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Discussion of the NEW International Consensus Criteria

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

  1. Nielk

    Nielk

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  2. Tristen

    Tristen Senior Member

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    I don't follow Jamies Blog, so I can't comment on that, but I would be concerned about constant PENE as an absolute deciding requirement for the criteria. Otherwise, how can it be explained that I now fit this criteria 100%, but didn't have PEM/PENE for the first 10 years? Better stated in my mind would be, "Have you ever had PENE".

    PENE is by far my worst symptom (now) and it's understandably considered the cardinal symptom, but it's not constant across the full duration of the illness for everyone with ME. If all these people don't really have ME, then this new criteria needs work.
  3. Nielk

    Nielk

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    You might not follow her blog but, many people do, They follow her because she is interesting but, mainly because she is an MD and suffers from ME/CFS. Not too many around that fit that mold. It's her blog and she can say anything she wants but if you go by any of the criteria for diagnosing CFS - PEM is a major symptom. The new ICC describes it as PENE.

    There is no such thing as constant PENE. By definition, it's only a symptom that reveals itself when you overdo things. If you stay within your "envelope", you will not have that symptom.

    If for example after 5 years of "illness" you did not experience PEM, how can anyone diagnose you as having CFS? If you have it now, then now you have the illness. The first ten years when you didn't experience PEM-PENE, you probably did not have CFS as this seems to be an essential symptom for diagnosis.
  4. Tristen

    Tristen Senior Member

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    Yea, I know who Jamie is, her credentials, and that many follow her blog. But since I don't, I wasn't able to comment on that part of the post I was responding to. Although, I will say that from reading this thread, it sounds as though she and I have some similar experiences with this disease. Not unusual by no means.

    I also understand what PEM/PENE is all about. I've been dealing with it for many years. I know the symptom itself is not constant. I was using the word "constant", meaning to have it for the entire duration of the disease; From onset to current day, having crashes (PEM/PENE) when overdoing it with the exertion. I didn't have that for about the first 10 years. My disease evolved from being Immune to Neuro (symptomatically). Reaching the Neuro phase was when the PEM started. I'm certainly not alone with that pattern.

    As far as not having real ME that first 10 years, I don't see how that's possible since I've been sick 24/7 from day one to current day. No remissions. Seems like just one progressive disease that has only changed it's presentation over the years, not different diseases. The "Pre-ME" idea seems possible, but it would still be ME. This seems a topic worthy of constructive discussion.

    I wouldn't be affected negatively even if I didn't fit the new ME criteria (but I do). It's not about me. It's about how this will affect our community as a whole and so far, it seems positive. It just appears the criteria needs a little tweaking. Anyhow, I'm celebrating these changes, even if they are but an early draft form.

    best,

    Tristen
  5. SOC

    SOC Moderator and Senior Member

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    I'd argue that, in a way, there is. I've been in a stage that I could describe as "constant PENE" in that I was overdoing so consistently that I never got out of the relapse. Since I had PENE before and after, when I wasn't constantly overdoing, I can say that it's the same symptoms, just constant.

    That is different from a typical acute illness, but may not look different at the time.
  6. Nielk

    Nielk

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    This is real confusing. I guess PENE comes in different intensity because when I experience PENE after pushing myself, I have such a crash that I can't function. I can't possibly push myself to do more when I'm in that state. I have to wait till I recover somewhat. I guess these posts just prove how different we all are and how this illness affects us differently.
  7. SOC

    SOC Moderator and Senior Member

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    So true, Nielk. I know my PENE is like post-exertional relapse -- flu-like symptoms, brain fog etc, while others have more pain, and others have complete collapse. Mine has been different over time, too. Maybe it just has to do with what stage we're at or what secondary infections we have.

    *sigh* There's so much we still don't know about this illness.
  8. Bob

    Bob

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    Very interesting discussions here re PEM/PENE and about immune disfunction vs neurological pattern of illness.
    I was not aware of Tristen's and Dr Jamie's pattern of illness before now.

    I had severe post exertional reactions from day one, and continued to have really unstable and severe post exertion relapses during the first 3 years. Now, after 8 years, it is more stable.

    When I went for a diagnosis at our local 'specialist' NHS ME service, the 'specialist' asked me when I was fatigued.
    I said I was fatigued all the time.
    He then asked if it was only after exercise.
    So I said no, it was all the time. (Obviously it's worse after exercise, but that's not what he asked me!)
    He then asked me the same question again - was it only after exercise - and I could see him hesitating and expecting a certain answer, and I thought to myself that if I didn't just agree with him here, then I wasn't going to get a diagnosis!
    So I just said, oh yes, after exercise, and he gave me an official diagnosis.

    (Then all I was offered was a group session of Graded Exercise Therapy!)

    (That's the NHS for you!!!)

    So I guess a set of criteria is only as good as the doctor who is using them, and our doctors need training.

