OT: chronic fatigue study results

Pat,

I expect that sort of snark bait from Sheena. I'm ignoring it, as she's just looking for someone to fight with, so very very predictable, don't you think?

Not sure how saying that giving out "medical" advice or calling a doctor a quack (just because you think you know more than a trained physician) is wrong is insensitive, but so be it!

Whole thing just proves that people here will never change, me included! LOL

Caryn

I did not mean to start a war of words. I know that there are other CFS suffers in this ng. besides myself and posted the study to simply inform . The thing I found interesting was that some people appear to have abnormalities on some genes. I do not agree with the conclusions the researchers drew from this. There are many reason for genetic damage, not merely inheritance,exposure to some chemicals, radiation etc. The damaged genes may be the result of the triggering virus, or of CFS itself. It seems a no brainer that people who are exhausted and fatigued and in pain all the time would find life stressful. ruby

And vice versa - it seems to be a "chicken and egg" situation, doesn`t it?

I have a young friend who has suffered with it for many years - and she also has rheumatoid arthritis, which also seems to come in waves, with periods of remission. She also has an epileptic son - but she (and this is a MAJOR factor) has a very positive attitude and makes the most of her remissions. We never know whether she`ll be in a wheelchair or striding out down the road like everyone else!

Most of the time she has to resort to bath and stair lifts, and even on good days has very little strength in her hands. As I say, she`s very positive, and it`s a very cheerful and happy household - although raising a young son. for her, is obviously stressful.

Different people are mentally affected in different ways. Attitude is all-important.

Pat P

Clearly there are "types" of people who share same physical limitations, but how they engage those is a monumental shift.

The attitude of "what have you done for me lately" and all this feeling of entitlement which goes with that attitude is, in and of itself a cause for flare ups of any syndrome or disease.

But, you're right. We all live our lives and choose how we'll do that.

Having a support system you can count on is important, too.

Not one of my female "friends" has ever come over to clean my house. One of my male friends has done it for pay a few times, but he does a sloppy male job. Which, in fact, was better than the job done by the professional cleaners I hired, who tend to disappear into the kitchen for four hours and never touch the rest of the house (and then I can't figure out what they did in the kitchen that took four hours).

She has a husband who has a full-time job and a full-time paycheck, which is a big stress reliever over having no husband and no reliable income with which to pay the bills. I was always the primary (or sole) breadwinner; my husband flat-out refused to step up and shoulder the responsibility. When the doctor said continuing to work full-time could kill me, all he could see was the $100,000 life insurance money.

When I am so weak that I am unable to get out of bed, there's no one to get me a glass of water. There's no one to fix dinner -- if I'm too sick to cook, I don't eat. For days. Not eating is a sure way to get sicker, not better. I would be willing to bet that your friend with the positive attitude has never gone days without eating because everyone she called was "too busy" to spare her a couple minutes.

You put her in my position, where everyone tells her "no", where every single thing that needs doing is on her shoulders alone (sick or not), where there's no money coming in, and see how long she keeps her "positive attitude".

It's not that I was a burden to my friends and they finally started saying No because I was asking too much -- the selfish witches said No to my very first, reasonable request ("could you stop at the takeout that's on your way home from work and bring me some soup?") I never even bothered asking them for something more time-consuming like hours of house-cleaning.

When I start getting the help I need, whether from the government or from my friends, I'll have more to be cheery about. But all I get is abused -- by cleaners, by doctors, by judges, by friends. There's no cure, and the government hushes up all the evidence of real medical abnormalities. What do I have to be cheery about, other than that I'm not dead?

Then I finally get to a doctor who knows something about this, and his big question is "I can't find what pain medication they gave you for the constant pain. What are you taking?" He was absolutely horrified that I'd been living with constant pain for years without a single pain pill

-- no wonder I was getting worse! He put the blame for my current condition squarely where it belonged ... not on the patient, but on the doctors who refused reasonable requests for necessary medication. They wanted me to pull off a miracle and go back to work, but UNTREATED medical conditions get worse, not better.

