What the Heck are They Talking About: Neurological CFS

Understanding chronic illness and viruses

Despite rumours to the contrary (courtesy of your friendly biopsychosocial specialist), biomedical scientists are getting closer and closer to cracking the code of viral illnesses.

So for those of you who are like me and go into a fog every time scientists use polysyllabic words this  little gem of a booklet explains the role of viral triggers in chronic biological illness such as ME/CFS in a way even I could understand. Copies are $3.

The site also has other information on viral triggers and the role of transfer factors in managing nonpsychiatric neuroimmune disorders such as ME/CFS.

And, of course, they have products to sell.

This is not an advertisement for the product, however I will comment that I ended up on the site because my oldest daughter's immunologist, who medically diagnosed her with the neuroimmune disorder ME/CFS, recommended she take Immune Care 64. 

And for her, based on her specific triggers, it has made a difference.

http://www.immunitytoday.com/unchroniland.html

Questioning the use of Cox-2 inhibtors in patients with documented cardiac abnomalities

Pfizer has agreed to pull the painkiller Betrax, a Cox-2 inhibitor, because it can cause heart and skin problems.

Question: If Cox-2 inhibitors such as Bextra, Celebrex, and Vioxx have an impact on cardiac health in patients that take them: what are the implications for neuroimmune disorder patients medically diagnosed with ME/CFS?

The role of the heart in this multi-systemic disorder is well documented by:

Dr. Peter Rowe, pediatrician and associate professor of pediatrics at Johns Hopkins University.

Dr. Arnold Peckerman, clinical professor at the New Jersey Medical School.

Why RemedyFind?

Most regular readers know that I also moonlight as a columnist for RemedyFind.com. I came across RemedyFind on my travels along the Net a couple of years ago. The site owner, Brett Hodges, was so impressed by my incoherent ramblings that after corresponding about different aspects of ME/CFS he asked if I would be interested in scraping some of the rust off my writing skills and writing a column.

So I gave it a try. Remember what the Tin Man sounded like when Dorothy and the Scarecrow first found him? Well I thought about slathering myself with oil and then decided I would never get clean if I did. Heelp mee I'm mellllting. So I creak along, always running late, even on an every other month basis. Brett has heard every excuse in the book: We had an ice storm and the power has been out for days, my dog ate my harddrive (run toto run, I mean run Jax, run), I just found some more medical studies to include, my diurnal rhythms switched leaving me up for 48 hours straight followed by a teeth rattling crash on deadline.

As an editor, Brett's a dream. But, he's more than that, he's taken his experiences and created a lemonade stand where patients bring the ingredients with them and we all get to partake.

Everyone flick that lighter and hold em high: Let's hear it for Brett Hodges, founder of RemedyFind.

WHAT WE ARE

Remedyfind is an independent, unbiased site where individuals and healthcare professionals can rate the effectiveness of different treatments for specific health conditions. Our philosophy is that the everyday, real-life experiences of individuals are an invaluable and largely untapped health resource.

Remedyfind is not owned, sponsored or underwritten by pharmaceutical or nutritional companies and has no vested interest in promoting any particular health remedy. We promise that the information and ratings presented at Remedyfind are completely unbiased and are not influenced by any outside commercial interests, advertisers or special interest groups.

Remedyfind understands that your personal health information is extremely confidential. That’s why we promise to maintain an uncompromising commitment to preserving your privacy. We will never sell, trade or transfer any of your personally identifiable information to any third party. (See Privacy Policy)

WHO WE ARE
Brett Hodges, Remedyfind Founder and President

"In 1982 I was newly married. With much youthful enthusiasm I decided to take on the job of repainting and doing general fix-up work to our new home. After several months of this dusty, toxic work I came down with strep throat. The problem was, even after multiple courses of antibiotics, and with lab tests showing that there was no active infection, I still felt miserable. I was completely exhausted – simply walking to the other end of the house would leave me tired most of the day. Looking back on it, I think this was the start of my battle with Chronic Fatigue Syndrome (also commonly known as CFS; CFIDS; and M.E.).

What took place in the following years will be depressingly familiar to many of you who suffer from chronic health conditions. I saw literally dozens of doctors and alternative health professionals. I tried a multitude of different treatments – drugs, diets, counseling, alternative medicine and bodywork techniques. Some helped more than others.

At least by 1988 the medical world had a name (though a wholly inadequate one) for this ailment - "Chronic Fatigue Syndrome". Unfortunately, few physicians knew what to do about it. Alternative health therapists were generally much more confident about what would help, but their enthusiasm for their own particular treatment was not always the most objective opinion.

Over the years I’ve found that one of the most useful tools in dealing with my personal health problems has been to keep a journal listing my reactions to the different treatments I’ve tried. Rating each one for its effectiveness, side-effects etc. has really helped me keep track of what has worked, and what hasn't. When I thought more about it, I realized that this method could also be useful for most health conditions, which was the inspiration for creating the Remedyfind site.

Remedyfind's goal is to serve as a supportive virtual community where individuals and healthcare professionals can rate the effectiveness of the various treatments they have used for specific health conditions.

Not just pharmaceutical medications, but the whole gamut of potential remedies – from herbs and vitamins to alternative therapies. By pooling together our experiential wisdom about different health remedies I believe we can help each other save time, energy and money as we cope with and eventually conquer debilitating illnesses."

Biomedical Researchers - Learn From the Best, Forget the Rest

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I'd like to highlight the work of serious biomedical researchers whose valid peer-reviewed evidence is ignored by the "hysterical docs."

If all you've ever read about fibromyalgia and ME/CFS is psychiatric drivel, I mean interpretations, you are in for a scientific treat. Admittedly, these studies are harder going than simplistic articles telling people to get a life, a change of attitude, and join the "exercise is good for every body club."

