What exactly is CFS

A recent topic of discussion among CFS activists was the number of patients who are advocating that CFS is "just fatigue" or "doesn’t involve fatigue" or some other definition out of the norm.

How do they come to this conclusion? Because they are describing what they themselves experience. And, if they were to see a CFS specialist, they would in all likelihood be told that they don’t actually have CFS.

The name CFS was invented by CDC in response to the 1984 Incline Village epidemic, so it must be assumed that the name applies to specifically that disease and its symptoms.

Yet, over the years, the notion has crept in that it’s not necessary to have viral onset, even an auto accident could cause it. Obviously, if one set of symptoms is caused by a virus and another is caused by an auto accident, you’re not talking about the same disease. It’s well-accepted by the medical community that pain can cause fatigue, and pain can disturb sleep, so we don’t dispute that someone in pain following an auto accident may feel fatigue, but it is quite clear that what they have isn’t what we have.

Over the years, as the definition has been expanded from "post-exertional malaise" and "exercise intolerance" to incorporate chronic fatigue of any origin, those hallmarks of true CFS have been watered down. "Post-exertional malaise" refers to feeling awful for more than 24 hours after either physical or mental exertion; if you come home from a 3-mile run today feeling tired, but are able to go out for a 3-mile run tomorrow and the next day, that’s not it.

In order to prove my point to disbelieving doctors that I could not exercise my way back to health, I took a one-mile walk every day for a week. The first day, I came home really tired, more tired than a slow walk should leave you. The second day, I came home and collapsed into bed. The third day, I had to really force myself to go out for the walk because I felt so awful when I woke up already, came home, collapsed into bed, and fell asleep for a couple hours. By the seventh day, I was no longer able to get out of bed at all. That fits the definition of true CFS, and the research that proves that the muscles have an abnormal response to exercise, and take an abnormally long time to rebound. The experts will tell you that if you can exercise, you don’t have CFS.  And if you improve with exercise, you definitely don't have what the experts mean when they say CFS.

The neurological symptoms of true CFS have also fallen by the wayside as CFS has been diluted by inaccurate definitions that are more appropriate to the symptom of "chronic fatigue" or a psychological condition.

Unfortunately, too many doctors who have never read the diagnostic criteria or the international consensus definition hand out an inaccurate CFS diagnosis to their patients, who then go around telling the world that their symptoms (which might really be depression or hypothyroid) are the symptoms of CFS, and dismissing any symptom they don’t have as "that’s not part of CFS".

The real problem is not the patients, who have a legitimate reason to believe their doctors have given them an accurate diagnosis, and that, therefore, their symptoms accurately describe the illness they’ve been diagnosed with. The problem is the uninformed doctors who think that any case of chronic fatigue is Chronic Fatigue Syndrome, whether it started with a virus or not; whether the patient has a sore throat, fever or swollen glands or not; whether the patient improves with exercise or becomes worse; those who don’t rule out depression or other illnesses which could cause fatigue.

The CDC diagnostic criteria require "four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours" in addition to the fatigue. Yet, many doctors make the diagnosis just on the reported fatigue, without the existence of any other symptoms required by the diagnostic criteria.  (In fact, if I'm getting adequate rest, I don't feel fatigued at all.  I feel pretty darn good ... till I get off the couch and try to do something and run right smack into that exercise intolerance.)

Only by using the correct diagnostic criteria for CFS can we determine the truth about CFS, also known as Myalgic Encephalomyelitis, also known as Post-Viral Fatigue Syndrome. The international consensus definition is available at http://www.theoneclickgroup.co.uk/documents/ME_CFS_docs/Canadian%20Definition%20of%20ME_CFS.pdf

One reason why CDC’s website says "No single therapy exists that helps all CFS patients" is because too many people classified as "CFS patients" actually have something else entirely. Eventhe government’s research pool has been polluted by people who have fatigue related to stress, depression, or burn-out, rather than those whose fatigue started with a virus. I remember claims 20 years ago that doctors were miraculously curing people of CFS with blood pressure therapies, thyroid medication, etc., claims that weren’t able to be reproduced when tested on people who’d been diagnosed by the CFS experts. Every one of those claims was disproven in the long run by proving that the doctor who got his 15 minutes of fame had misdiagnosed these patients who didn’t have the right symptoms for CFS; they were cured with blood pressure or thyroid medication because that was their problem all along.

Others are touting dietary changes as the solution to CFS.  No, getting rid of gluten fixed Celiac Disease, which has some symptoms in common with CFS.  My health didn't improve in the least when I went on a restricted diet.

