Sunday, August 26, 2007

Dissension in the Ranks

There have been some assertions by patient-activists trying to distance themselves from the disparaging CFS label that "there is no fatigue in ME". However, those activists with medical training who have reviewed the older pre-CFS medical literature assure us that "fatigue" was regularly mentioned in descriptions of Myalgic Encephalomyelitis, and was often described as being just as overwhelming as it is in CFS.

The primary problem seems to be the nebulous and competing definitions of "what is CFS?"

Originally, CFS was applied to the Incline Village epidemic of a disease which was compatible with the descriptions of prior ME. As detailed in Osler's Web, government scientists' own words make it clear that they did not want to acknowledge the severe and contagious nature of the epidemic, and brushed off any attempts by independent researchers to enlighten them that this was ME (which appears to be a variant of polio), not laziness or depression.

Various groups with ulterior motives, including a cadre of psychiatrists who saw lifetime employment for themselves in the reclassification to a psychiatric paradigm, have expanded the definition of CFS until some of those definitions now can be applied to any case of fatigue from any source. The requirement of "post-exertional malaise" and symptoms made worse by exercise has entirely disappeared from some definitions of CFS, so talking about that brand of "CFS" versus the original "CFS" is comparing apples and oranges. In fact, originally, a history of depression was supposed to preclude a CFS diagnosis, not, as some would prefer, CFS being a less-stigmatizing name for depression.

The Real Thing, which was known as Myalgic Encephalomyelitis or Post Viral Syndrome prior to the 1988 CDC-mandated name change, is precipitated by an infectious event. Although many doctors would like to disregard my 105 fever and try to relate my symptoms to an emotional reaction, those who knew me both before and after February 1987 support my version that I was happy and healthy and having no unusual stress; then one day I developed a high fever and flu-like illness and was never the same after that. It has nothing to do with some imagined emotional fragility due to my gender or my marital status, just as AIDS was eventually proven to have nothing to do with the original theory of "being depressed because you're gay". Those of us who got the diagnosis before special-interest groups started playing games with it all tell the same story, which sounds a lot more like a contagious disease than a mental illness.

Now we have people with CFS diagnoses who have no symptoms other than fatigue, who cannot imagine that what us old-timers are describing is the same thing they have. But the problem with that is not with the patients ... it's with the medical professionals who don't know that Chronic Fatigue Syndrome is not the same thing as chronic fatigue, and who ignore such little inconveniences as patients whose total symptom package doesn't match the criteria for CFS because they didn't have the viral onset required for the original CFS which was really ME.

CFS expert David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest. However, CDC has staunchly refused to change the name back to ME (in fact, it is almost impossible to get an ME diagnosis in the US). After agreeing to "consider" a name change, CDC later announced that the adoption of a new name would be premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, but without a definitive pathophysiology, CDC refuses to change the name. This little game has been going on for 20 years, and the patients are the losers.

If they'd put the efforts into solving CFS that were put into AIDS, a million more Americans would be fully employed and contributing to the economy, instead of begging for disability benefits which are denied because CDC ensured that early public opinion was formed on the notion of fakery, and has never done the remedial PR to educate the populace that innumerable objective abnormalities have been documented since 1984. While there is no specific CFS test, there are plenty of blood tests and neurological tests that can prove the existence of "something very wrong", but if the tests aren't done, or the judges don't understand that this how CFS is proven, benefits will continue to be denied to deserving people who, if they had any other diagnosis, would be deemed unable to work.   Costs to the economy of this epidemic are variously estimated at $9B-$25B a year; wouldn't it be better for the country to find an effective treatment and get us back to work?

Neurologists have described the fatigue of CFS/ME as "central fatigue", something very different from common tiredness. It's caused by a dysfunction of the Central Nervous System. This notion is acceptable to doctors in other neurological diseases, but somehow is deemed impossible or "doesn't make sense" in CFS. I have often noted that people with Multiple Sclerosis are fawned over and pitied when they tell people their diagnosis, but when I describe the same symptoms and same level of disability, I get verbal abuse. If I were a different sort of person, I would take the easy way out and just tell people that I, too, have MS. I'd rather educate people that CFS is closer to MS than to depression in both symptoms and pathology; in fact, some early patients were given the mistaken diagnosis of "atypical MS". There's no MS-specific blood test, either; it's diagnosed in the same way as CFS. The only real difference is that MS (which affects less than half as many people) has a higher profile and more acceptance as a valid neurological condition, and people would be embarrassed to question the diagnosis or attack a patient suffering such a debilitating illness.