I also use a tabbed browser, so I always have one tab open to a medical dictionary or neutral source of biomedical information. I have to accept that I can no longer spout polysyllabic phrases at the drop of a hat and what I understood yesterday has slipped out of my grasp yet again so to speak. I just go back and review as many times as it takes to understand. So for those of you with ME/CFS and fibromyalgia, hang in there. You can do it.

Biomedical researchers:

I am starting with Dr.David S. Bell because so many children and teens are being misdiagnosed with psychiatric disorders when they have actually have biological disorders which are physically worsened by forced exercise and psychiatric treatment.  Although clinical experience is downplayed by academic researchers, I 'm old-fashioned enough to heed the voice of experience.

If you don't no know very much about ME/CFS I recommend that you begin with the free pdf version of his book, Faces of CFS.

Dr.Bell graduated from Harvard College in 1967 with an AB degree in English literature followed by Boston University with an MD degree in 1971. Post doctoral training in pediatrics was completed in 1976 with sub-specialty training in Pediatric Behavior and Developmental Disorders. In 1978 he began work at the University of Rochester but soon began a private practice in the town of Lyndonville, New York.

In 1985 nearly 220 persons became ill with an illness subsequently called chronic fatigue syndrome in the communities surrounding Lyndonville, New York. This illness cluster began a study of the illness which continues today. Dr. Bell is the author or co-author of numerous scientific papers on CFS, and, in 2003 was named Chairman of the Advisory Committee for Chronic Fatigue Syndrome of the Department of Health and Human Services. Publications include A Disease of A Thousand Names, (1988) and The Doctor’s Guide to Chronic Fatigue Syndrome, (1990). A comprehensive review of CFS is currently being written and is hoped to be published in 2005.

Dr. Bell currently practices general medicine in Lyndonville, New York with his wife Nancy, a family nurse practitioner. Roughly half of the patients seen in the practice suffer from chronic fatigue syndrome, fibromyalgia, orthostatic intolerance, and/or myalgic encephalomyelitis. He also distributes an interesting newsletter.

Dr. Nancy Klimas of Miami has a substantial publication record in the immunology of AIDS and CFS. Dr. Klimas also manages one of three federally-funded CFS research clinics.

Dr. Anthony Komaroff of Harvard has numerous publications demonstrating neurological damage in CFS.

Dr. Peter Rowe, a cardiologist at Johns Hopkins, counts among other peer reviewed publications the only complete research article on CFS that has appeared in the prestigious Journal of the American Medical Association.

Dr. Benjamin Natelson and his staff at the New Jersey CFS Clinic have produced numerous peer-reviewed publications in the fields of bio-mechanics, neurology, and immunology. Natelson's group has published several studies demonstrating that psychological causation cannot explain the symptoms of ME/CFS.

Dr Vance Spence, Chairman of MERGE & Senior Fellow in Medicine, University of Dundee, UK, and Prof Julian Stewart, Professor of Pediatrics and Physiology, New York Medical College, USA.

If you have not yet read their work on Orthostatic Intolerance, Standing up for ME [Biologist 2004;51(2):65-70]: please click on this link now!

There are many more biomedical researchers, but the brain is taareeed folks so this is all for today. If you want to search for additional research studies done by any of the biomedical experts above, start here.

Exercise: What psychiatric specialists don't GET

 

(“Mrs. Bradbury's establishment for the recovery of ladies nervously affected,” from On Insanity by William B Neville London 1836)
 

GET illustration in "The ABC of psychological medicine:
Fatigue;" Psychiatric specialists Michael C. Sharpe and David Wilks - 2002

"Whilst no one would question that physical exercise improves quality of life both in health and diseases in general: recommending graded exercise as a specific prescription for complex disorders like fibromyalgia and CFS is a gross oversimplication of science."

Dr. Abhijit Chaudhuri - neurologist
CFS Research Review, Spring 2000, Vol. 1, Issue 2, a quarterly newsletter of the CFIDS Association of America

Want to start a riot? 

Just toss the value-laden phrase “graded exercise therapy (GET)” into a room full of desperately ill people with complex biological disorders such as ME/CFS or Fibromyalgia.

For those of you who have puzzled looks on your faces, let’s start at the beginning. After all, the widespread generalization is that exercise is good for every single body, just like dairy products, right?

Are there exceptions? According to biomedical researchers there are. Why do they say that?

The key lies in neurologist and ME/CFS specialist Dr. Chaudhuri's quote. There is a great deal of danger in broad application of therapies designed by psychiatric specialists for what they refer to as functional somatic disorders which is how these psychiatrist refer to fibromyalgia and ME/CFS as well as headaches, food allergies etc.

So, how did these psychiatric specialists get mixed up in a specific neurological multisystem disorder?

To make a long story as short as I can: since the 1950s, biomedical researchers have been researching a specific neurological disorder they called ME or Myalgic Encephlamylities, based on what was known at that time. Since 1969 ME has been listed by the World Health Organization as a neurological disorder(G93.3) in the ICD and was accepted by The Royal Society of Medicine as a nosological entity since 1978.

More than 50 years later biomedical research, using increasingly sophisticated medical methods have vastly increased the biomedical knowledge base  regarding these complex biological disorders.

It was biomedical thinking outside of the "psychiatric box" that allowed Gulf War Neurological Syndrome to be revealed by cardiac researchers with the University of Texas Southwestern Medical Center at Dallas.

These researchers found a specific chemical trigger and a specific genetic predisposition.  ME/CFS biomedical researchers have proven a similar neurological basis exists the neurological disorder ICD 10 G93.3 ME/CFS, only with a viral trigger instead.

So what does all this have to do with psychiatric specialists and exercise? 

In the late 1980s biopsychosocial psychiatric specialists, possibly looking for a way to increase their prestige and power, decided that since the actual cause of ME was unknown it presented a way to assert their psychiatric authority. It is possible that the late philosopher Susan Sontag captured the attitude best when she noted, "Theories that diseases [illnesses] are caused by mental states...are always an index of how much is not understood about the physical terrain of a disease".

