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IOM New proposed definition. What do you think?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by taniaaust1, Feb 11, 2015.

  1. taniaaust1

    taniaaust1 Senior Member

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    Im laughing here as basically dont meet the new ME/CFS definition IOM has made up. I have severe ME (use wheelchair often and are basically housebound) but arent not meeting it well.

    I fit the Canadan Consensus Criteria and I fit the International ME criteria but I dont fit well with the new IOM definition....by the IOM it says my diagnoses should be questioned as I dont meet the definition well.

    Why I dont meet it well is I dont at all currently wake up unrefreshed. (It only happens if Im having a crash and if I stay out of crashes (which I try very hard to do as that can cause me to end up in hospital) ..it doesnt happen at all.

    Unrefreshed sleep was a huge issue for me for years but it isnt at all any more (the POTS stops me from being able to do enough to flare up this sleep issue most of the time). By this IOM definition, they expect people to be waking up unrefreshed "at least half the time". I wake up feeling unrefreshed only about once every couple of weeks or if Im pacing better, not at all.

    With the CCC definition, unrefreshed sleep is an optional symptom and with the ME international definition if one fits into the other catagories (one just needs to fit 3 out of the four), one doesnt even need sleep issues or the "unrefreshed"sleep.

    Anyway, I think its interesting my severe ME case isnt meeting properly the new IOM definition proposed! They've put far too much empathisis on "fatigue" over other symptoms and waking unrefreshed sleep goes with fatigue.

    Anyone else got comments on this definition or find they dont really fit it currently? (as I said, I would of fit it well in the past but dont right now with how the severe ME is presenting).

    I guess this is what happens when they put too much empathsis over a few individual symptoms rather then looking at it properly as being a huge symptom complex of different things going on. They should be going by ME testable abnormalities as I have quite a few of those.
     
    Last edited: Feb 11, 2015
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  2. Wildcat

    Wildcat

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    As the IOM want all doctors to be able to diagnose SEID, not just specialists, the diagnosis will too often come down to a checklist of 5. If doctors didn't want to read the CCC (claiming its too long or complicated), they are not much more likely to read the entire IOM report for important details.
    I agree with Dr Enlander, this will create overdiagnosis and more misdiagnosis.
    .
    ~~~~~~~~~~~~~~~~~


    A comment from Dr. Enlander on the IOM's "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" report:

    "The notion to rename the disease Myalgic Encephalomyelitis (which, if we mention, we should also mention 'Chronic Fatigue Syndrome,' just to be clear) to "SEID" is highly unnecessary. This will confuse not only patients but physicians who are expert in the disease as well as those who are not familiar with the condition.

    "The criteria that are quoted are a truncated version of the Canadian Consensus Criteria (CCC), truncated in a manner that allows the over-diagnosis of the disease. These criteria would also allow the diagnosis to include psychiatric conditions that are specifically excluded by both the Fukuda and CCC. I am surprised that the experts in the IOM Oversight group has not commented on this."

    .
     
    Last edited: Feb 11, 2015
  3. SB_1108

    SB_1108 Senior Member

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    I was disappointed with the lack of any real emphasis on the gastrointestinal side of this disease. I feel like it was barely mentioned!

    While my exertion intolerance is most certainly debilitating, IBS has always been my most prominent complaint.

    And with all the current research on the gut microbe, I just assumed it would be more prevalent throughout the report.
     
  4. Nielk

    Nielk

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    I agree with you, Tania. Sleep problems used to be a major problem for me as well but, over the years, this is not a key issue for me.

    I don't know what "refreshed" means anymore because I never feel "refreshed" but, I do wake up in the morning feeling less tired than the night before.

    I too fulfill the criteria for CCC and ME-ICC. I have seen others posting on various social media with the same complaint.

    This is a real kink in the new criteria. Many severe patients will not fit in.
     
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  5. Nielk

    Nielk

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    This is what happens when you try to simplify a very complex disease!
     
  6. Antares in NYC

    Antares in NYC Senior Member

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    I completely understand what you are saying. I feel a bit conflicted about the IOM criteria because my illness has gone through various stages in the 16 years I have been dealing with it.

