CFS on M&J yesterday

For those who didn't get a chance to see the show ....

They only gave it about 10 minutes. Started with the Yuppie Flu/Shirker Syndrome accusations, but then admitted that CDC has now acknowledged how devestating it can be, with theories of genetic pre-disposition and toxic origin. A telephone survey showed 1-in-40 adults may have CFS.

The guests were Shanley Crutchfield, a 21 y/o girl; Brian Bernard, a 13 y/o boy, and his mom Dr. Donnica Moore; and Dr. Mark Siegel of NYU Medical School.

The girl described it as "utter exhaustion". The boy asked his mother "do I have cancer or AIDS?" because he thought he was going to die. Dr. Siegel says (as I do) that it's both under- and over-diagnosed (i.e., people who have it get misdiagnoses of something else, and people who have something else get misdiagnosed as CFS), and stressed that early intervention makes a difference. Unfortunately -- like CDC's website -- he didn't say what intervention. (The only early intervention I was offered was anti-depressants, which are known to be totally useless.)

It worked out that in the audience was Kathy Rabin, who was a lawyer at Massachusetts General Hospital when she was struck in 1990; as a result she had access to top specialists. Juliet observes "You went to Harvard and Yale; you're not lazy."

Being a doctor herself, Dr. Moore had access to all 3 of the top CFS specialists for her son. The only one she mentioned by name was David Bell. As she was asking him the question, the answer dawned on her, that the reason this is most diagnosed in overachievers is that "only overachievers have the credibility" to be taken seriously that they are not lazy.  (Though this requires the doctor to either know the patient previously or believe she's an overachiever -- most doctors didn't inquire into my history, just assumed that I don't like to work because the stereotypical woman gets married to be a housewife and I don't want to exercise because women don't like to get sweaty.) 

Dr. Siegel did bring up the problem of symptom overlap with depression, as well as depression caused by the limitations imposed.

I think we all need to go to the MandJShow website and thank them for making the point that it's real and not just an excuse. comments@mandjshow.com

Next: we inundate Oprah and Dr. Phil's websites with requests for a full-hour show with Bell, Peterson, Cheney, Klimas, Jason and Komaroff talking about the science behind it.

More on the NYT Article & Ampligen

A letter from CFS patient Nancy Kaiser to the author of the NYT article (which was also published elsewhere) suggests reviewing the website of The National CFIDS Foundation http://www.ncf-net.org/, click on Medical Discoveries.

Nancy also quotes extensively from "Osler's Web" which she calls "my story of the battle with this illness. I was sort of the poster girl for being as sick as you can get with this disease(I still am)" "My story was also the lead story in the Newsweek article from November 12, 1990 -- plus then carried a few months later in Reader's Digest." Nancy was one of the first patients to receive Ampligen in clinical trials.

(The entirety of Nancy’s extremely lengthy response is available on Co-Cure.org. It is much too long for the size limit on blog posts here, so I feature only excerpts.)

* The loss of Stat1 in patients with this disease has been confirmed by three independent research groups [DeMeirleir; Suhadolnik; Knox and Carrigan]. Loss of Stat1 constitutes a serious illness that may ultimately be fatal due to the fact that this leaves the patient unable to fight bacterial and viral infections thereby resulting in severe immune deficiency [Dupuis; Durbin]. Patients are frequently seen with multiple secondary opportunistic infections with researchers labelling this disease as a form of AIDS [Klimas].

* Immune disruptions have been frequently documented in these patients as evidenced by abnormal changes in CD4/CD8 ratio, absolute changes in lymphocyte or T-cell counts (typically lymphopenic); changes in CD19 B-cell counts either diminished (Common Variable Immune Deficiency/CVID) or increased (Leukemia). [Uckun; Johnson; Hilgers].

* Dramatic alterations to circulating blood volume have added to further restrict patient daily activities [Streeten] with exercise capacity and performance directly related to immune dysfunction [Snell; Nijs; DeBecker]. Abnormal changes in heart rate and blood pressure are frequently present [Streeten].

[ The following are excerpts from the book "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" by Hillary Johnson, Crown Publishers, Inc., 1996. ] All text ©1996 by Hillary Johnson

p. 254 (1988) Since the local epidemic, Peterson had been an avid reader of the AIDS medical literature, scouring journals for studies about the better-studied immune disorder in hope of finding therapies for his own patients. ... Aside from Ampligen's apparent clinical safety, Peterson noted that the test subjects who fared best were those who had yet to advance to full-blown AIDS -- the AIDS-related complex sufferers -- whose clinical symptoms were virtually indistinguishable from those of chronic fatigue syndrome sufferers.

p. 355 (1989) Additional testing revealed that those patients who responded well to Ampligen had a deficit in the body's natural antiviral defense system. David Strayer had found the same deficit in AIDS sufferers who responded well to Ampligen. Peterson and Strayer suspected this defect might eventually become the diagnostic hallmark that had been sorely lacking in CFS.

p. 506 (1991) Few placebo recipients demonstrated improvement; in fact, several deteriorated during the six months of the trial.

*Their deterioration may have been due to the fact that they were required to stop taking all other medications in order to participate in the trial. In addition, simply getting to and from the infusion site two or three times a week [frequency was determined by dose; not all patients received identical dosages] amounted to tremendous exertion for CFS patients and may have exacerbated their disease. The forty-five people who received Ampligen were demonstrably better. The outcome was so dramatic, in fact, that HEM decided to end the trial after just twenty-four weeks rather than the forty-eight weeks it had first planned. For instance, there had emerged strong evidence that interleukin-1, a substance manufactured by the immune system in response to viral infection, might be a marker of disease severity. Patients who received Ampligen experienced a reduction in interleukin-1 as well as a reduction in symptoms. In addition, in 1994, Temple University School of Medicine biochemist Robert Suhadolnik and other clinicians and scientists who collaborated on the trial published a study reporting that the drug ameliorated a defective antiviral pathway common to CFS patients.

*Robert J. Suhadolnik et al., "Changes in the 2-5A Synthetase/Rnase-L Antiviral Pathway in a Controlled Clinical Trial with Poly(I)-Poly(C12U) in Chronic Fatigue Syndrome," In Vivo 8 (1994): 599-604.

"Poly(I)-Poly(C12U) is the molecular name for Ampligen. Before treatment with Ampligen, the molecular indicators for damage to this pathway were "significantly elevated" compared to those of controls. (This finding was yet another link between CFS and AIDS; victims of AIDS suffered an identical defect.) After treatment, these molecular indicators were vastly improved in CFS sufferers, as they had been in AIDS patients after Ampligen treatment, and Suhadolnik and his co-authors noted that they corresponded with "clinical and neuropsychological improvements."

none had been restored to a degree of health that had allowed them to return to their jobs. Even more problematically, among those who were taken off the drug temporarily, for whatever reason, the disease had become significantly worse, suggesting that to derive benefit patients needed to be maintained on Ampligen indefinitely and that withdrawal from the drug could actually exacerbate symptoms. By the third and fourth week off the drug, patient who had been confined to wheelchairs before they entered the trial were returned to their wheelchairs; almost everyone was again housebound.

p. 520 (1991) Few involved in the struggle to bring Ampligen into the marketplace failed to appreciate the larger political issue that had emerged along with the promising results of the clinical trial. One arm of the nation's federal health establishment, the Food and Drug Administration, was being asked to rule on the use of a potent antiviral drug for a disease the Centers for Disease Control and the National Institutes of Health had dismissed for years as a psychiatric condition. The ramifications of the FDA's decision were hardly lost on patient advocacy groups. "If Ampligen is approved for treatment of CFIDS," the CFIDS Association in Charlotte had told its 25,000 members in a special mailing that summer, "this will be a monumental step toward gaining credibility and focusing more attention and research on CFIDS." At the same time, Paul Cheney noted, "The FDA is really in a bind. If the agency approves the treatment IND application, they will, in one swoop, destroy the credibility of two government agencies."

p. 534 (1991) Anthony Komaroff told the reporter, "This isn't a medicine that acts on the psyche. It acts on the body." On the eve of the FDA's response to HEM, Paul Cheney and Dan Peterson, independent of one another, were gloomy about the drug's prospects. "There's not a chance the Food and Drug Administration is going to approve this drug," Peterson said over dinner the night of Carter's presentation. "How can they approve a drug for a disease the NIH says doesn't exist?" Cheney predicted the agency would "probably delay approval pending toxicity issues, but it's just a way to delay. They don't have the guts to kill it, because the patients will kill them. But they don't have the guts to approve it, because Straus will kill them." "To approve Ampligen would be the single most powerful blow for the credibility of this disease," said Marc Iverson, the CFIDS Association's president. "This was not a decision based on science. It was politics." In a newsletter published later that fall, the CFIDS Association's executive director, Kim Kenney, wrote, "We suspect that this is a delay tactic employed by the FDA to prevent the approval of an antiviral drug by one governmental agency for an illness that another, namely the NIH, still considers to be simply depression by another name."

p. 647 (1994) "It's a miracle drug. I know AIDS patients who were being maintained on this drug and died immediately when they took them off. Here was a massive, million-dollar investment with good results," Suhadolnik added in reference to the four-city CFS trial. "Why didn't it meet FDA approval? It's just plain crazy." After a moment he added, "The biggest problem that drug has is that it works."