You won't find what you're not looking for. My former doctors could say there was "no evidence" because they didn't do the tests that would have shown problems. They did a handful of tests that proved that I do not have what I do not claim to have; the tests that would have showed that I *do* have what I say I have, were never done. Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run. ?? Devin Starlanyl, M.D. (and patient) When I finally had a test that would show the right things, it was so far "off the charts" that the doctor assumed it was lab error. More blood was drawn, the test was re-done by a different technician, and the results were even higher.

Nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years "hysterical paralysis". -- Johnson

Now that Modern Medical Science has found actual physical causes for MS, we're all incredulous that patients for so many years were treated with the same scorn that CFS patients get now. 50 years from now, they'll be amazed that CFS patients were called fakers and nut jobs for something that has a documentable physical cause.

"Osler's Web" by Hillary Johnson does an excellent job of explaining what the doctors found, and how CDC refused to accept any evidence of biological causation in their quest to portray this as a purely psychiatric illness.

Dr. David Bell's book, in the chapter on immunology, lists not only the results of research, but also the date. Low functioning of natural killer cels in CFS were noted in 8 separate studies between 1985 and

In 1990, Dr. Nancy Klimas observed "CFS is a form of acquired immunodeficiency"; CDC clearly never read that paper, either, since they're still thumping on their psychology drum, while people like Dr. Mark Loveless of Oregon Health Sciences University see similarities between CFS and AIDS (which was, initially, also derided as a psychological problem until someone happened upon a test for the correct virus).

Eventually, someone will find the right virus that causes CFS, and all this nonsense about being emotionally fragile basket cases who can't handle a little stress will fall by the wayside, just as it did with MS and AIDS. Meanwhile, the patients who supposedly can't handle stress are subjected to even more financial stress and verbal abuse by people who don't get it that verbal abuse is not helping. Or maybe are so mean-spirited that they WANT to cause the person to get sicker.

What one DOCTOR says -- David S. Bell, M.D., who has been researching CFS since the 1984 Lyndonville epidemic, author of "The Doctor's Guide to CFS", treating hundreds of CFS patients for the past 22 years.

Note that even Dr. Bell says that CDC/NIH don't know what they're talking about. And *why* don't they know? Because they have done very few CFS studies (as compared to the many done with private funding) and because many (including the current batch) of the ones they have done have been invalid because of the inclusion of people with a diagnosis of primary depression, which would skew the results. Distinguishing criteria (such as exercise intolerance) are missing in the CDC diagnostic criteria, although they are in the internationally-accepted criteria (

Cerebral Atrophy Introduction Literature Review: The Presence of Cerebral Atrophy in CFS Literature Review: Cognitive Symptoms of CFS Literature Review: Abnormal Cerebral Perfusion in CFS

I do not like to deliver discouraging news. But for many years the medical world has been dismissing CFS/ME because there has been no science to say that this illness is serious. Now that scientific information is pouring in abundantly. Is the medical world going to continue to maintain that ME/CFS is a trivial psychosomatic problem of neurotics and hypochondriacs?

In this issue of the Lyndonville News I would like to summarize several studies, two of which show the presence of cerebral atrophy. In lay terms, that means that the brain has decreased in size, presumably because of death of brain tissue. The other reviews outline a new study proving the cognitive symptoms and some older studies demonstrating decreased blood flow to the brain (cerebral hypoperfusion). In my opinion these issues are connected or linked.

Many standard neuropsychological testing results have been considered ?normal? or ?consistent with depression?, primarily because the areas studied were not the areas of impairment in CFS. If neuropsychological testing were to be done, the focus should be on ability to maintain attention, verbal processing speed, reaction times, and the ability to acquire new information. For a review of the neurocognitive studies, see Jason L, Corradi K, Torres-Harding S, Taylor R, King C. Chronic fatigue syndrome: the need for subtypes. Neuro-psychology Review

For those persons with severe CFS persisting for more than five years, the likelihood of recovery is slim. I would assume that the neurological damage that causes the symptoms is also causing the cerebral atrophy, and that is not likely to be reversed.

ME/CFS is a debilitating disease of the central nervous system that causes widespread disability. Unlike Alzheimer?s disease, ME/CFS affects young people in the prime of their life and affects children as well. It should no longer be considered a trivial problem.

