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Jason and Evans: To PEM or not to PEM? That is the question for case definition

Discussion in 'General ME/CFS News' started by Ember, Apr 27, 2012.

  1. taniaaust1

    taniaaust1

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    Working out how sick someone is by such questions is so so deceptive as all it may be testing is just how well someone is able to control their symptoms by pacing.

    In a seven day period, if I pace very well... I could often say I felt no fatigue at all!!. I pace in a way in which I limit activities to the point of being able to stop most of my ME/CFS symptoms from even happening. (when they do start happening, they can flare up so darn fast and severely.. so I feel safer living life in a way in which I dont have them flaring).

    Im hoping that over much time, I can gain another remission like I did years ago by trying to always avoid doing things which bring on symptoms.

    I dont even know how to guarge how much I have.. as once again I try to stay below my symptom flaring limit.
    I actually dont at all know. My memory isnt even good enough to remember 24 hr periods well.. let alone a 7 day period. I wouldnt be able to answer these questions unless I'd before hand kept a 7 day diary of my symptoms etc.

    Without keeping a diary of my symptoms to refer too.. I'd guage my illness much better (as I like to think positively and I forget negative stuff) then what it is.

    Now with this question .. my answer may be very deceptive due to my past experiences of my illness and what I see as "extreme" may not be at all what another who hasnt experienced this illness so badly, may veiw as extreme.

    For me.. extreme exhaustion is when Im completely bedridden to the point where I arent even drinking or eatting well as I feel too exhausted to even do life sustaining things so are in bed feeling very hungry or thirsty but too exhausted to do anything about it..

    Extreme exhaustion is when Im to the point where I may piss myself rather then try to walk to a loo. So right now.. I'd say no.. I havent had extreme exhaustion in the past 7 days.

    I did have a post exertional episode (the day after shopping) in the past 7 days in which I had to go to bed while I was trying to have a short visit to someone, so had to be rude as ask them if I could sleep somewhere and hence then did.. falling asleep on their couch 10mins later.

    But I didnt see that episode as "exhaustion" as I was suddenly intensely sleeply tired to the point I was constantly yawning, eyes suddenly so tired I had tears running down face, 2hrs visiting, 4pm and I HAD to go to sleep.. I wasnt thou physically tired thou and for me with exhaustion means that Im physically tired too. Would you call an episode in which you arent physically tired at all.. exhaustion?
    I dont even know if I was mentally tired.. all I know is I was suddenly so sleepy tired that I was falling asleep.

    So questions like the above and judging people on set questions like that.. will all depend on how they PERCIEVE their symptoms.

    Irronically I can appear so great with those questions when Im in reality not doing hardly anything at all (only dressing and showering twice a week, only leaving the house to shop and go to appointments as Im not well enough to visit anyone without issues occuring, unable to do my own housework sa it brings in my POTS and if doing it consistantly.. makes my ME worst, so others have to do it for me).

    The above questions.. one can not tell the how life affected a person is being by their illness as it doesnt give an idea to the persons actual capability to consistantly do anything.

    These questions pose a strong risk of being misunderstood to the point one could be told one is healthy.
     
  2. Valentijn

    Valentijn Activity Level: 3

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    I think it is still PEM, and an important indication for ME diagnosis, even before we get diagnosed and don't realize it's PEM. I'd been getting sick and had to drop out of PE classes and martial arts classes for years before I really hit the wall. At the time I thought it was just bad luck, but in retrospect it looks a lot like PEM, just with a much higher tolerance.

    The problem is that PEM and the flu are impossible to distinguish between until you get a diagnosis and/or activity tolerance drops so low that it's happening consistently enough to be blatantly obvious.

    But a real test would make diagnosis and research soooo much easier :p
     
  3. mellster

    mellster Marco

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    Actually I do think there is a reliable difference between PEM and flu and that is fever, PEM is basically the flu without significant fever or without fever at all, often even while having low body temp. Anyone going to the doctor complaining about recurring flu like symptoms without fever should be considered a possible candidate. I know some run fevers as well, but I would say that is minority of likely less than 10% and then they run low grade fevers only.
     
  4. justy

    justy Senior Member

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    Hi rlc, this is such a well put together argument, i don't understand why it isnt more widely understood/discussed by the patient community. I think this discussion is so important that this post deserves its own thread.
    All the best, Justy

     
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  5. mellster

    mellster Marco

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    Agree on Justy's and rlc's point that PEM is definitely not exclusive to CFS, it is also possible that the patient could have a blend of borderline alternative conditions mentioned which lead to a CFS/ME like presentation. But maybe CFS is often just that and that blend of borderline conditions symptoms without a clear progress of a single condition could justiify a label such as CFS or ME and its own category among illnesses basically a functional breakdown/malfunction of one or more bodily/metabolic/nervous/immune systems.
     
