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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Sunday, November 4, 2012


One of the best days of my life was reviewing my SPECT brain scan and seeing tangible evidence of all the damage in my left brain.

I'm not a conspiracy theorist, but if one looks at the story of CFIDS and/or fibromyalgia, one can't help thinking, "we" who are afflicted with CFIDS/ME/CFS and/or fibromyalgia were "doomed," for whatever reasons, right from the start.

It seems that NOTHING has gone right in the past almost 40 years.  Excuse me for repeating myself just a tiny bit from what I wrote in my "P*ssed Off" post, but to put us all on the same page, here are just two points I made: the few funds we fought so hard for from the NIH, were misappropriated by other agencies and really, no one cried "foul," much less was anyone taken to court for criminal activity.  When the doctors at Incline Village, Nevada could finally talk the CDC into sending a "team" to investigate the outbreak of this new disease - in a cluster - the "team" had the gall to spend its time skiing and sampling the restaurants instead, with the "team" arriving in Atlanta and declaring there was no outbreak in Incline Village.  And so it went....

It's now decades later and a third generation is becoming ill with this truly monstrous,  hideously cruel, though highly invisible, disease.  And what's happening?

Well, what's always happened, but for a few glorious years in the late '80's and '90's, is that we are being thrown back into the psychiatric wastebasket.  What???  It's the 21st century and we’re doing what?  Going back to 1970's standards?
  • A couple of points first:  There are markers that can be found that prove CFIDS/ME/CFS and fibro exist.  The elevated protein in my spinal fluid is just one example, and it was seen in 1984 and 1988!  Yet are these biomarkers being used in anything that can help the CFIDS, etc, patient?   Not much.  Ampligen, around since the 1970's is still trying to get off the ground and avoid bankruptcy.  Funny, Viagra never had this problem.  Heck, Viagra was the first drug (or thereabouts) to be fast-tracked.  Those congressmen and senators wanted their...well,  you know what THEY wanted!  And they GOT it, as I'm sure everyone's aware, given all of us have gotten a spam or two trying to sell us the product, for male OR female, since we started exploring with the most primitive of computers and the Internet.
  • Furthermore, just as another example - albeit a very stunning and almost unbelievable example - until the 1960's, rheumatoid arthritis, a disease NO ONE today would dispute as being a terrible physical affliction, was thought to have its origins in mental illness.  And yet man was almost to the moon when this disease was still marginalized and worse.  The term, "Rheumatoid personality" was used quite extensively until blood tests like Rheumatoid factor became commonplace.  Mental institutions a hundred years ago were filled with patients who had such physical problems as lupus and thyroid disease, to name a few.  It wasn't until objective blood testing revealed the true cause of the patients' problems and effective treatment could be sought after and implemented that the psychological wastebasket treatment was thrown out.  See a parallel with the mess we're dealing with here???

This sort of thinking is not just insulting but it's downright dangerous as well. There are consequences that will and are being paid because of this lackadaisical attitude.  Some entity, a government, a bunch of people, some sort of institute doesn't like a certain illness, well, then just throw it into a psychological wastebasket.  I think Hitler had that problem to some degree, no?   But it gets worse.  Here are some bullet points for you!
  • Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities.  The proof is in the pudding, folks.  We're no further now in 2012 than we were back in the 1970's, really, or for all practical purposes.
  • Betrayal by the American College of Rheumatology.   Now there really needs to be no touching of the patient: overlap of CFIDS & fibro, both diagnosed clinically, that have, for all practical purposes, no lab test or x-ray that leads to diagnosis are in for a lot of trouble.  Oh, some tests are available, but the testing is incredibly difficult to obtain and no insurance company is going to OK the costs.  The scarier part, to me at least, is that the American College of Rheumatology (once a great champion of fibro and CFIDS) proposed a new set of fibro criteria in 2010 which was based on the patient's history, a questionnaire which would yield a Widespread Pain Index (WPI) and a Symptom Severity Scale Score.  If the WPI reveals pain in at least a certain number of body parts and the symptoms of fatigue, cognitive problems and unrefreshing sleep are sufficiently severe then one is labeled as having fibro.  Imagine this, in contrast to the 1990 fibro criteria, where a minimum number of tender points had to be present.  Now the doctor doesn't need to touch you at all!  Furthermore, the dolorimeter, an easy, practical, HARMLESS and inexpensive test, which was used to measure pain threshold is basically gone, as is the Brain SPECT scan, which shows abnormal blood flow in the brains of fibro and CFIDS sufferers.  Yet the"useless," "harmful" and money-making (money-wasting) tilt table test is still out there, almost a relic of the Spanish Inquisition, and  persists. (Getting rid of the tilt table test is like trying to kill off Rasputin!)
  • With no touching of the patient, only a questionnaire, how accurate are the criteria?  They become completely subjective and hardly objective at all.  This only gives ammunition to those who say that CFIDS and fibro are not real illnesses or that they are psychological.