    At the beginning, specially the first 2 or 3 years, I matched all the items listed by the IOM: severe PEM, unrefreshed sleep, severe cognitive issues, and orthostatic intolerance (which came with major vertigo and dizziness). In addition I had some other major symptoms, like flu-like malaise, very enlarged cervical lymph nodes, visual “fuzziness”, major brainfog, headaches, and I was bed-bound for months at time.

    Over the years the core of my condition has evolved. While all those issues are still there, some of symptoms have become less intense, while some others have increased. I'm mobile but Iwould say I'm only about 50% of what I used to be before I fell ill. New and more pernicious symptoms have appeared in recent years as well.

    For instance, as of 2015, my PEM is there, but not as bad as it used to be. I’m not bed-bound for long periods of time, and my crashes seem to be shorter. Still, they are almost always triggered by pushing it too far.

    What has also improved over the years is the orthostatic intolerance. It used to be absolutely awful at the beginning, but somehow it decreased. Now I only experience it on occasion, specially during crashes.

    So as those two core symptoms mysteriously improved over time, I wonder if I would still qualify for the SEID criteria. On the other hand, the unrefreshed sleep and other sleep disturbances have not improved one bit. Nothing has made a dent in that area. Cognitive, brain-fog and memory problems have also gotten much worse in recent years.

    To complicate matters, over the last 4 years an array of new symptoms and issues has appeared, and some have become quite severe too: IBS, vitamin and mineral deficiencies (B12, D, C, magnesium, ferritin), pernicious anemia with parietal cell antibodies (auto-immunity), and severe immune dysfunction (NK cell function getting worse with each test).

    PS: speaking of all this, I don't exactly know what ME/CFS/SEID subcategory i belong to. I have seen in these forums lots of talk about sub-groups or sub-categories for the disease, but I have no idea what those are. I would appreciate if someone could point me to some literature to learn more about it. Thanks.
     
    Last edited: Feb 11, 2015
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  7. Iquitos

    Iquitos Senior Member

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    It seems the IOM is describing the disease at one point in time without considering that it progresses and changes over time. For over 30 years I had "unrefreshing" sleep and it's still not normal but since I started using medical cannabis I have had the best sleep in 33 years. I sleep as much as 5 hours without waking and wake with the best level of functioning I'm going to have all day. It goes downhill all day even though I nap/sleep by midafternoon. Just being awake and upright makes me so exhausted by the end of the day that I just want to go to sleep and not wake up.
     
  8. SOC

    SOC Senior Member

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    I think this an interesting point that perhaps those of us in the medical world can clarify -- When symptoms like this are listed in a disease criteria, do they mean the symptom existed at any point during the illness, or only currently? If treatment relieves the symptom, is the diagnosis rescinded?

    In many conditions time or treatment alters the symptom presentation without altering the diagnosis. I assume the same would be true here, although I'm not at all sure.
     
  9. Antares in NYC

    Antares in NYC Senior Member

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    Even Dr. Linkin mentioned last summer that he had found specific differences between patients in the first three years of the disease, and those suffering form it for longer than that. The illness does indeed evolve in weird ways, and it does so quite differently from one person to another.

    What we are missing here is the elephant in the room: what causes it. Since it's 2015 and we are still in the dark as to the cause for the disease, we still have to use various diagnostic criteria based on symptoms, which vary wildly from one patient to the next, and as we know, also evolve over time.
     
  10. Valentijn

    Valentijn Senior Member

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    Sorry, but this is getting absurd. No disease requires that symptoms be present all of the time, or even most of the time, or even consistently. The amount of nit-picking going on is ridiculous.
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    Same here, when I wake up in the morning (after getting enough sleep, I often dont wake up till late), Im at my best.

    As long as Ive got enough sleep (I require often 9hrs, more if I did more then my usual amount day before.. the more I do, more sleep I need), I can wake up feeling great (as long as not crashing and getting enough sleep).

    Cause of POTS, I go downhill from there depending on how much I do and have long Im upright for.
     
