https://www.haworthpress.com/store/Toc_views.asp?sid=VFM80TB9VRP68PNCMXB826SAD1J53F63&TOCName=J092v14n02%5FTOC&desc=Volume%3A%2014%20Issue%3A%202


The effectiveness of early educational intervention in improving future
physicians' attitudes regarding CFS/FM
-----------------------------------------------------------------------
Tony V. Lu, MD, MBA; Susan R. Torres-Harding, PhD; Leonard A. Jason, PhD
- Tony V. Lu is Assistant Professor of Medicine, Department of Medicine,
  Loyola University Health System, Maywood, IL.
- Susan R. Torres-Harding is Assistant Professor of Psychology, Department
  of Psychology, Roosevelt University, Chicago, IL.
- Leonard A. Jason is affiliated with the Department of Psychology, and
  Director, Center for Community Research, DePaul University, Chicago, IL.
- Address correspondence to: Tony V. Lu, Family Health Center of LaGrange Park,
  321 North LaGrange Road, LaGrange Park, IL 60526 (E-mail: Tlu1@lumc.edu ).


ABSTRACT

Objective
To assess the effects of an early educational intervention program's ability
to alter the perceptions and attitudes of future physicians regarding chronic
fatigue syndrome/fibromyalgia (CFS/FM), improve their understanding and
acceptance of these diseases, make them feel more comfortable in diagnosing
and treating patients.

Method
Third-year medical students were surveyed before and after an educational
intervention program. The three questions posed to the students in the survey
were: (1) How comfortable do you feel you are in diagnosing and treating
patients with CFS /FM?, (2) Do you consider CFS/FM legitimate illnesses?, and
(3) Do you want to treat patients with CFS/FM?

Results
The educational intervention program helped about half of the future
physicians feel comfortable in diagnosing and treating patients with CFS/FM
and improved by over 25% their willingness to treat patients with CFS.

Conclusion
An educational intervention program appeared to improve future physicians'
understanding and appreciation of CFS/FM, made them feel more comfortable
diagnosing and treating these diseases, and increased their willingness to
treat patients with CFS/FM.

KEYWORDS. Chronic fatigue syndrome, fibromyalgia, educational intervention
program, comfort in diagnosing and treating, willingness to treat


INTRODUCTION

Patients with chronic fatigue syndrome/fibromyalgia (CFS/FM) often have
symptoms and complaints regarding multiple organ systems without obvious
confirming laboratory abnormalities (1). They are sometimes unfairly
perceived by their physicians to be difficult patients who require both
pharmacological as well as non-pharmacological treatments (2). In addition,,
patients with CFS/FM often have difficulty finding a physician who
understands the complexity of their symptoms, accepts their illness as
legitimate, and is willing to treat them (3,4).


There has been little research into how to address the skepticism among
physicians that makes it difficult for patients with CFS/FM to obtain
treatment.
The objective of this study was to determine whether an early
educational intervention would alter the perceptions and attitudes of future
physicians, improve their understanding and acceptance of these illnesses,
make them more comfortable in diagnosing and treating these patients.
Furthermore, the study also intended on determining whether this intervention
would help make the future physicians more willing to treat patients with
CFS/FM.


METHODS

Third-year medical students who have just completed their clinical rotations
were surveyed as to their perceptions and attitudes regarding CFS/FM and
their willingness to treat patients with CFS/FM. They were surveyed before
and after an educational program that involved a live-case presentation of a
patient suffering from CFS/FM. Students had the opportunity to interact with
and ask the patient questions concerning CFS/FM. Following the case
presentation, students were given a lecture with information on how to
accurately diagnose CFS/FM and on dispelling myths and misconceptions about
patients with CFS/FM. Topics covered in thelecture included CFS Fukuda
criteria (5) and FM diagnostic criteria (6), general CFS/FM prevalence rate
as well as prevalence rate by race, age and occupation and the prevalence of
CFS compared to other disorders (7). Subsequently, there was a panel
discussion on this case study where information on multiple pharmacological
as well as non-pharmacological modalities such as acupuncture, homeopathy,
mind-body-techniques and nutritional supplementation were offered. The goals
of the intervention were to help the students: (1) feel more comfortable
diagnosing CFS based on the Fukuda criteria and diagnosing FM based on the
American College of Rheumatology criteria, (2) increase familiarity with
various pharmacological options as well as non-pharmaco- logical treatment
options such as acupuncture, homeopathy, mind-body techniques and nutrition
used for the management of CFS and FM, and (3) understand how conventional
and various complementary and alternative medical approaches can be
integrated in the management of patients with CFS and FM.

Before and after the introduction of the program, students filled out a three
item questionnaire using the following questions: (1) How comfortable do you
feel you are in diagnosing and treating patients with CFS /FM?, (2) Do you
consider CFS/FM legitimate illnesses?, and (3) Do you want to treat patients
with CFS/FM? Each question was answered using a rating scale (very
comfortable to very uncomfortable) or by binary responses (is or is not
legitimate). Forty-three third-year medical students returned their pre- and
post-survey questionnaires. Of those 43 students, 65% were female and 25%
were male. The ethnic composition of the class was 0.8% Latino, 2.3% African
Americans, 3.8% Asians, and 93% Caucasians.


RESULTS

The first analysis involved students' comfort in diagnosing and treating
patients with CFS and FM. Prior to the intervention, none of the students
felt very comfortable and almost half of the students (48.8%) felt
uncomfortable in diagnosing and treating patients with CFS/FM. After the
intervention, the number of students who felt uncomfortable in diagnosing and
treating CFS/FM was reduced from 21 to 10 or 23.3%. This change in percentage
was tested using the Wilcoxon Signed Ranks test, which was found to be
statistically significant (z =-3.500, p<.001).

