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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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The Non CFS 'CFS-ers'

Discussion in 'Latest ME/CFS Research' started by Cort, Dec 15, 2010.

  1. Cort

    Cort Phoenix Rising Founder

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    This is a fascinating article because it demonstrates what a large percentage of people referred to the specialty fatigue clinics do not have CFS and then indicates what they did have. Forty percent did not have CFS.

    Twenty percent had undiagnosed sleep disorders, 15% psychiatric diagnoses and 47% another chronic disease. 15% percent remained undiagnosed. This indicates how important it is to get good sleep studies done - since many times those can be treated.

    Komaroff did a similar study but used EEG's to show that many of the people doctors thought had CFS did not - which indicates a couple of things....the doctors were missing alot of other diagnoses and they were often times trying to treat something (if they did try, that is), which the people did not have.

    I'd love to get this study and see what the alternative diagnoses were.

  2. urbantravels

    urbantravels disjecta membra

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    I wonder how many of the non-CFS 'chronic fatigue' patients would have been immediately identified as non-ME/CFS by a strict application of the Canadian Consensus Criteria?
  3. Cort

    Cort Phoenix Rising Founder

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    I imagine a PEM requirement would have knocked alot of people out immediately. Dr. Lerner wants to have his energy scale on every doctors wall; really there should be a Canadian Criteria Chart - or a short list of criteria - that would cut this really, REALLY high rate of misdiagnosis at the primary care level down alot.

    Reduce the diameter of the 'wastebasket' quite a bit :)
  4. Sasha

    Sasha Fine, thank you

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    Fascinating - I keep arguing the toss with NHS people about their "evidence based" treatment, pointing out that their selection of patients is so disastrously poor using their rubbish criteria that they don't have evidence about anything. Nice to have some more data to back that up.
  5. Cort

    Cort Phoenix Rising Founder

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    Primary care doctors don't know diddley about CFS in the US. I imagine its even worse in the UK; they actually think they know because the govt is trying to educate them about it (?) - and use the Oxford criteria - which screws things up even more.
  6. Sasha

    Sasha Fine, thank you

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    Totally - my impression from dealing with NHS physiotherapists, occupational health people etc. is that they're trained to say that there is "evidence based" treatment but when pressed it's clear they haven't read the evidence for themselves and don't understand some fundamental principles of true evidence-based medicine, the first of which is, "define your patient population". It's clear that they come out with this stuff in anticipation of arguments with patients.
  7. George

    George waitin' fer rabbits

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    I think this is what the NIH is going to try to address this year. The new NIH-ME/CFS website, when it finally goes up, will likely look a lot like the Carruthers check list. I'd bet a year of good bones that the PEM will be a definitive marker.

    Just guessing now but I think that we will also get biomarker test this year. There are a slew from which the NIH can pick that are already well documented. So I'm guessing that 2011 is going to the year that ME/CFS becomes a real disease with real tests and everything. (grins)

    I'm thinking and I could be wrong that in the minds of the NIH personnel XMRV it's self is not definitive with ME/CFS even though it's likely the cause of ME/CFS it's also likely the cause or perpetrator of other aspects of other illness as well so we don't get a lock on it, at least in the minds of the higher ups. I think the next couple of years will start to tease apart the role XMRV and other tissue based retroviruses play in illness's. ME/CFS will be one of the major illnesses but it looks like not the only illness.
  8. urbantravels

    urbantravels disjecta membra

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    From the puppy's lips to God's ears!

    My HMO did a very rigorous job of testing me for other conditions...rather expensive tests some of them...even conditions that didn't come anywhere close to fitting my symptoms other than being "fatiguing" diseases. I went to a passel of specialists, had my blood cultured, they looked for Valley Fever, did *two* 24 hour urine collections (my, those are fun) ... but at no point in the process did anyone ever sit down with me with a detailed symptom checklist of any kind. They barely seemed to have time to listen to my best summation of what my symptoms were before ordering up another slew of tests. It occurs to me that this was not only a lot of wasted effort (and anguish for me to go through; you never saw anyone get so upset at repeatedly getting the news "your test is fine") but wasted money for them.

    And they spent all that money in order to finally deliver me to the 'wastebasket diagnosis' and plop me back on my overworked primary care doc...who is sympathetic, but not any more knowledgeable about CFS than any of the rest of them, and really shouldn't be asked to provide specialist care to a patient with a serious, chronic, disabling disease.