    Last edited: Feb 11, 2015
  12. taniaaust1

    taniaaust1 Senior Member

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    It makes it more absurb as its known to be a post exertional disease.

    So many people who have had long term and can pace well, will be keeping activities in check to not get symptoms esp if they are like myself when they get flares and the symptoms can get severe enough to put you into hospital. If you are like that you are super careful with pacing and not to cause flares which will bring in more symptoms.

    With that being said, i do think some symptoms are constant eg IBS most have it all the time thou of cause that worsens at times too, MCS, FM, brain foggy or memory problems often there all the time to some degree for those who have those symptoms with their ME.
    ............

    It appears IOM tweaked things DOWN from the Canadian definition, watered it down rather then made things even better then that by adding subgrouping, tests or something like that. It is a far worst definition, when the CCC was quite reasonable.
     
    Last edited: Feb 11, 2015
  13. taniaaust1

    taniaaust1 Senior Member

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    One thing which is for sure is diagnoses as it stands now, will be doctors will be left not knowing how someone should be diagnosed either. Some will lose their ME/CFS diagnoses with this new definition due to this.

    Maybe it means Im now cured as I dont now meet the definition? :p (is that how people will be seen if they stop meeting it?)
     
  14. Simon

    Simon

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    Me too, and I'm not sure of the evidence they used to make this a mandatory symptom - whereas PEM seems to be a better focus
     
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  15. Simon

    Simon

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    Here's some stuff I really like about the definition, and the guidance on diagnosis:
    These, I think, help to distinguish mecfs or seid from broad-based CFS criteria such as Oxford (or even Fukuda to some extent). In some ways the questions are obvious, but they have not been required by definitions used in countless studies
     
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  16. taniaaust1

    taniaaust1 Senior Member

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    To see if you fit with ME.. check with the International ME criteria http://onlinelibrary.wiley.com/enhanced/doi/10.1111/j.1365-2796.2011.02428.x/

    ME/CFS Canadian Consensus Criteria http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (the above link is the overview document, easy to read, a must read document for anyone trying to work out where they fit and knowing where you fit is important).

    I think its generally considered by most that the patient group meeting the Canadian Consensus Criteria are generally ME patients so those who meet this can call their illness ME.

    Anyone who cant meet Canadian criteria is a CFS patient or rather often a misdiagosed patient with another thing!! They can choose to call themselves CFS or choose to say they are an undiagnosed patient trying to still find what illness they have.

    (maybe once all the ME is pulled out of the mixed ME/CFS groups, it may become clearer that there is yet another illness going on in which the CFS mixed all kinds of illnesses group, some have).

    Im not even going to entertain DIES.. or rather I should say SEID at this point, its just a weird diagnoses which dont fit anywhere.

    For anyone trying to work out where they fit, I suggest to start by reading the Canadian definition.
    ..................

    "sub-groups or sub-categories for the disease"

    They could of improved on the current ok definitions (canadian or international ME one) if the IOM had added subgroups to one of those. eg Maybe those who have thyriod issues with all this could be a subgroup?? Same goes for those with Ehlers-Danlos syndrome and this... POTS and ME subgroup or whatever. I know some CFS specialists see those of us who also get FM as like a subgroup.

    We know there are groups of ME people who get those other things.

    Well I guess that is what one will get when it isnt a panel of international experts of this disorder making decisions. What a waste of 1Million dollars!
     
    Last edited: Feb 11, 2015
  17. taniaaust1

    taniaaust1 Senior Member

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    It isnt mandatory but it says doctors should question the persons diagnoses if they dont have unrefreshing sleep. This will result in my diagnoses being questioned every time I see a doctor, it will make doctors doubt my diagnoses cause I dont fit the criteria well.. when in fact Im a clear ME patient.

    As it is the severity of my illness has many not knowledge on ME doctors question my illness..so this new definition thing will just make that situation for me worst.
     
  18. akrasia

    akrasia Senior Member

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    I think there are a couple of reasons for the streamlining of the definition.

    A major theme of the report is how underserved this community is. What we're looking at is a situation that is catastrophic. If between 836,000 and 2.5 million people are sick, it's only a handful of us that has any diagnosis at all. What's being described is a "rolling emergency."

