OT: chronic fatigue study results

Interesting how this intense study is now confirming what I've been saying for a decade. Take care of your mental health, learn to live within your stress limits, and know all physical limitations and this does not have to be horrible.

Thus, this study proves that these syndromes ARE PSYCHOSEMATIC

For some people, that is easier said than done. Mental health issues are also inherited, or often caused by early childhood development. To simply say, "Take care of your mental health," does not take into consideration a myriad of factors that can play into a normally healthy persons life (job loss, spousal loss, thyroid disease to name just three).

, learn to live

Again, an overly simplistic response. Stress is often caused by external pressures over which you have no control. The rise in the price of gasoline is a good example. In many situations, even getting to work can cause a significant financial burden to many. Thus, more stress on families.

and know all physical limitations

That is, of course, a reasonable argument - but may take some time to learn. In the meantime, you suffer. At least now they know it has a genetic base along with other real factors, thus find ways to effectively begin to treat it.

Like all syndromes and diseases, some people suffer more than others. For instance, in Russell-Silver Syndrome it can be mild with few complications, or severe with lots of complications. It's a genetic disorder, and although you can help by controlling environment and enlisting lots of support networks, in the end, there's not a whole lot you can do but work with the situation to the best of your ability to do that. How well the syndrome is managed also has to do with how much money you make (stress) and how good is your insurance (more stress and poorer outcomes for the syndrome).

Yes, there does seem to be a correlation here. But lest anyone get the wrong idea, it's genetic and that still does not mean that an individual necessarily has a lot of control over the syndrome.

Dianne

There are many ways to address mental health issues. First one must be open to the fact that they have a relationship with the CFS or FMS. Don't assume or insult my intelligence by giving me common references to very common stress factors in life. IT happens. Thyroid disease is treatable. Yes, people lose jobs, etc. However there are those who dwell in the misery and those who choose and make a decision to move beyond. Sometimes psyhotropic medications are necessary, sometimes cognitive therapy is good as well.

No, YOU may have control. I DO have control. I have major illness right now and I will probably need a liver transplant sooner than not. I choose to live each moment like it's my last, sucking the marrow out of life, enjoying my friends, and the other cherished people and situations in life. Easily I could drop out. I didn't say we can avoid stress, I merely said to be aware of limitations and where one can, address their mental health issues. Are you disagreeing with this "new" study?

That's not what I read. I read it is very difficult to treat, and it is. I have it. Can't make sandwiches without losing my breath and I can no longer drive or garden, or do many things while alone in the house. I will not now, nor will I ever, nor have I ever had the woe is me attitude, which is why many of my symptoms are not worse. My physicians are amazed at how I am functioning with all the major illness I live with. My mind controls how I view life, my body does not.

Left field. We are discussing CFS.

How WE MANAGE our lives can literally change our life and the way we view things. If you want to have this poor me I have syndromes attitudes, that may perpetuate your entire attitude.

I never said these syndromes are not real. I have several of them as a result of other factors as well as genetic codes passed along by my family, but how we view our lives can absolutely controlled and one can have a very fruitful existence, based on the way they process.

Actually, what CDC reported in their press conference is NOT, by any stretch of the imagination, what the research actually said. CDC has maintained from the first that this is psychological and is not going to publicly admit that they made a mistake.

I've been working for pay this week, so have not had a chance to read the actual studies myself yet, but one of my colleagues is working his way through them, and cannot believe that CDC got "just stress" out of what the researchers reported.

There are 2000+ studies worldwide showing objective, physical causes for the symptoms -- damage to brain and heart from a virus, genetic abnormalities, endocrine imbalances, etc. My CFS started with a 105 fever for several days ... that's a virus, and a pretty bad one. You can't psychosomatic a 105 fever. Perhaps if El Cheapo had taken me to the ER, the later problems would have been immediately acknowledged as post-viral, but I was delirious and he was making the decisions without my input.

The guy from CDC in the press conference apparently said that patients only "believe" we have sleep disruption, but don't really. If I'm only imagining that I'm awake all night, then how is it that I post to RCTN at 2 and 3 and 4 AM? Or that I have a needlework project finished at 6 AM that was not finished at 11 PM when I went to bed? Although my doctors didn't want to give me any test that might prove something was actually wrong, so I never got a sleep study done, there are plenty of CFS patients who've had sleep studies that prove that they are not merely imagining they don't sleep well.

