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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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Discussion of the NEW International Consensus Criteria

Discussion in 'General ME/CFS News' started by Nielk, Jul 21, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    If it mentioned much of that. I missed it too.
    ........

    I would like to say I are greatful that the ME specialists have gone ahead and done this and are trying to help us. Fingers crossed that it does work out well
  2. biophile

    biophile Places I'd rather be.

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    The ME-ICC is a strong statement, consider the contrast between these two documents from 2011 ...

    versus

    One issue here besides ignoring biomedical research is with the semantics around the term "neurological condition". Some people reject CFS as such because of the traditional expectation that neurological disease has specific lesions showing up on low resolution brain scans but does not occur consistently in the CFS research when using inappropriately broad criteria.

    However the classification of neurological disease needs to be updated, this isn't the 1980's anymore when the CFS construct was invented. There is also the situation where the CFS/MUPS paradigm has led to minimal testing so ME patients with potentially demonstrable pathology and relevant signs are going under the radar.

    The diagnosis of exclusion has gone too far, it can be a useful for excluding obvious diseases that share symptoms with CFS, but has been distorted into a catch-22 limbo scenario where CFS is defined as medically unexplained by its very nature rather than just what was practical back in 1988, so people can always say "oh, it isn't CFS then" if significant abnormalities are found but don't adequately match other known disease entities.

    A few posters have brought up the issue of symptom frequency and duration in the ME-ICC criterion. Maybe I need to re-read it, but I agree that it didn't seem clear on this issue. Another thing I noticed is that under immune symptoms, only increased susceptibility to infections is mentioned, but I have read many anecdotes about patients having decreased susceptibility to ordinary infections instead as if part of their immune system is overactive.

    It may also be a good idea for the main authors to ask relevant clinicians and researchers from all over the world to read and officially endorse it. Imagine having an international consensus document that has, in an addendum, hundreds of such signatures on it, would be harder to dismiss it.
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  5. valentinelynx

    valentinelynx Senior Member

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    Because it confused me, I want to point out that the article about the new criteria has been accepted for publication in the Journal of INTERNAL Medicine (not International)! I was all, like, uh, "WTF is the J of International Med? Never heard of it. That's not going to help anything, publishing in some unknown journal...". Apologies if this has already been pointed out. The Journal of Internal Medicine has a middling ranking in "impact factors", which is a way of rating the importance given to the journal. It is based on the number of times a journal's articles are cited in other articles. The 2010 impact factor (IF) for J of Internal Medicine was 5.9. It was #11 on the list of general Internal Medicine journals. The top one is New England Journal of Medicine with an IF of 53, followed by Lancet at 33, and JAMA at 30. Most importantly, however, this article will be easily accessible on PubMed and available in all medical libraries (does anyone still use the library?).

    I think it's great that this is to be published in a reputable journal. I'm still on the grumpy, cynical side, though. I don't know that publishing proposed criteria will help, unless researchers and clinicians elect to USE the criteria. Unless the criteria are promulgated by such as the CDC and the NIH. Unless it starts appearing in textbooks and being taught in medical schools. Weren't the Consensus Canadian Criteria published? Never mind, I just answered my own question: yes, the CCC was published, but only in the Journal of Chronic Fatigue Syndrome, which alas, is not only discontinued, but out of print, so that back issues are no longer available. Meaning all the useful research (quite a bit) published in that journal has been effectively flushed: most is not available online. You have to dig up old paper copies, and that is not easy, because most libraries didn't carry it.

    BTW, does anyone know if the new criteria are intended as diagnostic criteria (for clinical use), or for research purposes only? (Haven't been up to reading the whole thing yet). Thanks.
  6. valentinelynx

    valentinelynx Senior Member

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    For some reason, I'm not allowed to read this link. I get the "valentinelynx, you do not have permission to access this page," message.
  7. Wonko

    Wonko Senior Member

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    You need 100 posts to read stuff in the libary, no idea why but it's been that way as long as I've been coming here.
  8. Bob

    Bob

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    I haven't read the paper properly yet, so I might change my mind when I've read it all, but I do not share your concerns...

    I think new and updated criteria along these lines can only be helpful for the patient community, and will help stimulate the national/international conversation about the disease name and what diagnostic criteria are best to use.

    The new criteria give researchers and clinicians an extra diagnostic tool to choose from, which they may or may not find helpful. I believe that choice will be helpful.

    I agree that the authorities are not going to be interested in this yet, but they may be in the future if the patient community decides that these are a helpful set of criteria.

    We have been in desparate need of a choice of biomedically-based diagnostic criteria, rather than pyschologically-based criteria. These criteria add to that choice. Sure, it's messy to have so many sets of criteria to chose from, but the world of CFS/ME is messy anyway, and it's the CDC and the Wessely school who created the mess. Hopefully these new criteria will start to clear up some of the mess that has been created over many years.

    If these criteria add to the quality of care and research, in the long term, then that will be very helpful for all of us.

    These criteria might be a step in the right direction for the patient community. Of course it doesn't prove that ME exists, in itself, but we need more specific criteria to use in research, in order to be able to establish ME as a homogeneous disease.