    As Ellen Clayton mentions, I believe in the introduction she gave yesterday, there have been no longitudinal studies, no natural history of this disease. The report is a litany of research deficits.

    Perhaps, the bet is to hope that PEM will see off the worst of the over diagnosis, although there are problems with this, described in another thread by @anciendaze. But if you look at the IOM report as an act of triage, a communique from a field hospital under siege, it becomes more legible.

    I have some reservations about the report which I'll try to get to at some point. But at least they were expressing a bit of urgency, which given the bureaucratic context, is surprising.

    It may be the proverbial mouse brought forth from the mountain, but what we had previously was a flea circus. So, progress.
     
    Last edited: Feb 11, 2015
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  19. taniaaust1

    taniaaust1 Senior Member

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    Maybe? it would be progress if they have plans to follow this up with big funding for us, I doubt this thou!!! (Im saying maybe as I dont think definition is good enough).

    Do people here really believe this is going to bring a flood of gov funding our way? (the gov is more likely to go on about how it just already spent 1M on us).

    and People like me who have severe ME and dont well fit the defintion and hence now have a questionable diagnosis, may be left out of those studies if this did bring a heap of funding our way.
    ..........

    Im sure the American gov already knew how underfunded this illness is and how so many areas need studying in this.. they kept it that way!! They even stole the funding. (Im refering to that incident with the CDC in the past in which they used the CFS funding money for other causes.. did that money get replaced? I dont think it ever did).

    I personally believe they, some people in high places actually wanted this illness to be underfunded. Has this changed? those people in high places are probably still there

    This whole IOM thing may of been to make us think they were willing to change things and a political move as far as making it look like they were doing something. Politics has always revolved around this illness has that situation gone away? I doubt it.

    The fact they have given us a watered down definition and not done something like tried to make the CCC better, makes me think things havent changed.

    I wish I could see progress ahead.. It's going to take me some convincing before I'll believe good is going to come out of all this and there is nothing at all to say this report will lead to increased funding.
     
    Last edited: Feb 11, 2015
  20. Valentijn

    Valentijn Senior Member

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    Oh, I think the basic criteria failing to say "YOU DON'T HAVE TO HAVE EVERY SYMPTOM 24 HOURS PER DAY, AND YOU DON'T HAVE TO TRIGGER PEM CONSTANTLY TO HAVE SEID" is just fine. I think it's ridiculous that some people are complaining about the criteria failing to specify the blindingly obvious. It's as if they expect an air-tight legal contract instead of a simple diagnostic tool, and they're making demands which aren't necessary or used in any disease criteria.

    I do understand the paranoia, given how often the psychobabblers have managed to twist everything connected to the disease, but we really need to get over that. It's not about the psychobabblers - they are irrelevant to this, and they will twist anything, no matter how air-tight. And they'll look a bit nuts themselves when they do it now (not us), so who cares if they do? Whereas insisting on a 10-page basic definition with a mythical perfect name which no one has been able to come up with is going to make patients look rather unreasonable and irrational.

    PEM is not just a mandatory symptom now, it's right there in the friggin' name! How much better could it get, considering that they are only going to use reliably replicated research, and the underlying pathology is still completely unproven? We have a lot of hints, but they are far from conclusive.

    And we need to keep in mind that the name is intended to identify patients, not just describe them. "Immune", "Neuro", and even "Neuroimmune" are words which apply to a huge number of diseases - even though they are nice and serious words which accurately describe us, they do not distinguish us from other diseases. "Exertion Intolerance" does uniquely identify us to a much greater degree - it would do so even more if the delayed onset and resulting symptoms were somehow crammed into the name, but that would take a full sentence.

    Taken at face value, the SEID name and the definition are pretty good. Not perfect, but a huge improvement over CFS. The US government was never going to use ME or the CCC, so SEID and its criteria are probably the best outcome we could have reasonably expected. It's certainly way better than I expected, after what they did to GWS, and I'm hugely grateful for what the IOM and the panelists have accomplished.
     
    Last edited: Feb 12, 2015

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