If you don’t have the symptoms listed for CFS, then you probably have something else, no matter what your doctor told you. What helped you may not help someone who has true post-viral CFS and, in fact, could be deadly. So, if those of us with the post-viral version refuse to follow your advice, it doesn’t mean we don’t want to get better – it means that we’ve read the experts’ opinions that it isn’t advisable for what we have.

Do yourself a favor -- go to a CFS expert and get the right diagnosis.  Then get treated for what you have.  Anti-depressants and thyroid pills didn't help me in the least; neither did consuming lots of salt to raise my blood pressure, nor dietary changes. 

What helps me is what the CFS experts have always recommended: don't overdo, get plenty of rest and improving the quality of sleep so the body can get the deep sleep necessary to start to heal itself.  When someone finally addressed the fact that I was only sleeping from 5 AM to 7 AM after tossing and turning all night, my immune system started working again, as evidenced by a months-long fever while it fought to get the upper hand over the virus again. 

Tags: CFS, misdiagnosis, Chronic Fatigue Syndrome, hypothyroid, sleep, CFS/ME, ME/CFS, myalgic encephalomyelitis, fever, virus, exercise, doctors

Inappropriate Medical Treatment for CFS can be Deadly

Excerpts from a very well researched letter by Jodi Bassett and Clytie Siddall.  The entire letter is available for download at http://www.ahummingbirdsguide.com/cbtandgetletter.htm and should be sent to any doctor who advocates exercise or Cognitive Behavioral Therapy for CFS patients to advise him of the dangers, and the adverse results, of these inappropriate therapies.

-----

The name M.E. was coined in 1956. M.E. was formally classified as an organic
disease of the central nervous system (ie. a neurological disorder) in the
World Health Organisation's International Classification of Diseases in 1969
... the recorded medical history of M.E. as a debilitating organic neurological
disease affecting both children and adults is substantial. It spans over 60
years and has been published in prestigious peer-reviewed journals all over
the world. (M.E. is in no way 'medically unexplained.')

The interventions known as graded exercise therapy (GET) and cognitive
behavioural therapy (CBT) have been repeatedly demonstrated in the
literature to be not only ineffective but specifically harmful for people
with M.E. A number of deaths have even been caused by the administration of
GET in people with M.E.

Myalgic encephalomyelitis is an acutely acquired illness initiated by a
virus infection with multi system involvement which is characterised by post
encephalitic damage to the brain stem (which controls all vital bodily
functions). ... This exercise intolerance is one of the
unique features of M.E. - all M.E. patients worsen with even trivial levels
of activity or exercise (or cognitive exertion or orthostatic stress).
People with M.E. do not improve with exercise. They cannot; exercise
intolerance is a large and essential part of what M.E. is. If a person
improves with exercise they do not have M.E. 

The way the bodies of people with M.E. react to exercise is abnormal in a
number of different ways. Strong evidence exists to show that exercise can
have extremely harmful effects on M.E. patients; permanent damage may be
caused, as well as disease progression: recent research has shown that
postural stress (as well as activity/exercise) exacerbates the
well-documented cardiac insufficiency in this disease. Patient accounts of
leaving exercise programs much more severely ill than when they began them;
wheelchair-bound or bed-bound or needing intensive care or cardiac care
units, are common. The damage caused is often very severe and may be either
long-term or permanent. Thus some patients are still dealing with the severe
physical effects of inappropriate advice to exercise (or formal GET
programs) 5, 10, 15 or more YEARS afterward. These abnormal responses to
exercise are so pronounced that exercise tests are actually one of the
series of tests which can be used to confirm a suspected M.E. diagnosis.

In addition to the risk of relapse, sudden deaths have also been reported
in a small percentage of M.E. patients following exercise. As M.E. expert of
20 years experience Dr. Elizabeth Dowsett, explains; '20% have progressive
and frequently undiagnosed degeneration of cardiac muscle which has led to
sudden death following exercise.' 

CBT to convince someone with M.E., that he/she does not have a physical disorder is disrespectful, inappropriate and cruel. 

There is in fact no evidence whatsoever which exists to show that Myalgic
Encephalomyelitis can be caused or perpetuated by psychiatric or behavioural
problems; nor that therapies such as CBT or GET are appropriate, safe or
useful in treating M.E. patients. The studies which support these theories
and the use of these therapies have been conducted not on people with M.E.
but instead on patients with an entirely unrelated health problem - the
symptom of fatigue.

