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The Non CFS 'CFS-ers'

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

  1. WillowJ

    WillowJ Senior Member

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    I agree that there probably is a lot of misdiagnosis due to laziness or not being willing to spend the money (depending on which country or whether you're in a managed health care system), but I am not convinced that there is no ME at all. In most other conditions, people improve with exercise. We do not.

    Now, maybe, that's because of a total lack of appropriate treatment (due primarily to lack of appropriate investigation--they mainly look for the main diseases that are relatively easy/expected to find in most people: Lupus, diabetes, multiple sclerosis, rheumatoid arthritis, coronary artery disease, and whatever the big thyroid disease is which would cause TSH to be outside lab standards... and then they stop looking, so of course they cannot treat the problems these patients have).

    But I don't think we would have so much in common with one another (those of us that do fit CCC), if we didn't have related disease process. Muscles that continue to lose power even after stopping use? That's fairly novel. Besides us, only in MG do muscles lose power with use (and in that disease I don't know if they continue after stopping).

    Abnormal exercise test on the second day? We don't know if that would show up in these other people that report PEM or if they're experiencing something different (something else equally valid, but some other disease process). Only way to check would be to test some of them. (Jason says some 12-17% of MDD patients report PEM, so it wouldn't have to be grandma with Parkinson's.)

    Low NK function does appear in other diseases. It's more like ANA which would identify a general process, not a specific disease. Same with RNAse-L stuff.

    However, we may be able to identify a unique profile of tests that show up that indicate ME (or subsets thereof), as a set. Kind of like diagnosing rheumatic disease, you would diagnose from lab tests and symptoms combined. Klimas and even some of the others on this forum would know better than me.
  2. biophile

    biophile Places I'd rather be.

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    Probably explains much, but not all.

    rlc's post was a reality check on the validity of CFS as a distinct clinical entity, even for the Canadian criteria, but I'm not convinced it explains the whole story. Of course I could be wrong, but I've seen too many different and unconfirmed examples of "CFS is just <insert easy answer X here>" to be confident about any of them explaining away CFS so easily. But I agree that misdiagnosis and the wastebasket diagnosis of exclusion with minimal testing is obviously a major problem. Research seems to find that roughly half of people in general with broad CFS-like symptoms have other (relatively easily detected) classical conditions which rule out a CFS diagnosis, so there's no surprise that some of the rest have other known conditions which are harder to detect and require more testing, especially if government guidelines and biopsychosocial ideology discourages further testing.

    There's so much more to learn about this dilemma. CFS is just a placeholder, but among the mess they may indeed be new unknown disease processes awaiting to be discovered and classified (such as HGRV if it contributes to symptoms), as well as undetected classical diseases. Many of us including myself may not have "ME/CFS" but something else.

    I wonder what Mirza thinks about very low ESR?
  3. Anika

    Anika Senior Member

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    Low NK cell function

    Sick of CFS,
    I think low NK cell function is one of the most consistent results in CFS, and corroborates a diagnosis. I think one problem may be that while for many patients, the levels will be low enough to stand out as definitely abnormal, for other patients (or the same patient, at different times during illness) the level may be lowish but still within a range that some healthy people have too, and not as obviously abnormal. (Like cholesterol levels.) This is my general impression, only, so take this with a grain of salt - good for the orthostatic intolerance!

    The more practical problem is that few labs are able to do the test, and few doctors able to interpret the test results. I think there are lots of issues like how soon the blood is tested after drawing, also, that complicate the interpretation.

    As I recall, Klimas and her group have done research into things that may link to this, like perforin. I don't know whether research using these other tests is mostly to help clarify what the nature of the NK cell function problem is - I suspect that's true. But, it could also be that some of these other tests might be easier / cheaper to perform and interpret, and thus become good "stand ins" for the NK cell function test.
  4. SOC

    SOC Moderator and Senior Member

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    Thanks Anika, that explains a lot. I guess we just keep waiting for good test....
  5. Snow Leopard

    Snow Leopard Senior Member

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    Rlc, while I agree that most CFS patients are insufficiently screened for other diseases, (I especially agree on your points about thyroid tests). But I don't think chronically low B12 and vitamin D levels are sufficient to explain the symptoms - I would go as far as predicting that most CFS sufferers have such deficiencies (and this should be routinely investigated), but treating such deficiencies does not lead to resolution of symptoms. I think such deficiencies are due to malabsorption in the gut...
  6. Dolphin

    Dolphin Senior Member

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    Firstly, with regard to the Canadian criteria/guidelines, I think it is important to distinguish between the big document (around 100 pages) and the checklist.