Thus, working on both sides of the Atlantic these psychiatric specialists and  like-minded associates diminshed postexertional incapacitating fatigue down to plain old fatigue aka tired.  While they were at it they stripped out the neurological signs and added psychiatric symptoms according to one of the authors, psychiatric specialist Anthony David.

Although biomedical researchers continued working on the biomedical aspect, psychiatric specialists from the Psychiatric Institute of Kings College in London began their campaign to prove that suffers with these complex illnesses weren't organically ill.

The psychiatric specialists decided that the best way to cure people of an organic illness they supposedly believed they had, was with a psychiatric therapy called Cognitive Behavioral Therapy (CBT).

Unfortunately, like a hammer used as a murder weapon, they took a valid therapy designed to help people change dysfunctional thinking by changing their attitude and misused it. Used correctly CBT can help even psychiatrists correct damaging thought patterns. However, it was never intended to cure so much as dandruff. Good for coping? Absolutely. A cure for whatever ails you? Not likely.

Just my personal opinion, but if people could eliminate organic illness by simply changing their attitude, graveyard visitation could be drastically reduced and there is not a thing the plastic flower lobby could do about it!

The reason this ties into exercise is because graded exercise therapy is based on the principles of CBT and psychiatrists wanted to prove that these neurologically ill patients which a proven pathological response to postexertional exercise were just faking it.

While it helped some patients to some extent, psychiatric specialists really overpromoted their results on a patient population that may or may not have had ME/CFS patients in it at all. No one knows. These psychiatric specialists refuse to use the international standard research criteria they helped devise.

Because studies between different kinds of patients cannot ethically be compared psychiatric research is relatively useless.

Attempts to prove that patients with fibromyalgia, Gulf War Syndrome, and ME/CFS (G93.3) are simply making themselves ill from everyday emotions or mass hysteria doesn't match with the continuing biomedical research. And the biomedical research doesn't support GET or CBT as used by these psychiatric specialists.

Simply forcing patients into joining the “exercise is good for everybody club” whether it's good for their body or not actually runs into human rights issues.

But, organic illnesses can be neither brainwashed away nor manipulated into nonexistence.

The neuro-endocrine-immune disorder CFS/ME is a life altering, debilitating chronic illness like fibromyalgia: not a case of the sniffles - and a box of tissues called graded exercise therapy may not do ya.

Fact is, many fibromyalgia and cfs sufferers don't know why doctor's tell them their illness is caused by stress or is all in their head. They just know their doctors are wrong. (Which unless their doctor is an "empath" your level of pain, and energy is something they can only guess at) Very few connect it with the work of these powerful psychiatric specialists.

And because fibromyalgia and ME/CFS sufferers do not recognize the names of these psychiatric researchers many even post the "exercise therapy" research spread by these psychiatric specialists on their own websites. (Hint: you may wish to spread the word so people can make choices based on biomedical factors instead of psychiatric speculation.)

For both fibromyalgia and ME/CFS, biomedical answers on exercise range from none to mild aerobic exercise.

The key concept all biomedical researchers agree on is that rest periods are essential and if the exercise makes you worse, stop and at the very least, back down a few notches. All emphasize that decisions about exercise must be made within the context of illness severity and physical response.

A British questionnaire regarding CFS/ME management practices tabulated results from a total of 2,338 respondents. The results showed that 1,214 of questionnaire respondents had tried graded exercise. Of these, 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse.

The article also notes that among respondents, this was the highest negative rating of any of the pharmacological, non-pharmacological and alternate approaches of management covered in the questionnaire. Study coordinators believe these statements may help explain the high drop out rates noted in some of these programs.

All of this is the long way of getting to my point. What works for you may depend on your unique chemical makeup and situation.

Whether I’m evaluating toe nail clippers or the management of my incapacitating ME/CFS, I always try to start with common sense - which is not as common as the name suggests. As such, is it in my best interest, even though I have also been medically diagnosed with fibromyalgia, to be dancing the “Achy Breaky Heart?”
Given what cardiologists are now finding out about ME/CFS, achy breaky heart may be a pretty good description of my heart.

Despite having been an active athlete all my former life, "been there and done that" doesn't make any difference to organic neurological disorders that may damage my heart.

In the end I just consulted myself. I tend toward the lower end of the spectrum in exercise. I try to start with gentle stretching in my nice toasty warm bed. How active a day I have depends on the whim of these darned diseases, as in no one asks me what I want to do.

I know in my own situation – just attempting to keep up with social and Hazmat expectations: housework and yard work now take everything I have and frequently more.

Given a choice between wearing dirty clothes and doing jumping jacks, I’ll choose to push my activity envelope by doing laundry if at all possible. If you choose differently just warn me and I'll wear a clothes pin on my nose.

And as every inhabitant of the world of ME/CFS knows, what is possible some days is utterly impossible on others - and that is a biological fact that each of us lives on a daily basis no matter what our 'tude.

Bottom line: As patients, we, and only we, are the ones who have to live with the results of choices made. Ultimately your body, not some research study or doctor who isn’t you, will tell you what you can and cannot do at any given moment in time.

This was originally posted on RemedyFind: Fibromyalgia and CFS columns February 2005

More Biomedical Studies Refuting Neurasthenia

The 7th Annual Research and Clinical Conference of the American
Association of Chronic Fatigue Syndrome October 8-10, 2004

Overview of ME/CFS research in the past two years presented by biomedical researcher Dr. Anthony Komaroff:

* A recent large study of prognosis concluded that the course of CFS waxes and wanes, but only about 10% of patients achieve complete remission.

* Central nervous system involvement in CFS is supported by predictable decreases in CRH, ACTH and cortisol; elevated prolactin in response to serotonin stimulators; and growth hormone deficiency.