This page is maintained by Roger Burns of Washington, D.C. E-mail: cfs-news-request@maelstrom.stjohns.edu

* * * *

For 18 years, FDA has been telling us Ampligen is "18 months from approval". At least they’re consistent. But that’s an additional 18 years that patients have continued to suffer while the government plays games.

Dr. Jose Montoya of Stanford has come up with an alternative – an anti-viral that’s already FDA approved, which has produced remarkable results that Dr. Montoya deemed a "cure".

As Dr. Komaroff observed, these are not drugs that work on the psyche – these are drugs that treat the viral infection that patients report triggered their problems, and that many doctors refuse to accept as being connected to the symptoms. This is not depression by another name. This is a disease that was once referred to as "AIDS Lite" because of its many similarities to AIDS, which appeared on the scene just a few years before the Incline Village epidemic.

But, in fact, "AIDS Lite" is – according to experts who treat both – more disabling than AIDS. Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

AIDS got respect only when patients began dying; before that, it was written off to patients simply being depressed because they were gay. When I was diagnosed with CFS, I was given the good news that CFS wouldn’t kill me ... every patient who had died "of CFS" had committed suicide. Now, 20+ years out, we have CFS patients beginning to die of heart failure, cancer, opportunistic infections (which is the same thing that kills most AIDS patients). How many deaths will it take to wake people up that this is a serious disease that requires serious drugs?

Anti-depressants have repeatedly been proven to work only on patients who have concomitant depression. They relieve the depression enough to sort out how much of the symptoms is caused by depression and how much by CFS. In some cases, the depression overlay was what was preventing the patient from working, because the CFS symptoms were comparatively mild.

However, only 60% of CFS patients also have depression. The other 40% show no benefit at all from psychiatric drugs, because their problem is purely physical. Anti-depressants do nothing at all for me, other than making me sicker, and repeated psych evaluations have confirmed that I am not depressed: they have unanimously pointed out that the "symptoms of depression" noted by MDs (most notably fatigue) are also symptoms of the flu – the emotional symptoms (low self-esteem, loss of interest/enjoyment, suicidal ideation, etc.) are entirely missing in my psych profile. I’m still interested in doing the things I love, I just, physically, cannot do them; I start projects but lack the stamina to finish. Those are not typical of depression, where the initiative to start is missing.

I enjoy life as much as possible, but when you’re mostly confined to bed and the few things you do are chores, there’s not a lot of Quality of Life to be enjoyed. For someone who used to love to dance, play baseball and volleyball, go biking, and take long walks, there’s not much Quality of Life to be had in watching bad TV 20 hours a day because you can’t even focus on a magazine article, and watching life pass you by while waiting for someone to do something to make you well. But saying "I hate watching TV" is not the same thing as being depressed.  It means that I still have the initiative (if not the physical ability) to want to dance. 

Tags: ampligen, CFS, Chronic Fatigue Syndrome, AIDS, Quality of Life, virus, depression, New York Times

The Aftermath

Thanks to having a few extra pain pills (and a long soak in FibroSoak www.MtShastaNaturals.com), I felt pretty good when I woke up today.

If I'd had to do this a few years ago, before I started getting appropriate medication, it would've knocked me out of commission for a week -- the 4.5 feet from the bed to the bathroom would've felt like climbing Mt. Everest.  Today, I managed, in the same trip, to the back of the house to feed the cats and fetch my breakfast and to the front of the house for the newspaper (and yesterday's mail, which came in after I collapsed). Then had to lie down for a couple hours.

I'm not going to be able to do much today -- resting, napping, maybe some stitching -- but I will be able to prepare decent meals instead of pulling the emergency box of cereal bars out from under the bed.  With luck I may be able to go out for lunch tomorrow.

Which is a far cry from the last time I lost a fridge (pre-CFS), where after loading up the new one I was able to go to work the rest of the day, attend an evening meeting, walk a couple miles home after that meeting, and got up the next morning to do it all again.  There was no extra rest required because I'd done a little physical labor.

Unlike those who get CFS as children and don't know any other lifestyle except one punctuated with frequent rest periods, I am painfully aware of what I lost -- pre-CFS I often worked 18 hours a day, between my various jobs and business ventures; a few months later, I couldn't even manage 8 hours a day; at times, I spent 20 hours a day sleeping.  Biking a mile caused a collapse (I used to bike 20 miles at a time), walking a few blocks caused a collapse (I used to think nothing of hiking 25 miles), my beloved dancing left me gasping for breath.

After I was finally forced to stop working, I suddenly realized how little I'd been enjoying life for the past 12 years, when every expenditure of energy had to be measured against the risk that I would not be able to make it through the workweek if I did something pleasurable.  Without having to ration my energy so I could survive a week at work, I was actually able to do things on the spur of the moment, like go to a movie or shopping, instead of having to get rested up in advance in hopes that a trip to the store wouldn't cost me a day or two at work.

 

UPDATE:
I got up, did a little something, had to take an hour nap.  Got up, spent a few minutes setting the kitchen to rights, had to take an hour nap....  That's the way it went all day, and it was a much better day than I anticipated. 

For those who think the problem is that I'm just too lazy to do housework, NO.  This is the real problem: I have to stop every few minutes and spend an hour or two resting, which means that there are not enough hours in a day to complete everything that needs to be done.

You prioritize what needs to be done.  For me, Priority One, the thing that gets done even if I'm too sick to do anything else, is "feed the cats".  Priority Two is feed myself.  A lot of days over the past 7 years, I didn't even get to item 2 on the list, much less to such niceties as doing dishes/laundry, because just getting out of bed left me on the verge of passing out. 

At one point when the virus was active and I had a 101 fever nonstop for six months, I went three months without buying groceries because I didn't get that far down the list before running out of energy.  Fortunately, I had fully-stocked cupboards and freezer before then, and equally fortunately, I didn't have much of an appetite because of the fever, though by the end, I was putting together some interesting combinations of the few things I had left. 

Thanks to finally getting the medications I asked for years earlier, a load of laundry no longer takes me a full week start-to-finish.  I can now get it washed, dried, and out of the dryer in two days instead of seven.  And I can finally load the dishwasher in one session, instead of it taking all day, between dizzy spells and naps. 

Which still isn't as good as a healthy person, but at least I'm not falling behind as quickly as I had been when I could manage no more than 30 minutes per week in a house that takes at least 60 minutes a week to clean.  Back then, my best efforts were only half as good as necessary, so every week, half of what should've been done fell by the wayside until it piled up to unmanageable levels.

Wiped out

It took some doing to find a fridge in-stock that fit the small space I have, but I did eventually find someone who had one, and it was $30 off, too.

Because whoever removed the fireplace didn't remove the chimney, the only way to fit even the smallest normal-size stove and fridge into the space next to the chimney was to make the doorway narrower.  After some negotiation and measuring, the guys did agree that making two right-angle turns was easier than going in a straight line and trying to squeeze through a door a hairbreadth wider than the fridge, so it came in the back door, like every other appliance. 

To do that meant rearranging the back porch so they had enough room to make a three-point turn.  Fortunately, (knock wood) this month I haven't been getting light-headed when I bend down, so I could actually pick stuff up.  And discovered how many times over the past 7 years someone was told "put that in the basement" and just tossed it out the back door, hidden behind something else.  Even some of my expensive tools were out there, and rusted because the rain does come in through the screens (duh -- they aren't glass windows to keep the rain out).

This morning, I unloaded the old fridge.  With all the rest periods, it took 2 hours, and then I collapsed on the couch with severe back pain from all the bending and lifting.  Luckily, they were running late, so I had 2 hours to lie down before I had to put everything back in the new fridge. 

My arm muscles were already so weakened from overuse that I could barely lift the shelf to move it to a position that would accommodate a container of milk.  And that was before I started loading the fridge.  :( 

By the time I was done, I had to lie down before I fell down, with pain level through the roof.  Fortunately, I had a couple spare pain pills so I could take some this afternoon.  I was so exhausted that I slept a couple hours, and am still horizontal.

At that, I simply stuck things in the fridge the fastest way possible and figured I'd organize them when I feel better.

Some of the things in the back of the freezer, that I wasn't able to farm out, still had chunks of ice on them when I put them back in!  Mom always said that when she was working for the electric company in the 1950s, they told customers that in the case of a power outage, if they left the door closed, things in the freezer would stay cold for four days.  There's your proof.

