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Problems with the new IOM criteria

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 22, 2015.

  1. Nielk

    Nielk

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    When I look at the criteria of the IOM, I don't feel that it is describing MY disease.

    The criteria mainly describe measures of fatigue and sleep. It has left off a group of symptoms which to me seem vital. These symptoms which appear in other criteria are the ones that are connected to a vira/enteroviral etiology such myalgia, pain, headaches, sore throat and others.

    If one merely looks at the symptoms of the IOM criteria, it describes a "fatiguing" illness which gets worst when one exerts himself and has trouble sleeping well. No pain, no malaise (except on exertion), no chills no swollen lymph nodes.

    It makes it sound, as if, if one rests well, they feel perfectly well. It is only when they exert themselves that they feel ill. The name SEID gives the same connotation. We are only intolerant with exertion. As if when we stay within our envelope, we are perfectly fine.

    I feel ill all the time. I have terrible headaches. I have some muscles. I have sore throats. I feel like this even when I am bedbound. Fatigue is just a very small part of my problem. If I pace and rest well, I do not experience PEM.

    The IOM criteria does not describe my illness.
     
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  2. snowathlete

    snowathlete

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    Although I don't agree with all your points, I'm pretty interested in how people fit/don't fit the IOM definition.

    It's not clear to me from your post if you do/do not qualify under these criteria?

    Or is your post just about the criteria not describing your disease that well?
    I don't think a criteria are supposed to describe the disease really, they are supposed to identify who has the disease.

    For me personally it is a very good fit, the only thing I do not have is the OI - though there are signs that I'm maybe developing that over time. So to me it isn't a problem that it isn't more complex and doesn't describe all of my disease - I too have a constant sore throat, for instance, but would adding that increase or decrease the accuracy of diagnosis?
    I think it's good that it is simpler than other criteria and I think L Jason suggested criteria should be made simpler too.
    But of course, it shouldn't be too simple as to exclude too many patients with the disease. So that's the bit I'm quite interested in.
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    I agree that the diagnostic criteria are rather simple lacking in the nuance necessary to capturing the disease state more accurately.
    They could have spent more time on this as it is rather important.

    It would have been better to capture what the more severely ill experience and then perhaps have some explicative text that suggests diagnosis can be made on a graduated scale mild/moderate/severe etc. with mild having less stringent requirements.
    A diagnosis for a mild case would obviously be somewhat more tentative but would still be a reason to pursue treatment.

    Also, it could caveat the possibility of atypical cases. I know there are people here who don't have some of the typical symptoms like pain.
     
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  4. Amaya2014

    Amaya2014 Senior Member

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    Hi @Nielk. I'm new here so hopefully more experienced people will respond to you. For me, the new criteria is spotlighting the severe crashes that occur when I engage in physical, mental, and emotional activity. The past year providers kept thinking I was having a stroke or the on set of MS because of the body shutdown. Literally, I become like a "battery with no charge". A lot of other symptoms are there (headaches, brain fog, breathing difficulties, tingling/numbness, dizziness, joint pain) but the most pronounced and "disabling" is the body heaviness, inability to walk and stay upright, and the only thing I can do is lay down and do nothing (but try and keep breathing). Hope this helps.
     
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  5. Valentijn

    Valentijn The Diabolic Logic

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    I think the criteria describe my illness pretty well, since it focuses on PEM, cognitive problems, and orthostatic intolerance.

    The sleep bit is primarily highlighting that the PEM/fatigue doesn't go away after a good night's sleep, so that Mr "I've been working the night shift" and Mr "I party all night" are clearly not suffering from it.

    It's certainly a lot more accurate than Fukuda at any rate, which is the currently the only alternative option in the US. The only problem I have with SEID is that things are not expressed quite as clearly and succinctly as they need to be, for those who don't understand ME/SEID.
     
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  6. user9876

    user9876 Senior Member

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    To me the criteria are a minimum set rather than a complete description. With the set being defined basically as PEM + sleep problems + cognitive or OI issues. That doesn't rule out the other things it is an attempt to get at a few underlying common symptoms given the huge possible range of symptoms. I wouldn't see it as an attempt to characterise and describe an illness but rather an attempt to pull out a unique feature of what are probably a range of different illnesses.

    I think what you say about pacing and PEM is important particularly in how criteria get operationalized.
     
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  7. Nielk

    Nielk

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    I would be interested to hear which points you don't agree with. I was simply pointing out how it doesn't describe MY disease.
     
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  8. Amaya2014

    Amaya2014 Senior Member

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    @Nielk I'm not sure what page but the committe did note that some people become so adept at staying within their energy envelope (attempting to avoid crashes) that they may not think they have PEM. I understand your argument that you never feel "well" at anytime. What would happen though if you tried normal activity; i.e. Wake up, shower, breakfast, put in 7-8 hours of work, hit the gym, go home and cook a meal?
     
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  9. Nielk

    Nielk

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    I would probably become catatonic!!
     
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  10. Nielk

    Nielk

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    have Jason's findings been replicated?
     
