Wednesday, May 14, 2008

Countering Reeves "Empirical Definition"

Thanks to my good buddy Steve for this one:

Re: Tom Kindlon's post yesterday regarding Dr. Reeves
remarks, we know that we have very good studies to argue
against the Dr. Reeves remarks.

Dr. Leonard Jason wrote excellent counter arguments to
Dr. Reeves' "empirical definition"
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

Also, from the IACFS-M. E. Conference
Jason, L., Porter, N and N. Najar. Evaluating the CDC
criteria for an empirical case definition.

The CDC believes that the Fukuda definition is so vague 'that it is
essentially impossible to compare results between studies critically"
and that this definition has contributed to difficulty CFS
researchers have in replicating study findings.

Two years ago the International CFS Working Group (ICWG) convened by
the CDC recommended that the Fukuda definition be revised to better
characterize the fatigue, disability and symptom severity found in
CFS. The ICWG suggested that several different tests be used; the CDC
took two of them (SF-36, MFI) and added one of its own (Symptom
inventory) and then came up with criteria it proposed would
differentiate CFS from CFS-like patients. These tests consist of a
series of questionnaires that examine different aspects of fatigue
(mental, physical, etc.), disability (mental, physical, emotional,
etc.), etc. People scoring at the 25th percentile or lower on one of
the questionnaires from each of the tests are deemed to have CFS. The
CDC now uses this definition to determine which patients it will
include in its CFS studies.

Except for the symptom index, the tests in the new definition are
standardized tests used to measure fatigue and disability in diseases
for many years
. Dr. Reeves is proposing that if you are fatigued and
disabled to some extent and have a certain symptom profile and don't
have any other diseases, then by definition you have CFS.

This new definition is a radical departure from past definitions.
Other attempts at a CFS definition have focused solely on finding the
right symptom profile for CFS and a consensus has emerged in North
America regarding how CFS presents itself symptomatically; the
Canadian Consensus and the IACFS Pediatric definitions are remarkably
similar. The CDC clearly believes that symptoms cannot be used to
differentiate CFS patients from CFS-like patients and it has some
evidence for this - a large study that attempted to do so failed.
Dr. Jason, however, pointed out that several of the questionnaires in
the SF-36 and MFI concentrate solely on emotional or mental aspects
of fatigue and disability. Two SF-36 questionnaires focus on
emotional problems and mental health and one MFI questionnaire
focuses on reduced motivation. This suggests that under the new CDC
criteria fatigued people with emotional problems but not necessarily
with the physical components of CFS could meet the criteria for CFS
and participate in CFS studies. In a small study Dr. Jason found that
40% of patients with major depression qualified for CFS
.

This, of course, suggests that future CFS studies by the CDC could
have an increased component of patients with depression or other mood
disorders. This may already have happened; the recent Heim study
employing the empirical definition found that 62% of the sample had
evidence of early childhood abuse of one type or another. This
contrasted with a study employing the Fukuda criteria that did not
find high levels of childhood abuse.
It bears noting, however, that
people diagnosed with major depression (with melancholia or
psychosis) in the last five years are excluded from participating
from CFS studies under the new definition.

Dr. Jason also argued that these criteria were developed more or less
arbitrarily; that they were derived using judgments rather than
scientific analysis. This was rather ironic given the fact that
arbitrariness was one of the arguments Dr. Reeves used against the
Fukuda definition. Although the components of the empirical
definition were vetted by another international group, the definition
itself was not. Indeed it appears to have been developed much like
the Fukuda definition, as Dr. Reeves put it, by a small group of
people (Dr. Reeves and his research team) in a 'smoke-filled room'.
In the definition paper Dr. Reeves and his team acknowledged that
"one could debate our choice of specific subscales¼ .and the specific
cutoff values we chose".

The definition of CFS ought to be a biomarker and Dr. Jason suggests
that it be identified and undergo rigorous testing to ensure that a)
it includes those that have CFS and b) it does not include those that
do not have it. The CDC has shown that empirical definition does a
better job than the Fukuda definition at the first, and it has been
involved in testing different aspects of it, but it has not checked
if people with other diseases might also meet this new definition for
CFS. In most cases it doesn't have to - most are excluded from taking
part in CFS studies anyway.