    A lot of people like both although I have some problems with the big document e.g. some of the exercise it recommends.

    A lot of people haven't read the full thing so when people say they like it, a lot are talking about the checklist
    I have become sceptical (having previously been convinced) when I see a list of 50 or 100 symptoms or whatever and people say these can be symptoms of hypothyroidism or Lyme Disease or candida or whatever.

    However, the Canadian checklist is a bit different as people can't just have 8 (or whatever) symptoms in total - they have to have ones from nearly every section (i.e. type of symptom or system). I'm not sure that people with just about every chronic condition have symptoms from all the different categories within it.
  7. lancelot

    lancelot Senior Member

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    Canadian Criteria is the GOLD STANDARD for diagnosing ME/CFS

    The Canadian Clinical Case Definition is summarized as follows:

    1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. [Editors note: The M.E. Society prefers to use delayed recovery of muscle function, weakness, and faintness rather than fatigue. Further, we disagree that the muscle dysfunction and post-exertional sickness is unexplained. See our Cardiac Insufficiency Hypothesis page and our Research-Based Subsets page for researchers medical explanations on this website.]

    2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

    3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity. [Editors note: neuropathic pain is a common symptom and should be added here as well.]

    4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.

    5. AT LEAST ONE SYMPTOM OUT OF TWO OF THE FOLLOWING CATEGORIES:

    1.
    AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities. [Editors note: low plasma and/or erythrocyte volume should be added as another explanation for orthostatic intolerance in this disease. More cardiac symptoms should be listed such as left-side chest aches and resting tachycardias, which, in addition to low blood volume, have also been documented in the research. The full text of the case definition does suggest 24-hour Holter monitoring, and when tachycardias with T-wave inversions or flattenings are present that they not be labeled as nonspecific since they aid in the diagnosis of ME/CFS. The frequent tachycardias seen in ME/CFS have been shown by Dr. Paul Cheney to be a compensatory mechanism that serves to increase cardiac output in the presence of low stroke volume due to diastolic dysfunction in the heart. Orthostatic problems may also be related to diastolic dysfunction as recently shown by Dr. Paul Cheney. See our Cardiac Insufficiency Hypothesis page.]

    2.
    NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

    3.
    IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

    6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.
    This summary is paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275.


    NO OTHER DISEASE(S) CAN DESCRIBE ALL THESE SPECIFIC SYMPTOMS IN COMBINATION EXCEPT FOR ME/CFS.

    IF YOU FULLFILL THIS CRITERIA, YOU MOST LIKELY HAVE ME/CFS. IF YOU DO NOT FULLFILL THIS CRITERIA, YOU MOST LIKELY DO NOT HAVE ME/CFS.
  8. Cort

    Cort Phoenix Rising Founder

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    HE wouldn't tell me but I think it was designed to be simple...Dr. Freidberg told me years ago that blood volume just did not interest current researchers - its kind of an old topic, an old subject.....its not gene expression or something 'hot' and exciting like that - but there it is - an important facet of CFS (even if filling up all the blood volume isn't helpful for everyone). Dr. Lange said something similar about MRI's; she is not a fan of fMRI's but they are the hot topic right now and its hard to get other possibly more useful research funded.

  9. Cort

    Cort Phoenix Rising Founder

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    That is my ....they are low for a group but not mouth-opening low.... She also has NPY but said that is also found in depression....

    the most striking potential diagnostic tests I can think of are the Pacific Fatigue Labs repeat exercise test (what a test to have to go through to get a diagnosis!) and - a better candidate - Dr. Lights receptor levels after mild exercise.....What a shocker those are!

    Or it may be a group of tests....low cortisol plus low NK cell functioning plus?????

    It will be key, though, to actually gather alot of patients and try and split these out - and throw the definitions in there.

    Imagine matching NK cell functionality or something else to CCC patients and not idiopathic fatigue without PEM or not in Fukuda or Oxford...This is why they need to 'operationalize' the definition and start using it in studies.....Are any researchers doing this? I don't think so...All they have to do is assess their study participants using the different criteria. Ironically, I think only the PACE trials are doing this (with an ME definition).
  10. Cort

    Cort Phoenix Rising Founder

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    Vermoulen's study did validate this finding but another unpublished did not; it was put together by Eleanor Stein - a doctor who has CFS and she threw her most PEM'd patients in there and some of them fit and some of them did not.