* While higher order skills are preserved, cognitive studies in CFS demonstrate a decline in IQ (sometimes from supranormal to normal levels), and deficits in complex information processing, processing speed, acquisition of new information, and learning or recall of complex material.

* A reduce blood volume (red blood cell mass) and prolonged acetylcholine- mediated vasodilation of the microcirculation (e.g., forearm skin) occur frequently in CFS.

* Sleep is less efficient, sleep onset is delayed, and sleep study abnormalities (apnea, leg movement, restless legs, and narcolepsy) occur in up to 50% of cases of CFS.

* Therapy of sleep abnormalities is only modestly effective in improving CFS symptoms.

* Activated lymphocytes are increased in CFS and may pass through the blood brain barrier to activate other lymphocytes and dendritic cells. This effect may persist for years.

* Activated microgliae secrete pro-inflammatory cytokines and nitrous oxide (NO) causing a chronic low level injury.

* Apoptosis (cell death) of neutrophils may lead to neutropenia in some patients.

* Inflammatory cytokines are elevated at the onset and over time in many patients infected with Parvovirus B19. Persistent fatigue is best correlated with elevated gamma-interferon.

* PCR plus Southern Blot demonstrated at least one species of mycoplasma in a 179 of 261 study subjects with CFS, compared to 2 out of 36 healthy controls. M. Hominis and M. pneumonia were most commonly identified.

* Nucleic acid gene expression techniques have demonstrated persistent deficiencies in oxidative phosphorylation, glycolysis, and glucose metabolism in PWCs.

* Reduced Vitamin D levels are seen in both CFS and FM, correlating with increased musculoskeletal pain and lower bone density.

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* Endogenous levels of omega-3 fatty acids are reduced in chronic illness, and may be associated with an increase in inflammatory mediators and reduced antiviral activity. Small trials suggest that replenishment may have some value.

* The Medical Outcome Study Short-Form-36 is a reliable, validated survey that has shown substantial reductions of function in persons with CFS (PWCs) from the US, UK, and Germany.

* CFS symptoms during pregnancy improved in one third, worsened in one third, and remained unchanged in one-third.

A Sad State of Affairs: When Patients Need to Fund Serious Biomedical Resarch

"The research situation is perilous.

The NIH is allocating less money to CFS/ME research than last year.

This means that they will probably find effective treatment in 85 years instead of 70. The message is crystal clear.

The NIH doesn't care about CFS/ME. They never have, and they care even less now.

Researchers are in a difficult position. They cannot obtain grants for research but are reluctant to criticise the government because that would jeopardise their standing in other areas where research money is really plentiful.

There are hundreds of millions of research dollars for AIDS and more than $100 million for multiple sclerosis (MS). Research for the above two diseases also came primarily from patients in the beginning as these disorders were also unfairly tainted by stigma. Last year excluding the studies that were not CFS specific $3.9 million was available and now even less is available.

In the UK, I am listening closely to researchers chatter, and they are indicating that the government is exceptionally resistant to funding serious biomedical research.

The money needs to come from us, and it needs to happen ASAP.

Researchers like Drs. Nancy Klimas, Anthony Komaroff, Benjamin H. Natelson etc, are getting older and no new researchers want to enter a field where the research money pot available is minuscule.

I challenge every patient out there to give to Natelson's new study on proteomics in spinal fluid of CFS patients versus controls. I am copying below the information on how to do this.

I will match 50% of each donation up to total 3000 dollars for 3 weeks. [Note: This matching amount was changed from 1/3 to 50% retroactively February 15, 2004.]

I received the following two messages from Dr. Benjamin Natelson of UMDNJ-New Jersey Medical School recently:

"Currently there are no biological markers for CFS/FM and the illness can only be diagnosed by following a set of clinical criteria. Because of this, CFS/FM is probably a heterogeneous illness comprised of a number of different subgroups. Our own data point to the brain as a cause of CFS for some patients, and we have collected spinal fluid from nearly 50 patients.

"There is a new technology called proteomics which can identify proteins in any body fluid -- even if the protein has never been seen before. This is an incredibly powerful tool, and it has never been applied to spinal fluid in patients with CFS/FM. However, it is costly to gain access to the proteomics technology and this is where we need your help.

"We had applied to the NIH for a small amount of money to move this work along, but our application did not receive a high enough priority for funding. If you and other patients would be willing to contribute to our doing this research, we would be very grateful and hopeful of discovering a biomarker that could be used to make diagnosis more precise.

"Thanks for your continued interest in our research.

Benjamin H. Natelson, MD Professor of Neurosciences UMDNJ-New Jersey Medical School"

"Mr Bearman:

Thx for your note. We have actually been seeking funding to do a proteomics study to try to identify biomarkers in the spinal fluid. Any contributions that would move that work ahead would be really gratefully accepted.

"The Foundation of the University of Medicine and Dentistry has a secure direct link for donations. To access the main donation page click here

"There is a place to designate the purpose and recipient. Thanks in advance for your interest and potential support. Let me know if you have any problems accessing the Foundation web pages.

Benjamin H. Natelson, MD Professor of Neurosciences UMDNJ-New Jersey Medical School"

The above information comes from Mr. Jeremy Bearman. Please consider a donation and don't be shy about passing this information along to friends and family who are also aware of the need for serious biomedical funding of these nonpsychiatric dehabilitating disorders.

Annual loss in productivity in the US is $9 billion and the average annual loss in family income due to CFS is $20,000.

In the UK, $US4 billion is spent on direct costs such as medication.

Patients are often as severely or more disabled than those with heart failure or COPD. In light of these numbers the actual amount of biomedical research funds is appalling.

Funny how things go sometimes, the biomedical funding for biological illness such as fibromyalgia, Chronic Fatigue Syndrome (ME/CFS)  is a miniscule slice compared to the overall funding pie. Psychiatrists who believe these disorders are psychiatric, as in neurasthenia, hysteria, and functional somatic disorders, have the rest of the pie.

