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Is it possible to have ME/CFS without having any form of PEM?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Skippa, Nov 7, 2016.

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Yes it is possible to have ME/CFS without PEM, No there is always some form of PEM

  1. PEM is NOT required

    11.1%
  2. PEM is required otherwise it is another (perhaps similar) disease/disorder

    88.9%
  1. Skippa

    Skippa Anti-BS

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    Really interested on the general consensus about this, after reading another thread, I thought this question was done and dusted signed sealed delivered...

    Personally, I see some form of PEM (even just a sniffly nose) as the absolute essence of ME/CFS... there is a limit, that once crossed, induces symptoms... ergo PEM
     
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  2. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Not sure. I have really marked PEM now, but for the first 15 or so years of my illness, my symptoms were very immune-y. And they followed an extreme relapsing-remitting pattern. In good periods, I could exercise as much as I wanted. But when a relapse came (which was never linked to any actual exertion, it just happened randomly), I was unable to lift my head from the bed. Its hard to know if you have PEM if you can't get out of bed to do anything in the first place in order to bring it on.

    I suspect that exertion is just one of a number of factors that determine the expression of our illness at any one time. Many of the others are just not visible to us.

    I also suspect its kind of easy to overattribute random fluctuations in our condition to our activities. I'm not saying that PEM's not real - its totally real - but sometimes our crashes might be to do with factors we can't see (other challenges to our immune system like viral infections, for example). All we see if the last few days of activity, so we attribute accordingly. I just suspect us humans are not very good at attribution, and when we do it in retrospect, we can easily get it wrong.
     
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  3. A.B.

    A.B. Senior Member

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    We don't know enough yet.
     
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  4. taniaaust1

    taniaaust1

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    Though I completely agree that PEM is needed for a ME diagnoses and I believe it should be there for a diagnoses, im the one who just voted no. I'll explain why I say this and I have three situations in which you may not notice PEM.

    situation 1 (start of this illness, before its a full time set in illness)

    Firstly the first year or 6mths or so of my ME, I was like woolie just described. I didnt seem to have PEM at all. I was only getting ME flares with what could of been atribuated to late nights.

    eg I'd crash and get sick if I'd stayed up late for several nights working on an assignment. So was I getting sick cause I had less sleep then normal? (Ive read hat that can really knock ones immune system around) was I getting sick due to stress of assignments? or did I get sick cause I worked hard studying? It wasnt obvious PEM though I was getting very sick.

    Also for that first 6mths to a year, I had completely well times in between these bouts of what doctors were diagnosing as "an unknown virus" (they just diagnosed me over and over "you must of caught another virus". Till I pointed out that no one catches viruses that much over and over and over again. (it was the complete wellness in between the bouts which hid it was ME/CFS)

    . Note physical exercise I was completely fine with till I'd had this illness for about a year (it was only assignments or study for exams which made me ill and put me in bed for up to a week, rest of time I was fine).

    situation 2 (very severe ME cases, constant ongoing severe symptoms)

    When I was completely bedridden with severe ME and extremely sick. I was very very sick all the time and couldnt do much at all. I was so constantly extremely sick. All I did most of the time for about a 9 month period was slept and only was awake about 20 mins a day to eat and drink so no noticable PEM,

    I'd just wake up once a day and struggle to stay awake, it was so hard just to keep my eyes open and then eat a little and fall straight back asleep again. I went up to 3 days at a time without waking up at all in a comatose state, that couldnt be related to anything causing it as my whole state was constantly so bad.

    situation 3 (POTS with ME)

    POTS stopping one from being able to go into PEM. For PEM you often have to be doing a certain level of activity to trigger it. The amount of triggering activity is dependant on how bad your ME is. Now say you have developed severe POTS due to your ME and now cant do the amount of activity which usually causes your PEM (that's the situation I found myself in, could no longer do the on feet activities which caused me PEM).