While there may or may not be some benefit from these interventions in
patients suffering the symptom of 'fatigue' CBT and GET are at best useless
and at worst extremely harmful for neurological M.E. patients. (An entirely
unrelated patient group.) The scientific evidence is very clear on this
matter. It is unscientific and unethical that any patient with M.E. be
recommended (or forced to participate in) such inappropriate programs.

Tags: CFS, CFS/ME, ME/CFS, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, exercise, CBT, psychotherapy, counseling

Another step toward public education

The Parade magazine that most people get in their Sunday newspaper had a one-page article on CFS today.  (Available online starting Tuesday at http://www.parade.com/articles/editions/2007/edition_01-21-2007/Chronic_Fatigue )

Good news, bad news, although the highlighted box mentions "prolonged exhaustion after activity", the article doesn't mention at all that this is a hallmark symptom and the easiest way to differentiate CFS from depression (or virtually anything else).

Still, a magazine that millions of people read has made it clear that it should be taken seriously and is not "all in your head". 

I'm pleased that the doctor specified "gentle exercise", though he didn't specify what that might be.  Too many doctors don't consider it exercise unless you sweat, and that kind of exercise is what makes CFS patients worse. 

Since the doctor didn't specify, I will: all but the most severe/bedridden patients should be able to do some muscle flexes and stretches -- I do mine in bed.  Since putting my head down to my feet makes me feel faint, this allows me to bring my feet up to my head; same stretch but without the negative side effects.  I do modified push-ups: I've recently lost the ability to roll over in bed by rolling (those muscles have been overused with coughing fits during cold season and have responded with another typical CFS symptom: paralytic muscle weakness), I have to push myself up off the bed and flip myself over, which keeps my upper arms toned.  You need not waste energy on non-productive weight-lifting; you can lift a bottle of milk or water from the fridge to the counter, and a one-pound can of vegetables from the shelf to the stove, in the process of fixing a meal. 

Tags: CFS, Chronic Fatigue Syndrome, CFS/ME, ME/CFS, fatigue, tired, exhaustion, exercise, paralysis, muscle, weakness

Latest Medical Information about CFS

Thanks to Pat Fero for this report.  This new information again proves that CFS is a very real, complex medical (not psychological condition) that needs serious research.

An informal IACFS conference summary - first take.

Pat Fero, MEPD
WISCONSIN


I attended the 5 day IACFS conference, January 9 - 14 in Ft. Lauderdale,
and in many ways it was amazing. I am attempting, in general terms, to
describe what I heard. I can no longer take notes and listen, so I will
miss important things plus I show bias for my own personal interests.
Additionally, it is impossible to attend 5 days of presentations. Please
look for other conference summaries that will be extensive. You might
consider ordering the IACFS conference syllabus for $15 or choosing audio
and/or video options.  Call Insta-Tapes Media at 1 888 346 8273 for
ordering and pricing information.

Research findings and ideas:
   In general terms, many studies looked at exercise intolerance to try to
define what happens in the body.  The researchers and clinical scientists
are developing methods to measure cardiovascular, and cardiopulmonary
health in CFS patients. This relates to oxygen consumption. Several papers
in the main session and in the poster sessions showed that CFS patients
ability to do work (bike, treadmill)  is impaired if one measures how much
oxygen is used for the task. It's a mathematical computation based on
(age?) and body weight. Control groups varied. Normal, deconditioned and
those patients with primary depression were compared to CFS patients. One
interesting study showed that CFS patients will show extreme abnormalities
in a next day, second session of exercise. CFS patients do not recover in
24 hours =  intolerance.


Patients understand "overdoing" and "payback," but in research it is
wonderful to see US and international scientists defining methods to show
what we experience. Over and over again, I heard...THIS is a very abnormal
finding. In addition, one study showed that both mental and physical energy
expended can cause impairment.


What to do about it? Graded exercise therapy is ill advised. If a patient
has abnormal oxygen consumption, muscles will not have enough O2. If you
push yourself, this will start a cascade of events that lead to
relapse.  Yet, any kind of movement helps the body maintain some activity
tolerance and allows those chemicals recycled in muscle contraction to be
stimulated.


Along the same lines, it was hopeful to see several studies on cardiac
involvement and CFS. This would include work on viruses that seem to target
heart tissue (Martin Lerner), Inflammation and Arterial stiffness in
patients predictive of cardiovasular risk (Vance Spence), and the complex
lecture by Paul Cheney on "Diastolic Dysfunction in the Chronic Fatigue
Syndrome enhanced by Tilt-echocardiography."