Since the ice cream was the first thing to go when the freezer malfunctioned, Brian was nice enough to bring me some choc chip mint on his way home from work, so I had a hot fudge sundae for dinner.  I wasn't up to fixing anything that took more time, and choc chip mint is safer to mix with the pain pills than margaritas! ;)

Any bets on how many days I'll be in bed after this exertion?

 

 

Interesting Websites

Newsweek had a short article about the perils of dating with disabilities -- being dumped as soon as you tell the truth about your health problems, no one even being interested if you mention them upfront.

 

www.Prescription4Love.com is a website for those with a variety of disabilities and health conditions.

 

www.IrritatedBeingSingle.com is for people with IBS and Crohn's.

 

[ADDENDUM: After posting this, Di in PA sent along two more: www.disabledunited.com is a community for people with disabilities & has singles.
www.disabledpassions.com is another dating site for people with disabilities]

 

We give up so much with CFS/fibro, it's not fair that we also have to give up companionship and affection. 

 

When the doctor explained to my husband that he was going to have to pitch in because this was not something that was going to go away, he muttered "I didn't get married to have to cook and clean".  And he was serious: whenever I relapsed, no cleaning got done until I felt well enough to do it, and if I wanted something to eat, I had to cook it myself.  He wanted to be taken care of, not be a caregiver.  He'd grab dinner on the way home and not even consider bringing something home for me.

 

Since kicking him out, I've found that the dating pool is full of men who are looking for someone to cook and clean for them, and they run the other way as soon as I broach the subject of disability.  I'd put an ad on a mainstream dating website and always had lots of responses until my symptoms got worse and I added the vague phrase "health issues".  Not a single nibble since then.  That was the only change to the text of the ad, so I know exactly what made me undesirable: honesty.

 

I'm not alone: statistics show that 3/4 of marriages affected by chronic illness break up.  Another activist remembers seeing a more refined statistic that 90% of wives stay to help, 90% of husbands leave.

 

As a friend and I often joke, there's a rumor in the fibro community that sex is a great pain reliever and sleep promoter.  We'd love to try it.  But no one is willing to date either us long enough for us to get to that stage; at some point before that, they realize that we're not completely healthy and stop calling.  Which is too bad, because if the rumor is true and "take one Tom (or Fred or George) four times daily" really does solve the pain and sleep problems, they'd be incredibly happy men.  I'd think doing a few extra chores would be a small price for them to pay for a benefit like that.

 

As Laura Hillenbrand's devoted long-time boyfriend observed, she's still Laura.  Most of any relationship is just "hanging out", and she can still talk, snuggle, watch videos, etc.  Yet the men I meet are more focused on the fact that I cannot hike, I cannot ski, I cannot jog, than on the fact that I can still go to concerts, watch movies, and other sedentary pleasures.  I still bake the best truffle brownies around, I'm still a gourmet cook, but they don't like my suggestion that they go hiking with their guy friends and I'll have dinner waiting when they get home -- they want a woman who'll go hiking with them.  I've even gotten that excuse from a guy who, when pinned down, admitted that he hadn't hiked in the past five years!

 

It's time someone recognized that the disabled are not eunuchs.  Having someone to love can provide a much-needed psychological boost (it's been proven that even in conditions with a biological basis, mood does have some effect on symptom severity). 

Grrrrrrrrrrrrrrrr

Got up this morning and there was brown liquid on top of the fridge door.  Sure enough, I opened the freezer, and stuff in there was melting.

Just when I was starting to feel well enough to tackle some of the chores that have been waiting, they get put on hold again so that I can empty out the freezer, take stuff to a friend's house, put the rest on ice, and go out looking for another fridge that will fit the small space available (any larger than the existing one and it blocks the doorway, but that's the only place to put it).  And then collapse for a week because the physical exertion is too much for me, while laundry and dishes pile up because I can't get out of bed for more than a minute or two without passing out.

And, of course, this has to happen when the person who usually drives me is not available, so I'm going to have to take the bus to look for this mythical small-outside/large-inside fridge. 

NY Times on CFS

Excerpts from two NY Times articles about CFS...

http://www.nytimes.com/2007/07/17/science/17fatigue.html?th&emc=th

Chronic Fatigue No Longer Seen as ‘Yuppie Flu’

By DAVID TULLER             Published July 17, 2007

For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness "yuppie flu" and "shirker syndrome." But the syndrome is now finally gaining some official respect.

Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions.

"There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology," said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.

"You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name," said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.

http://www.nytimes.com/2005/03/29/health/29tire.html?ex=1184817600&en=31d19bf62cf25955&ei=5070

For Chronic Fatigue, Placebos Fail the Test

By NICHOLAS BAKALAR          Published: March 29, 2005

Many doctors believe that sugar pills are likely to be effective for patients with chronic fatigue syndrome, trusting that a placebo will help relieve the mental and physical exhaustion that characterize the illness.

But a new study has found that people who have the syndrome respond at a lower rate to placebos than patients with other diseases. The paper was published in the March-April issue of Psychosomatic Medicine.

Studies suggest that placebos relieve the symptoms for about 30 percent of patients suffering from a wide variety of illnesses. Migraine headaches, for example,respond at a rate of about 29 percent to placebo treatment, major depression at about 30 percent and reflux esophagitis at about 26 percent. ... among people with chronic fatigue syndrome, only 19.6 percent responded to placebos.

But Dr. Brian Fallon, an associate professor of psychiatry at Columbia University, offers a different interpretation. The fact that chronic fatigue syndrome responds so poorly to placebo treatment, he said, provides evidence that the syndrome has a physiological basis, though one that is still poorly understood.

"The finding by Dr. Cho and colleagues will come as no surprise to patients with C.F.S. who experience debilitating fatigue despite numerous treatment interventions," Dr. Fallon said. "That the placebo response in C.F.S. was far lower that in primary psychiatric disorders such as depression highlights the distinct nature of C.F.S. and how little we know."

* * *

This has always been the problem – doctors who believe that CFS and fibromyalgia are "all in your head" and therefore can be fixed with some counseling, a placebo, an anti-depressant or a kick in the pants. And when that doesn’t cure you, you’re scolded for not cooperating or "not wanting to go back to work", rather than the doctor considering that you need serious treatment to get well from a serious disease.

The only two treatments that have shown promise in improving CFS are both anti-virals ... hardly evidence that patients are imagining their symptoms!

Tags: Chronic Fatigue Syndrome, CFS, New York Times, placebo, physiological, psychological

DOCTOR, IT HURTS WHEN I DO THIS!

According to the old Borscht Belt joke, the response should be "so don’t do that."

But too often with CFS patients, that simplistic solution to the problem is overlooked, in favor of telling the patient to do more until it doesn’t hurt. The theory is, the patient is just making excuses not to do things, or is simply out of shape and needs to get back into condition. Once you’re tagged with the CFS diagnosis, it just doesn’t cross the doctor’s mind that you might be a Type A personality who needs permission to "don’t do that" because you’re going to push your limits every day, even if pushing yourself makes the symptoms worse.

According to the 2006 Nisenbaum study, only 1.6% of non-CFS patients report "post-exertional fatigue", which is a hallmark symptom of CFS. In plain English, it means you feel worse when you exert yourself. For some of the most severe patients, it’ll kick in after walking just a few feet. One-third of people with idiopathic "chronic fatigue" reported feeling worse after exercise; that jumped to three-quarters in people who met the diagnostic criteria for ME/CFS. Even sedentary morbidly obese people didn’t approach that proportion, which shoots to heck the notion that CFS patients are tired because they’re sedentary or because they’re carrying a few extra pounds. (While I weigh more than I did before I got sick, I have a long long way to go – most of a hundred pounds more – before I qualify as morbidly obese. This theory doesn’t explain why I was tired at my perfectly acceptable normal weight, while walking 4-5 miles a day, though doctors have come up with creative explanations to justify their belief that they’re right and I’m wrong about my prior weight and activity level.)

Another activist reports "I began an exercise program and have tried to do so several times since then. Each time my response to it has been bizarre. The symptom exacerbation has been immense, not just at the beginning of the exercise program but throughout. Over time I was able to increase my strength and duration. In fact I usually felt good while I was exercising – but the aftermath was always devastating." That response is only "bizarre" to doctors who don’t know that that is *exactly* what should happen to a CFS patient. It’s how you differentiate between CFS (where exercise makes the patient sicker) and depression (where exercise energizes the patient). Doesn’t even require insurance pre-approval of an expensive test, though it does require that you believe the patient’s report on the outcome.