    For example, untrained doctors would not notice 'sudden onset' if the sudden onset event was a mild episode.
  9. Nielk

    Nielk

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  10. Snow Leopard

    Snow Leopard Senior Member

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    Well at least the irony is not lost on us.
  11. Bob

    Bob

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    Well, it is the NHS, so I didn't expect much more. In England, our 'specialist' NHS ME services only offer CBT or GET, and maybe some physiotherapy if we are very lucky and they have enough funding for a physio-therapist (my service didn't). Our NHS family doctors are supposed to help us with symptom relief, such as with pain and sleep etc.

    The worrying thing was that he was the 'specialist' for our whole region!
    I should have made a complaint about it, but I was too ill at the time to be bothered.
  12. Bob

    Bob

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    lol, yes...

    If I feel fatigued all the time then it's not Post Exertional Fatigue, right? :rolleyes:
  13. Tristen

    Tristen Senior Member

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    "What does Phase III sound like? "Within my boundaries, I don't feel too bad. I'm pretty comfortable. My problem is that every time I try to exceed those boundaries, I crash. I get worse. So I haul back within my boundaries, and I'm now comfortable again." Dr Cheney on the 3 phases of me/cfs http://www.dfwcfids.org/medical/phases.html Old news, but interesting and possibly applicable for the topic of symptom evolution with disease progression.



    On fatigue: I have only acknowledged it as a symptom when necessary to appease doctors, otherwise I wouldn't acknowledge it at all. I guess fatigue is there but too insignificant to realize and surely has no business being top of the list. I know fatigue because I was a runner, and did extreme physical work for a living for many years. Nothing I experience with this disease resembles the fatigue I would feel from over exertion back then. What I feel now can best be summed up as having an IV of poison running in a main vein. It's always running and I can't shut it all the way off, but I do have some control over the drip rate, with pacing. Over exerting myself is as good as cranking it wide open. It's the same symptoms, only greatly exacerbated.

    I feel the removal of "Fatigue" as a required symptom, is the most appropriate and beneficial change to the criteria.
  14. LaurelW

    LaurelW Senior Member

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    "There is no such thing as constant PENE. By definition, it's only a symptom that reveals itself when you overdo things. If you stay within your "envelope", you will not have that symptom."

    Not sure I agree with this, Nielk, since I've gone through phases where I wasn't able to get enough downtime, and the PENE was more or less constant. I think you would probably feel more of a difference if you had it and recovered from it, making it more distinct. It makes me wonder if some patients have it and don't realize it because they don't rest enough, never stay within their energy envelope, and feel bad all the time.

    That being said, I still think it should be the hallmark symptom of ME.
  15. Tristen

    Tristen Senior Member

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    When my illness was severe, I could crash for up to 2 months following over exertion. It was obvious to me it was a crash, and not just the baseline severe illness. But I do see how it could be very easy to confuse the overlap when the illness is at a severe stage.

    Most of my experience with PENE is about a week recovery. These days, average is 3-4 days. I'm at a mild-moderate baseline level of illness now, and I've become smarter (or less stupid) with disease management.
  16. Battery Muncher

    Battery Muncher Senior Member

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    (Sorry, I haven't read the thread but I have an appointment soon)

    Does anyone know how much weight this paper carries? I'm thinking of showing it to my psychiatrist, but I don't want to make a fool of myself.
  17. Nielk

    Nielk

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    I hope that it will carry a lot of weight. At this point though it is being readied to be published in The Journal of Internal Medicine. Once it's published, we'll know more of how it's accepted. The authors are certainly impressive with a vast amount of information backing the paper. It is also impressive that it's an international group that wrote it with 100 % agreement. They authored this without the backing of any organization of the government or activists. Therefore, it remains to be seen how they will adapt to it. I personally would have no problem showing it doctor. It already appears in Pubmed and Wikipedia and draft form in Internal medicine.
  18. leela

    leela Slow But Hopeful

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    The day we were made aware of it I sent it to every health practitioner I work with, and friends who are practitioners.
  19. taniaaust1

    taniaaust1 Senior Member

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    Nielk I disagree with that too. some are so severe that restricted normal life stuff eg just eatting or showering may be giving them PENE.. hence for some, they may have constant PENE

    I really like Dr Cheneys description of this disease as it was exactly how my disease progressed. Im currently in Stage 3, if I manage to stay within my boundries I are mostly okay.. while most of my hormones are now stuffed eg cortisol, testosterone, melatonin (all have been supplemented)

    Im so happy with the move from fatigue to PENE. I had a stage of ME in which my neuro symptoms were so severe I had no chance to get into "fatigue" as I'd start getting tremors and spasms/tics/myoclonus and seizure like episodes and sudden collapses before the fatigue or tiredness could hit me. Being suddenly incapitated before I really feel much fatigue still does happen to me at times today. So i think more empathisis on PENE then fatigue is great. (being incapitated by the neuro systems seemed to prevent me in over doing things more and seems to nowday prevent me from having long crashes).
  20. biophile

    biophile Places I'd rather be.

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    "Constant PENE" makes sense for people who are severely affected to the point where basic survival and even merely being conscious is over-exertional. Even for patients less affected than that, their body's metabolic processes at rest are probably taxing already, the body may reach some equilibrium but is taxed further upon exertion.

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