Immunology/Infectious disease studies are back!  One researcher new to CFS,
presented a wonderful explanation of MD training and the infectious disease
model. Jose Montoya, Stanford University School of Medicine, said that
traditional training wraps around a short course disease model. A person
gets very ill, is treated if possible, then lives or dies.  Disease with an
infectious onset resulting in long term, chronic illness is not common and
is not emphasized in medical school training.


So why chronic illness with infectious onset?  Scientists need to look at
gene variance and to try to find abnormalities and commonalities in CFS
patients to see the disease process.  Montoya also discussed the changing
view of viruses. It was thought that one virus = one type of illness.(EBV
causes mononucleosis.) Apparently, with much more study on viral infection,
viruses in general, and the discovery of new viruses, we know that several
kinds of viruses or a combination can cause very similar illnesses. Viruses
mutate, and viruses adapt to the host. (That would be you and me.)


Genetics/Proteomics. How is the variability of the host reaction to viral
infection related to genetics? Again, investigations in this area surge
forward in all countries. Because the information is very technical and I
have no background, I cannot address this. However, the surge represents
keys unlocking doors for people with CFS.


Proteomics focuses on the structural and functional properties of proteins
and their expression. One investigation poses that a specific CFS related
proteome (like a profile) suggests a common pathophysiology for CFS, FM and
Persian Gulf War Illness. This research is a collaboration among three
academic institutions, Federal Institute of Technology, Zurich,
Switzerland, University of Michingan, Ann Arbor and Georgetown University
(PI James Baraniuk).


Medical Technology. I want to emphasize that thinking about fatigue in
scientific terms is changing and is cutting edge.   One session was called,
"New Methods for Evaluating the Fatigue State." A patient might think...oh
no...here we go again. However, the presentations that followed showed a
leap in how to think about fatigue.  -  "Spectroscopic diagnosis of Chronic
Fatigue Syndrome by visible and near-infrared spectroscopy in serum
samples."  - This complex presentation from Japanese researchers at the
Fatigue Clinical Center in Osaka, Japan, concluded that "Vis-NIR
spectroscopy for sera combined with chemometrics analysis could provide a
promising tool to objectively diagnose CFS." The team was able to determine
through blood, a "complete separation"  of 77 CFS patients from 71 healthy
controls


You knew you were sick!

New methods in viral studies using refined technology show further
abnormalities in subsets of CFS patients. I missed an entire session on
Sunday afternoon devoted to this, but smaller sessions from Wednesday
through Sunday, highlighted the work. With the support of the HHV6
Foundation, the founders, Kristin Loomis and Annette Whittemore and their
scientific advisor, Dr. Dharam Ablashi who discovered HHV6, interest is
renewed and generated in viral CFS investigations.


Case Definition and Epidemiology. Several sessions were devoted to the
various research and clinical case definitions of CFS. As with new medical
equipment that enables researchers to look more carefully at donor samples
to find a biological marker for CFS, establishing a criteria that works in
the doctors office is a much needed diagnostic tool. Unless MD's use  the
Canadian ME/CFS criteria or use their own gleaned from years of clinical
practice, they have no standard to use when trying to discover if a patient
has CFS. So, with much lively discussion about including this or that
symptom, scientists are trying to find something practical, so we do not
have to go to 10 MD's before finding a diagnosis.


A new Pediatric case definition was introduced by a panel of international
researchers. This is in the development stages, but it looked very good to
me. The longer document includes the definition and a preliminary
questionairre that can be used for parents and for a child who might have
CFS. My thought was THANKS to Dr. Leonard Jason who spearheaded this effort
and to all the MD's who have been seeing kids for 20 years. AND...IT IS
ABOUT TIME. How can we begin to look at how common CFS is in kids unless we
have a way to define what the beast looks like in this population?


Brain Function. Seven investigators presented in this 2 hour session. (I
missed the entire session.) As I look at abstracts, I see that increased
use of instruments like MRI, SPECT, PET and fMRI, and use of these in an
innovative way, show some of the abnormalities in functioning that patients
experience on a daily basis. These may not have practical application if a
patient cannot have this testing done, but there are other ways to find
loss of functional abilities.


In one study, the Van Hoof Elke (Belgium), patients performed a
standardized exercised stress test, neurocognitive tests and filled out a
questionnaire on their functional abilities. The results showed that
functional status could be predicted by both the exercise stress test and
by testing cognitive abilities. This Belgium team concluded that use of
these very common tools to define occupational disability seems valid.