  11. Amaya2014

    Amaya2014 Senior Member

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    Yup! This illness is a beast. We are different. I started aquatic therapy a few weeks ago to help my Fibro. Despite only doing half of what the other pts are doing, I have trouble getting out the pool, have to sit and/or sleep for several hours afterwards, and have a hard time doing much of anything else for the rest of the day. Meanwhile, I watch a group of senior citizens do more than me every session and everyone I see are energized after their sessions and merrily going along their way. I am glad to be doing something and I have found yoga to be "user-friendly"...lol
     
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  12. leela

    leela Slow But Hopeful

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    It also doesn't address the neuroimmune reality of this disease. Dysautonomia (which most ME patients eventually get) causes so many systems to go bonkers, with such a wide array of waxing/waning symptoms, it's crazy to me not to have the illness defined and named as the neuroimmune dysfunction it is. I don't know why it is so hard for anyone to call it Chronic Neuroimmune Dysfunction. Sometimes a cigar really is a cigar.
     
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  13. wdb

    wdb Senior Member

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    The criteria need to meet two conditions, 1) that they are very common in ME/CFS, and more importantly 2) that they are not very common in other diseases. There is no point including symptoms such as headache or sore throat as they are so common in other conditions as to be of virtually no diagnostic benefit.

    Also my understanding of unrefreshing sleep would not be trouble sleeping well, that is a different issue, it would be if you have a bad day go to bed feeling really crappy and sleep perfectly well but do not feel right as rain in the morning rather still feel about as crappy as you did when you went to sleep.
     
    Last edited: Feb 22, 2015
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  14. Nielk

    Nielk

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    Wouldn't you say that fatigue is common in most chronic diseases? For example fatigue is a common symptom of all autoimmune diseases. How many disease include debilitating headaches and sore throat that is experienced for many years? I understand it as a common symptom for a couple of weeks but not very common for decades.

    If you are stating that any symptom featured in the criteria has to be unique to the disease, the only symptom we would feature would be PEM/PENE.

    This too could be a feature of several diseases such as heart failure, thyroid dysfunction, Lupus and more.
     
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  15. Bob

    Bob

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    One of the major problems of defining our illness/es is that our experience of the illness seems to be very heterogeneous. We know this from discussions on the forum. Some of us have localised muscle or joint pain, and some don't. Some of us have pronounced cognitive symptoms but others less so. Some of us have major problems with OI, whereas others can't identify any OI issues. Some of us have neurological symptoms, whereas others have severe brain fog but no obvious neurological symptoms. Some of us identify as having localised muscle weakness, whereas others identify as having generalised physical and cognitive exhaustion. Even in ICC patients, I expect the range of subjective experiences would probably be quite varied. And, of course, in an individual, symptoms can change and evolve quite drastically over time.

    The SEID committee appear to have looked for common symptoms that are universally experienced by all patients. We can argue whether this is helpful or not, but every time you add a core symptom, you then exclude a subset of patients. If pain is included as a core requirement, then you eliminate a significant proportion of patients who don't identify as having pain per se, but who may experience severe generalised discomfort/malaise. (For example, for eleven years of my illness, I never experienced any localised joint or muscle pain, so the CCC would have excluded me, depending on whether I described my constant feeling of generalised severe discomfort as pain or not. Then, after a major relapse eleven years into my illness, I started experiencing a new range of symptoms, including localised searing muscle and joint pain/inflammation.)

    On this forum, we've had many discussions whereby we've come to a sort of consensus that PEM is a good way to define the illness. It doesn't suit everyone, but many accept that it defines the illness for many of us, and that it would be a helpful criterion to identify. Beyond that, each time a core symptom is added to PEM, it probably creates a subset, whereby many patients would be excluded. I would be very happy for such subsets to be distinguished for research purposes, but for clinical purposes it raises many questions. i.e. if the criteria exclude patients who don't have neurological signs/symptoms, then how do you identify and treat all the patients who have all the other symptoms of ME but no neurological signs/symptoms? Or, if using criteria similar to the CCC, what happens to patients who experience severe PEM but no pain? Such issues could be addressed in various ways. One way around this issue is to identify the few symptoms that are common in all patients.

    So the new criteria are purposely fairly inclusive, and I know that some of us aren't happy about that. The best way around these issues that I can think of is to identify subsets, as the CCC and ICC do. (As others have pointed out, pain isn't a necessary requirement for CCC, because this 'core' criterion can be overlooked for patients with sudden-onset flu-like onset. This creates a subset. And, for the ICC, there is a subset of "atypical ME".)

    I think it may be very helpful to have a criteria that identifies more severe cases, and identifies patients who experience pronounced neurological and/or immunological symptoms, but I don't think such criteria would be helpful to family doctors, in our current climate. I think specialists could potentially make use such criteria, but they are permitted to use the CCC and ICC as well as the IOM criteria.

    I think that the most significant two things that the IOM committee missed was to not go into detail about alternative diagnoses, and to not recommend a network of centers of excellence. (Well, I'm not aware of the report covering such issues, but I haven't read the whole document yet.)