    I will REALLY be excited if the NIH comes out with a website with diagnostic criteria that look more like the CCC. I will look forward to sharing that information with the infectious disease doctor I just saw earlier this month, who advised me that if I wanted to know the real deal on CFS, I should check with the NIH and most especially consult the latest opinions of Stephen Straus.
  9. floydguy

    floydguy Senior Member

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    But is there any progress in a better PEM analysis than what Lannie has reported from the University of the Pacific? Even if that test is universally accepted having to go to one of only a handful of such centers for an expensive two day test is not an ideal bio-marker.
  10. floydguy

    floydguy Senior Member

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    I've always believed the percentage of people wrongly diagnosed with CFS is high. The medical system does not seem to do difficult. After a couple of tests they give up and blame the patient by throwing them into what can be the wastebasket diagnosis of CFS. And I include myself in that!
  11. urbantravels

    urbantravels disjecta membra

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    We still need a bio-marker; the advantage in doctors, especially primary care doctors, in knowing something about the true *clinical presentation* of ME/CFS is that they would narrow in on the culprit much sooner and more accurately.

    Misdiagnosis as a result of sloppy clinical evaluation cuts both ways; people with true CCC ME/CFS don't get accurately identified, and people with something else that's fatiguing are in danger of getting shunted into our wastebasket instead of getting the proper diagnosis and care for the condition they really have.
  12. Cort

    Cort Phoenix Rising Founder

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    That would be so great! The NIH Workshop in April will be very interesting...Will they discuss the CC? It's hard to imagine there won't be a diagnostic section...

    Pacific Fatigue Lab got turned down for an NIH study a couple of years ago - despite their great preliminary data....A recent study did come out that validated their results...
  13. CBS

    CBS Senior Member

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    Here's the pdf: http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf

    From Table 1
    # - Disease
    8 - Metabolic syndrome
    13 - Neurological disorder
    9 - Connective tissue disorder/autoimmune disease
    1- Medications
    3 - Pain
    5 - Fibromyalgia
    2 - Coeliac disease
    1 - Overtraining syndrome
    1 - Cancer
    Others:
    1 - Low body mass index
    1 - Haemochromatosis
    1 - Microprolactinoma
    1 - Lyme disease
    1 - Immunocompromised
  14. CBS

    CBS Senior Member

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    I hear that the Lights (Alan and Kathy) are working on something that could hit the presses in the not too distant future. Ironically, XMRV actually put the brakes on the development of a commercially available biomarker test that was derived from the study they published in last year's November edition of the journal Pain. The potential manufacturers did not want to invest significant capital in something that might be obsolete before it was even marketed. I hope that the last year has highlighted the need to keep moving forward on all fronts.
  15. George

    George waitin' fer rabbits

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    Hey floyguy
    This is just my take on things but I doubt that PEM will be tested since it's too much of a 'hassle' ya know? My best guess looking at all the stuff going on right now is that a set of immune tests will be implemented. (back to that sexy blood, grins) and that a list of questions that looks just like the Carruthers list will be used but PEM will be the first question rather than than the last.

    I'm bettin' that right now as we speak there is a little gnome in the basement of the NIH patiently grinding out a set of doctor education packets to be ready sometime next year. That packet will beat doctors over the head with which questions and which tests to run and then to assign the ME/CFS label to said patient. My bet is a set of immune markers, and they have so many to choose from I'm not sure which ones they will pick. I'm figuring they are know they need to try to narrow the field down before they look at treatments.

    The NIH knows that the "winnowing" is going to have to happen before they even think about treatment trials otherwise there will be a lot of people who don't have a ME/CFS that end up in trials and that could cause a lot of skewed results and damaged patients.

    But no, I don't think they will bother with the PEM test's in the beginning because it's too expensive and they would have to set the test facility up first. It would be great though if they did include that as test. Little fatigue labs would pop up all over the US. Good for the economy. (big grins) But likely they will just go with Dr. Klimas's immune markers for now.
  16. George

    George waitin' fer rabbits

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    Thanks for that Link CBS!
  17. Sasha

    Sasha Fine, thank you

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    That would be great if gnomes did it... nobody else has gnomes...
  18. Cort

    Cort Phoenix Rising Founder

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    Thanks CBS - you could see how they could mistake their diagnosis. Metabolic syndrome....hmmm autoimmune disorders and neurological disorders.. I'm surprised there weren't more overly medicated people in there....
  19. Cort

    Cort Phoenix Rising Founder

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    I wish you were working in there George.

    A researcher in the Netherlands is trying to develop a marker for low blood volume in CFS - that would be nice; pop in the doctor's office and get a little blood test for that.
  20. George

    George waitin' fer rabbits

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    Maybe over the next few months some folks can get together and start combing through the PubMed stuff and come up with a good list of possible tests. It's something we have been needing to do for a coon's age. Then we could make up an e-mail campaign to try to help the process along.

    ME/CFS correct diagnosing and testing NOW! (grins) Course we need to see what comes out on the NIH Website first. I'd love to know which gnome is grinding that out. (big grins)

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