The next question assessed whether students felt that CFS and Fibromyalgia
were legitimate disorders. Initially, 72.1% of the students reported that
they felt that CFS was a legitimate disorder, with 27.9% of the students reporting that CFS was not a legitimate disorder. After the intervention, 81.4% reported that CFS was a legitimate disorder, compared to 18.6% who did not report that CFS was a legitimate disorder. The intervention changed the perception of 4 out of 12 students (33.3%) who previously had felt that CFS was not a legitimate illness. Similarly, 81.4% of students reported that they
felt that FM was the legitimate disorder prior to the start of the
intervention, and 18.6% of the students did not initially feel that FM was a legitimate disorder. After the intervention, 90.7% reported that FM was a legitimate disorder, compared to 9.3% who did not feel that FM was a legitimate disorder. The intervention changed the perception of 4 out of 8 (50.0%) students to feel that FM was a legitimate illness.
However, the
differences in perception before and after the intervention were separately
tested for CFS and FM using the McNemar test, and changes in perception for
CFS (p=.22) and FM (p=.22) were not found to be statistically significant.

A third set of analyses was conducted to assess pre and post intervention
changes regarding the willingness of students to treat patients with CFS and
FM. Prior to the intervention, only 37.2% expressed willing to treat a
patient with CFS, and this number increased after the intervention to 53.5%
of the students. Similarly, only 39.5% were willing to treat patients with FM
prior to the intervention, and after the intervention, this number increased
to 55.8%. Seven more students (25.9%) were willing to treat patients with CFS
from the 27 who were initially unwilling to treat CFS. Similarly, for FM, 7
more students (26.9%) were willing to treat patients with FM from the 26 who
were initially unwilling. The change in willingness to treat either CFS or FM
was tested separately using the Wilcoxon Signed Ranks test, and was found to
be statistically significant for both CFS (z =-2.65, p<.01) and for FM
(z=-2.65, p<.01).


DISCUSSION

An educational intervention helped future physicians feel more comfortable in
diagnosing and treating patients with CFS/FM. This educational intervention
also improved their willingness to treat patients with CFS and FM. The four
important features of this educational intervention included: (1) providing
accurate facts on CFS/FM; (2) dispelling myths and misconceptions about
patients with CFS/FM; (3) presenting a live case to allow face-to-face
interaction with a patient with CFS/FM; and (4) increasing students'
awareness of multiple pharmacological and non-pharmacological treatment
options.

By incorporating these four principles into the design of the educational
intervention program, the intervention was able to help about 50% of the
future physicians feel comfortable in diagnosing and treating patients with
CFS/FM. This early intervention program also improved future physician's
willingness to treat patients with CFS by at least 25.9% and patients with FM
by 26.9%. Even though 33% more accept CFS as a legitimate illness and at
least 50% more accept FM as a legitimate illness after the intervention, the
changes in perception for CFS and FM were not found to be statistically
significant. This was probably due to the fact that a high percentage of the
students felt that CFS and FM were legitimate disorders from the start (72%
for CFS and 81% for FM). This intervention did not seem to significantly
further improve the perception that CFS and FM were legitimate disorders.

Future research should determine whether administering this early educational
program to a group of physicians with a higher initial skepticism about the
legitimacy of CFS and FM as real medical conditions alters their attitude.
Furthermore, it would be useful to know which features of the educational
intervention have the strongest impact and whether more direct patient
encounters and case presentations alter future physicians' acceptance of
CFS/FM as legitimate illnesses warrenting treatment.

It appears that early educational intervention could improve future
physicians' understanding and appreciation of CFS/FM, make them feel more
comfortable in diagnosing and treating those patients and increase their
willingness to treat patients with CFS/FM. This could improve their ability
to care for patients with CFS/FM; help these patients find validation and
treatment, improving their overall satisfaction with the medical profession
as well as their personal well-being; and increase our understanding of a
complex medical problem that is more pervasive than commonly understood.


REFERENCES

1. Jason LA, Fennell P, Taylor RR. Handbook of chronic fatigue syndrome & fa-
   tiguing illness. New York, NY: John Wiley & Sons, Inc., 2003.
2. Asbring P, & Narvanen AL. Ideal versus reality: Physicians perspectives on
   patients with chronic fatigue syndrome (CFS) and fibromyalgia. Social
   Science & Medicine 2003; 57: 711-720.
3. Looper KJ & Kirmayer LJ. Perceived stigma in functional somatic syndromes
   and comparable medical conditions. Journal of Psychosomatic Research 2004;
   57: 373-378.
4. Green J, Romei J, & Natelson BJ. Stigma and chronic fatigue syndrome.
   Journal of Chronic Fatigue Syndrome 1999; 5: 63-75.
5. Fukuda K, Strauss SE, Hickie I, Sharpe MC, Dobbins JG, & Komaroff A. The
   chronic fatigue syndrome: A comprehensive approach to its definition and
   study. Annals of Internal Medicine 1994; 121: 953-959.
6. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C, Goldenberg DL,
   et al. The American College of Rheumatology 1990 criteria for the
   classification of fibromyalgia. Report of the multicenter criteria
   committee. Arthritis Rheum. 1990; 33: 160-172.
7. Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
   McCready W, Huang C & Plioplys S. A community-based study of chronic
   fatigue syndrome. Archives of Internal Medicine 1999; 159: 2129-2137.

--------
(c) 2007 The Haworth Press

* * *

Too many doctors are of the impression that there are no tests that prove CFS/FM, therefore, they cannot be legitimate diseases.  20+ years after Peterson/Cheney determined there were abnormalities on MRIs, it's still something known only within the CFS community.  WHY?????

What little is taught about CFS in medical school tends to reflect the professor's own opinion, and not the facts.  The professor learned back in the 1980s when he was in medical school that it was a disease affecting only spoiled Yuppie women, or depressed menopausal women, and that's what he's teaching, oblivious to the scads of evidence that this is not true. 