    I don't think it's a bad thing to open up these conversations nationally and internationally.
    Actually, I think that the more it is discussed, and brought into the open, the better.

    I believe that patients have every right to consider themselves as qualifying for a neuroimmune or neuroendocrine disorder. Especially in the absence of any specific tests. During my life, I have correctly diagnosed myself with depression, hypo-thyroidism and CFS/ME (at different times in my life), which is more than I can say for my doctors who, in the case of my hypothyroidism, had been sitting on my test results for 2 years (by the time I had worked out that I had hypothyroidism), but had failed to notify me of the results.

    These diagnostic criteria might be very helpful for patients, the patient community, researchers and doctors. I wouldn't be so quick to dismiss them.

    Thanks for the info.
  9. jace

    jace Off the fence

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    The BMJ published this rapid response within 3 hours of posting:
    So I'm not as pessimistic as some. It would be great if we all presented our medics with a copy - I know I'm going to, sometime next week.

    It would also be great if this thread had its name changed to something like "ME - International Consensus Criteria"
  10. Nielk

    Nielk

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    "here may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour."
    straight from the paper.
  11. Nielk

    Nielk

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    I am very impressed Suzie that you run several websites.
    I am sure that you have loads of knowledge on ME. (I'm not being cynical - I'm serious)
    I'm not sure what strawmanning means. Never heard of the word.
    You question the origin of the paper, which is clearly stated - who all the participants were. The fact that they started with the CCC criteria and improved on it based on their collective knowledge of clinician in 13 countries who have seen a combined 5,000 patients. So when people say, where was the patient input, I believe that these doctors know what we think by way of having talked to and studied so many of us.

    In my mind, there is NO WAY that anyone can put a set of diagnostic criteria that will satisfy all the patient population! And that's ok with me. I have not seen $5,000 patients and claim to know better.

    As far as Jason's input, I have no idea but whether there was input or not - there are enough representatives there who are pretty impressive.

    People are complaining. (firstly because that's what people do)
    They say how does this effect the CDC. Is that a reason to minimize the importance of this international document.

    It is clear to me that they wanted to put this in writing to help the GP's diagnose the illness. To help arrow down the illness so that every study out there would use the same criteria and to give it a name that is not laughable.

    This is not directed to you but, I am amazed at the people here who have commented "I didn't read the paper yet but...............................................................................
    I think that we(many of us) have become so cynical that we can't recognized a good thing for what it is.
    By the way, they do say that this is an unpublished draft.
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  14. max

    max *****

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    The 'ICC' is another move in the right direction toward the tipping point for turning the view of the medical establishment.

    Has there been any comment from the shrinks? Surprised they did not think of using the words 'International Concensus' for their Oxford Criteria - Bit of a scoop for us!

    I can't, yet, imagine what it would be like to deal with this illness without the constant battle with the medical authorities, the government and the psycs. Plus, it would be good to not have to check here for the latest 'wind-up' every day!

    Still......... time will tell - it always does.
  15. Guido den Broeder

    Guido den Broeder *****

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    They are all good questions, Suzy.

    I have another one: what about the postviral aspect of the disease, i.e. the herpes virus connection (rather than XMRV)? Is that why Lerner and others are not among the authors? I feel that without this aspect, the criteria are incomplete.

    Regards,

    Guido
  16. Bob

    Bob

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    Um, I think that's a bit unfair.

    Nielk, if you had read the rest of my post, you would have seen that I was making generalised comments with regards to a set of criteria based on a biomedical model of ME. A perfectly valid discussion to have. I don't understand why this is an issue with you.

    I have looked through the paper, so I know what it's about in general. I just haven't studied it closely yet.

    Are we not allowed to make comments on the forum now, unless we have totally studied any published paper that we refer to?

    I think maybe some of my questions have been interpreted as being negative comments, so I'd just like to say that I have not been negative at all about this paper. I'm genuinely enthusiastic about it, even though I haven't read it all yet.

    But it's a bolt out of the blue, and so I have been asking questions about it, just the same as Suzy has.
    I am a bit bewildered because I was expecting the next big announcement or publication, re diagnostic criteria, to be from Lenny Jason who is working on the CCC, and he isn't included in this project.
    So I'm really surprised, but not negative.

    I'm very hopeful about what effect this paper is going to have on our community, and when I've read it all, I might be even more hopeful.
  17. Bob

    Bob

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    Nielk, some of us are just asking questions to understand more about the background of the paper.
    I think I can safely say that those of us asking questions are not trying to play down the importance, or significance, or potential benefit of these new criteria.
    We are just interested in the background. You are misinterpreting curiosity as cynicism.

    And I don't think that members of the forum should be giving other members a hard time for asking questions about this paper, or for making comments if they haven't read the entire publication.