As has been noted by a number of CFS experts, ALL symptoms are "self-reported", so the assertion that CFS is fakery because the symptoms of fatigue, cognitive/memory lapses, reaction to exercise, etc. are self-reported is simply unbelievers grasping at straws to find support for their beliefs. When’s the last time your doctor followed you into the ladies’ room so he could see with his own eyes that you’re telling the truth about having diarrhea? Probably never. Or crawled in bed with you for a couple nights to see for himself that you need sleeping pills for insomnia before he would prescribe them? Yet, I’ve had several doctors over the years tell me that I’m not vomiting every morning because I didn’t do it on their shoes, I can’t be having diarrhea as often as I claim because I didn’t do it in front of them, and I’m mistaken if I say that I was awake all night every night for days because "sometimes, we think we are awake when we are actually asleep". Why? Because those are objective symptoms that, if true, would prove I’m really sick, so they have to find some rationale for ignoring them, and the easiest way is to tell the patient you don’t believe her, she’s either exaggerating or imagining things.

www.name-us.org has a series of definitions on their website, definitions that all emphasize malfunctions in neurological, immunological, cardiovascular and other body systems, causing a long list of disabling symptoms (only one on that symptom list being fatigue). Those neurological symptoms are essentially unknown to those outside the CFS community – both doctors and laypeople – because of the misplaced emphasis on "fatigue". For years, CDC denied those symptoms existed, and they still say that the tests that would objectively document those symptoms are "unnecessary". The instant that those tests are done, they would prove incontrovertibly that the patient is not depressed or hypochondriac,

Dr. Daniel Peterson observes "Fact: CFS differs from depression in onset, incidence, major symptoms, attribution and 5 immune variables: there is very little overlap between depression and CFS." Even the fatigue which is a symptom in both differs in quality and quantity – someone who’s depressed could spend the day walking around Disneyland withoutneeding a month to recover. Or, as one CFS patient described it to me, a person who’s depressed would get up and run out of the house in case of fire; she has to hope that the firemen find her, because she could not even get out of bed under her own power before the house was fully engulfed. I believe her, because I’ve had the same experience – if I’ve done a lot of bending the day before (e.g., unloading the dishwasher or clothes dryer), my abdominal muscles will not pull me to a sitting position ... I have to use the blanket as a rope to pull myself up. If it happens in summer when I’m sleeping without a blanket, I’m in big trouble!

In CFS Medicine & Science in Sports & Exercise: Volume 39(5) Supplement, May 2007, p S445, it’s noted that "Symptom exacerbation following physical stress has been documented in illnesses such as multiple sclerosis (MS), lupus and rheumatoid arthritis (RA). Similar phenomenology has been reported in CFS." If it’s been documented in MS, SLE, and RA, then why do the doctors call it "bizarre" and "complaints not credible" when it happens in CFS? It’s not like this is a symptom never seen before. They have to deny this problem, which is documented as real in other more acceptable diseases, in order to continue denying the existence of CFS.

I actually got one of my doctors to admit that there is another disease where it’s detrimental for the patient to exercise; he immediately made clear "but you don’t have that." Never said I did. All I was going for was a statement that what I was describing was not beyond the realm of possibility, not totally unheard of. He had no explanation for why my report of being made worse by exercise was "impossible" even though he knew it was typical for patients with another disease. The explanation was clear to me: this known adverse reaction was only impossible for him to fathom in CFS; it was a perfectly logical symptom in a "real disease". (And, in fact, doctors are constantly lecturing that you shouldn’t exercise while you have the flu, but the same flu-like symptoms in CFS are not supposed to be used as an excuse to stay in bed, rest, and drink plenty of fluids.) It seems doctors’ logic goes out the window as soon as the phrase "CFS" is uttered.

"Within 24 hours of the exercise challenge, 85% of controls indicated full recovery in contrast to 0% of CFS patients. The remaining 15% of controls recovered within 48 hours of the test as opposed to only one CFS patient. Clear differences in number and type of reported symptoms were also found between groups."

The American College of Sports Medicine concludes "The results of this study indicate that CFS patients suffer symptom exacerbation following physical stress. As with MS, lupus and RA, post-exertional symptom exacerbation appears to be both a real and incapacitating feature of the syndrome. The delayed recovery response evoked by a single bout of exercise stress is distinctly different from that of sedentary controls. The debilitating effects experienced by these patients help to explain activity avoidance, which should be considered when prescribing exercise and activity management programs for CFS patients."

In other words, ACSM’s recommendation is that when a CFS patient says "it hurts when I do this", the doctor’s response should be "then don’t do that".

Tags: MS, lupus, RA, CFS, CFS/ME, ME/CFS, symptom, exacerbation, exercise

Photo Exhibit in Boston

Source: CNHI News Service
Date:   July 13, 2007
Author: Julie Kirkwood
URL:    http://www.eagletribune.com/pulife/local_story_194093857?keyword=topstory


Fighting fatigue: Local woman, art show work to battle stigma of chronic
fatigue syndrome
------------------------------------------------------------------------

Jean Harrison knows that some of her former colleagues in the art world
think she was a prima donna, or worse, that she was lazy.

Toward the end of her career restoring paintings, she was working at the
Peabody Essex Museum in Salem, Mass., and had days when she couldn't get
herself out of bed before 1 p.m. She often worked at the museum alone
until 11 p.m. or later eating Cheez-It crackers and drinking Diet Coke.
Her work sometimes wasn't finished until the very last minute. Some days,
she slept 16 or 18 hours.

Thinking it might be depression, she saw a doctor. She took kung fu
classes, hoping exercise would help. She even got tested for attention
deficit disorder. "I was eager to find anything that would treat this,"
Harrison said. "I knew there was something wrong." Nothing worked. She got
worse. "I went to the museum one day and said I thought I would probably
be out of work for a while," Harrison said. "I was crawling on the floor -
crawling, literally - to get to the bathroom... I was probably asleep
almost 20 hours a day, easily."

That was in 1994. Harrison, 54, now knows she has chronic fatigue
syndrome, a disease that affects an estimated 1 million Americans, the
majority of whom have never been diagnosed.

It is a disease that many people assume is all in the patient's head, even
though numerous research articles have been published showing otherwise,
said Kim McCleary, president and chief executive officer of a patient
advocacy group called The Chronic Fatigue and Immune Dysfunction Syndrome
Association of America.

That's why The CFIDS Association has put together a photo exhibit, funded
by the federal Centers for Disease Control and Prevention, of people who
have chronic fatigue syndrome. It opens at the Boston Public Library on
Monday, July 16. "We chose people who might, as a group, represent people
you'd see in the mall or the library, people who would remind you of all
the people in your life that could have this," McCleary said.

The purpose is to help the roughly 80 percent of patients who don't know
they have the disease to learn about chronic fatigue syndrome and feel
comfortable seeking help, she said. "This is real and it has a devastating
effect on people's lives," McCleary said. "But there's hope out there.
There's courage and dignity, even though there is still some stigma."

Harrison believes her chronic fatigue symptoms started when she was only 6
years old, and have reoccurred periodically throughout her life. She was
lethargic through most of her childhood, but she got good grades and
breezed through Wellesley College, she said, earning an art history
degree. Then she had a bad episode several years later when she was in
England learning art restoration. She felt ill and her glands were so
swollen, she said her doctor thought she had lymphoma. This was in the
1980s, a few years before the phrase "chronic fatigue syndrome" was coined
and made a big splash in the American media.

What brought it to the public's attention were two cluster outbreaks of
the symptoms, McCleary said, and the scientists looking for the cause
quickly discovered other patients who weren't associated with the
clusters. The stigma followed close behind, as patients - often Caucasian,
upper-middle-class women who could afford to push for answers - went to
their doctors complaining of symptoms that couldn't be confirmed by any
laboratory test.

"The term 'yuppie flu' came into use," McCleary said. "That was a real
misnomer but it stuck. Then it sort of developed into this perception that
these were just whiny, white women - type A personalities - who said 'I
want it all,' then decided they didn't want it all anymore and this was
their way out... Medical providers just sort of wrote these people off
as having a character weakness or something. It really did create a
barrier to medical care."

Harrison was fortunate enough to find a doctor who took her condition
seriously and supported her, even when she wanted to try an experimental
new treatment. Harrison had read studies showing that some chronic fatigue
syndrome patients have low blood volume, so she went to Salem (Mass.)
Hospital to get tested. Sure enough, her blood volume was low.

Her doctor supported her decision to try something experimental: regular
infusions of saline solution directly into her bloodstream. Initially the
infusions were given through her arms, but she now has a Port-A-Cath
surgically implanted in her chest. She gives herself infusions several
times a week.

Though the infusions made her feel much better, she said chronic fatigue
is still something she fights every day. In some ways it's harder now, she
said, because she looks healthy. "I'm not missing an arm," Harrison said.
"I'm not missing a leg. I look fine."

As a result, people don't understand why she avoids even the lightest
physical exertion, which she has learned through experience will make her
exhausted for days.