The NIH and CDC say that this illness does not run in families. Every clinician who studies ME/CFS knows that it does.

There are probably six known genes that could be involved in ME/CFS (see below). Is the NIH studying it? I have fifteen families in my practice where parent and children are ill. Anyone out there want their blood? Why is this not important ? and don?t say its because of subtleties in the diagnostic criteria. I think that is merely an excuse to do nothing. I would say to the CDC, pick your criteria and study it. To the NIH ? fund some studies. You complain that there is no proof, but no one will put up the money to do a study. By the way, I just read that the NIH has funded five Botanical Research Centers for five years each to look at botanicals from flaxseed to tarragon.

Genes that may play an important role in ME/CFS, partial listing:

1. Polymorphism in PON1 gene encoding paraoxonase/arylesterase, an enzyme that hydrolyzes organophosphate poisons to harmless products (Haley R, Billecke S, La Du B. Association of low PON1 type Q (Type A) arylesterase activity with neurologic symptom complexes in Gulf War veterans. Toxicol Appl Pharmacol 1999;157:2129-2137).

1. Familial corticosteroid-binding globulin deficiency, due to null mutation in globulin gene (Torpy D, Bachmann A, Grice J, Fitzgerald S, Phillips P, Whitworth J, et al. Familial corticosteroid-binding globulin deficiency due to a novel null mutation: association with fatigue and relative hypotension. J Clin Endocrinol Metab 2001;86:3692-3700.

2. Hypofunction of 5-HT system due to long allelic variants in the serotonin transporter (5-HTT) gene promoter (Narita M, Nishigami N, Narita N, Yamaguti K, Okado N, Watanabe Y, et al. Association between serotonin transporter gene polymorphism and chronic fatigue syndrome. Biochemical and Biophysical Research Communications 2003;311:264-266.

1. Myoadenylate deaminase (AMPD1) mutation cause of myopathy.

2. Carnitine palmitoyltransferase (CPT2) gene mutation causing myopathy.

1. I/D polymorphism in ACE gene (DCP1) (Vladutiu G, Natelson B. Association of medically unexplained fatigue with ACE insertion/deletion polymorphism in Gulf War verterans. Muscle Nerve 2004;30:38-43.)

2. Polymorphism of the corticosteroid binding globulin Ser/Ala 224 (Torpy D, Bachmann A, Gartside M, Grice J, Harris J, Clifton P, et al. Association between chronic fatigue syndrome and the corticosteroid-binding globulin gene ALA SER 224 polymorphism. Endocrine Research 2004;30(3):417-429.

Patients with chronic fatigue syndrome experience severe fatigue, orthostatic intolerance and numerous other symptoms that are similar to known illnesses of the autonomic nervous system.

• * There you have it -- a doctor whose life's work for the past 22 years has been researching and treating CFS, reporting on research that CDC claims doesn't even exist with their disingenuous "first evidence" speech last week.

If you want to see psychological factors, that's all you'll see. If you're looking for physical/biological factors, you'll find plenty.

Dr. Sheila Bastien, neuropsychiatrist: Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value. ... I remember thinking that if I were testing nothing but Alzheimer's patients, then I would say "This group isn't very impaired." But they were more impaired than the head concussion cases that I've tested that have been in litigation. ... And it looked worse than most of your average depressions.

In 1985, Dr. Bastien produced the first neuropsychological "signature" for CFS; CDC ignored it because it didn't fit into what *they* wanted to find.

As I said initially, what CDC claims to have found, and what the researchers who have dedicated their lives to CFS have *actually* found, are two radically-different things, because CDC's goal, since 1985, has been to portay CFS as a purely psychological disease, to discredit the patients, so that the government and insurance companies can apply the two-year limit on disability benefits for psychological problems, instead of having to pay benefits for life.

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."

The government is not always your friend ... sometimes, the government is a better friend to those with the big lobbying bucks.

What some of us are forgetting here is that, not too long ago (less than

Even after the knowledge was accepted, many doctors in the "field" still ordered maalox for their patients, patted them on their head and sent them on their way. I still know of current incidences of doctors treating patients in this manner. Many physicians don't keep up, or they're like many of the rest of us: refuse to accept new knowledge, clinging instead to old beliefs.