    Ive heard also one of the ME specialists talk about this about those with bad POTS with the ME not being able to go into PEM, so I know Im not the only one who has had times where I dont get PEM as I just cant do enough on my feet to get PEM

    I do get symptoms if I push myself in a wheelchair eg sore arms and dizziness but those can go away quickly when I stop the exercise so I dont call those PEM. I cant push myself for long enough in the wheelchair to cause me actual delayed PEM as I get symptoms which stop me being able to do so fast eg arm pain by the time Ive pushed myself across a room or dizziness with the effort.

    With my brain problems worst now though I get PEM from too much brain stuff even if I cant be on my feet enough at times to cause PEM.

    So yeah, I definately do have ME and have sometimes got PEM but in some situations I do not with my ME and have gone through lengthy time periods without PEM so I know one can have this disease without obvious PEM

    We NEED PEM though in our diagnostic criteria or otherwise too many will be wrongly diagnosed which can be dangerous if they have serious other issues.
     
    Last edited: Nov 7, 2016
  5. justy

    justy Donate Advocate Demonstrate

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    I'm not sure. I wouldn't like to exclude people who obviously have M.E, because as Taniaaust says above there are various instances in which you would have it, but its not showing up, or not as noticeable as it might be at other times.

    I am also fairly certain it is NOT an M.E specific thing - in my quest to find out what is worng with me I have hung around on:
    MS boards,
    Lupus boards,
    Thyroid boards,
    Lyme boards
    MCAS boards

    They all discuss something VERY similar. But whether the subjective experience of crashing or relapsing after too much activity, either immediately or delayed is the same in M.E as it is in these other illnesses or different as perhaps shown on exercise testing I do not know. Do we know if people with these other dx have ever done the same two day exercise tests?

    As i'm not sure I have refrained from voting.
     
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  6. Skippa

    Skippa Anti-BS

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    Wow this is very interesting, thanks it is causing me to rethink certain areas of my jumbled brain model of stuff.

    V interesting what @justy says about other illnesses featuring PEM too. Hmmm.

    Eta: even though most folks voted the NO option... maybe if ME/CFS is allowed to run its course, then eventually the patient WILL encounter PEM at some point...
     
  7. sarah darwins

    sarah darwins I told you I was ill

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    It's not the last word, by any means, but I think Richard Horowitz' conception of Multiple Systemic Infectious Disease Syndrome is pretty useful, especially as a template for treatment if not for research. His book helped me get round the ME/not-ME question to some extent.
     
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  8. wdb

    wdb Senior Member

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    I voted PEM is required but technically it depends what criteria you are using for diagnosis.

    Obviously you can't have Systemic Exertion Intolerance Disease (SEID) - it's right in the name

    You wouldn't meet ME (International Consensus Criteria 2011) - A patient will meet the criteria for post-exertional neuroimmune exhaustion

    You could potentially meet Canadian Consensus Criteria - A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue,sleep dysfunction, and pain.

    You could potentially meet The CDC (Fukuda 1994) Definition for Chronic Fatigue Syndrome -

    The concurrent occurrence of four or more of the following symptoms:
    substantial impairment in short-term memory or concentration;
    sore throat;
    tender lymph nodes;
    muscle pain;
    multi-joint pain without swelling or redness;
    headaches of a new type, pattern, or severity;
    unrefreshing sleep; and
    post-exertional malaise lasting more than 24 hours.


    The Oxford criteria doesn't even mention PEM and includes anyone who's a bit worn out- A syndrome characterised by fatigue as the principal symptom.
     
    Last edited: Nov 7, 2016
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  9. Nielk

    Nielk

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    Skippa likes this.
  10. justy

    justy Donate Advocate Demonstrate

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    They say other illnesses don't have this feature, but my experience is that patients of other diseases, such as those listed above do crash from exerting beyond their energy envelope.
     
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  11. TigerLilea

    TigerLilea Senior Member

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    I think the difference though is that people with ME/CFS don't just crash for a couple of hours or a day or two. For some of us it can last for a week to weeks at a time. I definitely think that in order to have a diagnosis of ME/CFS you have to have PEM.
     