CDC walked away from the devastation at Mercy San Juan Hospital in 1975, and from the epidemic in Incline Village in 1984, both times saying that they couldn't see what the local doctors could see. If you don't know the patients to be hard workers, it's easy to write them off as lazy ... but the patients in 1975 were respected doctors and nurses well-known to the local doctors who were treating them. Their colleagues (who were now their treating doctors) knew them to be hard workers, but CDC refused to believe it.

Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention based on the correspondence they exchanged over a period of months was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine."

CDC is still clinging to their original mistaken belief that there's no physical cause for the symptoms, despite thousands of studies worldwide proving them wrong. Even these studies that CDC commissioned prove them wrong, so the solution was to have a press conference announcing what they wanted the studies to say, and hope that none of the journalists would actually slog through the research reports to notice the discrepancies.

Some of the actual research reports are posted at

Read them for yourself if you don't believe me. groups are in the process of preparing a joint document which will shoot large holes in what CDC would like you to believe (that the only cause is psychological stress, and not the PHYSICAL stressors that nearly all CFS patients report). Something like 85% of patients report a very bad "flu like illness" from which they never recovered; CDC doesn't want to hear about a virus epidemic, so they just ignore it. Imaginary illnesses don't happen in epidemics (and just how would a bunch of people who don't know each other all show up reporting the same symptoms?), and don't cause the objective physical changes that have been documented by thousands of non-CDC studies over 30+ years.

I have a blood test which should be in the 3-5 range, the first test was

1. It was so off-the-charts that they concluded it had to be lab error, took new blood a week later, and that result was even higher, in the 30s. One of the things that blood test shows is inflammation of the heart, and a couple weeks later, doctors in New Jersey reported that they found infection/inflammation of the heart in 100% of seriously ill CFS patients. It's surely not hypochondria when a blood test that I initially had never even heard of matches exactly the objective evidence reported by doctors several weeks later. The only coincidence is that they announced their findings while I was trying to find out what this test result meant.

As usual, terms like hypochondria are raised, bla bla bla. CFS is a combination of factors. Mind/body connection. These 2,000 studies, where are they?

Who are these New Jersey doctors you speak of?

Nobody mentioned any of these hysterical words.

If you look at the article, it says "... The CDC estimates more than

1 million Americans have the condition, with women suffering at four times the rate among men. ..." This means that, as a predominately women's disease, it's going to be ignored by our patriarchal society for as long as possible. Look how quickly prostate cancer was dealt with as opposed to uterine or ovarian cancer! Regardless of how much progress women have made in our society, we still have a VERY long way to go when it comes to predominately female health issues! I'm sure there are a lot of high powered women working at the CDC but I'm equally as sure that they are outnumbered by the men. Until women start kicking, screaming and pitching hissie fits about predominately female health issues, the male "ruling class" is gonna drag their feet as long as possible. Remember -- they run the insurance companies too! And ain't THAT a happy thought!!!!! CiaoMeow >^;;^<

Now I've heard everything.

I was disgnosed in 1982 by a board certified rheumatologist as having fibromyalgia, MPS and CFS. Nobody laughed at me, or treated me unkindly or put me off.

There is NO treatment other than those drugs which relieve symptoms. I have to take injections now of Procrit to keep my red count above 9, which will have to come up or I will need blood transfusions.

Stop with the hysterionics.

Because of your other post in response to mine, I will add to your thoughts on this one:

Thyroid disease is *not* always easily controlled. And for about 15% of patients with some forms of thyroid disease, it taxes both physician and patient. Further, many endocrinologists are still treating patients based on 40-year old data, or treat patients dismissively. According to recent studies, over 69% of patients with Graves disease complained about doctor/patient relationships.

Further, doctors simply don't know how thyroid disease works, and there is evidence that it can cause permanent damage to cognitive functioning, memory functioning, mental health, and physical functioning. Graves disease can lead to serious sight disorders as well as skin disorders.