The truth is, a CFS patient who does not exceed her limits probably won't experience overwhelming fatigue. I was utterly exhausted after a few days of trying to work half-time. Once I identified my limits, and made an effort to stay within them, I was only plagued by excessive fatigue when I could point to a specific cause, such as a sleepless night or a concerted effort to do housework beyond my known limits or the aerobic exercise forbidden by Dr. Cheney. More severely affected patients might have limits so low that they are utterly exhausted by walking 10 feet to the bathroom; less affected patients (such as me for a dozen years mostly in remission) might have limits so high that they can work full-time without being overly fatigued (but doing something active over the weekend instead of getting adequate rest is the straw that breaks the camel's back and brings on a relapse).  At whatever end of the spectrum, the key to your best health is the same: don't overdo.

The internationally-accepted Consensus definition at http://www.mefmaction.net/documents/me_overview.pdf describes CFS in terms compatible with the historic ME definition (a disease essentially eradicated in the US not by vaccine but by CDC fiat in mandating it be renamed CFS, and very few doctors being activist enough to use its correct name in making the diagnosis). Before disparaging CFS as laziness or mental illness or unprovable fakery, it would behoove you to read this document written by doctors and researchers who actually know what they're talking about. It is a lot more informative than the limited information CDC wants you to know. The information is out there for those open-minded enough to consider all the facts.

Dr. Bell has completed his latest book, which he describes as "not for rookies": "It describes a theory that fibromyalgia and ME/CFS are parts of a spectrum of illnesses, called here Neuro-Immune Fatigue, and that the common end pathway of these illnesses is a dysregulation of cellular metabolism leading to the inability of the cell's mitochondria to utilize oxygen." To get your copy of this compilation and summation of the newest research by one of the top US experts on CFS, send $25 to David Bell, M.D., 1276 Waterport Road, Waterport, NY 14571. In about six months, he hopes to have available "a very short book entitled Chronic Fatigue Syndrome and Fibromyalgia: A Short Treatment Guide for the Primary Care Provider. This book is short (around 50 pages) and reader friendly, designed to be given to a primary care provider respectfully by a patient with ME/CFS or fibromyalgia in order to communicate in a simple and direct way some of the treatment approaches that experienced clinicians have put in place for some years now." I can assure you, after reading Dr. Bell's writings, only the most stubborn iconoclast could still cling to the idea that there's "no proof" that CFS is a valid physical illness with objective markers. If you have questions or comments, visit www.DavidSBell.com.

But, yes, I know, there will always be those who don't want to know the truth, either because it's more fun to verbally abuse people they perceive as powerless or because they are unable to accept any opinion but their own.

For those people I offer the opinion of noted researcher, Dr. Yunus, who voices what patients have complained of for years:

It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D.

I have had doctors completely rewrite my life history in order to "manipulate the data" to "say what they want it to say". Years of my career and repeated expert diagnoses disappeared in the attempt to document what was necessary to support the doctor's misogynistic prejudices that divorcees don't like being back in the work force.  And, unfortunately, this fiction is the version the SSDI judge chooses to rely on, despite proof from other sources that I was never a stay-at-home wife and got my diagnosis more than a decade before I was forced to apply for benefits.  To his mind, the one doctor who refuses to accept the virologist's diagnosis -- the only doctor who says what the judge wants to hear -- is the only one who is telling the truth and all the others are lying. 

27 comments:

kansascchic said...

Being well read in AIDS I have never encountered this before
"being depressed because you're gay"
Could you please cite your sources?
Thank you.

kmc528 said...