We need more professors likeLenny Jason who set out to prove to the students that what they may have learned from some other professor is inaccurate.  Textbooks need to be changed (rumor has it that there's only one paragraph about CFS, and it's inaccurate information).

I know most patients are hard-pressed to get through life as it is, but perhaps some of our healthier/more mobile patients could pay a personal visit to their nearest medical school to answer students' questions and enlighten them to the facts -- the 5000+ research studies showing objective, quantifiable abnormalities, the neurological involvement that wouldn't be apparent on basic blood tests, etc.  If their professors aren't teaching them the truth, then the patients have to.

* * *

On a related topic:

From Joanne joanne@BRAYDEN.ORG :


Medscape Continuing education credits for doctors

CME
Therapeutic Advances for Fibromyalgia and Implications for Clinical Practice
Daniel J. Clauw, MD; Don L. Goldenberg, MD; and Hartej Sandhu, MD, discuss
some of the recent therapeutic advances for fibromyalgia and their
implications for clinical practice


http://www.medscape.com/viewprogram/8307

Thursday, February 7, 2008

CFS Facts

Tom Hennessy writes:

 The FACT is that Myalgic Encephalomyelitis is one of the
  most serious illnesses on the face of the planet.

  The FACT is that we have been lied to, mistreated, and
  abused by the very people who are paid to protect us.

  The FACT is that CFS (which is NOT ME) is the third lowest
  funded illness at the US National Institutes of Health.

  The FACT is that the Centers for Disease Control is
  criminally liable for deliberately making a faulty definition
  in 1988 without any REAL ME experts on the panel. Virtually
  NONE of the original members of the Holmes Criteria group
  had NEVER treated a patient in a clinical setting.

  The FACT is that I was the first, the longest serving and
  the most articulate spokesman for the "change the name
  movement".

  The FACT is that US based physicians have failed their
  patients and their medical oaths to "First do no Harm!"

  by allowing this atrocious CFS definition to be adopted in
  1988, and then they compounded their errors in 1994, when
  they made a bad definition worse.

  Now, in 2007, they have bastardized the patient cohort
  further to claim that up to 2.5% of the US population has
  "CFS".

  The FACT is that in my original speech to those 600 doctors
  at the First CFS conference in April of 1989, I presented a
  poster with a picture of an iceberg floating just under the
  surface of the ocean. On my poster I showed the CDC estimate
  of "4 to 10 people per 100,000" as the TIP of the iceberg.
  I claimed that there were at least 3 levels of ME/CFS.

  I said that level 1 was "people who were homebound or
  bedbound. My estimate at least 250,000 Americans".

  I said that Level 2 was "People who could only work or
  attend school on a part time basis. they needed help with
  shopping, cleaning, and daily activities. My estimate
  500,000 people.

  And I said that Level 3 was "people who were One chemical,
  viral, or bacterial insult away from complete and crushing
  disability.

  My estimate 5 to 6 million Americans. This was in 1989!

  I said that the go-go 1980's and the introduction of more
  than 50,000 various chemicals introduced in this century,
  the massive increase of vaccines which were NOT often tested
  in combinations.

  I believed that a negative synergistic paradigm was going
  to change medicine from chasing ONE mysterious virus (a la
  HIV, this was 1989) to looking for ANY insult against a damaged
  or predisposed host.

  I quoted Louis Pasteur who said more than 100 years ago,
  "The antigen is nothing, the terrain is everything!" I think
  Pasteur was right!

  It is a FACT that I took a LOT of heat for saying that I
  thought these conditions were a case of "different insult,
  same result".

  I presented a poster of a train on a track. I said that the
  immune system was one rail of the track and that the Central
  nervous system was the second and parallel track. I said that
  the railroad ties were Genetic predisposition, psychological
  predisposition, vaccine exposure, viral exposure, various
  infections, chronic stress, poor diet, unrestorative sleep,
  accidents, chemical poisoning, food poisoning, other toxins.

  I said that the train can run along rickety or rotted tracks
  for a period of time, but if you put a bad batch of fuel in
  the train, the engine could misfire and then the train would
  buck. And if this happened just as the train was passing
  over these railroad tracks, the railroad ties could crack
  and split, the rails would splay out and the train would
  derail.

  And I said the hardest headed, hardest charging, type A
  personalities would derail the worst.

  Before I started my presentation in Front of the top Docs
  of the Day, including Dr. Phil Lee, Dr. Paul Cheney,
  Dr. Dan Peterson, Dr. David Bell, Dr. Jay Levy, dr. William
  Reeves, et al, I said "I feel like a minor league pitcher
  being brought up to pitch in the Hall of Fame game.... I
  don't feel qualified to speak in front of the masters of the
  game...".

  But when I finished, Dr. Tony Komaroff who was chairing that
  part of the conference said "I just want to tell the audience,
  that this was a Major league pitcher throwing strike outs in
  the World Series!"

  Now, almost 19 years later, Dr. William Reeves of the CDC is
  using American Tax dollars to do detailed blood tests, genetic
  tests and psychological tests on new military recruits to try
  and find out who might be more likely to come down with future
  versions of "gulf war illness".

  It is also a FACT, that I was the first person anywhere to
  link "gulf war illness" with "all these whiney white women
  who can't handle stress" (meaning CFS patients).
This is on
  tape. I said these comments on International TV, CNN's Larry
  King Live on May 4, 1991.

  I said "The US government will spend more than half a billion
  dollars per day to blow Saddam Hussein back to the stone age,
  but they won't spend even one million dollars per year to
  treat the soldiers who are coming home sick. They have a
  condition similar to what we have!".

