Speak out about the Reeves definition delaying XMRV/XAND research

Dolphin

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Well, like I said, if you approach the problem using predictive analysis. You would use patients based on "Random Forest Prediction" models that satisfied the biomarker palette for CFS patients as your subjects. You can sceen for CFS using only biomarkers, Dr. Petersen has been studying these biomarkers for decades.
I understand (to some extent anyway) about research methodologies.

But you appeared to be accusing us of not doing enough for the people who don't have XMRV.

I personally, and I imagine most people reading this thread, won't be doing any "random forest prediction" models on data any time soon.

Oh, and depression can be caused by CNS infection, so I would not rule out all depressive patients.
One can be depressed under most definitions for CFS. Just most definitions exclude Major Depressive Disorders with melancholic features (possibly the severest form of depression). This is to try to help get consistent results in research so you are not comparing apples and oranges. The CDC empirical/Reeves definition allows people who just have depression to satisfy a CFS definition.

I don't think mixing people with CFS with people with depression (but not CFS) is the way to go for studying non-XMRV cases. I think studying the non-XMRV CFS cases on their own would be more productive.
 

PoetInSF

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Ironically, there is a bigger question here than the Canadian vs. Reeves definitions.
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Those who do not test positive would still fall into the CFS/ME category, which is in essence a diagnosis of exclusion/wastebasket diagnosis.
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I am not seeing a lot of discussion here about this issue of splitting the patient pool, but it could have a huge impact and create a public relations nightmare. Whatever leadership for CFS/ME exists needs to pay attention and get out in front of this issue. Now, not later.
I'd generally agree. However, it is all SPECULATION at this point. That's why we need CDC to do their own study first. If they don't, we may end up leaving up to 3 million people out of a possible treatment, or waste money on diagnosis/treatment for XMRV on them. And, if xmrv is indeed proven to cause a subset of CFS, then they will be split and given an official disease name whether it is XAND or something else. Then, the research will have to continue for the patients remaining in the CFS pool.

That said, I'd be willing bet money that CDC study will also indicate high correlation between xmrv and CFS if WPI study is true. 67% or 95% is stupendously high number and there is no way CDC study will show insignificant correlation unless: A) CDC is trying to actively deny CFS or B) WPI study is false. Frankly, I think too many people hold grudge against CDC and paranoid that there is a conspiracy by CDC to deny CFS. Being vigilant is one thing, trying to stop CDC from doing their own study will only hamper the progress.
 

Dolphin

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Here is an extract from Leonard Jason's paper on the Reeves criteria.

This is where the looked at people with CFS and also people with Major Depressive Disorder who were specifically chosen not to have CFS. But 38% came out as satisfying the Reeves' criteria for CFS:

Therefore, 100% of the CFS and 100% of the MDD/CFS group met the CDC fatigue criteria. The problem with this instrument is that it is relatively
easy to meet criteria for one of the two categories. In other words, a depressed person could easily respond positively to questions such as “I get little done” or “I do very little in a day” and answer negatively to “I feel very
active” or “I think I do a lot in a day.” Consequently, a depressed person would meet CFS criteria by answering “entirely true” to these types of items.

Inspecting the scores of a person with MDD who was inappropriately classified as having CFS highlights the problems with the CDC empirical criteria. A 26-year-old female with MDD met criteria for CFS using the CDC
empirical case criteria (Reeves et al., 2005). For the Medical Outcomes Survey Short-Form-36, she met cutoff points for Social Function (scoring 37.5 when needing to score ≤ 75) and Role Emotional (scoring 0 when needing
to score ≤ 66.7). With a clinical diagnosis of MDD, she demonstrated impairment with social and emotional functioning, two important traits of depression. This person scored 100 on Physical Function, which is the
highest possible score on this measure, indicating that she had no difficulties with physical functioning, which would be a clear indicator that she did not have CFS. On the CDC Symptom Inventory, she reported that postexertional
malaise was mild only some of the time, indicating that she did not have this cardinal symptom of CFS.

For this individual and others within the MDD/CFS group, the instruments used to identify cases of CFS did not adequately exclude persons with primary psychiatric disorders.
I can see the point that it might not be the end of the world if the empiric/Reeves' criteria is used for the XMRV research if the test is so good and perhaps it might help to bring down that definition.
 