Patients with unusual conditions have to remain vigilant, research, and often go from doctor to doctor until they find one willing to listen. They frequently have to take charge of their own disorder, and often times will know more than the doctor willing to help. My own daughter is training her son's endo and will train his new partner. So, yes, it's possible to know lots more than even a specialist, let alone a primary care physician.

Dianne

Dianne Lewandowski ,in rec.crafts.textiles.needleworkwrote: and entertained us with

Years ago my doctor said to me that if you have something (in my case it was debilitating migraines) you will read, watch or listen to anything published or said about that one ailment. He couldn't possibly read everything that came across his desk about all ailments. That's common sense and he has always encouraged me to tell him if there is something new I would like to try etc. and is not offended if I 'educate' him about migraines.

I believe one needs to take responsibility, in part, for whatever ails one and I feel if I did not have a sympathetic physician, I would try another! As it is, I fear mine is going to retire before I croak.

Hi Karen,

Good grief was I surprised to find all of this here. I thought I had signed onto a chat line that was about needlecrafts!! But as a 12 year veteran of the CFS wars I am glad to see you standing up for us. Excuse the pun, but if you are like me, standing up is one of the things we don't do very well.

Someone in this thread mentioned there are no doctors here, well here I am! I practiced psychiatry for a long time before this illness took away my career and most of my life with it. I have followed the CDC's pathetic response to this dreadful illness and wondered exactly what their agenda was. I even remember when there was a congressional investigation when they stole a good part of the pitiful amount of money that was assigned for CFS research.

It is a long sad story and I don't expect to see a real understanding let alone a cure in my lifetime. In the mean time, I applaud your responses and courage to shed the light of truth onto this mysterious life stealing ailment.

A while back a general surgeon wrote a letter to the editor of the Journal of the American Medical Association. He suffered from CFS and had been ill treated by his former colleagues. One of his remarks remained with me. He said, "There is nothing this disease can't take away from you, nothing."

Thank you, Karen

Charlotte Needlepointer, knitter, and quilter

Welcome, Charlotte.

I fortunately am very healthy, but over the years on this group I have "met" people, now friends, who suffer from this and allied conditions.

A professional breath of fresh air is great!!

Gillian

Charlotte wrote:

Welcome, Charlotte, and you're welcome, as well.

Standing up isn't one of the things I do very well, either. I've had phases where if I stood up, I passed out. And even at that stage, couldn't get anyone to help with the daily necessities of life unless I paid for it (which is pretty tough to spare when you're earning $200 a month). You do what you can, and put up with the jerks who think you should be doing more. After all, look at all the time I have on my hands now that I don't have a full-time job any more! (Never mind that doing one load of laundry and getting the sheets back on the bed can take me all week because I have to rest after each stage of the process.)

Quite frankly, I get peeved with people who have an invisible illness called depression who expect sympathy for their illness, but turn right around and say that because my disability is invisible, I must be well enough to work. Or people who have been SAHM for years who declare that

And I get peeved with PCPs who diagnose depression even after people with counseling/psych training have made it clear that the only diagnostic questions that I'm saying Yes to are the ones that would be expected of someone who's got a physical illness like the flu. I'm not suicidal, I have no self-esteem issues, I don't cry, I don't lack goals ... what I lack is the physical ability and the support system to get things done.

It was bad enough in 1987 when I was diagnosed with depression instead of CFS (which was only just making the news), but I went through the same garbage in 2000/2001, because even after it had been around more than a decade, there were still doctors who thought they were the same thing, and had no clue that the information I was giving in my medical history was the specific information necessary to differentiate which one I had, because I *knew* those were the differences. They heard tired and spacy and thought they didn't need to hear any more to make a diagnosis.

Then I found that even patients in support group didn't understand that there's a difference between the symptom of fatigue and the disease of CFS, and decided I'd found a new career as a CFS activist, making sure that doctors and patients all understand how to differentiate CFS from depression, from simple fatigue, from the other things it looks like (but isn't). If CDC won't do their job, I'll do it for them.