  A few years later, the brilliant Garth Nicholson, who has
  published more than 400 papers on Cancer tumor cell biology
  said, "Hennessy was right. Gulf war syndrome is not just
  similar to CFS, it is almost identical".

  A high ranking government official back in 1995 or 1996
  called me at home and said "you will not believe what
  happened today in a secret government meeting in Congress
  about possible links between CFS and GWS.

  The informant told me that the CDC's William Reeves, when
  asked directly by a top Congressman "Is there any link
  between CFS and GWS? that Reeves replied , "a Mr. Hennessy
  and his group were right early and often. GWS doesn't
  appear to be just one, new or unique illness. But it
  closely resembles CFS. They might even be identical
  syndromes!"

  I have NEVER claimed that they were the same. I said that
  they were similar and that we should use large relational
  databases of symptoms and blood tests, autonomic nervous
  system tests, neuroendocrine tests, objective, quantifiable,
  verifiable tests that can be duplicated by even skeptical
  scientists to prove that we are in fact not just disabled,
  but GRAVELY ill.

  As Dr. Marc Loveless said when I spoke to Dr. Alexis Shelekov
  back in 1992 at the Albany Conference on CFS. I asked
  Dr. Shelekov if the epidemic Neuromyesthenia that he studied
  in the 1950's and early 1960's with dr. D. A. Henderson
  could be the infamous "ME/CFS" of the early
  1990's.

  I asked Dr. Shelekov if had any treatment recommendations
  for the "crippling, burning, searing nerve pain I felt all
  over my body, 24/7. Pain that NEVER stops" and Dr. Shelekov
  said "Tom, what you describe is worse than what we saw.
  People were suffering and they aches and pains, but it
  didn't feel life threatening". And I said "Dr. Shelekov,
  with God as my witness, I feel like someone has twisted every
  nerve and fiber in body into braids, then beaten to within
  an inch of my life, all day, every day of my life. It is
  brutal beyond imagination".

  Dr. Shelekov looked puzzled and maybe a little sceptical.
  But Dr. Marc Loveless, sitting next time to him said,
  "Dr. Shelekov, this man (meaning me) is telling you the truth.
  I have treated more than 2500 AIDS and CFS patients over
  the past 12 years. and my CFS patients are MORE sick and
  MORE disabled, every single day, than my AIDS patients are,
  except in the last two weeks of life!"

  I immediately said to Dr. Loveless that "YOU have to use
  that line in every speech you give on this illness for the
  rest of your life!" (in 1994, Dr. Loveless gave this same
  testimony under oath to the US Congress).

  More later... hands cramping too much to type more now...

  TMH

Tom and Erik on the confusion between "fatigue" and CFS

Tom Kindlon:

  I remember learning French and coming across a list which they
  called "Faux amis" (literal translation: false/wrong friends). These
  were lists of French words which one might think had one mean
  (because they were the similar or the same as English words) but were actually different.

  I think this is the problem with Chronic Fatigue Syndrome - people
  whether lay people or doctors think they know what it is.
I'm not
  convinced that it is worth keeping in the long-term for this reason.
  The problem mightn't be so bad but people with CFS (strictly
  defined/Incline-Village defined!) have unusual reactions to things
  that people/doctors often wouldn't have expected in all sorts of
  systems in the body.

Erik Johnson:

  Assertions that the similarity to "chronic fatigue" is too confusing
  brings up the question of whether or not this is true.

  Are they truly intellectually incompetent, or merely saying so as a
  passive aggressive ploy?

  A simple test follows:

  "I am cold".

  "I have a cold".

  If one is mentally capable of discerning the difference in this
  example, they are not sufficiently impaired to be unable to understand
  the critical components of CFS history, and cannot reasonably rely upon
  personal confusion as a continued excuse for miscomprehension.

  They're only pretending to be dumb, hoping you won't notice their little trick, and call attention to how transparently disingenuous their little ploy is!

* * *

And therein lies the problem.  The name CFS was intentionally chosen (per documents Hillary Johnson received via FOIA request) for its similarity to "chronic fatigue" which every working woman has, and the psych-based "fatigue syndrome" to cause just such confusion.

That soon after admitting they had an incurable virus named AIDS on their hands, CDC didn't want to admit to having another incurable virus that caused severe problems, so they gave it a name designed to minimize it.

Psychologists jumped on it, and played mind games (their specialty) to convince everyone that CFS is just another name for depression.  When patients described symptoms that don't go with depression, they were told they were imagining things.  It was implied that the patients were too stupid to know what they were experiencing. 

I threw up every morning (which is not a symptom of depression) and then went to work anyway, yet I was initially diagnosed with "not wanting to work".  If you don't want to work, then you call in sick every time you throw up ... you don't go to work anyway.  But apparently logic is not a mandatory course in medical school, because so much of what doctors tell CFS patients is wholly illogical.

And then they have the gall to tell us "you make no sense."  Well, yeah, because I studied logic in law school (and before) and I recognize when someone is twisting my words and reversing cause and effect, in order to make my story fit what he wants to hear.  It won't make sense to a doctor who wants to diagnose post-divorce depression to have the patient insisting that she had the same symptoms before, during and after marriage.  So, he pulls out the attitude of "I am the doctor, so I'm smarter than you" (or, conversely, "you are not a doctor therefore you cannot possibly have enough intelligence to know what symptoms you have and when they started").

If you want to write fiction, write fiction.  But don't do it under the guise of medical records and medical research!

Diana's Blog

Diana is a medically-retired nurse who has CFS or ME or whatever you want to call it

  Welcome to Diana's World 1997- 2008
  http://hometown.aol.com/dgsaba/myhomepage/index.html

She has a lot of good links worth exploring.