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  12. Hip

    Hip Senior Member

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    Good article on this subject here: To PEM or not to PEM? That is the question for case definition

    One excerpt from this article (heavily modified by me):
    Note:
    Oxidative metabolism = process in which oxygen is used to make energy from glucose.
     
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  13. BurnA

    BurnA Senior Member

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    Is there a distinction between "experiencing PEM" and being "susceptible to PEM but not experiencing it because you can't exert yourself "

    I would say that in both those cases the patient has PEM, as a feature, but in the second case they may be unaware of it.

    Maybe it's more of a philosophical question, does a patient have a symptom if they are unaware of it ?
     
  14. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    I think that might be in relation to what I said above:
    I just want to point out that that was only part of my point. The other part was that during remissions, I had no PEM at all. So it was either not present or it was not measurable.

    The fact that my condition evolved towards a less relapsing-remitting pattern, and more towards a stable illness characterised by marked PEM, would suggest to me that both these sets of symptoms can have a single common cause. Unless you want to suggest I had two entirely independent diseases at these times, but that doesn't really fit the gradual transition I experienced. Instead, I suspect that I've always had the same disease process, but it wasn't always characterised by PEM.

    That doesn't mean I'm not in favour of operational definitions for research that include PEM. That could be useful at filtering out other illnesses and worth the exclusion.

    (PS No, you can't have a symptom you're unaware of, because a symptom is by definition a self-reported complaint. So then it can't be a symptom. It still could be an objectively measurable change, if there is some way to objectively measure it. )
     
    Last edited: Nov 7, 2016
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  15. Skippa

    Skippa Anti-BS

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    @BurnA @Woolie would it perhaps be fair to say, or at least be a possibility that:

    A) patients so ill that they can't exert themselves to PEM level are already in one big PEM crash...

    And

    B) relapsing patients who find PEM "goes away" for a while still have PEM as a possibility but their energy envelope has risen substantially because [unknown reasons] albeit ready to return/reduce at any time...
     
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  16. Skippa

    Skippa Anti-BS

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    Just realised I've been posting a lot today and got to thinking...

    Maybe PR posting activity is an indicator of PEM...

    If you plot a user's activity on the forum against dates by day and post count, I wonder if it would correlate to PEM?

    Anyone out there with nothing better to do than extrapolate some PR data and make some pretty graphs?
     
  17. Neunistiva

    Neunistiva Senior Member

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    I never heard of any other patient describe PEM, but a few days ago Dr. Lucinda Bateman said an autoimmune disorder primary biliary cirrhosis also has PEM as a symptom.

    That being said, the question didn't ask if only ME/CFS patients have PEM, but whether one can have ME/CFS and not have PEM, so I voted that PEM is required.

    It is possible that by including PEM a few people who don't realize they have it might be accidentally left out (not that it's much difference for them at this point since there's no treatment) but I think if we don't require PEM we will open floodgates to myriad of fatiguing illnesses muddling ME/CFS patient cohort for research.
     
  18. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    Yea, I think its fair to say that its probably the most common specific symptom reported by people with MECFS. So its not bad to use it as a marker for now. At least until we have something better to go on.
     
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  19. Sidereal

    Sidereal Senior Member

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    I would be surprised if PEM were specific to ME/CFS. You do hear patients with Sjogren's syndrome describe similar crashing episodes after exertion and I'm not surprised to hear it happens in PBC as well. So, I am not convinced that the 2-day CPET stuff is specific to us (more research is needed on this comparing us to autoimmune cohorts) but what's more important is that it points towards organic pathology and it means that the fatigue can't be dismissed as imagined.

    During periods of relative remission from this illness I did not have PEM from regular daily activities, at least not the sort of PEM that was perceptible to me, but the disease was clearly still there waiting to come back. However, it is possible that the PEM threshold was simply raised higher in the sense that I still would have experienced it had I REALLY pushed myself like say if I'd climbed a mountain.
     
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  20. Skippa

    Skippa Anti-BS

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    Sadly it can be because we are "scared" of exercise and we over react like whiny little hypochondriacs to the normal aches and pains of exerting oneself.
     
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