Most of the research has been done on patients with hypothyroidism as opposed to patients with hyperthyroid conditions. In either case, there is an enormous amount of research that still needs to be done to fully understand thyroid diseases. It is not a "simple" disease. Indeed, it can be quite complicated.

Again, these are diseases that affect many more women than men. And the many female endos who treat their patients are no better than their male counterparts. Draw your own conclusions.

Dianne

Bingo! One of the early statements by Stephen Straus of CDC, which they have conveniently erased from everywhere except the personal files of patients who cut it out of the newspaper, was that we're simply menopausal women who need a kick in the butt to accept we're not young any more. I got sick at 28 ... a helluva long way from menopause. Dr. Bell's patients in Lyndonville were primarily children, even further from menopause than I was! The primary author of this Request for Congressional Action, well, when *he* hits menopause, I'm calling Ripley's Believe it or Not.

Eventually those inconvenient facts got enough publicity that Straus had to stop attributing it to menopause, though he continued with his misogynistic statements by portraying us as hypochondriacs. Until it was driven home that if you are a hypochondriac, no one knows you're sick unless you tell them; most CFS patients have friends, family, co-workers who can see for themselves that the patient is fainting, dropping things, slurring words, losing their memory, awake all night, falling asleep during the day, etc., which makes it obvious to those around them (if not to doctors who see them only 5 minutes a month) that they are, in fact, sick and not imagining things.

Despite the assertions that we were faking because we didn't want to work, most of us continued to work as long as possible. I worked full-time for 12 years after being diagnosed. As soon as it became apparent that no one was going to hire me when they saw the symptoms, I started my own business. Really shoots to hell the theory that I just don't want to work.

If my goal were simply to get government benefits, I could've gotten them within 9 months with no judge/doctor's approval needed, by having a one-night stand and producing a little welfare beneficiary.

I've been reading "Osler's Web", and several years before CDC decreed the name "CFS" in 1988 and put forth their lazy-and-crazy theories to support that choice of name, doctors were already finding brain lesions on MRIs, similar to those in MS, but more numerous. CDC covered that up. CDC covered up a lot of other objective evidence that we've only learned about through the grapevine, or through the researchers putting it up on their own websites now that that option exists. As Hillary Johnson says, this was a conscious decision on their part, to save the government and insurance companies a lot of money by claiming there's no proof of disease. And now that their own research came out with objective proof of defective genes, they can't admit that they were wrong, so they continue to portray it as a purely emotional problem.

When, after my wonky blood test, someone pointed me to the cardiomyopathy research at

, I couldn't believe I'd missed this earth-shattering news. Googled to see when it hit the mainstream media and couldn't find a darn thing in any major newspaper. What I did find with that googling was that in 1993, A. Martin Lerner had also found viral damage to the heart, which also didn't get any play in the mainstream media. if you believe CDC, there's no virus, no damage, no visible symptoms, only our fragile female psyche's inability to cope with emotional stress.

Prominent researcher Dr. Muhammed B. Yunus says ?It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say.? And, in this case, CDC is manipulating the research to say what they want it to say: that the problem is not in our genes but "stress".

The psychiatrists find nothing emotionally wrong with me (though they do document severe cognitive and memory dysfunction fitting the pattern Dr. Sheila Bastien documented for CFS patients). There's no "secondary gain" for me -- no husband paying the bills, no doting family allowing me to stay in bed while they do all the chores, no government benefits, no escaping working for pay, none of the things that would ordinarily raise a red flag.

Over the years, I've paid out a lot of money I don't have to get other people to do a crappy job of housecleaning ... often to the point that after I pay them, I have to re-do the job correctly myself. Why on earth would someone counting her pennies be spending money on something she could easily do herself? Unless it's not something she can *easily* do, but something that lands her in bed for a couple days for trying to do herself when the hired cleaners don't do what they were paid for.

Let me make it perfectly clear that, when I accepted the term "psychosomatic", I meant that I understood what it means based on the dictionary definition: Pertaining to or resulting from the interaction between mind and body. Thus, if the patient, because of genetic factors, cannot handle stress well, there is cause/effect. This does

*not* mean that the individual is a hypochondriac. This does *not* mean that the patient just needs to "buck up". You wouldn't tell a person with a broken leg to just wrap it up and get on with life.

