1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

PEM/delayed fatigue - cardinal symptom?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Sasha, Oct 28, 2010.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    I had a run-in with an NHS person a few weeks ago about CFS vs ME. I was trying to argue that it was no good her trying to get me to do GET because the evidence was based on people with an ill-defined fatigue syndrome (CFS, probably Oxford criteria) rather than what I'd got (the neuro-immune disease ME). I'm seeing this person again (last time, I hope) next week and would like to be better prepared.

    My impression is that the 24-48 hour delay in profound fatigue following the activity that causes it is considered as a cardinal symptom (i.e. you have to have it or you don't get the diagnosis) of ME. My questions:

    1. Is it delayed fatigue rather than PEM that's the cardinal symptom? Am I confusing two things? I'm assuming PEM = feeling not just tired but flu-ish after exertion, but not necessarily delayed.

    2. Where have I got delayed fatigue as a cardinal symptom from? Is it the Canadian Criteria?

    3. What's the history of delayed fatigue being adopted as a cardinal symptom? How does something get chosen by researchers to be a cardinal symptom and rejected by others - that is, what's my argument for saying that I have "proper ME" rather than just unexplained fatigue, because my fatigue is delayed?

    4. Is there any evidence on what proportion of NHS-defined CFS patients have ME?

    Embarrassed not to know this stuff already! :( Would be very grateful for references/links to any academic papers, including the latest systematic review the NHS is basing its training of personnel on.
     
  2. Cloud

    Cloud Guest

    I think we all have a delayed PEM and know it's exclusive to ME/CFS. For me it's more like an escalation of symptoms that build over about 24-48 hours. I can start out mild and progress to severe over that period of time.....or I can have no symptoms at all for many hours until it hits me hard and sudden.

    I can't say which credible source, if any, first formally tagged PEM as the "cardinal symptom", but it's probably mentioned in the CCD, Dr Cheney, or Dr Hydes work. I vaguely remember Cheney saying that heart failure was the only other disease that had the PEM symptom.... except with heart failure the PEM came on immediately, whereas ME/CFS could be delayed. I don't recall any source other than us patients formally tagging "delayed" to the cardinal symptom, PEM. But then, I don't remember what I had for lunch. Wait....avocado on rice cake and a glass of vegetable juice. Humming the Oz scarecrow song.....If I only had a brain.....
     
  3. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,612
    Florida
    These articles on PEM may answer your questions ...

    http://www.cfids.org/cfidslink/2010/090103.asp

    IMHO though ... 1. Delayed fatigue is PEM which stands for post exertional malaise. If not mentioned in the above link, Pacific Labs is testing us for this. There's a wide variety in our reactions though ... as in some will get this from trying to keep up with their daily routines and some only get this if they excercise too hard. Not everyone feels fluish when they have PEM. Which I why I think it's called malaise ...
    2. Answer could be in link above.
    3. Answer could be in link above.
    4. This one made me laugh ... sadly, because the definition of CFS/ME is so vague, we don't have that data.

    FWIW. Does this mean you don't feel weak or tired during normal activities like washing dishes, walking, etc ? It would be interesting to see who feels tired all the time and who gets PEM.

    I feel tired / wiped out / weak most of the time while I'm upright. So, I thought my PEM was due to my orthostatic intolerance. Meaning my upper body (brain, heart, lungs, kidneys, liver, etc) doesn't get the required amount of blood and oxygen to function properly while I'm upright so toxins build up. And it takes me a couple of days of resting laying down to eliminate those toxins and repair those organs ... BTW. My PEM hasn't been nearly as bad since July when I started taking pregnenolone, MB12, ADB12 and testosterone. KOW ... KOW ... KOW ... ; )

    hth ... x
     
  4. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    I don't really like the concept of PEM. I think its still way too subjective. I don't think we do ourselves any favors by supporting a symptom that is still primarily defined by malaise and fatigue. I am hopeful that Pacific Labs and others will come out with some good work in this area but until the malaise and fatigue is dropped or quantified better (ie the actual dysfunction is defined and measured) than PEM should not be a primary symptom.
     
  5. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,077
    U.K
    I also get quite confused by the term PEM and what it is supposed to mean. I was diagnosed as havign M.E as opposed to CFS, but i dont think that wqs for any particular reason - my doctor never took a full history or asked me any questions at all.

    For me i am never sure if the term PEM is describing delayed fatigue or not. I get delayed onset of severity of symptoms if i push too hard. but i also have constant malaise and then there is immediate exertional malaise which is the one i get as soon as i have hoovered for say 5 mins or walked a 100 metres slowly. this type of malaise is like the type where i eel like i am ging to die or must lay down and passes within 20-30 minutes if i do stop, leaving me with just the constant malaise and the delayed malaise!

    Does this make any sense to others at all?
     
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    Hi Justy - I get both fatigue that builds up as I do an activity which eventually forces me to lie down, and fatigue that is delayed by about 24 hours if I really overdo it. I can't remember if I get actual malaise (as opposed to fatigue) or not - at the moment I have a bad cold or the flu and have malaise, and find it quite hard to remember what it was like before!

    I'm afraid I'm still confused about PEM (though thanks for trying to de-confuse me, guys!). I will do some reading on this when I'm over my bug.
     
  7. Cloud

    Cloud Guest

    Post Exertional Malaise is a terribly inappropriate and misguided phrase. I like Post Exertional Relapse better. Both "fatigue" and "Malaise" need to be stricken from names and definitions of this disease. Sorry Sasha....getting away from your questions.
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    That's OK, Cloud! I certainly think "fatigue" should come out of our name (just as cancer isn't "acute lumps syndrome"). I think I read somewhere that the definition of "malaise" changed fairly recently from a fluey feeling that indicates cytokines being upregulated (and is how people on chemotherapy feel) to now indicating a sort of general "bleurgh". Not sure about that. Some words have specific medical meanings but also are used in a different way in everyday language and I think malaise was one of them. I used to think that malaise was a useful and specific word but now I'm not so sure.