Diana refers you to http://www.ncf-net.org/library/nurses.html , a study of the prevalence of CFS among nurses, which concludes that they are a high-risk group.  I'll note that in the 1934 LA Hospital, 1955 Royal Free Hospital, and 1975 Mercy San Juan Hospital epidemics, many of the patients were doctors and nurses. 

 

What is Rheumatology? What is CFS?

[Ed. Note: You can tell when a medical group first recognized CFS by where it's treated.  Those who dealt with it early on have it filed under Infectious Disease, since it has viral onset.  Then it was moved to Rheumatology, because it has symptoms in common with fibromyalgia, which is treated in that department.  Few, if any, medical groups correctly file it under Neurology.  Thanks to LKW for these explanatory comments.]

What is a Rheumatologist?
--------------------------

A rheumatologist is an internist or pediatrician who is qualified by
additional training and experience in the diagnosis and treatment of
arthritis and other diseases of the joints, muscles and bones. Many
rheumatologists conduct research to determine the cause and better
treatments for these disabling and sometimes fatal diseases.

What Kind of Training Do Rheumatologists Have?
--------------------------------------------------

After four years of medical school and three years of training in either
internal medicine or pediatrics, rheumatologists devote an additional two to
three years in specialized rheumatology training. Most rheumatologists who
plan to treat patients choose to become board certified. Upon completion of
their training, they must pass a rigorous exam conducted by the American
Board of Internal Medicine to become certified.

What Do Rheumatologists Treat?
---------------------------------

Rheumatologists treat arthritis, certain autoimmune diseases,
musculoskeletal pain disorders and osteoporosis. There are more than 100
types of these diseases, including rheumatoid arthritis, osteoarthritis,
gout, lupus, back pain, osteoporosis, fibromyalgia and tendonitis. Some of
these are very serious diseases that can be difficult to diagnose and treat.

~

Below is a recent (2007) abstract of Klimas'. Apparently, even tho the USA
CDC's 'CFS' (Fukuda, et al) has always been classified by them--who made it
up b/n 1988 and 1994--under Vector Borner and Zoonotic...she is now
presuming it is actually a Rheumatological illness???



Before we proceed, here's another important Reminder:
--------------------------------------------------------

ME (Myalgic Encephalomyelitis) is and always has been classified by the WHO (World Health Organization) under a different bodily system:

-->G93.3, Neurogenic (which means it starts in the Brain).

And the initial damage--from a sudden onset viral event--then affects the brain, brain stem and CNS (Central Nervous System). This then causes a 'cascade of effects throughout the body' similar to the demylination of MS.  Hence, it becomes a 'multi-system illness'.


It is NOT considered to be a Rheumatological disorder. It never has been.


~


Moving on:

All 'CFS' studies to-date have been done on 'mixed patient groups'. This
means the data they produced is also 'mixed'. In other words, not very
relevant.

When will we start seeing, as Dr Neil Abbot recently phrased it:
"significantly comparable groups of patients" studied?

Can we please once and for all get our facts and names and terminology and
classifications straight - so some progress can be realized?

For a supposedly 'lead' and 'researcher' to be so casual about all of this
is...shocking, distressing and mindblowing. And it should cause us ALL to
pause and ask what her true intent is, and where her loyalties lie.  She was
one of the 11 authors of the 2003 ME/CFS Canadian Criteria, which first
'blended' together ME & CFS in the first place. The rationale for doing this
remains sketchy.... And she worked on that project while still working with
Reeves, et al, at the USA CDC on 'fatiguing illnesses', which he/she/they
have always postured was 'psychological'....

Oh, and P.S. There are no 'subgroups' under 'CFS' because 'CFS' is a
man-made construct. And it's manufacture has effectively stonewalled
meaningful research into both ME, and ALSO into whatever it is that the
majority of 'CFS' patients have (Lyme, mono, Q fever, thyroid, bi-polar,
organophosphate and radiation poisonings, clinical depression, etc.).

- SEPERATE
- CLASSIFY CORRECTLY
- STUDY INDEPENDENTLY

It is the only way to do it properly and correctly.


LKWoodruff
lkw777@charter.net


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Chronic Fatigue Syndrome: Inflammation, Immune Function, and Neuroendocrine
Interactions [abstract]


Nancy G. Klimas and Anne O'Brien Koneru

Corresponding author:
Nancy G. Klimas
University of Miami Miller School of Medicine, 1201 NW 16th Street, VA
Medical Center, 200 BMRC, 6th Floor, Miami, FL 33125, USA.
Email: nancy.klimas@va.gov


Current Rheumatology Reports 2007, 9:482-487
Current Medicine Group  LLC ISSN 1523-3774
Copyright © 2008 by Current Medicine Group LLC


Investigations into the underlying cause of chronic fatigue syndrome have
advanced the field considerably in the past year. Gene microarray data have led to a better understanding of pathogenesis. Recent research has evaluated genetic signatures, described biologic subgroups, and suggested potential targeted treatments. Acute viral infection studies found that initial infection severity was the single best predictor of persistent fatigue.
Genomic studies showed that persistent cases express Epstein Barr
virus-specific genes and demonstrate abnormalities of mitochondrial
function. Studies of immune dysfunction extended observations of natural
killer cytotoxic cell dysfunction of the cytotoxic T cell through
quantitative evaluation of intracellular perforins and granzymes. Other
research has focused on a subgroup of patients with reactivated viral
infection. These advances should result in targeted therapies that impact
immune function, hypothalamic-pituitary-adrenal axis regulation, and
persistent viral reactivation.

Congressional Bill Threatens Patients

...bill states common incandescent light bulbs will begin being phased out by 2012...Fluorescent and halogen lights, due to the ultraviolet rays that they emit, adversely affect many lupus patients. ...Exposure to ultraviolet light can stimulate the immune system, causing a “flare.” This “flare” can cause many complications of the illness including kidney failure, intense physical pain, neuropathy, migraines and a variety of other symptoms. ...  In simple terms this also means that if you don’t have lupus the exposure to ultraviolet light emitted by the new acceptable fluorescent light bulbs can cause you to manifest lupus or related conditions. ...

* * * * * * * * * * * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© 2008 Sean Dudley & Leslee Dudley. All rights reserved.
http://groups.yahoo.com/group/MycoplasmaRegistry/
MycoplasmaRegistry-subscribe@yahoogroups.com
* * * * * * * * * * * * * * * * * * * * * * * * * * *

Lupus International Urges Congress to Amend H.R. 6,
the Energy Independence and Security Act of 2007
LUPUS INTERNATIONAL
PR Web (press release) - Ferndale,WA,USA
http://www.prweb.com/releases/Lupus/HR_6/prweb677444.htm

(PRWEB) February 4, 2008 -- Lupus International recently issued the following letter to their constituents nationwide:

Dear Lupus Awareness Advocate,

Congress recently passed and our President signed into law, H.R. 6, the Energy Independence and Security Act of 2007. This bill states common incandescent light bulbs will begin being phased out by 2012. Congress has not considered all the ramifications of this bill, and unfortunately it will adversely affect many Americans. Their health and well-being will be compromised.

Forcing people to be energy conscientious at the expense of other’s good health is not constitutional and could create many legal issues at the expense of taxpayers. The exemption provisions, which were written into the bill, are too obtuse and inaccessible making it impossible for most anyone to take advantage of them.

Fluorescent and halogen lights, due to the ultraviolet rays that they emit, adversely affect many lupus patients. It is highly recommended that patients wear sunscreen to prevent a potentially life threatening “flare” of their condition. Lupus is an autoimmune disease. Exposure to ultraviolet light can stimulate the immune system, causing a “flare.” This “flare” can cause many complications of the illness including kidney failure, intense physical pain, neuropathy, migraines and a variety of other symptoms.

Exposure to ultraviolet light from fluorescent light bulbs, which are the only viable alternative permitted by the bill, is truly asking a great deal of someone in the sanctuary of ones own home, who is constantly protecting themselves outside or in their work environment.

Lupus International recognizes the importance of energy conservation. However, our government put into law a bill that would essentially make many Americans unhealthy.

According to the January 2008 issue of The New England Journal of Medicine, candidate environmental triggers of SLE (systemic lupus erythematosus) include ultraviolet light, demethylating drugs, and infectious or endogenous viruses or viral-like elements.

In simple terms this also means that if you don’t have lupus the exposure to ultraviolet light emitted by the new acceptable fluorescent light bulbs can cause you to manifest lupus or related conditions.

Lupus International at this time asks you to read statements from candidates running in the presidential primaries. We asked each of them what their position was on the new law. Here are the responses from the candidates who are still running:

Democratic candidate Barack Obama supports updating federal lighting efficiency standards to ensure that new lighting technologies are phased into the marketplace. He supports legislation phasing out traditional incandescent light bulbs, and would also support an amendment to better protect those who would be medically adversely affected by the elimination of traditional incandescent light bulbs.

Republican John McCain, was not able to supply a formal statement, however, his policy advisors indicated this is a concern and that he is interested in protecting those affected by this bill.

Republican Ron Paul, “I was not able to be in Washington when the bill banning incandescent light bulbs was voted on; however, had I been able to vote on this bill, I certainly would have voted no. As president, I will work to repeal the ban on incandescent light bulbs. If I am not able to gather sufficient support in Congress for a repeal of the incandescent light bulb ban, my administration will work with the Lupus International Foundation, and other parties adversely affected by this outrageous, unconstitutional action by Congress, to mitigate the harm done by the ban”.

Lupus International did not receive responses from Democrat Hillary Clinton, Republican Mike Huckabee or Republican Mitt Romney.

All presidential primary candidates were contacted. Of those not currently in the race, only Democrat John Edwards expressed a willingness to help and support this issue.

Please take the time to sign the Lupus International petition to get the ENERGY AND INDEPENDENCE ACT OF 2007 AMENDED to make access and economic alternatives realistic for lupus patients and others affected by ultraviolet light. http://www.lupusinternational.com/join/petition.aspx

###

Contact Information: Christina Kelly
LUPUS INTERNATIONAL, Website: www.lupusinternational.org  
17985 Sky Park Circle, Suite J, Irvine, CA 92614, Toll Free Tel:  888.532.2322

© Copyright 1997-2008, Vocus PRW Holdings, LLC.

* * *
Margaret Holt Baird, Esq. is collecting personal experiences with adverse effects from fluorescent bulbs, especially the new compact fluorescents, which the manufacturers insist have fixed the problems of the old ones, and which patients say have NOT fixed the problems.  Send your experiences to her at UNCmom59@aol.com
 
Margaret is threatening an ADA lawsuit on behalf of people whose symptoms will be made worse by mandatory use of fluorescent lights.

Wednesday, February 6, 2008

CFS and your weight

Prospective Study of Body Mass Index, Weight Change, and Fatigue in
Acute Infectious Mononucleosis

Journal: J of Chronic Fatigue Syndrome, Vol. 14, No.3, 2007, pp. 27-36

Authors:Ellen A. Schur, Carolyn Noonan, Dedra S. Buchwald


Objective: To examine the influence of body mass index (BMI) and
weight change on fatigue severity and failure to recover in
individuals with acute infectious mononucleosis.

Methods: We prospectively studied 148 individuals presenting with a
positive monospot test. We obtained measured weights and vitality
subscale scores from the Short Form-36 Health Survey (SF-36) at the
index visit and at 6 months.