Years ago, a Deluca study showed that CFS patients have deficiencies in
speed of information processing. At the time, it was one of a few studies
confirming what patients say about their loss of thinking skills. At this
2007 conference, several studies furthered our understanding . The Japanese
and Swedish research teams collaborated on comprehensive look at a
neuro-molecular mechanism leading to chronic fatigue. They conclude that
CFS is not only a functional disorder, but also an organic disorder.


Now that I am looking at the abstract book, I find many interesting
studies. Perhaps I will write a second summary. I did not even mention
advocacy issues that were addressed for 2 days and simmered for 5 days. You
know, after I returned from the first Ft. Lauderdale conference in 1994, I
devoted a 90 minute support group meeting to summarizing the research. We
had 40 people attending! Now, I could not do that because there is far more
research in many more areas and we no longer have a Madison support group.
The dynamics are so different.....


I know I will post about NIH funding. I have 2 new FOIA's. The bottom line
on these is... YES, we have 7 new CFS grants = the possibility of renewing
7 grants, so the situation is better. The down side is that The NIH
budgeted 6 million dollars, the "new money" offered the possibility of 4
million dollars, so one would think that we would have 9  to 10 million
dollars spent on CFS in 2006. I would take 8 million. However, it appears
to be the same 6 million dollars we have had for years. The FOIA documents
are on the WI website at www.wicfs-me.org.


The conference was delightful and perplexing. PANDORA people worked many
long hours and far into the morning the night before the patient conference
which had about 300 attendees. For me, meeting patients cements my
commitment to work on CFS issues a long as I am able. What a joy!!!


The scientists and MD's (about 300?) are committed to CFS research. It's
neither a high profile career in science, nor do they gain great wealth
from researching an underfunded, misunderstood, cutting edge illness. When
the MD's go home, they do not have support circles of colleagues that
admire their work and share stories. The ICONS in our community show wear
and tear and holes in their shoes just like us. I am pleased to have been a
part of the 8th IACFS conference and I am looking forward to the next event.


Dietary supplements/prescriptions. We still have few treatment studies for
CFS. Several companies exhibited products and their studies showed the
positive effects of supplements in CFS and FM patients.

 

After all these studies showing major compromise of bodily systems, it should be clear that if anyone needs their heads examined, it's the doctors who continue to deny CFS is real, and not the patients.

One of my doctors claimed he didn't take me seriously because "nothing she said made sense".  In fact, everything I told him made perfect sense in the context of CFS.  He just couldn't make it fit his desired diagnosis of depression, and rather than considering that his diagnosis might be wrong, it was easier to put the blame on me for confusing him.

Tags: CFS, CFS/ME, ME/CFS, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, research, disabling, disability, medical research

Perception vs. Reality

My ex’s work schedule had him working on Saturdays. We lived in a tiny apartment (the whole place was the size of my aunt’s living room), therefore, it was best if I stayed out of his way while he was getting ready for work. That meant I couldn’t be in the bedroom, kitchen or bathroom, or anywhere along the path between them, where I’d be underfoot during his preparations, so I would retreat to the couch in the far corner of the apartment and knit until he left. When he came home Saturday night, I’d be on the couch knitting. Therefore, it was his perception that I had spent the whole day on the couch knitting and hadn’t done a thing all day.

The reality was, once he left for work, I’d wash his breakfast dishes (something he should’ve been able to see had been done), fix my own breakfast, clean the rest of the apartment, and cook a nice dinner from scratch (something that I know he knew had been done, since he sat down to eat it when he got home). But because he didn’t see me doing any of those things, it was his perception that he "did all the housework" and I did absolutely nothing. He saw the little things that he did (about every six months, he would swish a brush through the toilet and demand praise accordant with having single-handedly cleaned Buckingham Palace), but he never saw me doing the cleaning, therefore, I "obviously" wasn’t doing any.

The same perception-versus-reality exists with CFS. People see that you spend most of your day resting, but they never acknowledge the things you do when you’re not in bed. Someone who was truly "lazy" would not spend most of her good hours cleaning her house or spend all his good hours working for pay; they’d spend the good part of their day at the beach or the mall, having fun.

I had a doctor who was convinced that I was applying for Disability because I didn’t want to work, and this perception blinded (or rather "deafened") him to any reports that I was trying to work (e.g., I accepted an 8-hour research/writing project and it took me 3 weeks to finish because I could not understand the books that I had to read – after the second or third sentence, they could just as well have been printed in Russian).