Even her own family looks at her with skepticism when she suddenly has to
lie on the floor because her blood pressure has dropped, even though
"orthostatic instability" (instability when standing) is a well-documented
side effect of chronic fatigue syndrome.

When Harrison stands up, her blood pressure drops, her pulse races, she
feels dizzy and her brain goes haywire. If she stands up in the middle of
a telephone conversation, she said, she loses her train of thought. "I'm
not stupid," she said. "It's just there's something neurologically wrong."

Harrison said she hesitated about telling her story because some people
still don't take the disease seriously. She said she knows other people
living North of Boston who have chronic fatigue syndrome but don't tell
anybody because they don't want to lose credibility. Instead, she said,
they say they have a back problem, or make up some other excuse to lie
down.

What made her decide to tell her story is the same thing that McCleary
believes motivated patients to have their portrait taken for the chronic
fatigue photo exhibit.

"It's so important that the message get out, how devastating this can be,"
Harrison said.


If you go

* What: "The Faces of Chronic Fatigue Syndrome" photo exhibit, part of a
  $6 million public awareness campaign funded by the U.S. Centers for
  Disease Control and Prevention
* Where: Boston Public Library, 700 Boylston St., Boston
* When: Monday, July 16, through Monday, July 23
* How: Admission is free. For more, call 800-442-3437 or check out
  http://www.cfids.org.

--------
(c) 2007 Community Newspaper Holdings, Inc.

Tags: Boston, photo, exhibit, free, CFS, CDC, CFIDS, library

ME/CFS/Fatigue, Round Two

One of the original Incline Village patients wrote: We didn't know that doctors would so completely fixate upon "fatigue" that they would become entirely blinded and oblivious to the neurocognitive complaints and neurological inflammation.

Angela Kennedy, founder of One Click Group responded:

Yes, I think this is a key issue. And I think the words fixated on fatigue and oblivious to the neurology APTLY describes many doctors approach to ME/CFS/LYME etc patients. How indeed were patients to know this would happen?

Excerpts from Angela’s personal site http://health.groups.yahoo.com/group/APK-PAPERS:

"5. Fatigue as a trivialising term

... `fatigue' (which might mean tiredness, drowsiness, exhaustion, disturbed level of consciousness, weakness, paralysis, or feelings of malaise, depending on how certain illnesses are experienced or linguistically constructed by individuals) is present in MOST organic illnesses, acute and chronic.

Proponents of the psychiatric paradigm, in their literature, tend to associate `fatigue' with a psychological state, ignoring the physiological reasons that may contribute to the bodily symptoms in ME/CFS ... This logistical flaw results in only the most limited investigation being encouraged for ME/CFS patients, and NOT in areas that might yield definitive results, such as certain brain scans (as discussed and referenced in Hyde et al, 1992, Marshall et al, 2001, Carruthers et al, 2003).

Particularly relevant to ME/CFS sufferers also is the problem also identified by Hyde (1992: 11-12): `……taking the fatigue as the flagship symptom of a disease not only bestows the disease with a certain Rip Van Winkle humour, but removes the urgency of the fact that most ME/CFS symptoms are in effect CNS symptoms.'

This incorrect practice of using the terms `chronic fatigue' and `chronic fatigue syndrome' interchangeably and confusingly has a direct relationship to the research design flaws delineated in point 4 of this document, and the actions described in point 1."

* * *

Patients did not know that this would happen, but in writing "Osler’s Web", Hillary Johnson made a FOIA request for government documents, and found the smoking gun government memos in which it was discussed that calling this Encephalomyelitis-type virus "Chronic Fatigue Syndrome" would make it easier to portray patients as lazy/crazy and thus limit access to disability benefits.

And, sure enough, the medical community which shortens "Asperger’s Syndrome" to "Asperger’s" did the same thing with CFS, dropping the word which is of such importance to differentiation and began referring to "chronic fatigue syndrome" as "chronic fatigue", which opened the door to the psychiatric proponents using the two interchangeably and blurring the lines between post-viral CFS and psychiatric problems and just generalized fatigue from overwork/undersleep. Exactly as those who bestowed the new name intended to occur.

CDC did update their website last year to indicate that there’s a physical component to CFS, but, one step forward, two steps back, states that the tests that we know to provide objective proof of the biological illness ME/CFS are unnecessary. Without objective evidence, it’s difficult to win a case for disability benefits, so if your doctor is taking all his guidance from the CDC’s website, the government’s own misinformation from one agency is saving money for another agency, just as planned in 1988 when the name was coined.

And without objective evidence that you have neurological CFS versus psychosomatic fatigue, it allows the psychiatric community to continue lining their pockets both with research dollars that allow them to "prove" that CFS is depression or stress or unwillingness to work, and, in the UK, with NHS funds for ongoing CBT treatment, even though it’s obvious to anyone with half a brain that talk therapy cannot cure a virus. CFS patients who don’t improve simply from talking about their symptoms are branded "uncooperative" and ordered to continue CBT if they want to continue their government benefits; no effort is made to determine if a different therapy (such as anti-viral medication) would be more effective.

Tags: ME/CFS, CFS/ME, CFS, fatigue, psychiatric, FOIA

CFS, ME and Fatigue

There has recently been some discussion in the CFS/ME community about whether CFS and ME are different diseases, and assertion by some patient/activists that there's no fatigue in ME.  In the US, it is essentially impossible to get an ME diagnosis because CDC initially defined CFS with the symptoms of ME.  Over the years, various people with ulterior motives have re-defined CFS to include "chronic fatigue" from any source: overwork, undersleep, psychological causes. 

However, the Gold Standard for CFS must be the symptoms of the Incline Village patients, the epidemic that caused the CFS diagnosis to be created -- symptoms that match ME.

For myself, if I'm getting a decent amount of sleep and *not* trying to do anything, I don't feel fatigued.  These days, I generally wake up feeling like I remember Normal.  But as soon as I try to do some housework or run errands, the fatigue comes back -- pardon me, "post exertional malaise" and "exercise intolerance" to use the correct terms. 

Prominent activist Cort Johnson takes on the dispute:

CFS, ME and Fatigue
  
  By Cort Johnson (phoenixcfs@gmail.com)
  
  The Fatigue in Chronic Fatigue Syndrome: CFS patients have never been
happy about the word 'fatigue' in CFS and they well recognize the dangers of
focusing too much on it; they have dealt with them for almost 20 years in
the US. Fatigue is certainly present in enormous amounts in most CFS
patients but it's the post exertional malaise - the inability to engage in
activity without increased symptoms- that's the core symptom for many CFS
patients. While CFS patients and advocates have come to rue the prominence
fatigue has come to play in the perception of their disease no efforts have
been made to completely dissociate themselves from it.
  
  The Fatigue in ME: Some ME advocates on the other hand flatly deny fatigue
is present at all in ME. One prominent website flatly states "Myalgic
encephalomyelitis has nothing to do with fatigue" and that "If you are tired
all the time you do not have ME'. This website also claims that fatigue was
not associated with ME until 1988 when 'CFS' came along.
  
  An Flawed Definition? Indeed, fatigue plays only a negative role in the
latest (2007) ME definition put forth by Dr. Hyde. Besides the elucidation
of a 'disease process' in ME the presence of fatigue in CFS appears to be a
major differentiating factor between the two diseases. CFS  Except for
fatigue the symptoms of ME are startlingly similar to those of CFS. They
include pain, cognitive deficits, sleep problems, muscle pain, loss of
muscle strength after exercise (post-exertional malaise) and vascular
problems (problems standing, abdominal problems). One could easily be
forgiven for assuming, based on that list, that Dr. Hyde was referring to
CFS not ME.  
  
  But he's clearly not for not long afterwards he bluntly states 'ME is not
CFS' . Why? Because "fatigue was never a major diagnostic criteria of ME".
Dr. Hyde reports that 'fatigue, loss of stamina, failure to recover quickly
occur.in most if not all  progressive terminal disease and in a very large
number of chronic non-progressive or slowly progressive diseases'. "Fatigue
and loss of stamina.cannot be seriously measured.and do not assist us with
the  diagnosis of ME or CFS or for that matter any disease process"
  
  According to the ME definition the ME patient is in pain, has cognitive
problems, often has problems standing but does not suffer from substantial
fatigue or if they do, it is of little consequence to the physician or
researcher. Loss of muscle strength after exercise probably refers to
weakness not fatigue. Dr Chaudhury and Behan carefully distinguished between
weakness and the fatigue when they described the features of 'central
fatigue' a problem they they believe is a central feature of CFS. If ME
patients are weak rather than fatigued they can be thankful; weakness itself
is not uncomfortable, fatigue on the other has a high misery index.
  
  A Historical Perspective: Are ME patients weak or fatigued or both? An
examination of the early (and virtually only) studies on ME indicates that
far from being a throw away symptom fatigue is often mentioned by the early
ME researchers. In 1959 Dr. Acheson, in a large overview of these studies,
summarized what was known about ME.
  