    You can have PEM without it.....the key is breaking those two groups apart and seeing what's different in each. If we had some money people would be all over this - gotta get ME/CFS into the mainstream....
  11. Cort

    Cort Phoenix Rising Founder

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    I would think a couple of fainting spells and blood pressure bottoming out or heart rates spiking during Tilt Table tests would do the trick but I don't know. OI is a fairly new field.....
  12. Hope123

    Hope123 Senior Member

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    I agree with the part about such diagnoses accounting for the constellation of symptoms. I have diagnosed and treated some of the conditions mentioned in the article and none have the same degree or variety of symptoms as ME/CFS. For example, it is rare to find homebound or bedbound patients with celiac disease solely accounting for their disability. They do suffer from a number of symptoms but they have other symptoms not common to ME/CFS. Other diagnoses are important to eliminate as a number have specific proven therapies for treatment but they don't account for ME/CFS patients who meet CCC criteria as some practitioners claim they do.
  13. Dolphin

    Dolphin Senior Member

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    Not sure I have you right but this paper, published earlier this year, will hopefully encourage researchers to use the CCC in research - it operationalises it
    The FINE trial, which is sort of the sister trial of the PACE Trial, recorded data for three criteria (Fukuda, Oxford and ME (London)). In the main paper, they only released data for the Oxford criteria except to say that 92 (31%) of the participants fulfilled the London criteria.
  14. lancelot

    lancelot Senior Member

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    This 40% misdiagnosis number is the result of using the faulty and non-specific US/CDC empirical-Reeves 2005 definition of CFS. This definition does not describe ONE disease but dozens of known diseases including mental diseases like depression. any disease and anyone suffering from fatigue, pain and flu like symptoms qualify for a diagnosis of CFS. BULLSHIT!!!

    If doctors only go by the Canadian Criteria Consensus to diagnose CFS/ME, then this 40% misdiagnosis number would fall to below 10% IMPO because the CCC describes ONE specific disease not dozens of other CFS-like/unlike diseases. Add some specific labs in like Rnase L, Low NK activity, and multiple infections OR XMRV/MLV+, then the diagnosis for CFS/ME will be ~99% correct.

    Really, too easy.
  15. Dolphin

    Dolphin Senior Member

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    I think you could be right about the Canadian Criteria Consensus.

    But I doubt they use the US/CDC empirical-Reeves 2005 definition of CFS which is a very weird combination e.g. you can be counted as functionally disabled as assessed by the role emotional subscale of the SF-36 i.e. if you don't get much done because of your mood. There is no mention of them using it.

    They say they use the Fukuda criteria which is the criteria that looks for 4 out of 8 symptoms (the empiric criteria do this but in a slightly weird way e.g. as I say, using the RE SF-36 subscale for functional impairment).

    I have just looked at it again. It doesn't say that the 40% who had other diagnoses satisfied the Fukuda criteria. CFS clinics in the UK are used as dumping grounds by some doctors for patients with fatigue. The requirements as I recall is fatigue and one other symptom. So all it found from what I can see was that people with fatigue had other reasons for their fatigue apart from CFS. Not really huge news.
  16. oceanblue

    oceanblue Senior Member

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    How true, and not just in term of defining patients properly. Above all these people seem to confuse 'some evidence' (covering most of CBT) with 'robust evidence' (otherwise known as proper science).
  17. oceanblue

    oceanblue Senior Member

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    Wow, are you saying that the NIH are planning to create a new case definition, or at least precisely define an existing one?
  18. lancelot

    lancelot Senior Member

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    I feel so bad for all CFS/ME patients in the UK. I don't think there could be a worse place to live for PWC. i am so mad at your government, media, and healthcare system for letting this go on for so long. i don't see a solution in your country until the US uncovers the physical cause of CFS/ME. then, what will your government do?
  19. Dolphin

    Dolphin Senior Member

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    I think she is engaging in wishful thinking. Don't think there is much definite in the air. The CDC have been the ones that have called the meetings in the past. I can't remember what they said in their five-year plan but their "International Study Group" often is a biased bunch.
  20. Dolphin

    Dolphin Senior Member

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    Just to be clear, I live in the (Rep. of) Ireland, not the UK. But I've spent a lot of the last 15 years reading ME literature from the UK, following varous UK yahoogroups, etc. We are stymied here to some extent as pushing here will most likely lead to what is in the UK. Also the public health system is actually better funded and run in the UK than Ireland. At the moment, because health spending is not so well managed/overseen here people here probably on average get more tests to rule other conditions out.

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