His perception was that I didn’t want to work, when the reality was that I wanted very badly to work, but I simply could not do it – getting to the library to do research left me so exhausted that my eyes and brain wouldn’t focus on the book in front of me. It was the same experience that my roommate had after pulling a three-day all-nighter, so why should it be so unfathomable that physical fatigue would cause mental dysfunction? Moreover, when I was complaining that I had been sleeping 2 hours a night for months, why wouldn’t he recognize these symptoms of sleep deprivation? Perhaps he might have, if his mind hadn’t been clouded by the perception that women lack the work ethic men have, and therefore I was just looking for an excuse to stop working.

The reality is that most of the CFS patients I know continued to drag themselves into work, getting sicker by the day, until either they were told by their boss not to come in any more or became so sick that they couldn’t get out of bed without collapsing to the floor. That shoots down any assertion that the real problem is that patients are slackers. But, the perception is so ingrained that it’s hard for the reality to batter down the wall to peek through.

There’s also the notion that because there is no test specifically for CFS, that the symptoms are "medically unexplained" or that there is no test which shows any abnormalities. There are many tests which will be abnormal, but they are not the blood tests which are commonly performed: they are unusual or expensive high tech tests that are not part of the standard series performed by most general practitioners. There are 4000+ studies worldwide showing objective abnormalities, with obscure tests of immune function or brain scans or neurological testing. If someone comes in with the mumps and you give them a blood test for measles, that test will indicate they’re perfectly healthy, because it’s testing the wrong thing, and it’s the same with the basic blood tests done by most doctors – they aren’t testing for brain lesions or central nervous system dysfunction or NK cells – they test for diabetes (which I don’t have), lupus (which I don’t have), hypothyroid (which I don’t have)... Of course, they’re negative. It took years before anyone did any test that would reveal an infection/immune problem, and when I had it, it was described to me as "off the charts".

It doesn’t help that psychologists have exploited the name similarity between Chronic Fatigue Syndrome and the symptom of chronic fatigue and the psychological condition Fatigue Syndrome, and have persuaded the media that CFS and CF and FS are really all the same thing, and are all psychological. That may be the perception, but, in reality, CFS has a diagnostic code number that places it in the neurological category (which is logical, given its previous name of Myalgic Encephalomyelitis: inflammation of the brain) while FS has a diagnostic code number in the psychological classification.

Other doctors have the perception that CFS is another name for depression, one which avoids the stigma of mental illness. The reality is that CFS has many symptoms not present in depression, and test results for the two are vastly different, e.g., cortisol tests are out of whack in opposite directions. Someone who has true CFS (as opposed to a misdiagnosis) will have absolutely no benefit from anti-depressants. (In fact, most of them make me even sicker.) However, researchers have seen dramatic improvement with anti-viral drugs, which would have no effect on depression.

Unfortunately, anti-viral drugs, whether for AIDS or for CFS, are prohibitively expensive, costing tens of thousands of dollars a year. Ampligen, which was first tested on CFS patients in the 1980s, still is not FDA-approved, and, as an experimental medication, is not covered by health insurance. Very few patients are in a position to spend $20,000 a year for the rest of their life on Ampligen (when patients stopped taking it, they relapsed). For someone who contracts CFS at a relatively young age and has 50 years to live, that’s a million dollars out of their own pocket. For the average patient surviving on about $800 a month in Disability benefits, it might as well cost a million dollars a year.

Yet, assuming that it worked for me, enough to get me back to work full-time – I just saw a job comparable to the one I left advertised at $55,000. The government would easily get back in taxes more than the cost of providing a trial period of Ampligen to get me back on my feet so I could go back to work and start covering the cost myself. But, for all the arguments that disabled people should get off our lazy butts and go back to work, the government refuses to approve Ampligen for sale outside limited clinical trials, or to pay for therapies that would get millions of disabled people back to work. You’re expected to pull yourself up by your bootstraps, even if you cannot afford boots.

If you don’t, the perception is that you’re too lazy to work, rather than that you’re too poor to pay yourself for the therapy that might help.

 

 

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."

 

Tags: CFS, CFIDS, perception, reality, anti-viral, virus, Ampligen

Good News, Bad News

The good news coming out of last week's IACFS conference is that a professor at Stanford has had promising results giving patients anti-viral medication.  Which proves, unequivocally, that the problem is a virus and not something that can be fixed with an anti-depressant.

The other good news is that this medication is significantly less expensive than Ampligen, which costs $20,000 a year (... if you can get it, because it's not yet FDA approved).  This one is already FDA approved.