  Dr Acheson noted, as Dr. Hyde does, that the severe headaches, muscle
pains (and paralysis!?) are often seen early in the disease. In fact fatigue
is not always mentioned although several analogues to it (lassisitude,
lethary) often are.  Dr. Acheson notes, as does Dr. Hyde that the severe
headaches and muscle pain in ME tend to diminish over time. What Dr. Hyde
does not report, however, is that follow up studies invariably mention that
severe fatigue is a debilitating part of the disorder.
  
  In the Coventry outbreak the authors reported that 'extreme fatigue. made
the rehabilitation period extremely tedious and long'. Dr. Acheson reported
that the 'majority of patients afflicted in the outbreaks.have returned to
work after a period of convalescence prolonged by fatigue, aches and pains,
depression and lack of concentration". Seven to ten months after the
Akureyri outbreak 'nervousness, fatigue and persistent muscle pains were
common.  Six years later those still afflicted complained of 'nervousness
and tiredness' and less commonly muscle pain and loss of memory.
  
   Five months after the Punta Gorda outbreak the still ill patients most
commonly complained of 'nervous tensions, fatigue and depression.' Two years
afterwards Deischer reported the most common problems were 'tiring easily'
followed by pain and stiffness. In Dr. Ramsey's and Dorsett's 1977 letter to
the British Medical Journal on ME they stated that the most characteristic
presentation is profound fatigue.increasing in severity with exercise.
(Interestingly these five doctors do not mention headache). A letter to the
BMJ on epidemic myalgic encephalomyelitis on June 3rd ,1978 states 'One
characteristic feature of the disease is exhaustion, any effort producing
generalized fatigue". In Dr. Acheson's summary he states that 'in some
instances a characteristic syndrome of chronic ill health has developed with
cyclical redrudescences of pain, fatigue, weakness and depression."
  
  In the more modern era the first symptom that Dr. Ryll, a U.S. physician
who has conducted the longest continual study of ME patients on record
(1975-1994), listed was severe exhaustion. He noted that the 'exhaustion
that occurs in this disease is profound and unusual". (Although championed
by ME advocates for many years Dr. Ryll believe ME, CFS, fibromyalgia and
gulf war syndrome are essentially the same disorder). ME advocates often
claim the Incline Village outbreak of 1983-85 to be ME yet Drs. Cheney,
Komaroff, Peterson, Buchwald, etc. required that patients experience
'chronic debilitating fatigue' for at least 3 months in  order to
participate in the study.
  
  Thus long before some ME advocates sought to distance themselves from the
fatigue in 'CFS' ME physicians and researchers were consistently reporting
that fatigue was a significant problem at least in the chronic stage of the
disease.  This, of  course, is the stage the great proportion of CFS/ME
patients are in.
  
  An Unusual and Medically Significant Degree of Fatigue in CFS - While
fatigue is difficult to measure it is incorrect that to state that its
presence does not assist physicians in the diagnosis of any disease process.
Even the International (CDC) Definition takes pains to emphasize the unusual
severity of the fatigue seen in CFS calling it 'severe disabling fatigue' and
stating  that "in  our conception of the chronic fatigue syndrome, the
symptom of fatigue refers to severe mental and physical exhaustion, which
differs from somnolence or lack of motivation". Studies indicate high
disability rates and extremely low quality of life rankings. CFS - as most
ME advocates well know - is not mere fatigue.
  
  A Significant Clinical Feature - Fatigue occurs in many diseases but few
diseases display the kind (both physical and mental) or the level of fatigue
or exhaustion found in CFS. Far from being a throw away symptom severe and
incapacitating fatigue is unusual enough to draw the attention of increasing
numbers of researchers. Dr. Friedman reported significant increases in the
number of studies focused on fatigue had occurred in the last five years at
the 2007 IACFS Conference. Diseases and disorders such as multiple
sclerosis, cholestatic liver disease, post-cancer disorder and fibromyalgia
are characterized by fatigue severe enough to be the subject of study. All
can be initiated by an infectious event and research suggests immune/central
nervous system dysfunction play an important role in each. Interestingly
study findings in all these diseases are generally coherent with those found
in CFS and therefore, since ME findings borrow extensively from CFS research
studies, on ME as well. 
  
  No one likes the word 'fatigue' - as noted earlier it obscures the
post-exertional problems that are characteristic of CFS/ME and CFS and both
ME and CFS advocates would do well, I believe, to continue to highlight that
difference. To ignore that fatigue is present in ME, however, is to turn
ones back on the fifty years of ME research and much interesting research
today into the cause of severe fatigue. ME advocates attempts to distance
themselves from the crude stamp of fatigue are easily understood but turning
their backs on an important part of their own disease is unwise and using
fatigue as a hammer to divide CFS patients in the US from ME patients
elsewhere is not only incorrect but is surely unproductive at a time when
ME/CFS or if you like ME and CFS face so many obstacles.
  
  ________________________________
  Buchwald, D., Cheney, P., Peterson, D., Henry, B., Wormsley, S., Geiger,
A., Ablashi, etc. 1992. A chronic illness characterized by fatigue,
neurologic and immunologic disorders, and active Human Herpesvirus Type 6
Infection. Annals of Internal Medicine 1116: 103-13.
  Chaudhuri, A. and P. Behan. 2000a. Fatigue and basal ganglia. Journal of
Neurological Sciences 179: 34-42.
  Chaudhuri, A. and P. Behan. 2000b. Neurological dysfunction in Chronic
Fatigue Syndrome. Journal of Chronic Fatigue Syndrome 6, 51-68.
  Chaudhuri, A. and P. Behan. 2004b. Fatigue in neurological disorders.
Lancet 363: 978-988.
  Epidemic myalgic encephalomyelitis. 1978.  British Medical Journal 3, June
1978, 1436.
  
  Ramsey, A., Dowsett, E., Dadswell, J., Lyle, W., Parish, J. 1977.
Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease.
British Medical Journal 298, 1350.
  
  Ryll, E. 1994. Infectious venulitis, chronic fatigue syndrome and myalgic
encephalomyelitis. 
  

Tags: CFS, fatigue, myalgic encephalomyelitis, exercise, intolerance, exertion, symptoms

CFS in Simple Terms

http://www.immunesupport.com/library/showarticle.cfm?id=8116

(Dr. Klimas is Professor of Medicine, Psychology, Microbiology, and Immunology, and director of the Allergy and Immunology Clinic at Leonard M. Miller School of Medicine)

Sick and Tired

By Jeanne Antol Krull

(excerpts)

In 1984 a woman suffering from severe fatigue, body aches, and difficulty concentrating walked into the office of clinical immunologist Nancy Klimas, MD, with a medical file several inches thick -- the result of visits to more than a dozen doctors. One piece of treatment advice she was given: "Change your hair color and get a manicure. You'll feel better." But the patient knew better, telling Klimas simply, "I think there''s something wrong with my immune system." Klimas sent the patient''s blood sample to colleague Mary Ann Fletcher, Ph.D., professor of medicine, microbiology/immunology, and psychology, and asked her to "look at this any way you know how." Fletcher's lab was already doing groundbreaking work on the role of the body's natural killer cells, which kill tumor cells or any pathogens in the blood. Mary Ann reports back, ''There is something very odd about her blood work. She has less natural killer cell function than we see in end-stage AIDS patients, and her immune activation markers are very high," Klimas recalls. "I called the patient and told her, ''I can't tell you what's wrong, but your labs are very abnormal.'' She burst into tears, she was so happy to hear something was wrong with her."

[CFS] is characterized by profound fatigue that is not improved by bed rest and may be worsened by physical or even mental activity. No matter what the name or how debilitating the symptoms, those who suffered from it -- mainly women -- were called everything from hypochondriacs to just plain crackpots.

Klimas said "After treating more than 2,000 chronic fatigue syndrome patients over more than 20 years, I''ve seen patients who were angry and frustrated at trying to convince their physicians and loved ones that this is a real illness. They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy"

"A recent prospective study found the one single predictor of who is going to stay sick after a viral infection is the severity of the initial viral infection," says Klimas.

When it comes to treating patients, Klimas says you don't have to be a chronic fatigue expert -- it comes down to basic clinical principles. Patients tend to have three main problems in addition to fatigue: sleep disruption, autonomic dysfunction (delayed drops in blood pressure after standing), and pain."In particular, the patient takes a big step forward the day you get their sleep better. Sleep is a huge part of helping patients feel better right from the beginning."

Even though discovery of a cause is still elusive after more than two decades of searching, scientists have zeroed in on several key areas: infectious agents such as viruses, problems with hormone regulation in the body's endocrine system, disturbances in the autonomic regulation of blood pressure and pulse, and immunologic dysfunction.