    Is it possible that we could all carry on this thread in a constructive and non-personal way now, if we have resolved any misunderstandings?
  18. glenp

    glenp "and this too shall pass"

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  19. Ember

    Ember Senior Member

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    It might help to note the make-up of the International Consensus Panel:

    Bruce M Carruthers MD, CM, FRCP(C) (coeditor)
    Marjorie I van de Sande BEd, GradDip Ed (coeditor)
    Kenny L De Meirleir MD, PhD
    Nancy G Klimas MD4
    Gordon Broderick PhD
    Terry Mitchell MA, MD, FRCPath
    Don Staines MBBS, MPH, FAFPHM
    Peter Powles MRACP, FRACP, FRCP(C)
    Nigel Speight MA, MB, BChir, FRCP, FRCPCH, DCH9
    Rosamund Vallings MNZM, MB, BS, MRCS
    Lucinda Bateman MS, MD
    Barbara Baumgarten-Austrheim MD
    David S Bell MD, FAAP
    Nicoletta Carlo-Stella MD, PhD
    John Chia MD
    Austin Darragh MA, MD, FFSEM. (RCPI, RCSI), FRSHFI Biol I (Hon)
    Daehyun Jo MD, PhD17
    Don Lewis MD
    Alan R Light PhD
    Sonya Marshall-Gradisbik PhD
    Ismael Mena MD
    Judy A Mikovits PhD
    Kunihisa Miwa MD, PhD
    Modra Murovska MD, PhD
    Martin L Pall PhD
    Staci Stevens MA

    Marjorie van de Sande (coeditor) was the consensus coordinator for the 2003 documents.

    On its ME/FM Consensus Documents page (last updated on May 18, 2011) the National ME/FM Action Network posts: "The National ME/FM Action Network wishes to thank all the members of the Expert Consensus Panels, and their Consensus Coordinator, Marjorie van de Sande, its Director of Education, for all the time and effort put into these documents. It also wish to thank its members for their constant support and encouragement to see these documents to fruition."
  20. Ember

    Ember Senior Member

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    Is this what you were trying to paste?

    MYALGIC ENCEPHALOMYELITIS: INTERNATIONAL CONSENSUS CRITERIA
    Adult and Pediatric
    Clinical and Research

    Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

    A patient

    ? will meet the criteria for post-exertional neuroimmune exhaustion (A),
    ? at least one symptom from three neurological impairment categories (B),
    ? at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and
    ? at least one symptom from energy metabolism/transport impairments (D).


    A. Post-Exertional Neuroimmune Exhaustion (PENE pen?-e)

    Compulsory

    This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.


    Characteristics are:

    1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
    2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms
    3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
    4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
    5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

    Operational Notes:

    For a diagnosis of ME, symptom severity must result in a significant reduc-tion of a patients premorbid activity level. Mild (an approximate 50% reduc-tion in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patients recovery time from reading for 1?2 hour, it will take much longer to recover from grocery shopping for 1?2 hour and even longer if repeated the next day if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.

    Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.


    B. Neurological Impairments

    At least One Symptom from three of the following four symptom categories

    1. Neurocognitive Impairments

    a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
    b. Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

    2. Pain

    a. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches
    b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

    3. Sleep Disturbance

    a. Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares
    b. Unrefreshed sleep: e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

    4. Neurosensory, Perceptual and Motor Disturbances

    a. Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception
    b. Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

    Notes:
    Neurocognitive impairments, reported or observed, become more pronounced with fatigue.
    Overload phenomena may be evident when two tasks are performed simu-ltaneously. Abnormal reaction to light fluctuation or reduced accommo-dation responses of the pupils with retention of reaction. Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage. Mo-tor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.


    C. Immune, Gastro-intestinal & Genitourinary Impairments

    At least One Symptom from three of the following five symptom categories

    1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
    2. Susceptibility to viral infections with prolonged recovery periods
    3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
    4. Genitourinary: e.g. urinary urgency or frequency, nocturia
    5. Sensitivities to food, medications, odours or chemicals

    Notes:
    Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.


    D. Energy Production/Transportation Impairments:

    At least One Symptom

    1. Cardiovascular: e.g. inability to tolerate an upright position orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
    2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles
    3. Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
    4. Intolerance of extremes of temperature

    Notes:
    Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynauds Phenomenon. In the chronic phase, moons of finger nails may recede.

    Paediatric Considerations
    Symptoms may progress more slowly in children than in teenagers or adults. In addition to post- exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances.

    1. Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness.
    2. Neurocognitive Impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school program.
    3. Pain may seem erratic and migrate quickly. Joint hyper-mobility is common.

    Notes:
    Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults.

    Classification
    Atypical Myalgic Encephalomyelitis: meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

    Exclusions:
    As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patients history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded.

    Paediatric: primary school phobia.
    Co-morbid Entities:
    ? Fibromyalgia,
    ? Myofascial Pain Syndrome,
    ? Temporomandibular Joint Syndrome,
    ? Irritable Bowel Syndrome,
    ? Interstitial Cystitis,
    ? Raynauds Phenomenon,
    ? Prolapsed Mitral Valve,
    ? Migraines,
    ? Allergies,
    ? Multiple Chemical Sensitivities,
    ? Hashimotos Thyroiditis,
    ? Sicca Syndrome,
    ? Reactive Depression.

    Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.

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