Karen, Dear ... don't slam SAHMs in order to make the point that you've had a hard time of it. The work of SAHM is unbelievably tough. Harder than any outside job I EVER worked! (Though admittedly I've never done manual labor ... other than taking care of the family and house. And frankly, I would only do that work for love; certainly not enough $$$$ in the world to pay me for those tasks!)

You risk the loss of credibility when you slam another group in order to make a point, regardless of the validity of your point. And the message you have to spread is an important one; too important to weaken the platform on which you stand with global putdowns of any one (or more) groups of people.

Helen

Loud cheers from the sidelines!

Pat P

I had in mind one particular SAHM, who had kids as an excuse not to have an outside job, but who actually spends very little time with them (or cleaning).

She is, in fact, lazy herself, and projects her laziness (unwillingness to work inside OR outside the home) onto me. She lives in fear of the day that the last kid graduates, when she'll have no excuse for being a SAHM any more.

I've achieved the Holy Grail, in her mind -- I have a doctor's note saying that I can't go back to work, which means that I'll never have to deal with my husband suggesting "the kids are grown, why don't you get a job?" She lives in fear of that day, and cannot relate to the notion that *anyone* would rather work than stay home and play all day.

Unfortunately, Helen, not every mother is as involved with her kids as you are. Some ship the kids off to someone else's house as much as possible so they won't have to bother with them.

Lord knows that doing the SAHM thing comes with enough stress without someone who has never had children slamming you for that choice.

After 12 yrs of being a SAHM I'm back in the work force, the kids are finally old enough that they can cope without me for 2-3 hrs after school. I miss being a SAHM, but also relish being out in the world again. But I like to think all those years I spent at home is part of why my kids are doing so well with their lives. All make honors roll, none has ever been in any trouble, they have all picked friends that I approve of...can anybody say that being a SAHM isn't worthwhile when that is the result?

Caryn

Hmmm, couldn't be your attitude of entitlement, could it?

So you insult men, call people who ignore you friends and possibly you're a slob needing kitchen cleaning for hours. If it didn't make a dent, that's on you. Housecleaners clean, they don't put stuff away and organize.

My beautiful husband does laundry, washes all dishes, vacuumes, feeds the bird, cleans her cage, wipes the kitchen down daily, goes food shopping and puts it away AND cooks it for me. I didn't get that support out of the air. I'm a good wife who complains very little and I certainly don't tell him the job he did was a sloppy male job. I am very happy he did it at all. So, try shutting your big mouth once in a while and be humble.

Those husbands were your choice.

Corn flakes, cereal, fruit, salads, etc. It's what I eat when Mark is at work. It may be hard to walk to the kitchen for me, but never hard enough not to do it. Your sense of entitlement is a repellant to everyone you know. Keep water by the bed with a bowl of fruit.

Money and things are never what make me happy or positive. It's my spiritual life which does that. Maybe you should go to that church of yours more often and really listen. You don't take responsibility for anything. If Mark lost his job, I'd live in a yurt with him and be happy. Happiness does not come from attachment to things and people. Security is not what I have, it's what I can do without.

And you continue to call these selfish witches friends? No wonder they love you. When I was really sick, Mark was not good at picking out a nice Porterhouse steak. I was not vegan back then. I called my friend Kristal and in a half hour she was here with a beautiful steak to cook. Then she left. I would never ask someone to clean my house. First of all it's never that filthy.

Get rid of your sense of entitlement and you may see changes. When everyone treats you the same way, it's YOU, not them.

Yeah, but you don't have a degenerative disease like rheumatoid. You have CFS, which has no direct treatment. What pain meds are you on now?

You go to Devin now? Hahaha.

Yeah, you already said this in multiple other posts. My red blood count is 6. I need a blood transfusion. Now what? Oh, all better now. NO. It means I live with my limitations no matter how frustrating it may be.

I don't know anything about that. And now I'm bored with your repetative, self-centered, self-pity, poor me misery. Stay that way, it's working.

What's the name of this bacteria?

You are absolutely insane.

So stay away from her. Geeze. So what you're saying is that if a man rapes, they all rape?

You have no evidence of this. Kids always go over one another houses. I know that from my neices who are always on sleep over's.