Dr. Reeves' analysis did find that the empirical definition did
successfully differentiate CFS from CFS-like and healthy people -
something neither the Fukuda definition nor symptoms have been able
to do. Interestingly the three subjects in which the CFS patients did
not differ from the CFS-like population had a psychological or mental
basis; they were motivation, role emotional and mental health. The
empirical definition was able to target a group of CFS patients in
which a category called 'role physical' was, in contrast to the
CFS-like patients, strikingly important. This suggests the definition
did single out a distinct group of patients.

This is an ongoing battle to define CFS and it is a very important
one. If a new group of patients that differs from the type of CFS
patient now studied is selected for new studies, then their presence
will alter both the findings and direction of CFS research. Whether
or not these CFS-like patients are similar or not to 'CFS patients'
it is clear that there are a lot more CFS-like than 'CFS' patients
out there; this year for a short period the CDC boosted their
estimates of CFS prevalence 4-fold to 4 million.

Two things at least are clear; the CFS research community needs to a)
come up with a good definition and b) the entire research community
needs to use it. No matter how good a definition is, if it is not
used by the majority of the CFS research community, then its
introduction will only further muddy the waters.

Toward a (Real?) Empirical Definition of CFS?
Leonard Jason, Karina Corradi, Susan Torres-Harding. Toward an
empirical case definition of CFS. (Poster)
Whether or not the new CDC empirical definition needs to be changed,
Dr. Jason is bringing up questions that need to be asked. In this
study he outlines an empirical way to come up with an empirical definition.

In this study he gave 114 CFS patients questionnaires regarding
symptoms associated with a range of different systems including the
vascular, inflammatory, muscle/joints and others. If I understand
this correctly he found that using these symptoms provided a better
biological interpretation than did using those associated with the
Fukuda definition. He was able to identify four clusters of patients
(subsets) with distinct symptom presentations. He noted two of the
clusters identified could not have been assessed using the Fukuda
definition. This means that a much broader range of symptoms need to
be assessed in CFS than the seven or eight present in the Fukuda
definition and that important symptoms in CFS have been missed.

This study leapfrogged over the question of how to define CFS in
general and went to what may be an even more important question;
Identifying coherent subsets in CFS. We often think of a biomarker as
a kind of holy grail in CFS research but defining coherent subsets
would, if anything, have even more importance. Being able to do would
constitute an evolutionary leap in our understanding of CFS, lead to
more significant and replicable study findings and initiate the
breakup of the CFS label. Given the worries about the vague CFS
definition and the subsets, it is unfortunate that it took 15 years
to get this type of study accomplished.

To its credit the CDC has already looked at that question of symptom
presentation in CFS and CFS-like patients; they found that, even
using an expanded symptom list, the two groups looked very similar
symptomatically and they could not differentiate them. They, of
course, also attempted to derive subsets using the voluminous data
set generated by the Wichita studies.

We end this section with a question asked by Mary Schweitzer at the
conference that bears on this issue, "How do we get homogenous sample
groups for CFS studies?"

Dr. De Meirleir stated that the current definition was created before
researchers had any idea of possible biomarkers in CFS. He thought
the definitions will hold for only a few more years. Once researchers
identify the different mechanisms present in CFS, the present
definitions will fade away.

Steven Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org

A Call for Proper Terminology

DebO writes:

We need, in every way possible, to stop researchers, press, etc. from
using the word "fatigue" on its own to describe the ailments
of  Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrom (CFS).
To be accurate it should be part of a description that includes
symptoms I and other suffer, such as extreme weakness (too weak to
sit up, too weak to read, even too weak to watch TV), debilitation,
incapacitation, disabled, totally spent, exhausted and exhaustion,
pooped out, wilting, flagging quickly, collapse, My favorites for
widespread description of ME/CFS are "totally debilitated," "extreme
weakness," and "constant exhaustion." The point is to get away from
this wimpy, undescriptive and often inaccurate word "fatigue," which
makes people believe, as many have said to me "oh, I thought you were
just a little tired."