Something to think about: In order for ME/CFS  and fibromyalgia to be classified as psychiatric disorders there can be no medical explanation for their existence.

So why don't psychiatrists take biomedical research into account? Would it be a blow to their professional egos?  Are they more concerned about their reputations or patients?

These "hysterical" researchers have long cherished and promoted the concept that patients who actually believe they have a biological disorder are the most difficult to treat? So are they even talking about patients have been medically diagnosed with a biological disorder, which of course invalidates their theory?

Can't have that! Therefore, these researchers churn out more and more poorly constructed studies and then distribute them to the media knowing the very few journalists are well educated about the differences between psychiatric somatic disorders and biological neurological and autoimmune disorders?

Wrap your mind around this: There is no constant

Reality bites. Life goes as life goes and nobody asked me.

No matter how it is phrased I literally cannot be judged on what I could do yesterday; can accomplish tomorrow; nor does comparing me with your second cousin twice removed, who also has this neurological disorder, pertain to my unique individual situation.  Existence is one big swamp full of quick sand. There is no constant.

Until you acquire a thorough, gut-deep understanding of this integral component, I can spout accurate medical information regarding this neurological disorder, CF'S/ME, until the cows come home and you still won't "get it."  So give us all a break.

People, wrap your mind around this unchanging fact: symptom(s), symptom severity, even presentation of varying symptoms varies by individual, by the hour, the minute, the day (you get the idea). Unlike love, there is no ever-fixed mark.

And patients have minimal control over these factors. Although the extremity of this metaphor may be debated, it reminds me of beating children with polio because they refused to move. As in what part of paralyzed don't you understand?

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Oh that's right, they weren't really sick, just demonstrating illness behavior. Defiant little brats. Probably had a personality disorder - refusal to obey authority or even questioning authority is a sign of that you know, especially to the person being questioned or disobeyed!

As patients, we are not trick ponies. We can't reproduce these variations on command. This makes testing difficult, because scientists rely on consistency as a way to control variables in valid research construct.

To the medical community: Nothing personal I assure you.

These fluctuations often make gainful employment impossible for a large numbers of patients. It has nothing to do with attitude. Personally, I loved my work, but even if I hadn't, the worst job on earth is better than this nightmare.

What? Chickens? Okay, okay,  you have a point, let me rephrase that. 

Personally, I loved my work, but even if I hadn't, the worst job on earth, with the exception of sexing chickens, is better than this nightmare.

What!? Cleaning anchovies? I agree, but I think the point as been made. Thanks for the input however.

This blog is my attempt to continue my calling despite its status as an economic outlay rather than income. But, the only thing that runs like clockwork at my house are the clocks. I go days and weeks without posting. Posts take anywhere from two hours to weeks and weeks to compose, fact check, and spell check.

Hey I try. Silly posting errors make it a bit of a production to resolve even the tiniest of technical glitches. I'd much rather see a production of Shakespeare myself. Now where did that DVD player go to? I could have sworn it was right here.

Of course the computer is plugged in. Yes, I know I hit a wrong button, but which one? And why isn't command Z fixing it, I'd like to know. Open a help ticket? I must look desperately in need of good snicker if you are suggesting that option.

The Physical Basis of neurological CFS: An exerpt

The Physical Basis of Neurological CFS/ME

Anthony L. Komaroff, MD Harvard Medical School

Often, when people hear that there is no known test or cause for chronic fatigue syndrome (CFS), they mistakenly understand that to mean that the illness is not real. This is incorrect.  Over the past 15 years, scientists have identified numerous biological abnormalities that provide evidence for the reality and seriousness of CFS, even though the cause of CFS and diagnostic tests for it are still unknown.

What is the cause of CFS?

The leading model of CFS pathogenesis is rooted in scientifically identified abnormalities in the brain (central nervous system) and the immune system, which influence and alter the function of the other in a reciprocal cycle.  Low levels of circulating cortisol, identified in several CFS research studies (2,3) can increase immune activation, which is also a key feature of CFS.

This immune system activation could theoretically result in brain dysfunction: when the immune system is activated, it makes chemical messages.  Brain cells as well as other immune system cells can receive these messages.  This could lead to fatigue, cognitive dysfunction, enhanced sense of pain, hormonal dysregulation and other features of CFS. (4) ...

Click on the link above for the full text which is short and sweet, but highly informative. Pretty please with sugar on top.

This teaser is part of a more comprehensive explaination (but not a long one) which first appeared in CFS Research Review, Spring 2000, Vol. 1, Issue 2, a quarterly newsletter of the CFIDS Association of America.

Should you take your Doctors Word for It?

As Alice in Wonderland once said, "words mean exactly what I want them to mean, nothing more and nothing less."

The fatigue part of Chronic Fatigue Syndrome is such a misleading term.

In fact, mere words seem quite inadequate when describing the exhaustion and post-exertional fatigue that accompany the very specific cluster of biologically diagnostic symptoms that define this catastrophic, nonpsychiatric, neurological disorder.

Listen very carefully and repeat after me, this disorder is not caused by psychiatric problems nor is it a dusty 1880s version of women's hysteria called neurasthenia. And with all due respect to Norman Vincent Peale, changing your attitude cannot cure you of this organic illness or any other including the heartbreak of psoriasis. Okay. Got it? Hold that thought.

As a result of this verbal inadequacy, what you say and what your doctor "hears" are not necessarily the same thing. The words tired and fatigue are little nats and noseeums to doctors. They just swat those words aside. They are considered "complaints" of a trivial nature.

So when asked about fatigue or tiredness, my stock reply is "profound, bone-crushing exhaustion."  In fact, I am quite assertive about insisting that "my words" be written down verbatim.

I had to learn this the hard way.