The bad news is that the medication costs over $1000 a month, and he starts with a six-month trial.  That means that anyone who is so sick that they are surviving on Disability benefits would have to pay every cent of their income (and then some) for the medication, meaning that only those who are independently wealthy or who have an employed spouse with dependant health coverage can benefit from this new treatment.

Since something like 3/4 of marriages affected by chronic illness break up, and those of us who had a nest egg before we got sick have long since spent it trying to stay alive for years until we were finally approved for Disability benefits, you can figure out for yourself what a very small number of the million American CFS patients will actually be able to afford the pills.

Without a job, you can't get a second mortgage (assuming you still own a house, or that you have any equity left after years of living off it while waiting for your benefits).  No one is going to loan a disabled person money on the promise that you'll be back to work in 6 months -- they've heard that snake-oil-fueled promise too many times before.  If you don't have that spare $12,000 a year in cash to pay for the anti-viral pills, you may as well resign yourself to the fact that you are going to remain too sick to work even though a treatment has been found. 

As for me, I found a dollar and bought a Lotto ticket for this week.  Wish me luck!

Tags: CFS, Chronic Fatigue Syndrome, cure, virus, treatment, anti-viral

Hired "Help"?

Had someone in to do some housecleaning last week.  I heard the box of CDs falling off the table, and just assumed that, having made a mess, the housecleaner was going to clean up the mess.

Wrong.  The CDs are still on the floor.

I was going to pick them up myself, but as soon as I bent over, I got lightheaded (as usual).  It wasn't worth fainting for, so the CDs are on the floor waiting for the housecleaner's next visit so they can be picked up by the person who created the problem in the first place.

And this has been the problem with many hired cleaners.  When they leave, I have a bigger problem on my hands because they have put boxes in front of the places that I need to put things away.  If I cannot put the Tupperware into the cupboard when it comes out of the dishwasher, then the Tupperware that had been in the fridge is added to the mess.  If I cannot get to the cupboard with the canned food because a heavy box has been placed where I need to stand to reach the cupboard, then I have to go buy more food, which adds to the mess, because I can't get to the cupboard to put it away.

At the moment, I can't get to the boxes where I store my needlework supplies, because someone thought it was an excellent idea to put a stack of boxes in front of them.  Which means, (1) I can't get to what I have, and (2) when I buy new stuff because I can't get to the old stuff, I can't put the new stuff away neatly, so it's still cluttering up the living room (though the clutter is receding as the yarn gets used -- I've been knitting a lot of clothes for a friend's grandbaby, so three bags of yarn is already down to one).

My house was MUCH cleaner when I was struggling to clean it myself, because I had enough brains to not block doors and drawers with heavy boxes that I couldn't move, which meant that I could put things away as they came into the house or out of the dishwasher. 

But as soon as I started hiring help, my problems started because they refuse to leave boxes in the middle of the room.  It makes sense to me to put the boxes away from the cupboards, so that I can get into the cupboards, but the only thing the paid cleaners see is that if they put the boxes in the middle of the room, I might trip over the box and sue them.  Being unused to dealing with the disabled, it doesn't register with them that I cannot simply move the box to open the cupboard.

And, as this incident demonstrates, the hired cleaners get focused on one task, and if they create a new mess in doing the task that they're focused on, they simply leave that mess for me to clean up because they don't see it as part of the task they were hired to do.

Tags: CFS, disability, cleaning, housecleaning, hired help

Since we have a cold snap coming (the worst in nearly 10 years), I remade the bed this morning with an extra comforter. (This is an old house with no insulation in the walls, so when it’s cold and damp out there, it’s cold and damp in here.)

The only thing I tucked in was the bottom sheet, and I was exhausted and out of breath before I even got to the pillowcases (which I decided to save till later). Nonetheless, it took me half an hour to just throw everything over the bed, and when I got the bedspread on, I simply collapsed on top of the bed, and started coughing up green gunk (which the doctor says is related to my asthma). The bending, lifting and stretching was too much for me.

After a while, I had enough energy to walk back to the living room and flop on the couch. When I got there, I realized that I’d left the bedroom light on, but didn’t have enough energy to go back to turn it off. Didn’t take long, and I fell asleep because I was so worn out from the exertion. My eyelids were drooping even before I got back to the couch.

That meant lunch was late, which meant that I was late starting my paid work, which meant that I didn’t get the dishwasher loaded as planned.

Those are the realities of living with CFS – when you try to do normal things like normal people, you wind up exhausted. The slightest exertion, like making the bed, can require an hour’s nap to recuperate.