My Webster's dictionary gives the commonly understood definition of
fatigue: "loss of power resulting from continuous work but removable
by rest." Obviously the last clause makes "fatigue" a misnomer for
those of us suffering from ME/CFS.

Language is important. Language is what shapes the world. People
can't take us seriously if they think our only problem is the feeling
they normally suffer after a long day's work or three mile run. They
recover. We  don't.

By the way, since the name ME is scarcely known in the US, I have
vowed to tell people I have Chronic Epstein-Barr. It's technically
true and at least I don't sound silly and self-indulgent.

You're not alone in losing friends after illness

John found this on WebMD.  It's a story most CFS patients tell -- we can't do the things our friends can so they drift away to people who share their lifestyle, or they are afraid they'll be asked for help and stop answering the phone.  This is why there are so many support groups, where you can find friends who *are* willing to listen.  We may not be able to clean your house for you, but we're shoulders to lean on, and sources of wisdom when, like this poster, you're beating yourself up over something that's not your fault.

Loss of friendships

I'm in need of some direction from a different perspective ....hopefully, you'll give me your opinions as to what you see is wrong. This is kind of long, I apologize for the length.
This is kind of a two fold question My husband & I are adult mid 50's & have been married 35 yrs. One of our dearest friends "Scott" we have watched grow up from a kid into a responsible adult. He is not married, and approx 10 yrs younger than us. He has been our dear & close friend for many, many years. He usually stops over 3-4 times a week, eats with us at least 2 times a week ( he loves my cooking), helps my husband do chores, visits, has cocktails w/us, fools w/ our dog etc. He generally makes himself at home here, without taking advantage of us, nor do we take advantage of him. Both of us love and like him, and we assumed it was a mutual friendship.He would help us at the drop of a hat if needed. My husband has always given him small loans when needed, and he's promptly paid us back.

I had a life threatening heart surgery in 2001, where I was in an out of town hospital for 3 weeks, and my husband worked days, & made the 1.5 hr drive to see me everyday, after work. Scott offered to help w/ chores & the dog to help my hubby out a couple days a week to give my husband a well needed break . This was much appreciated & All was fine & dandy. Once I got home, I was very ill, emaciated, and of course scary looking with the chest and leg vein scars. Scott came to see me one time. We then didn't see or hear from him again for several months. I figured "my appearance" from the illness probably scared him off.

Our friendship was never as tight again. Scott seemed to distance himself from us, but claimed we had done nothing wrong. He still stopped by, but maybe only once or twice a month. Why? I still ask this, Why?

Now (2008) we haven't seen or heard from him since last October, when he stopped and asked for a small loan ($20) and hubby gave it to him. He will not return hubby's or my phone messages, phone calls, refuses to stop by, or let us apologize for what ever we did to apparently offend him. I have begged him to come talk to us, and so has my husband. Last week as we backed out of our drive we met Scott on the road head on (he knew it was us) and he completely ignored the two of us waving...and simply looked the opposite direction. Needless to say, it was a shocker, we are both very hurt and upset over this. Both of us have lost sleep. Neither of us has a clue as to what we may have done to upset Scott. I'm at loss for what to do next? We don't want to give up on him, as he is our friend! My last words to him in a phone message was... "It takes less effort to let a friendship die, than it does to keep one going....and I know that he is a 200% giver at whatever he does....this is why we're both so confused , and feel a simple explanation is not too much to ask of him" Am I wrong? As I re-read this, it almost sounds childish or teen-like question.

I'm beginning to think that we are possibly an obnoxious or disgusting couple or something....it's making me doubt myself, & my husband. We take our friendships seriously, and expect the same in return. What should be our next step? Or do we take the hint, and just go lick our wounds? This just seems so unfair!

Sad part is....I was shocked at how many of my so called close friends avoided me ..like the plague, after i was so ill. Yes, they came to visit me in the hospital....but faded into the wood work after I returned home. Somehow, things were never the same . I hope no one here is going through this. I know it left a mark on me much deeper than any surgery could ever scar. 7 Years later, I still cry about it. There is absolutely NOTHING on the web about loss of friendships after an illness.....and why or what makes people act in this manner??!! I think it's horrible, & I don't understand it. Please someone explain! Lilly

Replying to: Loss of friendships
Hi Lilly,

I've lost friendships too, sometimes I know why, sometimes it's been me choosing to end a friendship, other times it's a mystery and I had to learn to let it go. (I also have found it interesting to discover who sticks around and who doesn't when dealing with health issues, loss and divorce. It can be pretty eye opening.)