My treating doc (aka Angel of Mercy) arranges for moi to see a neuropsychologist for testing to see why I'm having so many cognitive difficulties:

poor memory (caused by pathologically slow brain waves see squiggles), inability to remember names of common objects (anomia), going from immaculate spelling and grammar to a complete inability to spell anything that cannot be spelled phonetically, merrily mixing and matching homonyms in my writing (orthographic dysgraphia), as well as the inability to count money or do calculations (adult onset acalculia).

In other words: The usual suspects and extremely alarming to a person who makes their living as a wordsmith (except the acalulia and it is rumored that all journalists have alcalculia. LOL.) The alarm bell there was a stack of overdrawn bank notices.

Q:Neuropsychologist (aka Sir Donkey-Bottom): So, what are you having trouble with today?

A: Me: ... I also have profound bone-crushing exhaustion.

Sir DB nods wisely and then wrote in his report: decreased energy. As for the rest of the Sir DB debacle, "Another day my pretty, another day." It is a horror story meant for flickering firelight and upturned flashlights.

In the meantime, I ask you, how much further do you have to go to feel less energetic than profound, bone-crushing exhaustion!

I could laugh it off as general doctor stupidity and simply roll my eyes with the same panache as my teenagers, but in this case not only were the words knowingly substituted, but so was the entire meaning! As a patient, and as professional journalist who deals in accuracy, I find it highly offensive with a slight tilt toward malpractice.

What I discovered was that "decreased energy" is psycho lingo for symptoms of depression. Hmmm, not surprised are you? However, once again, I ask you, does "profound, bone-crushing exhaustion" sound like the words "decreased energy" to you or any other reasonable person? Are you aware of any dictionary that would define profound, bone-crushing exhaustion as decreased energy?

(Sinister musics plays softly in the background) Or, was my doctor ignoring my very specific description to suit his own pre-formed judgments and prejudices?
Maybe Sir DB is merely one of those self-absorbed people who, if they are not experiencing what you are experiencing, immediately and with utter conviction declare you a liar?

Hmmm...Kind of like just because a man doesn't have a uterus and can't see mine does that mean there is no such thing as a uterus? Or the man who asks, "How much can having a baby really hurt anyway? You are over-reacting!" Sorry guys, I can only relate from my personal experience and I am what I am.

Speculation aside, the end result was that Sir Donkey-Bottom knowingly substituted psycho lingo designed to create a false, unsubstantiated, psychiatric record with me in the starring role.

The result: I have been forced to go through numerous Psychiatric Consultive Examinations by SSDI drones for over four years now without receiving so much as a dime of compensation for the legally and objectively proven, neurological illness that disables me. Oh I am so sorry, I thought I might have sounded a tad irritated there for a second.

Now THAT is DEPRESSING! And given the current 2006 budget projections that will change to homeless if good 'ol American justice doesn't get a move on.

In my personal experience with Chronic Fatigue Syndrome and Fibromyalgia, psychiatrists and psychologists are the most likely to outright lie, to omit key evidence and to knowingly substitute psychiatric rheotoric having a completely different meaning from the words  you used.

And it's okay for me to say this because some of my best friends are psychologists. No really, I'm not just saying that, one of them is even related to me. I swear I'm not a liar. Hey, where did you get that report from. I thought I shredded all those records. Hey, don't you dare go near Social Security with that!

Do words and their meanings really matter? They do when the substitution results in a fictitious psychiatric report. I don't believe British playwright William Shakespeare ever met Sir Donkey-Bottom because of the time warp factor, but if he had he might have quothe:

Good name in man and woman, dear my lord,

Is the immediate jewel of their souls:

        Who steals my purse steals trash; 'tis something, nothing;
        'Twas mine, 'tis his, and has been slave to thousands:
        But he that filches from me my good name
        Robs me of that which not enriches him
        And makes me poor indeed.

                - William Shakespeare, Othello, Act III, Scene III; [Lago to Othello]

A rather poetic way of describing libel don't you think? For our libel laws are based in English Common law which gives each person the right to their "good name."  Is your "good name" dependent on the words others use? Darn tootin'!

It is unfortunate that in the society we live in, people are marginalized when psychiatric allegations are made, but it is all too common. Patients can and do lose their "good name" to psychiatric stigma, true or false. It is a form of prejudice embedded in our "common wisdom." This goes along with the myth that if a doctor (preacher, law enforcement officer, rabbi etc) says it, it has to be true.

If there is a conflict between a doctor's word and that of the patient, the doctor is automatically accorded the status of "right," and the patient the status of "liar" in our society. Interesting that the person who cannot actually or personally verify your experiences because they don't have them, is considered the expert? Sorry folks, I'm not buying and you can just take that bridge model with you on your way out.

It isn't right, it isn't fair, it isn't necessarily legal or even logical, but it is a problem that exists in plain sight. But, most of us don't want to rock the boat. SHHH don't say a word.

Are there ways to combat damaging word choice? Can the damage be wiped away as if it never happened? You tell me.

Whether your goal is legal remedy or societal remedy here are some of the practices I have put into place.

1. I never see a new doctor without a witness no matter how nice they seem even if they are supposed to be on my side. Much better to be safe than sorry. Make sure you take someone you are comfortable enough with to take into the examination room with you.

If the doctor refuses to allow that, you might then examine whether the doctors refusal is a huge red road sign saying,

"RUN LIKE H E DOUBLE TOOTHPICK!"

No matter what doctor you see, and what decisions you make, make sure you get copies of all of your medical records including test results. Some doctors do charge for this service, but the fee is limited by law to their actual costs. 

For example, if you find someone's elses blood tests in your files (that would have been Sir Donkey Bottom #2), chances are more than average that that isn't the only inaccurate and or misleading chart not (Say, yeah, oh yeah).

Noting errors in your file and requesting that any misleading information be removed or rectified is not the same thing as accusing someone of high treason. A professional office will make every effort to remedy the situation.