    I also think there's a different between "post-exertional" which suggests something that follows immediately and "delayed after exertion". It's a pity that something that is supposed to be a cardinal symptom has such a non-specific name.
     
  9. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Some Dog Drool

    PEM or Post-Exertional Malaise or Fatigue is over and above what we experience on a daily basis. It is caused when we cross that arbitrary "envelope" the defines what our bodies can handle and seems directly or indirectly related to cardiac function on any given day or at any given time.

    For instance you may be able to walk a nice slow 1/2 mile on a particular day with no ill effects later in the day or the following day. However if you take the same walk the next day you may notice a "crash" or a much higher level of pain, fatigue, more rapid heart rate or general flu like feeling.

    There is considerable documentation regarding this particular phenomenon in ME/CFS (see below) It is a unique hallmark to the illness and doesn't occur in quite the same way anywhere else.

    1-(Carruthers et al 2003) otherwise known as the Canadian Consensus criteria was the first to Incorporated the PEM symptom as a diagnostic criteria.

    The Dr.s Light have probably done the most significant work in this area but they have built on some great work over the years as well.However if I understand correctly they have patented a test that can be used after an exercise test to prove a specific cytokine signature so their work is unpublished at this point while all the legal aspects are set up.

    However there is the work of Vermeulen et al 2010, Patients with CFS performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity.


    Another is the Nitic oxide metabolite production during exercise in CFS by Suarez et al 2010 which found

    For every study on Pub Med that shows an abnormality in ME/CFS patients, and all the scientific study's do show an abnormality, there are an equal number of psychological studies that show some time of perceived improvement from a psychological perspective. This could be manipulation of data or different cohorts or what ever.

    My advice would be as follows. Print out each of the abstracts of biomedical exercise intolerance, use a highlighter to highlight the results which all show an abnormality and take them with you. Be dramatic and lay them out side by side by side. (big grin) And then hope your NHS person isn't one of those who ignores whats right in front of her face. Good luck and I'll put paws together that it works out for you.
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    Hi George - thanks very much for putting all of that together! That's a very informative summary. It's really quite a complex symptom. I think the biomedical studies are much more credible than the psych ones because of the measurement issues in the latter.

    That graph that the Lights produced for that Journal of Pain cover was just jaw-dropping so I'm curious about what they're coming up with next. They're well worth watching.

    This is all reminding me that I need to have another go at that energy envelope stuff!
     
  11. maryb

    maryb iherb code TAK122

    Messages:
    2,925
    Likes:
    2,061
    UK
    QUOTE=justy;133432] but i also have constant malaise and then there is immediate exertional malaise which is the one i get as soon as i have hoovered for say 5 mins or walked a 100 metres slowly. this type of malaise is like the type where i feel like i am ging to die or must lay down and passes within 20-30 minutes if i do stop, leaving me with just the constant malaise and the delayed malaise! Does this make any sense to others at all[/QUOTE]

    Absolutely the same - hard for others (none me-ers)to understand when I say I HAVE to stop it means right now. The fact that after resting for a while it does pass enables me to accept it more easily now, I used to worry so much in the early days.
     
  12. Cloud

    Cloud Guest

    Great advice George. I looked for (and couldn't find) the Light study graph.....it would be ideal for these purposes.
     
  13. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    Hi leela - I think you meant that for that other thread about the circular rash! Thought it's very educational!
     
  14. leela

    leela Slow But Hopeful

    Messages:
    2,465
    Likes:
    3,056
    Couchland, USA
    :confused:Yes, somehow through the attachment process, i returned to the previous thread--brainswell huge today, like a cement hot air baloon...think i've fixed it now.. at least now you know what ringworm looks like, just in case!!
     
  15. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    :eek::eek::eek::eek::eek: Wow, I hope that wears off very soon!
     
  16. leela

    leela Slow But Hopeful

    Messages:
    2,465
    Likes:
    3,056
    Couchland, USA
    :hug::hug::hug::hug::thumbsup:
     
  17. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Light Study Slide

    I don't know if this will come out well enough but this was from the CFIDS presentation last um, well, a while back. (grins)

    CFS_lightstudy..jpg

    if you click on it, it should get bigger.
     
  18. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    Thanks George! I just think that graph is amazing, amazing, amazing. I've been thinking of carrying a print-off of it in my bag everywhere so that if anyone suggests exercise will do me good I can whip it out and show them why, generally speaking, it won't. I've got a very kind friend who I have coffee with every week and every so often he'll say that he's sure a little bike ride (!!!!!) will do me good.I can barely walk the five minutes to the coffee shop. I've tried over and over to explain and he understands that when I'm at home on my own I'm mostly stuck on the sofa resting but he really struggles with the "exercise = bad" thing.

    As did I for years, actually, and still do, even after 25 years of illness. Every time I feel better, even if it's just for five minutes, I can't believe I felt so awful just five minutes ago and that I shouldn't just get up and do stuff. That Light graph helps me believe it.
     
  19. justy

    justy Senior Member

    Messages:
    2,738
    Likes:
    3,077
    U.K
    i really can relate to this. Isnt this the same thing as the definition of insanity? to keep doing the same thing but expecting a different result! (lol)

    on a more serious note, it was great to see the graph. I think Sasha that you are right about carrying a copy around with you - nly i need it to remind me, even after 15 years, that i really am sick and not just needing to pull my socks up!
     
  20. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    I'm thinking of getting a laminated card version of it to carry in my wallet, justy!
     

See more popular forum discussions.

Share This Page