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