But first, no matter what, always, always take the high road. As a journalist I can tell you it is possible to blow someone's doors off and be reasonable and courteous at the same time, but its best to leave their doors intact until you are given no other choice. Catch more flies that way.

Sometimes a misunderstanding is just that: a misunderstanding. Doctors are busy people who make mistakes just as we do and it could just as easily have been a staff error not a doctor error. Survey seeeezs ...What percentage of workers are telling the truth when they say filing is their life?

2. Even if you are inclined to let the "little" stuff go, if there are more serious errors, errors that can result in misdiagnosis, seriously consider challenging them.

When deciding what and when to challenge, do take into account whether you will have a continuing relationship with this doctor or office, whether you are dependent upon them to document disability and whether they have the means to retaliate. This may sound like an exaggeration, but any doctor who is willing to bend the truth may be willing to do much more than that.

3. If Dr. Donkey-Bottom was a referral from your treating physician, discuss the problem with your treating doc. Sometimes a quiet call from the referring colleague can set things straight right quick.

4. If you decide to challenge errors on your chart, put it in writing and make copies. (Always send all paperwork by registered mail. You can never have too much legal documentation.)

First challenge all factual errors and document the proof showing that it is an error if you can obtain such documentation. Correcting simple errors sets the stage so that if you need to challenge wording or assumptions, you have already established that the documentor is careless with facts.

(An example, and yes this really happened, would be the man whose doctor listed him as receiving a dishonorable discharge from the Armed Forces when he had in fact received an honorable discharge. Proving it was a simple matter of providing legal copies of his discharge papers. It also gave him leverage to combat his doctors' conclusions and ill considered opinions)

5. If communicating with the doctor or the doctor's office manager produces no results, each state has a medical licensure board. Some take patient complaints more seriously than others. None of them care if your doctor was rude, but they will take a look at documentation of a misdiagnosis resulting from carelessness or distortion.

There is nothing exciting about this step. Judge Judy it isn't. It is time consuming and tedious and many times the doctor might not get so much as a slap on the hand. But, if enough people make legitimate, well documented complaints it does add up.

Helen Keller summed it up in this way: "I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do."

Remember hurricanes start one drop at a time, and you have my word as a southerner on that.

libel
li·bel
noun  (plural li·bels)
1. law defamation: a false and malicious published statement that damages somebody’s reputation. Libel can include pictures and any other representations that have public or permanent form.
2. attacking somebody’s reputation: the making of false and damaging statements about somebody
3. law written statement: the plaintiff’s written statement in a case under admiralty law or in an ecclesiastical court
transitive verb  (past li·beled, past participle li·beled, present participle li·bel·ing, 3rd person present singular li·bels)
1. defame: to publish false and malicious statements that damage somebody’s reputation
2. attack: to give a false and damaging account of somebody
3. law bring a suit for libel: to bring a suit for libel against somebody under Admiralty law or in an ecclesiastical court
[14th century. Via Old French from Latin libellus  “little book,” diminutive of liber  (see library). Originally “written declaration,” later “something setting out the grounds for a lawsuit.”]

 

Fatigue: the tip of the diagnostic iceberg

For many of us, getting an accurate diagnosis of CFS / CFIDS / M.E. is a time-consuming, difficult and yes, fatiguing process.

Proper diagnosis of CFS / CFIDS / M.E. requires comparing a patient's symptoms with the health condition's accepted case definition and excluding other illnesses with similar symptoms. And by excluding, I mean using illness-specific criteria that don't include everything but the kitchen sink. The looser the diagnostic categorization the more likely the misdiagnosis of this bio-medical neurological disorder.

Let's start with fatigue. You can't get much looser than the term "fatigue". The word fatigue in our society is applied to anything from the delicious tiredness that comes from a day full of active fun to the profound, bone-crushing exhaustion caused by serious illness. In the medical sense, fatigue is measured by persistence and pattern. Undifferentiated, the medical symptom, fatigue, is common to many grave and not-so-grave illnesses. Without differentiation, the term is diagnostically useless.

A good example of this is the Oxford Criteria of CFS, developed in 1991 by British psychiatrists Simon Wessely and Michael Sharpe. The Oxford Criteria defined CFS as a "syndrome in which fatigue has been present for at least six months, during which time it has been present more than 50 percent of the time". By simply requiring prolonged fatigue for a CFS diagnosis, the Oxford Criteria allowed a broad variety of psychiatric illnesses to qualify as CFS and supported the premise of the authors that CFS is actually mass hysteria resulting from a personality disorder and can be treated with a program of graded exercise.

No wonder the Oxford Criteria has yet to be medically validated more than a decade later and has since been superceded by more refined definitions as the biological evidence piles up.

As Susan Sontag notes, "...Theories that diseases [illnesses] are caused by mental states...are always an index of how much is not understood about the physical terrain of a disease.....".

In 1994, a new criteria was drawn up by the U.S. Center for Disease Control 1994 CDC / Fukuda CFS Criteria. This definition included the earlier requirement of the presence of new-onset fatigue lasting at least six months, but it went a step further by also requiring the presence of at least four of eight other physical symptoms. "A case of the chronic fatigue syndrome is defined by the presence of the following: 1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities; and 2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue: self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multijoint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours."

Although more narrowly defined than the extremely loose Oxford criteria, the optionality of other cardinal physical symptoms of CFS kept the diagnosis focused on the broad and imprecise symptom of fatigue, distorting the overall biological pattern of this neurological disorder. The 1994 Fukada criteria, superceding the even vaguer 1991 Oxford Criteria, was intended to make sure researchers were testing the same populations; but as a precise diagnostic tool it remained tantamount to driving a finishing nail with a sledge hammer.