One of several sources:
"Osler's Web" p. 505

(Dan Peterson speaking)

"My model for that is AIDS," he continued.  "When I was first in practice, when that disease was being disputed, it was the same kind of argument.  It just happens that people with AIDS die, and so the scientific world was stuck addressing the issue. I swear, if AIDS weren't a fatal disease, we would still be having the same argument about it."

and p. 585

(Wells Goodrich speaking)

There was an obvious precedent for the mistreatment of CFS sufferers, he continued.  "We know that the stage of medical confusion for AIDS lasted five years," he said, "from 1978 to 1983, by which time both the National Institutes of Health and the Centers for Disease Control had acknowledged its existence."  Prior to 1983, however, AIDS victims suffered from the same negligence to which CFS patients were now subjected.

kmc528 said...

A non-published source is that I lived through the beginning of the AIDS epidemic, having frequent conversations with some gay friends who were annoyed that it was obvious to them that their friends had something seriously wrong and were being told they were "just depressed because they were gay".  

Thankfully, there are doctors who are gay, who took a special interest in the Gay Plague, and reassured patients that it wasn't just depression; the symptoms didn't match.

And then the patients started to die, and it was not so easy for the disbelievers to say "it's all in your head" when faced with a mounting death toll and autopsy reports.

Unfortunately, in the early days, CFS patients weren't dying (we are now), so we couldn't convince people the same way the AIDS patients did that there was more there than depression.  The CFS autopsy reports do show something VERY wrong.

It almost makes you wish for a return to the days when CFS was jokingly called "AIDS Lite" (similar symptoms, but it didn't kill us).  At least AIDS gets respect.


kansascchic said...

There are so many inaccuracies in what you have stated and quoted it would take an hour's worth of typing time - time I don't have.
As I scanned this blog I noted that you continuously cite a very few resources over and over again.
At no point was AIDS ever considered to be merely depression. In fact even before it was established to be the disease it is patients had no idea they were ill until they exhibited physical problems.  And between the years of '78-83, and even beyond a huge majority dies within 12-18 months of onset. You will find no credible source stating it was initially passed off as depression. Yes there was confusion during the first few years of the epidemic but it was always acknowledged as being physical. By 1983 over 4700 people had been verified dead from AIDS.
"AIDS-lite" may have been used in CFS circles, but never by medical professionals who specialize in AIDS. To even try to compare these two issues is outrageous.
And this statement is so ridiculous it immediately makes one question anything the person who said it makes
"Thankfully, there are doctors who are gay, who took a special interest in the Gay Plague, and reassured patients that it wasn't just depression; the symptoms didn't match".

kmc528 said...

"To even try to compare these two issues is outrageous."

Take it up with the doctors who treat both.

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.”

Nancy Klimas, M.D., at 11/3/06 CDC Press Conference:
“there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS"

Either of them will be pleased to tell you that AIDS and CFS have a great deal in common both biologically and in the way they were originally perceived.  You should be able to easily google up contact information for either of them.



kmc528 said...

"And this statement is so ridiculous it immediately makes one question anything the person who said it makes
"Thankfully, there are doctors who are gay, who took a special interest in the Gay Plague, and reassured patients that it wasn't just depression; the symptoms didn't match"."

Thankfully, there are doctors who also believed that CFS was real and reassured the patients that it wasn't just depression; the symptoms didn't match.

If not for the doctors who refuse to buy into the early detractors who tried to pass it off as depression, we'd be in a lot worse shape.

There really were gay doctors who didn't believe that being gay was an automatic recipe for depression, and looked further than the stereotype, to point out what the early AIDS patients had didn't match depression.  And there were doctors who didn't believe the early CFS patients were depressed and similarly listed the things that proved it wasn't depression.

If you don't believe my sources, Dr. DeMeirlier has just counted 5000 research studies proving CFS is biological, not psychological.  I have not read all of them, so I don't cite all 5000 of them.

kansascchic said...