Results: The mean age of the participants was 21 years and 24% were
overweight or obese. During acute illness, overweight and obese
participants had an adjusted odds ratio for low vitality scores of
2.9 (confidence interval 1.2-7.1) compared to normal weight subjects.
Neither index BMI nor 6-month weight gain was significantly
associated with prolonged fatigue or failure to recover.

Conclusion: Overweight and obese patients with acute infectious
mononucleosis are more likely to experience severe fatigue. In
contrast, neither baseline weight nor weight gain appear to impede recovery.


* * *

Do not let any doctor tell you that you got sick because you're overweight.  I was 10 pounds underweight when I got the virus.  I had been sick for 14 years before my weight finally got out of the "normal" range for the first time.

Nonetheless, I had doctors blaming "obesity" (while I was still in the normal weight range!) for the problems because they couldn't process that the weight gain was the result of the virus, not vice versa.  They hear what they want to hear, and not what you say, so, in contradiction of all the prior medical records listing my weight as being normal, some of them noted that I'd always been overweight because that was what fit with their personal theory ... the heck with whether it was true. 

If your doctor wants to tell you that the cure for CFS is to lose weight, refer him to this study, then tell him to stop giving you pat answers and look for the real problem.  The solution to CFS is not found in "easy answers" or even "one size fits all".

Chat w/Dr. Klimas - Part 1 of 3

http://www.immunesupport.com/library/showarticle.cfm?id=8646&T=CFIDS_FM&B1=EM020608F

Q&A Session (held Jan. 11) with Nancy G. Klimas, MD – A Central Figure in International ME/CFS/FM Research and Treatment


ImmuneSupport.com

01-28-2008

Welcome to ProHealth's Live Chat Q&A (held Jan. 11, 2008) with Dr. Nancy Klimas, MD - a noted immunologist and a world leader in ME/CFS/FM/Gulf War Illness research, treatment, education, and advocacy. Dr. Klimas is:

n President of the International Association for CFS/ME (IACFS/ME) –– a global organization dedicated to the exchange of information about CFS/ME and FM research, care, and treatment.

n Professor of Medicine-Psychology, Microbiology, and Immunology at the University of Miami (FL) School of Medicine;

n Director of the University’’s EM Papper Laboratories of Clinical Immunology and VA Gulf War Illness & ME/CFS Research Center.

______________________

Q: Doctor, I have CFS but some people just don't believe I am really ill. I can look so normal and feel so bad. How can I convince them this is real? Is there an online source for research that we can print out to increase awareness about the depths of this debilitating illness?

Dr. Klimas: The CDC has published very convincing studies on this exact question. They have shown that CFS/ME patients can experience a level of disability that’’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, and patients with multiple sclerosis. You can find this information on the CDC and the CFIDS Association of America web pages. Here is one meant for doctors: http://www.cfids.org/sparkcfs/health-professionals.asp. The first page of the Physician Toolkit quotes the CDC’’s Dr. William Reeves on this subject. * * * *

Q: Do you feel Chronic Fatigue Syndrome and Fibromyalgia are one and the same?

Dr. Klimas: No, though there is considerable overlap. I don’’t even consider all ME/CFS the same - there are subgroups, and subgrouping is going to be the key to effective therapy. There are already biomarkers in development that will tell both FM and CFS apart and define the overlapping groups - as well as studies to develop the biomarkers that distinguish different subtypes of CFS.

* * * *

Q: Doctor, what do you think of Dr. Jonathan Kerr's gene expression findings? [See ""Seven genomic subtypes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis"" published in December 2007.]

Dr. Klimas: It is very exciting! His data, and that of Dr. Vernon, should lead to both biomarkers and treatments that are individualized. [Dr. Suzanne Vernon, PhD, was recently named Scientific Director of the CFIDS Association. A research team she led in her previous work at the CDC identified three genetic variations in ME/CFS serotonin synthesis that correlate with different measures of disability and fatigue.]

* * * *

Q: What do you think of the Sakudo diagnostic blood test for CFS using visible and near-infrared spectroscopy? Have you heard any news as to progress on this?

Dr. Klimas: Dr. Sakudo, a researcher at Osaka University, presented additional data at a meeting I attended in Scotland last summer –– the International Conference on ME/CFS Biomedical Research. It’’s still looking good.

* * * *

Q: Any thoughts on Dr. John Chia’’s findings on enterovirus in stomach biopsies, published last fall? [An enterovirus is defined as ""a virus that enters the body through the gastrointestinal tract and thrives there, often moving on to attack the nervous system.""]

Dr. Klimas: Isn’’t that interesting! Dr. John Gow at the University of Glasgow had some early data suggesting enterovirus in the muscle, but it didn’’t really pan out. Now we have this important study on the gut! Shows how important it is to look in every type of tissue.

The main thing here is to remember that when the immune system lets one virus out, it can let out many –– and antivirals directed at HHV-6 (Human Herpesvirus 6) and EBV (Epstein-Barr virus) aren’’t going to work on enterovirus. Of course, I am an immunologist and believe immune boosting drugs may be very important.

* * * *

Q: Dr. Klimas, do you know much about Dr. Gow’’s recent research? It seemed to be showing promise a few years ago, but I have heard nothing recently.

Dr. Klimas: Last time I spoke with Dr. Gow, he was working on a genomics project, and had some pretty cool data. I haven't heard him talking about enterovirus for a while.

* * * *

Q: Is your hunch that this is a viral and/or bacterial illness (or illnesses) that is still active in patients, or do you think that it is a "hit and run" attack on the brain?

Dr. Klimas: Oh, both I think. It’’s all back to subgroups with this question. I know that there are patients with reactivation viruses active right now (look to Dr. Dan Peterson, Dr. Martin Lerner, and Dr. Jose Montoya for their work in HHV-6 and EBV infection). And enterovirus reactivation is a worry (see Dr. Chia’’s study on this subject). That does not mean these pathogens started the process - but that they help maintain it.