As director of AIDS research at the Miami Veterans Affairs Medical Center, Klimas was already working with an existing team of UM and VA researchers on HIV, and she tapped into their expertise for this new battle. "We were this big, diverse, multidisciplinary team in HIV, and I said, ''Why can't we do the same thing in chronic fatigue?'' "In looking at what generally happens to someone with this disease, it's easy to see how everything can go haywire. ... Whatever has stirred up your immune system in the first place can end up disturbing your sleep. When you don't sleep properly, never going into stage three and stage four sleep, your body doesn't release the nighttime hormones such as cortisol. A stress hormone, cortisol is a big part of why we quiet our immune system. It peaks in the morning when we wake up and resets the immune system for the day." When that doesn't happen, the immune system that was activated yesterday gets even more activated today and the next day, and it starts releasing far too many cytokines, which are molecules that can make you ache all over and disrupt stage four sleep. These molecules can also cause adverse effects in the brain, leading to cognitive and memory problems. "What you end up with is this vicious cycle of fairly subtle dysregulation between the body's hormone system, the autonomic nervous system, and the immune system," Klimassays.

"Initially it was quite difficult to get funding," remembers Fletcher. "This was seen as a hysterical condition that middle-aged women might come down with." Fletcher recently received a new National Institutes of Health (NIH) grant to study the role of specific peptides neuropeptide Y (NPY) and dipeptidyl-peptidase (CD26) in the development of chronic fatigue. These molecules are important in the regulation of many physiological and disease processes in the immune, nervous, and endocrine systems.

* * *

Unfortunately "change your hair color and get a manicure", "tell your husband you want to quit your job", "get married", "take a vacation" are all standard prescriptions for women with CFS/fibro.  I'd laugh if it weren't so revolting that in the post-feminist era we're still dealing with doctors who treat women that demeaning way.

 

You'll note that it was 1984 when Dr. Klimas and Fletcher  found the totally whacked-out immune system in a CFS patient, as bad as AIDS.  This was before CDC came up with the disparaging name.  It's now 23 years that it's been known that there's severe immune system involvement, and it still hasn't filtered down from the CFS experts to the rest of the medical community (or the general populace).  I still get comments that the only thing wrong with me is that I'm lazy.

 

My first CFS specialist told me the key was improving the quality of sleep, so the body could begin to heal itself.  As simple (and logical) as this solution is, there are still doctors who can't process the notion two decades later.  One told me that he wasn't going to give me a sleeping pill because I was "already sleeping too much" and he didn't want to add to that; the notion that quality of sleep was the issue simply didn't compute.  If you're spending 20 hours in bed to get the equivalent of 2 hours sleep, then improving the quality of the sleep (deep sleep instead of the half-asleep stage all night) should reduce the number of hours spent in bed.

 

The gastroenterologist told me he didn't know much about CFS/fibro, but suspected that good sleep would reduce my digestive symptoms.  Sure enough, when I bought the Sleep Number bed and started sleeping more, my gastrointestinal problems went from a daily thing down to a couple times a week.  Not cured, but a lot easier to deal with than spending your whole life in the bathroom.

 

This "simple explanation" by Dr. Klimas needs to be publicized anywhere and everywhere so that both doctors and laypeople understand that it's not hyperbole when patients say we're as sick as AIDS patients, and it's not being a difficult patient when we say anti-depressants and psychotherapy don't help.  What we need is an immunotherapy like the AIDS cocktail.

 

 

Tags: endocrine, dysregulation, immune, peptide, CFS, research, AIDS, chemotherapy

Mistakes doctors make with women

The current issue of Health magazine features an article "The 4 biggest mistakes doctors make (with women)" quoting liberally from Dr. Groopman, author of "How Doctors Think".

The mistakes are:

1. The doc stereotypes you

2. The doc assumes you’ve got that "bug" that’s going around

3. The doc wants to get you in and out fast

4. Your doc dislikes you – or likes you too much

"While the details may differ, the bottom line is all too common ... and up to half of those misdiagnoses have serious consequences."

Unfortunately, many male doctors stereotype women as high-strung, hypochondriac, depressed ... often without knowing the first thing about the woman or her personality.

A friend (a successful business owner) and I both found ourselves stereotyped by the same doctor as divorcees who wanted a doctor’s complicity in getting lifelong alimony. The doctor never asked either of us the questions that would have revealed that both of us were the primary breadwinner throughout the marriage, or that neither husband was in a financial position to pay enough alimony to pay all our bills, or that we had signed papers permanently waiving alimony and it was too late to change that decision.

We were middle-aged divorcees, so "obviously" our husbands had dumped us for 20-something trophy wives, and "obviously" we were depressed/lonely/unloved and "obviously" out to punish them for making us go back to work for minimum wage after promising we could be housewives. Unfortunately, the only part of that assumption that is true is "middle-aged divorcees". (I don’t know about hers, but my husband ended up with a dumpy woman about my age; hardly a trophy I couldn’t compete with!)

Those questions were never asked, because the doctor stereotyped all divorcees into a single mold. Perhaps his mother was a depressed divorcee who resented being pushed out into the work force again, perhaps his sister cried all the time and couldn’t get a date after her divorce, perhaps he himself was paying huge alimony after running off with a younger woman; whatever the basis, somewhere he got the idea that all divorcees are alike and ignored everything my friend and I said that contradicted his preconceived notion of a woman who’d always been financially dependent on a man and wanted to stay that way.

Fortunately, as the business owner, my friend was able to dictate her own work hours to keep them to a level that didn’t aggravate her injury. She is now healed and back to work because she had flexibility that most employees don’t have and didn’t need a doctor’s note to change her schedule.

One doctor, on hearing that I was married, blamed all my problems on "you resent your husband making you work". Another, on hearing that I was divorced, blamed all my problems on being depressed over the divorce. Clearly it didn’t register with him that my timeline indicated the initial virus occurred when I was single, I relapsed when I was married, and I had now relapsed again when I was divorced. My marital status had absolutely nothing to do with it. And, in fact, many female CFS/fibro patients tell similar stories – whether single, married, or divorced, doctors tell them that their condition is caused by unhappiness with that state, and theoretically would be cured by getting married if they aren’t or getting divorced if they are. Well, I got married, and I got divorced, and I still have CFS even after almost 10 years of being blissfully single.

The article suggests "Try a female doc. Studies show women do a better job of encouraging patients to talk" according to Prof. Debra Roter of Johns Hopkins. In fact, many CFS/fibro patients have found that female doctors are more open to accepting a physical basis for their ills, rather than stereotyping them as hypochondriacs or nut jobs. Female doctors know that not all women are stupid, depressed housewife wanna-be’s ... they just need to look in the mirror to see that stereotype is wrong. And, in fact, when I was able to get a female doctor, I was taken seriously. Unfortunately, there aren’t enough female doctors to go around, and some medical groups in this area restrict their assignment to those patients who for religious reasons are not allowed to see a male doctor. Since I have no such religious limitation, they would automatically assign me a male doctor, even though I asked for a female. (And, no, I wasn’t about to go out and buy a new wardrobe and change my name to fake being part of that religion.)

Tracy Gaudet, MD, author of "Consciously Female: How to listen to your body and soul for a lifetime of healthier living" finds that most women stick with an unhelpful doctor too long. She recommends if the doctor "belittles you, acts defensive, or flat-out ignores your requests for better dialogue" you should immediately look for a new doctor, and tell him precisely why you are changing. I’d say that any doctor who blames your CFS/fibro on your marital status is certainly belittling your concerns and deserves to be dumped.

When I changed doctors, I consulted a friend who is a nurse practitioner, how should I present my reasons so that they wouldn’t think I was doctor-shopping to get drugs? Knowing the entire story, she edited it down to "my last doctor’s office doesn’t return phone calls" as a perfectly legitimate reason that any doctor would respect.

The article suggests checking www.ratemds.com, and investigating your final choices at www.docinfo.org (there is a fee). "But remember that a spotless record won’t guarantee good communication skills."

Nor will it guarantee that there haven’t been complaints. I filed my first complaint about one of my doctors as soon as I realized that his staff had no intention of ever letting me make another appointment with him (it’s unethical to abandon a patient), and made more written complaints with the Medical Board as more information came to light. Yet, even though I know for a fact that multiple complaints were made because I’m the one who made them, the Medical Board shows that he has no complaints; they kicked back every one of my written complaints with a form letter that I hadn’t lost life or limb, therefore, they weren’t going to do a thorough investigation. A million other women could’ve had the same experience my friend and I had with him, and the California Medical Board would continue to say he had no complaints ... until he finally kills someone. I can’t point to a mangled or erroneously amputated limb, only to a lifestyle lost. Losing my health and my career simply wasn’t egregious enough to merit a black mark in his record.