It sounds like you have done all you can to find the 'why' in this situation and it may never come. I doubt you've done anything to cause this and you may be guessing in entirely the wrong direction.

I hope you can get to a place where you can accept that sometimes people come into our lives for a reason, they enrich ours and vice versa, and then they move on. That change doesn't negate all that went before and we can be thankful for the time we did have with a friend.

I know all that is easier said than done. I can feel the pain in your words. *hugs*

Perhaps others will have some ideas for you.

Replying to: Loss of friendships
Sometimes I think people avoid things out of guilt. I know I do at times. I also think people avoid things out of fear. With you guys being as close as you were, maybe he was afraid for the worst, and couldnt handle it? And then because of his guilt, about leaving you guys in your worst is what keeps him from coming back?

Sometimes when I am angry or upset with someone and we have a fight...its my own guilt that keeps me from making and apology because I feel ashamed.

When people are afraid of losing something they love, they can distance themselves. Well, thats what my one psych professor told me and in a way I kinda agree. When my nana had cancer, dont get me wrong I LOVE my nana more than anything...but i was afraid to see her because she looked so ill. It scared me, and every time I saw her I was afraid I would never see her again. I was really scared. Shes fine now and beat the cancer . Thank god.

Im sorry for your loss though . Perhaps with time he will come around? I hope so! Good luck.

Replying to: Loss of friendships
Hi I know I lost friends after my loss..But i found out these people weren't true friends i'm sorry to say.....something to think on......It's not your fault anyway.

Replying to: Loss of friendships
I h ave Fibromyalgia, Arthritis and other paroblems which makes me home bound mostly.I just hurt every day. MY best friend is very active, lives 5 hours away and goes and does all the time. It is a treat just for me to eat out. Her lifestyle is much more lavish than mine. I dont have much to talk about, no cruises, trips or plays to talk about.We only have our past as High School buddies to talk about. We once were very close but gradually our calls are less, our e-mails are less just a "separation" I think by the lack of money and health. All of a sudden they got on cable and she watches tv shows, has to sit with her husband and "cuddle" (married 56 years) and watch the news at ten. We used to talk almost every night for a couple hours. I guess I have become dull and uninteresting have told her all the High Sschool gossip I knew,so since I sence no change in my situation, our friendship will get colder and colder. I think your friend"used" you, and now feels that he can't "use" you and feel the same about it. There will be some guilt there where before there was not. It's not your fault, forget HIM.

Replying to: Loss of friendships
Dear LillyLu1954, I have seen this far too often in life. There are those who stay and help you & those who run away when there is illness. You and your husband did nothing wrong. Unfortunately, your friend has let his guilt over his poor behavior keep him from being friends with you any more. Seeing you reminds him of his own shortcomings. He just cannot face illness or the threat of losing you so instead he loses both you and your husband by his misguided coping mechanism of avoidance. It is very sad. It is horrible. I have had it happen to me with some people I thought were very close. One who was supposed to pick me up at the hospital after surgery bailed on me the day before because she had to pick someone up at the airport instead. (Huh?) Another who somehow never asked me about how I was doing with the life-threatening illness I had been diagnosed with and when she was reminded of it didn't remember. Who forgets something like that? Someone who doesn't want to think about anyone else at all. It is bad behavior. Every religion has certain basic acts that everyone must do: comfort the sick, feed the hungry, clothe the naked, bury the dead. In Judaism they are called mitzvahs - not good deeds - just basic human decency and respect for each other. In Catholicism they are the corporal acts of mercy. Your friend is missing out on a lot. I have worked closely with terminally ill people and have had many special experiences with the dying that have enriched my life. Your friend will never have such an experience. The loss is his. He is missing out on a lot. Not just the good friendship of you and your husband, but also the knowledge that he could have overcome his obstacle and made himself a better person. I have also had friends who deserted me after a death in my family. Shocking but even sadder for the former friends that that is the kind of people they are. I wish you good luck and good friendship from others. Beileen

Replying to: Loss of friendships
I have came to learn that sometimes friends are seasonal. It would probably be wise if you learned to just let go. Cherish the friendship you once had. People change! Linda

Tuesday, May 13, 2008

Substantial CFS Research Library Available FREE

Research Articles from 1984 through fall 1998 available free.