You have quoted 2 - repeat 2 - people out of thousands who treat AIDS patients, so that does not say very much.
And I repeat - AIDS was never thought to be depression, even in the beginning when it first surfaced. Again I repeat that the vast majority of its early victims had no symptoms, no idea they were ill until there were physical manifestations. I cannot believe you have the audacity to try and state otherwise. I have no need to google for such information because it is not out there, leastways not from reputable professionals who have studied the virus in labs and worked with AIDS patients. You give the impression of trying to compare AIDS and CFS as being similar in the way both were perceived as similar so as to give more creedence to CFS. Science does not work that way. You can not manipulate facts in an attempt to make them fit as you wish if they don't. You google and find 3 or more credible authentic articles, not from or only from CFS advocates, that state AIDS was initially viewed as depression. You will not find them as it is an outright untruth. As such I say your supposed conversations with gay friends who related such as statements mere bullshit.
It may be best to stick to subjects you are qualified in discussing, even if it all does appear to be mere cutting and pasting of articles. It is clear you are not qualified to speak as someone very knowledgable in the true facts of AIDS/HIV.

buriedlabrat said...

Hey

buriedlabrat said...

hey KansasCity - didn't take you long to check it out, huh?
Isn't it all you were told it was?
And AIDS now - right up your alley no less
Enjoy and pass along

lorwood02 said...

Woot! We have quite a party going on here, guys. Word is spreading.I think we should be thanked.No one else seems to come around here.

lorwood02 said...

And rat, I haven't forgotten you still owe me 2 papers

kmc528 said...

"no idea they were ill until there were physical manifestations"


Correct.  And those first physical manifestations were initially dismissed as symptoms of depression.

I do not get paid to write this blog, and this week I have too much paid work on my desk to take 2-3 days off to go through all my CFS reference materials to find ALL the references to support my statement that AIDS patients were told they were depressed over being gay.  I've read it in several places and heard it from multiple sources.

Some day when I have time to do that, I will, but it's not going to be this week, unless you're willing to reimburse me for the work that I send to someone else in order to do the research you want.

It's not as easy as googling it up, because a lot of the early information is not available online.  I have a lot of articles and interviews from the 1980s that are only available on paper, and I will have to sit down with those boxes and go through them manually.  Some day when I run out of higher-priority projects (like housework and paid work) maybe I'll have time to scan and index those, but this week I'm doing things that I get paid for.

kansascchic said...

That is exactly the type of reply that was expected from you as plainly you would rather  continue with your charade of appearing to know what you are talking about instead of admitting you are wrong. Which you are. AIDS/HIV was never deemed any type of emotional disorder at any point. You may attempt to save face with your too tired schlick, and maybe even those on your level will buy it. But those of us here (and it seems like there is a crowd of us) know the facts regarding AIDS/HIV, which includes its history. And you can be assured that Rat knows more on this particular virus than you and I ever will.You would gain a bit more credibility here by agreeing you have been mistaken instead of offering up excuses not to validate your statement.Taking a cursory glance throughout your blog I see that anything that isn't of a personal nature is nothing more than simple copying of big words and spun theories from articles by supposed experts. I question as to whether you understand most of it although I will admit most of it appears to be convoluted pap.

kmc528 said...

"That is exactly the type of reply that was expected from you"

I'm sorry, would you like a note from my client saying that she needs me to work this week?

I work on this blog when I have time, not when it's convenient for you.

When I have time, I will hunt through thousands of pages and find those references, but it will not be this week.  Perhaps one of the other activists has the time and can do that sooner.  Dave?  Pat?

kmc528 said...

"You may attempt to save face with your too tired schlick,"

I'm sorry, please point out where I said I was "too tired"?  I said that I was too busy WORKING for pay.  Doing what people accuse me of not wanting to do, which I actually never stopped doing.

The best I can do this week is to ask my Research Guru and a couple other people who might have the information if they have it where they can easily find it.  If not, well, I'll get to your UNPAID research project when I finish the work that I'm being PAID for.  My job comes first, always has and always will.

lorwood02 said...

Might serve you best then to know the facts as they really are or be prepared to back up incorrect babble that flows so easily from you.

ss3west said...

This is a real rip - she throws out an assine comment then says she'll do Kansas' research to prove its true? Did I read that right?

skygaze6 said...

Wait. Did yall miss this one. Doesn't she understand whay physical manifestations are and mean? Can't she figure it out?

"no idea they were ill until there were physical manifestations"

Correct.  And those first physical manifestations were initially dismissed as symptoms of depression.

passi904 said...

this whole thing is just jive, right?
i mean this broad isn't real is she?

lorwood02 said...