* * * *

Q: I have been ill since I had mono 10 years ago. Why am I still sick when others recover completely from mono?

Dr. Klimas: A recent prospective study found that the one single predictor of who is going to stay sick after a viral infection is the severity of the initial viral infection. Patient advocates have been happy to note that there were no psychiatric predictors.

I suspect that the most important factors are a combination of genetics, immune function at the time of the inciting infection, and the inciting virus itself. The virus that causes mononucleosis (Epstein-Barr virus –– EBV) is particularly tough on the immune system.

* * * *

Q: My chronic fatigue illness started with infectious mono. After about a year, a very low vitamin D level was discovered. My doc thinks that this played a role in my immune system failing to contain EBV. Are there any references on this?

Dr. Klimas: Low vitamin D is a frequent finding even in my sunshine state –– Florida - and vitamin D is important to immune health. But I don't now if it was there to begin with or is a consequence of the illness.

* * * *

Q: Is it possible to have recurring bouts of EBV?

Dr. Klimas: There have been studies that show viruses at high levels during relapse and low during relative good times - mostly HHV-6 though. (Konnie Knox, PhD, at the Wisconsin Viral Research Group, did this work.)

* * * *

Q: The glands under my ears are often tender and sometimes visibly swell up. What could be causing this?

Dr. Klimas: There are lymph nodes there and your parotid glands, which help make saliva. Epstein-Barr virus loves to hang out in parotids...

* * * *

Q: Are you optimistic with regard to Dr. Montoya's work with the antiviral drug ValcyteTM [generic name valganciclovir] - its ability to help a subset of ME/CFS patients with chronic HHV-6 and EBV infection? And if so, do you agree that a positive correlation in his study, if found, will go a long way in legitimizing this illness?

Dr. Klimas: The first research to achieve an FDA label on any drug will go a long way to legitimize this illness –– look at LyricaR and FM! [Lyrica was the first prescription drug to receive FDA approval.] But it would be gratifying if that first label were on an antiviral or immunomodulator.

* * * *

Q: When will the results of Montoya’’s phase 2 trial of valganciclovir be published?

Dr. Klimas: I am hoping they will finish the data collection part of the study by June 2008 - but analysis and publication take time!

* * * *

Q: Treatments you are currently using or see possibly being helpful in the near future? How soon?

Dr. Klimas: 1. I am still hopeful that the IsoprinosineR company, Newport Pharmaceuticals, will move on the Phase 3 trials. [Results of the Phase 2 trial in Canada were summarized in the 2003 article ""Clinical Improvement in Chronic Fatigue Syndrome is Associated with Enhanced Natural Killer Cell-Mediated Cytotoxicity"".]

2. AmpligenR is at the FDA asking for a label. [Ampligen is believed to support upregulation of the immune system’’s RNase-L response to viral infection.]

3. By subgrouping, ME/CFS patients with elevated cytokine TNF-a may be directed to protocols using TNF inhibitors or blockers. [TNF –– tumor necrosis factor –– promotes inflammatory response. Jonathan Kerr, MD, PhD, director of a large ME/CFS human and viral gene expression study in the UK, announced at the 2007 IACFS/ME conference that he was engaged in a trial of the TNF-a inhibitor, Etanercept (EnbrelR), in a select number of CFS patients.]

* * * *

Q: Is there any test that you consider promising to diagnose ME/CFS?

Dr. Klimas: Yep - the exercise physiology group at the University of the Pacific Fatigue Lab presented data at the IACFS/ME conference on next-day decreases in exercise capacity after an exercise stress test. It’’s a great model, and we are taking advantage of it! [The report, just published, is "Diminished Cardiopulmonary Capacity During Post-Exertional Malaise." A companion study - "Legal and Scientific Considerations of the Exercise Stress Test" - analyzes the test's potential use for disablity insurance purposes.]

* * * *

Q: What is your impression of the drug LyricaR for Fibro treatment? Or any other meds you recommend?

Dr. Klimas: I like Lyrica, or sometimes gabapentin - which is a lot cheaper - for pain management, which in turn can help sleep. [Gabapentin –– brand name Neurontin - no longer has patent protection so is available as a generic.] I always start with sleep management, as restorative sleep is key to any improvement. There is a Fibromyalgia study underway using a stage 4 sleep inducer, Xyrem, which I believe is very promising.

* * * *

Q: Thoughts on low growth hormone in CFS?

Dr. Klimas: This is an important observation, though it could result from poor quality stage 4 sleep. I would not consider a treatment plan using growth hormone unless sleep has been addressed and the growth hormone was so low that it met criteria for Adult Growth Hormone Deficiency.

* * * *

Q: Doctor, can you give us your best sleep remedy?

Dr. Klimas: Magic pills...everyone wants a magic pill. It’’s just not that easy. But sleep can be worsened by many sleep remedies - particularly valium-like drugs such as RestorilR (generic name temazepam). Some of the newer drugs hit these same receptors - like LunestaR.

I think if you wake up exhausted you need a sleep study in a sleep lab - first to rule out things like apnea, but also to document the need for stage 3 and 4 sleep. Then treatments exist to address these problems.

* * * *

Q: Why would my fatigue come and go? It is not related to my sleep. I sleep very well every night.

Dr. Klimas: It is the nature of this illness to have good days and bad, and they are not always related to the quality of sleep. We have a study going on at our research center which we call the "Good Day/Bad Day"" study, trying to figure this out.

* * * *

Q: I dream every night and when I wake up I'm so tried. Am I getting good sleep?

Dr. Klimas: Get your doctor to refer you to a good sleep expert - I often suggest a neurologist, as they are thinking about central (brain) causes for sleep problems. Though the key is to have a doctor who is willing to manage and not just diagnose.