I have a pretty comprehensive collection of all CFIDS research from
1984 through Oct 1998. It is in 5 filing cabinets, alphabetically and
chronologically filed. I am moving and can not keep these papers. The
papers are housed just south of Boston and I am willing to give these
away but someone has to be able to retrieve them. The majority of
these medical research articles are from spending an inordinate
amount of time at the NLM Library and out of pocket costs for
copying. I would hate to have to throw this body of work away. The
CAA has no room. If you are interested please contact Nancy at
NBSyNot@aol.com or call 781-961-1819 and leave a message.

Nancy Smith

Monday, May 12, 2008

Could it be something else?

This is the first thing you receive when you join the CFS Facts Yahoo group.  If you're newly diagnosed or waiting for a diagnosis, it's recommended reading to be sure that you're getting the right treatment -- too many doctors misdiagnose out of ignorance, and it's important to get the right treatment for the right disease as quickly as possible.


COULD IT BE SOMETHING ELSE?

Yes, it certainly could!

Since there is no definitive blood test for CFS, and many of the tests that will show a problem are not commonplace (either very expensive or available in only a few locations), there are many other diseases that it could be instead. Some have many similar symptoms, some have only a few.

The first alternative is a simple, garden-variety case of the *symptom* of “chronic fatigue”. A lot of doctors (including some who hold themselves out as CFS specialists) don’t realize that chronic fatigue and Chronic Fatigue Syndrome are not interchangeable. You’ll hear us tossing around a lot of symptoms like lightheadedness, full-body excruciating pain, sore throat, swollen glands, fever, digestive problems... if you don’t have those symptoms, the odds are that your doctor is one of those who think CFS simply means you’re always tired. In fact, CFS affects the functioning of the whole body because it affects the central nervous system and causes all those dysfunctions in addition to the fatigue.

Simple fatigue can be caused by ailments as varied as anemia, diabetes, cancer or psychological stress, or by lifestyle such as overwork or a sleep disorder. If you don’t recognize the other symptoms we’re tossing around on the list, we strongly suggest that you get a complete work-up (including psychological evaluation) to check for another cause of your fatigue.

The diagnostic criteria for CFS require that the fatigue be “medically unexplainable”, i.e., that all other fatiguing illnesses must be ruled out. While it is certainly possible that someone with CFS could have something else in addition to the CFS, that something else *must* be treated first, to rule it out as a cause of the fatigue. If your doctor diagnosed you with something else and CFS at the same appointment, he is making the common mistake of thinking that you have CFS because you have chronic fatigue. The diagnostic criteria for CFS, however, require that your other condition must first be brought under control with medication appropriate to that condition, and you still have debilitating fatigue that cannot be explained by that condition.

Another common mistake is thinking that CFS is another name for depression that doesn’t carry the stigma of mental illness. But many symptoms of CFS are not commonly seen in depression. Dr. David Bell writes “The symptoms of CFIDS include joint pain, visual disturbances, muscle pain, sore throat, lymphatic pain, fever, chills, night sweats, urinary frequency, paresthesias (numbness and tingling) and skin rash, none of which are traditionally felt to be symptoms of primary depression.” A depressive who is pushed to exercise will return energized, due to the endorphin rush; a person with CFS who is pushed to exercise will return exhausted and feel worse for 24 hours or more, because of an abnormal physical response to exertion. Unfortunately, too many doctors are unaware of this simple and inexpensive way to differentiate between the two, and force anti-depressants on people who have CFS. Research has repeatedly proven that anti-depressants are useless for the treatment of pure CFS (they do help those patients who have both CFS and depression); if the anti-depressants make you feel better, you may have depression and *not* CFS. On the other hand, if they don’t help at all, or make you feel worse, then you probably have CFS.