For a while some of thought she might be a blog created by a prof or such but if you look at enough no nody would have the time patience or imagination to put it together. That, the photos in the link ecterea means kmc528 probably exists.

passi904 said...

and she  ain't no 140-145 lbs is for sure cute try how she tried to suggest they were photoshopped maybe she could show us a currant pix if she doesn't have to dig for one

kmc528 said...

Yes, I am a real person.  I run my own business and am in partnership with friends in another business.

I do this blog in my free time, so I don't always have the opportunity to immediately drop everything and find additional sources for things that are questioned.  I have probably 4 or 5 big boxes of CFS literature, newspaper articles, etc. that I have to look through when a question is asked.  Much faster, obviously, to refer to the index in Osler's Web than to dig through that many boxes looking for something that's not indexed.

For those who want to assume CFS means I'm just too lazy to work, take note that I returned yesterday's project to the client at 11 PM, then discussed the purchase of advertising with the fellow selling it, and after midnight sent e-mail to my business partners to discuss with them whether we wanted to advertise with him.  When's the last time YOU were still working after midnight?  Don't call me lazy until you know the facts.

kmc528 said...

Why should I waste my time re-explaining articles which are already clear?  

If things don't need to be put in plain English or put in context, there's no point in my wasting energy telling people what they mean.  They just read the article.  If they have questions, they can ask me or their doctor.

This blog collects articles and research from a variety of sources.  It doesn't purport to be a site where a doctor answers your questions, it's a place where you can find the best of the research without wading through a ton of stuff.  I'm not a doctor and I don't play one on TV, either.  I tell people what the research is and what my personal experience is, and they make their own decision about it, take it to their doctor for his edification.

If you want to start your own blog applying your medical knowledge to playing doctor with my readers, be my guest, but that's not why I'm here.  I'm here to put the facts out to sick people who want to efficiently see the cream of the crop, not wade through 100 posts a day.  I recently slogged through a long research article only to see the conclusion "we didn't prove anything"; a complete waste of time for those patients who can only read a few minutes a day.  That one didn't make my blog.  A more informative one did.

icemaidn60 said...

Oh look!  Another medical person who hears/sees what she wants to and not what was actually said.  

I have read and reread Karen's explanation of why she doesn't have time to do research for you right now and I don't see the word tired in there anywhere.  I see the excuse used by every working woman in the world, that she's busy and doesn't have time to add more chores.

You're proving EXACTLY how Karen's medical records got filled with lies.  You didn't want to hear "busy", you wanted her to say "tired" and so you quoted her as saying "tired" even when it's there in black and white that she never said that was her reason.  

Keep it up Christine.  Your constant misquoting is doing more to prove Karen's case that people with prejudices about CFS lie about her than anything she could say.  People can argue what she might have said to a doctor, but there's no question what she said here about being "busy working" which you misquoted as "tired".

icemaidn60 said...

I don't recall Karen ever saying she was an expert on AIDS.  She knows what everyone living in California in the late 70s and early 80s knows, that AIDS was called the Gay Plague and all sorts of reasons were given for the problem before they found the virus that causes it.  Were you kids even born yet then?  Were you old enough to go through the horror, when they said it was transmissible through saliva, of wondering if you were going to die because you shared a soda with a gay friend who got sick?  Karen and I were.

I heard the same thing from my gay friends.  I don't remember the names of the doctors who said they were depressed because they were gay or the names of the doctors who said it couldn't be depression because they weren't my doctors.  My friends who told me would know who their doctors were, but I can't ask them because they died of AIDS long ago, may they rest in peace.

Most AIDS doctors only treat AIDS, so I don't know where you expect her to find an AIDS doctor who doesn't treat CFS but knows enough about CFS to give an informed opinion about it.

kansascchic said...

Who the fuck is icemaiden and christine??? Not a one of us have that name. But seeing as you are a friend of the blog writer we'll have to draw our own conclusions as your friends who told you the exact same thing. Odd thing however since it is all bullshit. Christ you 2 are hysterical

ss3west said...

hey icemaden do you have time to back up your statements with facts? We're guessing no. Hitting the clubs now and hope to come back to some more laughs by way of your reply. see ya.