K

_Kim_

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Watching as Wanda's nervous right thumb keeps moving faster as the CFS patient on the phone talks about her heartbreaking story.
 
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anne

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Yes, the CDC is *NOT* going to find XMRV. Reeves already told us that. the sample they are working with does not actually have CFS. So waiting on their study will give us nothing. We can wait on the research of people with real CFS cohorts, yes. But the CDC is not going to help us, with the current leadership.

But tomk's point is terrific. If we get other replications and the CDC can't reproduce it with the sample, then there's something wrong with the sample.
 
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anne

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Well, Annette said it was the first she'd heard of it, so they may not be. I hope someone does some more digging.
 
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anne

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As long as that new authority does the research on people who actually have CFS, but this morning they said they'd be using the Wichita sample. With any luck, they can be persuaded to change.
 

InvertedTree

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I'm on the westcoast and coming into this late. sorry. does anyone know the woman's name who just spoke about patient's not having a doctor?
 
K

_Kim_

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Terri, I think that was Rebecca Artman who spoke about patients not being able to find doctors to treat CFS
 
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anne

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Okay, Levi. Thank you. I do agree. Other people will replicate the study using actual sick people. Science will out.
 
K

_Kim_

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Hi to everyone.
This is my first post.

I think Jonathan Kerr will do it properly.
Kerr is using patients from Dr. Enlander's patient population (NYC) as well as from the UK. One of Enlander's patients is on this forum and if remember correctly, she was going today to get her blood drawn for the study. Yes, Kerr is a good candidate for replication.
 

PoetInSF

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As long as that new authority does the research on people who actually have CFS,
Who are these people who actually have CFS? Those with xmrv? Do the xmrv-cfs study on people who actually have xmrv? You people talk as if CFS is objectively testable/diagnosable disease. It is not. It is all empirical till they find some biomarker that closely correlate to CFS as defined currently, be it Canadian or CDC. The studies will tell us about either/both the viability of xmrv as the biomarker and the validity of definitions. Hang in there, suspend your paranoia for now and let the scientists do their work.
 

Marylib

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Pardon me, Poet in SF, but are you saying that a CFS diagnosis does not exist? Do you mean that it is not possible to diagnose any illness without a biomarker?
 
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Who are these people who actually have CFS? Those with xmrv? Do the xmrv-cfs study on people who actually have xmrv? You people talk as if CFS is objectively testable/diagnosable disease. It is not. It is all empirical till they find some biomarker that closely correlate to CFS as defined currently, be it Canadian or CDC. The studies will tell us about either/both the viability of xmrv as the biomarker and the validity of definitions. Hang in there, suspend your paranoia for now and let the scientists do their work.
Jeez poet ... I think you raise good points at times, but calling people who don't share your perspective paranoid may not be the best way of conveying your ideas and getting them taken seriously.

in my tired, blunt manner: to me devil's advocate, difference of opinion, scepticism and lively debate are all good; disrespect is not

do hope I haven't offended you and that you stay on the forum and continue to contribute

islandfinn:)
 

Marylib

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Well said, Islandfinn. I hope Poet will continue to contribute. But this forum has maintained such a lovely tone of respect -- even when the discussions are heated. And it would be good if we could manage to keep it up.
 

Dolphin

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You people talk as if CFS is objectively testable/diagnosable disease. It is not. It is all empirical till they find some biomarker that closely correlate to CFS as defined currently, be it Canadian or CDC. The studies will tell us about either/both the viability of xmrv as the biomarker and the validity of definitions.
There is also something called "face validity" in science e.g. when analysing questionnaires (do they look like they could be useful).

The Reeves criteria have very poor face validity for CFS. Rather than keep telling us we are paranoid, maybe read the definitions and decide if you would say that's a good way to pick CFS.

I have read them and think the Reeves criteria are a joke.

Of course everyone in society is worthy of study. But the Reeves criteria aren't a good place to start if you are going to have two groups XMRV+ CFS and XMRV- CFS. With the Reeves criteria, the XMRV- CFS is going to be a huge mess - finding the proper CFS patients (e.g. the ones who have an abnormal response to exercise) in that will be like finding a needle in a haystack.