So, I’d recommend checking one more place: your County courthouse, where there is no editing of what complaint is considered worthy of being listed in the records. In some places, you can get all the information you need online. If your county isn’t one of them, go to the Civil clerk, and ask for the case index. Look up the doctor’s name (and even the name of the medical group) in the Defendant/Respondent section, and if he’s been sued, start taking notes. The case index may indicate the names of the lawyers, which is certainly an easy way to get information – call the plaintiff’s lawyer, and ask what he can tell you about the case. Some are innocuous (one of Mom’s specialists was sued without having any part in the patient’s care; the lawyer named absolutely everyone whose name was on any piece of paper the patient had and sorted them out later) or maybe a landlord suing the responsible parent for a college student’s unpaid rent, and some will be surefire warnings to stay away.

If the plaintiff’s lawyer can’t or won’t tell you anything, ask to court clerk how you can get the case files and read the contents. I spent the money to file a lawsuit without a lawyer just so that there is a public record of what happened to me; the case was dismissed because of statute of limitation problems, but the facts are now out there to warn other innocent people away before they become victims of lying and incompetence.

And, of course, talk to other CFS/fibro patients in your area about what doctors they’ve found helpful and which they had problems with. Unfortunately, when I called the president of the support group I knew about, she had only one recommendation – the doctor who was never taking new patients. When I said I’d been trying for years to get an appointment with him, and who would she recommend in the meantime, she simply repeated his name, which did me no good, because he still wasn’t taking new patients, and wasn’t right up till the day he retired.

Eventually, a friend googled up a second support group in the area, and the president of that one simply groaned when I told him which medical group I’d gone to after my long-time PCP died suddenly – he was (to put it mildly) irked that the other person hadn’t at least told me to stay far away from them, because they were well-known in the CFS community as being the last place you’d want to go; he’d heard my tale of woe a dozen times before from other patients, who didn’t have the legal background to make a public record the way I did.

If you can’t find a support group in your area, Co-Cure.org has a Good Doctor list – these doctors are not all CFS/fibro specialists, some (including mine) are simply "CFS friendly", i.e., not inclined to slap a psych label on you. Check the various online forums, too, for e-groups – CFS_Facts-subscribe@yahoogroups.com will get you to mine – where you may find someone in your area who has some advice on doctors worth seeing (or worth avoiding). My current doctor is not a specialist, but he’s open-minded enough to read what I print out for him, and discuss the pros and cons of any medication or test recommended in that printout.

Tags: CFS, misdiagnosis, chronic fatigue syndrome, fibromyalgia, malpractice, doctor, mistake

Doctors' (mis)Treatment of Women

http://www.signonsandiego.com/uniontrib/20070703/news_lz1c03cancer.html

Diagnosis or distraction?
New ovarian cancer advisory could save lives, but it could also cause needless panic

By Cheryl Clark

“There have been so many women who complained about these symptoms but were blown off by their doctors,” said Goff, a gynecologic oncologist at the University of Washington. “We now know that paying attention could mean the difference between a 70 to 90 percent chance of a cure at stage 1, versus 20 to 30 percent at stage 4.”

“The biggest obstacle is that individual physicians not experienced in cancer are very likely to dismiss these complaints,” said Dr. Albert Deisseroth, an avid supporter of the advisory. He's president and chief executive of the Sidney Kimmel Cancer Center in Kearny Mesa. Deisseroth said that too often, patients complain about abdominal bloating and have their doctors respond, “Oh don't worry, we'll give you antibiotics.”

Citing her own research, Goff said ovarian cancer patients who complained of the pelvic symptoms often were told that nothing was wrong or that they had everything from depression to irritable bowel syndrome. Only 20 percent of those patients were initially informed that they might have ovarian cancer. Geri Danzig of Hillcrest is a classic case. When she complained about her pelvic symptoms to two doctors, she first was given an anti-depressant. 

* * *

This is the same "treatment" that CFS patients get -- they describe their symptoms to doctors and are given a pat on the head and an anti-depressant, or told nothing is wrong and given a diagnosis of hypochondria.

There is no question that ovarian cancer is a serious disease, but because these are female patients, and the symptoms are considered "vague", they're dismissed by "physicians not experienced" in treating the disease as being psychological in origin.  And then these patients die because they don't get sent to a specialist who does know how to make the diagnosis, until they've gone from the 90% chance in stage 1 to the 20% chance in stage 4.  Similarly, CFS patients who could have been returned to work become permanently disabled because of the lack of early intervention.

Time and again, we hear doctors say that CFS is impossible to diagnose.  But patient support groups have a near-100% success rate in making the diagnosis.  Why?  Because the patients are experienced with it.  We know how to differentiate CFS from depression.  In one, you have no initiative to start a project; in the other, you have initiative to start, but lack the stamina to finish.  The reaction to exercise is another easy diagnostic tool -- there are only a few diseases where exercise makes the patient worse.  Asking those two questions is absolutely free, no expensive testing required.  But those questions aren't asked because the doctors don't know to ask them.

The real crime is the willingness of male doctors to brand women as psych cases so quickly.  According to a statistic cited by Dr. David Bell, fully half of patients initially dismissed as hypochondriacs or given a psych diagnosis are eventually diagnosed with a real medical condition.  The patient knows her own body and when things aren't right with it.  It would behoove doctors to listen to the patients, not tell them they're imagining things, and not issue a psych diagnosis or prescribe anti-depressants until the patient has been evaluated by a psych professional who knows that there have to be emotional symptoms, not just pain and fatigue, in order to have a valid diagnosis of depression. 

Every time I've been evaluated by trained counselors, they have concluded that the symptoms I have sound like the flu, because the emotional component is missing.  When I take that evaluation back to the MD who thinks I'm just depressed, he refuses to accept the possibility that his amateur psych diagnosis is wrong and there's something physically wrong with me.

 

Tags: CFS, cancer, ovarian cancer, symptoms, anti-depressants, hypochondria

A Disability Wiki

From Margaret:

"Disapedia - A very broad disability community
A Wiki Disabled Community"

The disabled author wants some feedback from the disabled community. Notice
the heretofore poor and discriminatory entry on Fibromyalgia, and none on
ME, CFIDS, MCS, (notice the environmental category)or GWI. Here's a chance
for our good medical historians to politely send in an accurate entry to
educate the rest of the disabled community on our illnesses.
Margaret


http://www.disapedia.com/index.php?title=Category:Disabilities

Greetings,

I'm an undergrad at UC Berkeley. One of the problems that occurred to me is
that there are very few good broad website when it comes to disability. In
response I started Disapedia. The hope is to create a website that will
eventually cover any topic of interest. I would love if you guys check it
out and send in your feed back. Please let me know what you think. Thanks.

Peter
A Wiki Disabled Community
http://www.disapedia.com
AIM: Stringerace:
stringerace@disapedia.com

 

* * *

 

Disclosure: Peter has kindly agreed to link to my blog. 

 

I would urge those of you who have new, valid information about CFS or fibromyalgia to edit that information into the Wiki.  Let's get the truth out there, that "fatigue" has very little to do with CFS, and that neither condition is psychosomatic.

 

 

Tags: CFS, fibromyalgia, disability, disabilities, wiki, wikipedia

Some Good News

Activist Cort Johnson of "Phoenix Rising" reports:

"The husband of one of our group members had recently encountered a short class in medical school in which CFS was treated as a nothing more than a puzzling but entirely legitimate disease. The fact that CFS both a) made it into a class in medical school and b) was treated fairly is somewhat astonishing. The Vermont CFIDS organization was recently able to get a bill passed to educate physicians about CFS"

 

 

That they are now teaching budding doctors that CFS is real is good, but does nothing about the older doctors who are convinced that CFS is psychological because that's what they were taught in school and have never bothered to read any of the new research to find that's been disproved. 

 

The efforts of the Vermont organization have to be repeated in all 50 states, so that the doctors who are already out there practicing get brought up to speed on the neurological and physiological abnormalities that aren't readily apparent with just the basic blood tests. 

 

I had the basic blood tests, which were all normal (as they should be with CFS), because I don't have diabetes, anemia, AIDS, etc. along with the CFS.  Unfortunately, that doctor concluded that if these tests were normal, there was no need to order any of the other tests I requested, on the mistaken assumption that the tests he did should identify any medical problem under the sun, and that if they were all normal, then the problem had to be psychological.  Nothing could be further from the truth; blood tests don't show brain damage, they don't show paralytic muscle weakness, they don't show severe sleep disturbance, they don't show the cardiac dysfunction demonstrated by Dr. Lerner in the 90s and Dr. Natelson in the 2000s.

Tags: CFS, medical school, disease, physician education

Another CFS blog

From Jeremy Bearman jhbear@iafrica.com:

 I would like to announce that my blog contains update on Ampligen, and an 
update on John Gow's genetic research:
 http://www.cure-me.org/b2evolution