It is so very difficult to talk about these issues because so little is understood about mental health, including stress related factors, and how it affects our bodies. They understand some of the chemicals in the brain, but they absolutely do not know how all of it is inter-related, how it all works. It isn't simply a matter of good Zen.

My husband has MS and he was treated extremely poorly when first diagnosed. The neurologist on staff, at the time, accused him of faking his paralysis. At that time, MRIs weren't available, however spinal taps were, which showed that he did, indeed, more than likely have MS. The markers were there. Still, this neurologist gave a negative report and continued to submit that the patient was exaggerating symptoms. So, it isn't only women who are picked on. When medical science can't answer questions, they frequently get defensive. We need to train them differently. It is only the odd scholar who forges through.

Dianne

Your efforts of explanation are well founded and I am in agreement with your above statement, but to some it will always sound like they're being told they are a mental case, it's in your head, and every combination including the silly and unfounded "because I'm a woman getting old."

I have no idea what you mean by good Zen. It is a matter TO ME and managed by me in my own life as simply a matter of right view. There is a LOT known about mental health, and millions of people are successfully treated all the time. There are cases of resistance, but it is many times associated with addiction or other factors.

I never had this experience, but feel for your husband as MS is nothing to shake a head at and dismiss. Is he able to function at all?

WHAT "hystrionics"? It's a blatant fact that the whole blamed country (especially the insurance and financial areas) is run by men and they ARE NOT generally interested in women's issues! Why do you think birth control pills aren't covered by a lot of insurance companies? Men make the rules -- this is not histrionics but a fact of life and women must struggle against on a daily basis! Sheesh -- if this isn't a case of the pot & the kettle, I have never seen one -- LOLOL! CiaoMeow >^;;^<

In fact, they absolutely do not understand brain chemistry. They have some good theories and are treating according to the theory of the "day". But they do *not* understand how all of these chemistries interact with one another. They are doing much better than they did 30 years ago, but they still are a very long way away from successful treatment for many.

Granted, many are helped. Often times these are people who suffer mild to moderate disorders. But just as many find little, if any, relief. New drugs are constantly being sought. Many of these "miracle" drugs cause serious side effects, and a person has to choose between diabetes and tremendous weight gain or serious depression; severe night sweats and lack of sleep or serious depression. Addiction vs. less anxiety. Loss of sex life or mild to moderate depression. The list goes on.

Yes, quite well. He has classic MS which means he goes through periods of blindness or paralysis and long stretches symptom free in between. His vision has never returned to normal and he has balance problems. But that we can live with. Thank you for asking.

Dianne

The current treatment I am in causes very high anxiety. I have been sober and clean for 22 years. If it means I have to take a xanax daily, or weekly or whatever frequency, it's my character which doesn't allow me to be dishonest with myself and rationalize back into relapse, or addiction. Maybe I'm an odd case, but I don't let medications scare me.

I don't know much about MS at all, but I've watched it ravage people. Annette Funnicello (sp?) for one. It is a blessing that your husband can have periods of wellness. Very fortunate.

All this is just making me sooooooooooo tired.

Y'all are never gonna convince the others of your side of things.

I'm no physician, nobody here is (that I'm aware of). The only responsible thing we can do is share links to sites that ARE written by doctors, and say if you've found it helpful to you or not. Dispensing medical advice or declaring actual members of the medical field "wrong" or "quacks" because they have disagreed with your narrow (and if it's only about YOU it is very very narrow indeed) view is just wrong.

I barely came here for months, and discover on my return that it's the same old crap. Who you gonna blame now that I wasn't here to point the finger at, eh?

Caryn

This goes beyond insenstive.

What is insensitive (you left out an "i", Darla, oh perfect one! ;-) ) about a perfectly logical statement like that?

It`s perfectly true - no-one`s going to have their mind changed by anything anyone says on here - nor should they. You can only speak from your own experience, and with this complaint that experience will vary VERY widely, largely depending on how each particular sufferer deals with it.

If the medical profession doesn`t have all the answers, it`s for sure that no-one on here is likely to have them!

Pat P

I'm with you Darla, the nastiest post in a couple of months!

You`d be with anyone who was against Caryn, right or wrong! LOL! There was nothing nasty or abusive about it.

Pat P