    Anyway, these are my thoughts, but I'm not saying that I know better than anyone else, or that my opinions are more valid. We're not going to reach universal agreement about all the issues. It would be nice if we could reach some sort of agreement about how the new criteria could be improved, but it won't be easy. Don't forget that the CCC and the ICC are not now redundant for those who wish to use them in research or clinical settings.
     
    Last edited: Feb 22, 2015
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  16. Bob

    Bob

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    Note that, in the IOM criteria, in the table where they have operationalised the criteria (page 216), a two-day CPET test is recommended to measure PEM. So they are describing a specific biological process for PEM, not simply tiredness after exercise. Although, I acknowledge that family doctors won't be particularly discerning when it comes to identifying PEM.
     
    Last edited: Feb 22, 2015
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  17. wdb

    wdb Senior Member

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    Yes I don't dispute general fatigue is quite common, I imagine that is why they carefully worded it as:

    A substantial reduction or impairment in the ability to engage in preillness
    levels of occupational, educational, social, or personal activities,
    that persists for more than 6 months and is accompanied by fatigue,
    which is often profound, is of new or definite onset (not lifelong), is not
    the result of ongoing excessive exertion, and is not substantially alleviated
    by rest


    I don't know but I'd guess a few, also that wouldn't pass the first criteria well as very many ME/CSF sufferers don't experience debilitating headaches and sore throat.

    Not quite what I said but yes the closer to unique the better. I believe that is why many people (and ICC) consider PEM to be the cardinal feature and the most important criteria.
     
  18. Nielk

    Nielk

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    Thank you @Bob for your logical explanation of why this inclusive criteria should work as clinical diagnostic criteria.

    The issue for me though is really, which disease is the IOM describing? Is it the disease that Dr. ramsay described in the 1950's or the syndrome described by the CDC in the 1980's? There is in my opinion a big difference. Dr. Ramsay's M.E. is much more exclusive. I would venture to say that only a fraction of patients diagnosed with Fukuda, actually suffer from M.E.

    If SEID describes everyone who ever got a diagnosis with CFS ME/CFS and ME no matter what criteria was used, then the IOM inclusive criteria would make sense. It would probably describe close to 2 1/2 million people in the US. Probably less than 700,000 of these actually suffer from ME-ICC.

    If the IOM criteria is capturing everyone including all criteria, then I would like to see where the scientific basis is for calling it a "disease" instead of a "syndrome".

    People who believe that the true disease is Ramsay's and the ICC's M.E., do not believe that people who suffer from CFS have this disease. Because the Fukuda was so inclusive, it added people who did not belong to the ME diagnosis.

    I think that this is the major problem and this is what is causing the great divide in our community.

    Since the Fukuda, each subsequent criteria; the CCC and then the ICC tried incrementally to capture back the criteria of Ramsay. Now, with the IOM criteria, we are sliding back and being super inclusive gain.

    This is watering down and diluting ME again. This is why there is such an opposition to it. ME patients feel that they are being drowned...again.
     
  19. snowathlete

    snowathlete

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    Great, I just didn't want to risk taking things off the topic you set.

    The bits I didn't agree with was your view that "The criteria mainly describe measures of fatigue and sleep." and a "fatiguing illness".
    I don't think the focus is on fatigue at all. I think they are primarily very focused on post exertional worsening of disease and inability to take part in normal life (which includes fatigue as well but is not the only thing they describe) - we both agree they also have a focus on sleep - and I also think they have a secondary, yet still significant focus on OI and cognitive dysfunction; one or the other is mandatory. Fatigue is very much not the focus (to my eye), fatigue alone will absolutely not allow you to qualify, and I think that's a big difference from Fukuda which was very much focused on fatigue.

    I agree with this bit. To me, this is the biggest weakness in the name. We are diseased even if we do nothing more than breath.

    More on topic, I think, is that I don't disagree with what you're saying about it not describing your disease, or even more broadly, that other people may well think the same. The point I was trying to get across in my original post was that I don't think that is what disease criteria are supposed to do in the first place. They aren't designed to be a description of the disease; their purpsose is to correctly identify people with the disease, and there is a careful balance that has to be made between not allowing people without the disease to quality under the criteria, while not excluding people that do have the disease and therefore should qualify under the criteria. In order to do this effectively you have to say enough but no more than enough.

    In my view the IOM criteria achieve this pretty well - but it hasn't been put to the test yet. I wouldn't be at all surprised if there was a formal study on this at some point. In the meantime I am very interested in whether people who qualified under CCC/ICC would not qualify under the IOM criteria. If this rate was too high then that would be a problem, I think. But I may well be drifting off topic again with this last paragraph - If I am, let me know and I'll move it to a new thread.
     
  20. Bob

    Bob

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    @Nielk, a problem for our community is that your opinions (that the new criteria do not reflect the nature of ME) are shared by some, but they are not universally shared. So if the community is split, then where do we go from here?
     
    Last edited: Feb 22, 2015
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