Along with no - or only a cursury - physical examination, other potentially serious illnesses would likely be missed (as is already happening, me being Speciman A!):

  • The sad thing is that medicine in general is become more and more depersonalized with an over-reliance on testing, and a minimum of physical contact between the doctor and patient.  When the doctor would check for fibro tender points, he would often find evidence of such co-morbidities as myofascial pain syndrome, arthritis, thyroid disease, growth hormone deficiency, to name a few.  It seems as if the newer criteria are for the convenience of the doctor, not for the benefit of the patient.  It's bad enough that fibro and CFIDS patients are labeled as being depressed or suffer from anxiety, but if this trend continues, even those docs whose hearts are in the right place will rely more and more on questionnaires and less and less on physical findings.
  • This psychological wastebasket is also dangerous since once patients are labeled as mentally ill, all symptoms are viewed through that prism and physical pathology all too often goes undiscovered. It is important to note that fibro and CFIDS patients score very differently on standardized pyscholological tests than do patients with depression.  For example, the depressed patient will not attempt a task or activity, underestimating his ability to perform it, whereas the patient with CFIDS or fibro truly believes that he can accomplish a given task only to collapse when the flare of the disease knocks him down or out.  Yet that very patient believes that in the future he can attempt the task and succeed.  No two types of patients could be more different, yet the medical establishment stresses the psychological and downplays the physical.  When a rheumatologist is asked to use a questionnaire instead of a physical exam to diagnose a physical ailment, something is very wrong - after all, don't psychiatrists behave this way, never touching the patient?
  • Why is it that medications such as anti-inflammatories, anlagysics, and quinine are taken off the market for problems which cause side effects in relatively rare instances?  However, medications such as Lyrica and Lunesta, which are still on the market and are so dangerous that they are required to disclose mind-blowing side-effects on their TV commercials - which not only include suicidal ideation, but suicidal actions - are still being sold like pancakes at Octoberfest?  Why is it that we are so "persecuted," since I cannot think of another word to use?

As I wrote in an earlier post, Stalin, in his great sanity (not!) decided to punish the "rich," "peasant" class, the most productive class in Russia and the Ukraine, called them "kulaks" and took all their land, food and shelter away from them, then shipping them to Siberia in cattle cars.  This occurred in the famine he induced, on purpose, in order to kill at least 10 million Ukrainians in just one winter, 1932-33.  These two countries, Russia and the Ukraine, are still feeling the repercussions of having lost so much talent, 80 years ago.

Somehow I feel as if this country - plus a few others; we are not alone in this criminal behavior - in the land of the free and the brave, is treating each of us as "kulaks" also, again.  The vast majority of us with CFIDS/ME/CFS and fibromyalgia were all highly productive citizens at one time, contributing to taxes, the economy, the work force, but many are now trying to get by on meager government funding, which is barely enough to stay alive. Think of how much good to society we are wasting when we allow such a highly-motivated and skilled population to rot away. Yep, we're like the kulaks. The only difference is that we're just dying at a somewhat slower pace.

We paid our taxes, we trusted our government, as well as the medical system, and we've been betrayed in the worst possible way.

What can be done about our situations?  I'm not really sure, but here are just a few thoughts:

  •  I know that celebrities have often changed the course of illnesses or causes.  AIDS' "perfect storm" was when Rock Hudson, the beloved movie star, contracted AIDS.  The country softened its views about AIDS.  To further away the stigma, then Elizabeth Taylor, Princess Diana (under great criticism), Elton John and young Ryan White, who was helped by Elton John, were able to stir the conscience of this country's attitude toward AIDS and funding - and to make it not feared like leprosy - an analogy which I've always found to be repulsive since why should leprosy be stigmatized?  Actually, it took a lot more pieces for that "perfect storm," but these were the ones that put AIDS on the map and made it no longer the fatal disease it was in its first years, if medication is taken properly.  Yes, it's expensive, but then so too is my Human Growth Hormone alone, not to mention the 25 plus meds that I'm on, give or take a few, depending on which year it happens to be.
  • Mothers Against Drunk Driving (MADD) worked because Candice Lightner, the mother of a girl tragically killed by a drunk driver, knocked on every congressman and senator's door, repeatedly, befriending staff with coffee and donuts until she found someone who might be able to help.  It was a tough job but look what it led to!  (And yes, there are political problems, but again, look at the results!)
  • Breast Cancer awareness began at a grassroots level.  Parkinson's entered the mainstream with Michael J. Fox, and his dogged determination.
  • Autism became big when upper-class parents united.

But CFIDS and fibro?  We need to find our celebrities, our dogged pursuers, the ganging together by healthy people who are on our side and start a huge funding project for our cause.  How this will happen when the American College of Rheumatology has given up on us as well, I'm not sure.  I know it's not going to happen for a while.  But happen it must.

Our country can't afford to keep losing its greatest resources, its best and its brightest.

As always, I hope everyone is feeling their best, only better.  Ciao and paka!

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