Some doctors misdiagnose CFS as “atypical MS”, because the two do share a number of neurological symptoms. Again, there’s a very simple and inexpensive way to differentiate: heat makes CFS patients feel better and MS patients feel worse. Sit outdoors for a few hours on a hot summer day, and see what happens. Dr. Bell points out that “MS patients rarely have muscle pain, lymph node pain, rash or sore throat.”

Lyme disease also shares many symptoms with CFS. If you live or hike in an area where Lyme is prevalent, it’s worth having the test to rule it out. But, again, although there are a number of symptoms that overlap, there are also a number of symptoms that are not shared.

Some doctors try to treat CFS with thyroid medication. While it is true that some patients do suffer thyroid problems as a result of CFS (request the more sensitive test, which tests for both T3 and T4), personally, I have some symptoms from the hypOthyroid list and some from the hypERthyroid list, and my thyroid test was perfectly normal.

If you are female, and anywhere near middle age, some doctors will try to tell you that all your problems are caused by menopause, or perimenopause. Yes, that can cause night sweats (hot flashes) and fatigue, but again, there are many many symptoms of CFS that are not commonly associated with menopause. And, of course, if you’re male, this diagnosis is absolutely impossible!

An old friend who is now an allergist with the Mayo Clinic believes CFS is caused by allergies. I think he has it backward – I didn’t have allergies until I developed CFS. However, if you have a really bad time with allergies, you should have the allergies treated to rule them out as a cause of the fatigue before the CFS diagnosis is made. Similarly, chemical sensitivities can cause fatigue, but a large number of CFS patients report developing chemical sensitivities only after they got CFS.

In patients born before the polio vaccine was available in their birthplace, there is a possibility that the symptoms are caused by Post-Polio Syndrome. According to Dr. Richard Bruno, it’s not necessary to have had full-scale polio to develop PPS; many patients had “Summer Grippe”, a low-grade variant of the polio virus. In the US, the polio vaccine was given to almost everyone by the early 1960s.

Autoimmune disorders, such as rheumatoid arthritis, lupus and Hashimoto’s can also cause symptoms similar (but not identical) to CFS. You should be tested for these before a CFS diagnosis is given.

There’s a “complete” list of CFS symptoms in our Files section (though not every patient will have every symptom). If you have symptoms that are *not* on that list, you may have been misdiagnosed with CFS, and it would benefit you to get a correct diagnosis so you can get the proper treatment.

However, if you’ve read complete symptom lists for the other “look-alikes” in this article (available on other websites), and none of them sound quite right, then it’s highly possible that you really do have CFS, and should find a CFS specialist – or at least a CFS-friendly doctor; there are several lists of them on the web.

Thanks to AFFTER for this one

This graphic says it all:

More CFS/Fibro Blogs

Rachel is assembling a list of people who have blogged about Awareness Day

http://rachelcreative.wordpress.com/2008/04/18/blogging-for-me-cfs-2008/

If you're looking for other blogs, links will be there.  If you've blogged about it yourself, let her know to add your link.

HAPPY AWARENESS DAY!

It's CFS/Fibromyalgia Awareness Day!

For those who don't know, the date was chosen because it's Florence Nightengale's birthday -- in later life, she spent a lot of time resting because of some disease described in a way that sounds suspiciously like CFS.

At least this year, we can look back on a year of significant medical advances.  We've gotten Lyrica FDA-approved for fibro.  We've gotten more evidence of biological abnormalities in CFS to permanently defuse the critics who think it's just psychological.

There's still a long way to go, but we're headed in the right direction.

To my fellow patients, Happy Awareness Day!  To our dedicated researchers, thank you from the bottom of our hearts.

Sunday, May 11, 2008

WARNING: Cats and Lyrica Don't Mix

If you're taking Lyrica, be careful not to set your pill down even for a second. 

A friend found out the hard way that cats love the stuff; apparently the emergency clinic has seen multiple such situations in just the few months that Lyrica has been out.

Other than the expense, all's well that ends well in her case, but don't risk it with your pet: the pill is either in the bottle or in your mouth.