Imagine how long your housework would take you if, in addition to each task taking several times longer than normal, you had to then rest for an hour or more after each one. No more cleaning the whole kitchen in one day – you empty the dishwasher and then cannot do anything for an hour. Then you go back and load the dishwasher, and again have to rest for an hour before you can fix lunch. If I’m having a good day, I can do 4 or 5 such minimal tasks in one day, but if I’m not doing as well and limited to 5 minutes total activity in one day, I’m lucky to even get 3 meals (one of which will probably be PopTarts or pre-made peanut butter and crackers, which I keep stashed under the bed and next to the couch).

What surprises me is the hired cleaners who don’t have CFS, and who accomplish less in 4 hours than I could myself. It’s clear that they work while I’m watching, and as soon as I walk away so I can lie down before I faint, they stop. One spent 4 hours in an already-spotless kitchen, and when she left, I found out that she hadnot done the one thing I specifically asked her to do (and paid extra for): cleaning the oven. I have no clue what she did in there for 4 hours. Maybe she wiped down the same three-foot counter a hundred times. Or maybe she rummaged through my cupboards to see if there was any silver or Waterford crystal. But whatever she did, it wasn’t what she was hired to do.

Another cleaner, after being specifically told "don’t rearrange the cupboards" did just that while I wasn’t watching. She was sure that she could organize them so they worked better for me, except that the things I use most often wound up in the back of the top shelf because she doesn’t cook the same way I do. Putting the kitchen back in order so that it works for me took more time than it would have to just clean the kitchen myself.

Yet, the judge wants me to waste my limited funds hiring these lazy incompetents to "prove" to him that I’m disabled. Some months, I spend more on housekeeping services than I earn, and am almost never happy with the results – they don’t want to do anything dirty or strenuous, they want to dust, which I’ve already done before they arrive.

When I ask them to put things away, they choose to put them in boxes "for me to sort", because they don’t want to spend the time putting Tupperware back in the cupboard – much easier to just dump it in a box and declare the job done. In 2007, I’m still looking for my business financial records for 2005; I knew where they were until someone decided the dining room table should be used only for dining (which hasn’t happened in years), and tossed all my paperwork into boxes. Not just one box, either. A little in this box, which then had some laundry put on top. A little in that box, which then had some canned goods tossed on top. A little in another box, which had some items bagged up for charity brought in from another room, unbagged and tossed in. A little in another box, which had some books put on top because someone who doesn’t read sees books only as "clutter" and can’t understand why the correct place for a book would be on the couch. A little in another box, which then had a plastic bag put on top, which I recognized as being the contents of the trash can that should’ve been taken outside to the big bin for pickup.

I ask them to put the clean laundry in the bedroom (where at least it’ll be closer to the drawers for me to put away, if they’re too lazy to do what they’re being paid for and put it awaythemselves), and they can’t be bothered – they put it in boxes under the dining room table, mixed in with papers, books, groceries, and anything else they’re too lazy to put away properly. When I pay someone $15-$20 an hour, I expect them to do what they’re told, not take shortcuts! And especially not shortcuts that make more work for me in having to re-sort things that were already sorted into neat piles.

Another cleaner neatly bagged up the contents of the recycling bin (which is marked as such) and stored it in the guest room, then used the recycling bin to store things that weren’t where she thought they belonged (instead of asking me if these things should be moved). Of course, with the recycling bin being used for storage, I had to find somewhere else to put the recycling, adding more clutter to the limited floorspace in a tiny house, and which doesn’t look as tidy as when I was properly using the recycling bin.

Frankly, I would be embarrassed if I offered to clean someone’s house for them and left it looking the way that hired cleaners have left my place. Yet, they somehow convince themselves that making a bigger mess is "doing a good job", that they’ve earned the $60-$80 they charged me to do basically nothing, and they pat themselves on the back for having kindly "helped the disabled". You have to wonder whether their own houses look as messy as some of them have left mine.

In the long run, it makes more sense (both financially and in terms of progress) to do the cleaning myself instead of paying someone to clean and then having to spend days cleaning up after the cleaner. It’s also less exhausting to do it myself than to have to unpack half a dozen boxes looking for the paperwork that I needed to take to my doctor appointment the next day, or the bills that need to be paid.

 

 

Tags: CFS, Chronic Fatigue Syndrome, cleaning, housecleaning, CFS/ME

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Tags: CFS, Chronic Fatigue Syndrome, free, freebie, 2007 calendar, download