Enter the 2003 Canadian CFS/ME Clinical Working Case Definition. Developed by an international CFS team of treating physicians, teaching faculty and researchers this 2003 definition is "real world" and reflects an on-going accumulation of biological research and evidence. As the authors of the Canadian report write, "The panel felt there was a need for the criteria to encompass more symptoms in order to reflect ME/CFS as a distinct entity and distinguish it from other clinical entities that have overlapping symptoms. As fatigue is an integral part of many illnesses, the panel concurred that more of the prominent symptoms should be compulsory."

What does this mean in terms of creating a new standard for clinical diagnoses? Well, first off it defines "fatigue" more precisely. CFS/ME is now more narrowly defined by post-exertional fatigue. The difference? Unlike fatigue from which people recover, post-exertional fatigue is pathologically delayed recovery. While fewer patients may meet this criteria, the chances of being misdiagnosed are significantly less.

The 2003 Canadian Definition also states that cardinal symptoms are no longer optional and that patients must have neurological / immune and/or neuroendocrine manifestations such as orthostatic intolerance, vertigo, loss of thermostatic stability, and worsening of symptoms with stress. Finally, with the 2003 Canadian Definition a precise biological pattern is being constructed, and as the criteria becomes more stringent, fewer people are being misdiagnosed.

Thankfully we have evolved far beyond the earlier definition of CFS as simply involving vaguely defined fatigue. Yes, the fatigue those of us with CFS experience is horrific, and is not to be belittled. But as the sole diagnostic criteria it is not enough, not by a long shot.

Note: Marilyn Kerr, RN writes about the importance of diagnostic codes, not only for diagnostic purposes, but to accurately and effectively document patient statistics. The article was written in 2001 and thus does not include the latest changes. Kerr also refers to fibromyalgia, which is further clarified by Margaret Williams in 2004. More on ICD diagnostic codes can be found at http://virtualhometown.com/dfwcfids/cfids/classified.html.

Psychiatric footnote from Kate:

It should also be noted that the World Health Organization 1992  ICD-10 index and subsequent revision code CFS/ME "chronic fatigue syndrome" at G93.3 in the chapter on the nervous system and the category "other diseases of the brain," specifically forbidding its categorization under F48.0.This is a huge change from the ICD 9 classification system drawn up in 1975 by the World Health Organization (WHO) which, allowed CFS/ME to be listed as the equivalent of nueresthenia at F48.0 in the category "neurasthenia," a designation which specifically excludes code G93.3 illnesses.

On 23rd January 2004, Andre l'Hours from the WHO headquarters provided the following clarification (in writing):

"This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organization's International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive".

l'Hours  also confirmed that the

ICD classifications (for ME/CFS) are approved by the World Health Assembly and therefore take legal precedence over *unapproved modifications* made by a WHO Collaborating Centre.

<>

The Collaborating Centre making these unapproved modifications is based at King's College UK. Home of Professor Wessely and the psychiatric lobby.

ME/CFS are both classified by the WHO Headquarters in Geneva as diseases of the central nervous system and not under mental and behavioural disorders (F48.0) as has been incorrectly stated and promulgated by WHO Collaborating   Centre, King's College UK.

 

Are you at risk: Insulin Resistance

It sounds like a riddle, but determining when a symptom is a symptom of CFS or Fibromyalgia and when it is a symptom of complications stemming from these two illnesses is no joke.

Up until recently, the most common approach was to see if you have diseases or conditions that ruled out CFS or Fibromyalgia. Now, however, more and more research is showing that many conditions co-exist with CFS/FMS or are actually the result of imbalances caused by these two illnesses.

Insulin resistance (IR) is one of those conditions. Insulin is the hormone that regulates blood sugar levels and IR refers to the state where an unusually high level of insulin is required to keep blood sugar levels under control. In other words, IR is an impaired metabolic response to our body’s insulin.

Insulin is also key to transporting the glucose manufactured by the body after eating to the mitochondria to be turned into energy. With IR, the mitochondria are denied the glucose necessary to manufacture energy. IR also causes excess glucose to deposit as belly fat. In short, you become a fat slug.

This metabolic cascade can further lead to type II Diabetes and greatly increases your risk of a heart attack.

My first clue was my weight gain. I knew I was steadily gaining weight, but chalked it up to my inability to be as active as I once was, not to mention all those cute little pills that have weight gain listed as a side effect.

A random glance in the mirror one morning followed by the thought, "Good grief, I look five months pregnant", set off an alarm in my head. People’s body types are often compared to fruit and I had always been a classic "pear", putting my weight on my hips. I’d never been an "apple", where all the weight goes to the belly. Suddenly I realized I had morphed into an "apple". It didn’t make sense genetically, so I started researching medical reasons.

Verifying my apple figure was a matter of measuring my waist an inch above my navel and then measuring my hips at the widest point. I then divided my waist measurement by my hip measurement. A ratio over 0.8 for women and over 1.0 for men is considered unhealthy. (I also have a body mass index over 27.)

I don’t have all the symptoms of course. My tilt table results had proven that hypertension (high blood pressure) is not one of my problems! I have no family history of diabetes either. What I do have is high cholesterol as well as a low HDL level and elevated triglycerides.

If you have any one of these risk factors, you need to discuss the situation with your doctor. There are a number of blood tests that can be done and medications such as Glucophage, which prevents blood sugar levels from rising so high.

In the mean time, try a low calorie, low glycemic diet. This means avoiding foods that cause your blood sugar to rise quickly. Foods such as flour products, refined corn products, and sugar added products should be eliminated from your diet. You can, however, increase foods such as vegetables, beans, nuts and seeds. You can also eat fruits and root vegetables such as potatoes and carrots as long as you eat them with other foods. Yes it is hard, but life is actually worth living even without bagels.

CFS and Fibromyalgia are not life threatening by themselves, but the medical complications are very real and can be life threatening. Don’t take chances, talk to your doctor.

Devin Starlyn has a wonderful fibromyalgia site and I gathered quite a bit of my information from her website.                                                                         

Originally posted on RemedyFind.com June 2004
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