  6. garcia

    garcia Aristocrat Extraordinaire

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    Hey Tania, did you ever try exercising? My argument is that for me, the very first obvious pathological symptom was that I could no longer exercise. I would go jogging for 10 mins and come back completely destroyed. The other symptoms I had were vague (unrefreshing sleep, fatigue etc.). I don't think you need a 2 or 3 day exercise test. At least in my case 10 minutes was enough. It was the PEM which told me that something was seriously wrong with my body.
     
  7. Marco

    Marco Old blackguard

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    This being the case, and it sounds more than plausible to me, what is the way forward for ME/CFS research?

    Continue to test a heterogenous group for a common biomarker that may not exist or get a 'well characterised' cohort together and test the crap out of them until you find out what is ailing each individual one of them?

    With the greatest respect to dr Hyde, this isn't something an individual MD can do. It needs to be a large scale systematic effort.
     
    justy likes this.
  8. waiting

    waiting Senior Member

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    PENE (PEM) is a defining feature of ME. As the researchers from the Pacific Fatigue Lab have proved with their work, the failure of a patient on Day 2 to reproduce the measures (within an 8% accepted degree of variability) on Day 1 of their Stevens' Protocol CPET is an objective measurement of PENE and demonstrates functional impairment. This failure, or lack of homeostasis, is only seen in ME patients. Even COPD and heart failure patients can reproduce the measures on a repeat test 24 hours later. (And COPD and heart failure patients surely experience severe fatigue and pain). See: http://www.research1st.com/2011/11/18/pfl-testing/

    Also, those 'picture in a thousand words' bar graphs from the Lights' work on gene expression compared ME patients to those with FM only and to those with MS only. See Slide 10: http://www.cfids.org/webinar/slides-100510.pdf Only the ME patients had such dramatic increases in gene expression after exertion (30 mins, 8 hours, 24 hours, 48 hours after) as compared to baseline (prior to the exertion). (And FM-only and MS patients also surely experience severe fatigue and pain).

    So, diseases other than ME also no doubt feature fatigue and pain, exacerbated after exertion, but not in the ways objectively measured by the above 2 groups of researchers.
     
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  9. Firestormm

    Firestormm Guest

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    Thanks Waiting. I hadn't seen those graphs before. Very interesting to see it all expressed in that way.
     
  10. Hope123

    Hope123 Senior Member

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    Absolutely and repeated for truth. Aside from the Lights work in Utah and the Pacific Fatigue Lab's work, Vercoelen in the Netherlands (I'm spelling his name wrong here) and Betsy Keller at Ithaca College have shown similar results.

    It's true that people with MS, lupus, heart failure, chronic lung disease and a host of other conditions may have symptoms, including fatigue, after exertion but they DON'T have flu-like all-over muscle aches and pains, sore throats, swollen lymph nodes, confusion, insomnia for instance in response to exercise. In many cases, people feel and sleep better, not worse, after activity. I say this as someone who has taken care of people with these illnesses.

    MS and lupus may be difficult to diagnose in some cases but they do have cardinal features different from ME. It only seems the same because PEM was never well-defined by the CDC and others leading people/ physicians to interpret it as meaning everything from "post-exertional fatigue" to "post-exertional depression" (the latter actually drawn from a medical resource). In fact, ME as Ramsey originally defined was not some amorphous diagnosis that required 6 months to make but rather a very distinct chronic fluctuating illness characterized primarily by PEM and cognitive issues that occurred soon after a respiratory or GI-type or other viral-like infection. Ramsey also stated that in mild-moderate cases, symptoms might not be prominent but they would be unmasked by exercise and without this feature, he would not diagnose someone without this feature as having ME. This was decades ago and now it looks like we finally made be coming full circle.

    Now's it possible that people may have changes in their symptoms over time and they may have less PEM with less activity, but if they were to try to have the same level of activity of their same-aged healthy peers, they would still have PEM. If they didn't, they either never had the type of illness Jason, the Lights, Staci Stevens, etc. are examining (ME) or they no longer have it.
     
  11. Firestormm

    Firestormm Guest

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    I have to say though Hope that I remain unconvinced (but willing to be convinced) of Twisk's comment (shown above but here also: http://www.research1st.com/2012/04/27/pem-case-def/#comments). I mean if you take PEM away from CFS - where does that leave CFS? And is it enough to distinguish a distinct condition let alone back up the nomen Myalgic Encephalomyelitis?

    Not saying it isn't but (as my reply to Twisk - I post as 'Jack' on blogs - I hope demonstrates) I'd just like some direction over where they are taking us next. And I cannot see the Health Authorities dividing the patients all ready diagnosed. Practicalities will intrude.
     
  12. alex3619

    alex3619 Senior Member

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    I think a huge part of the confusion and conflicting claims about PEM and PENE are from their rather vague definitions. I don't think there is one kind of PEM, I think there are several if not many. The kind found in ME may or may not be one kind (I think even there its several) and some of those may be unique to ME. We need more research, and more research in particular comparing ME to diseases like RA and MS, as well as post cancer fatigue syndrome.

    What we call fatigue from symptoms may be different patient by patient, or even different in the same patient at different times. PEM is a syndrome and a vaguely defined one at that. Sound familiar? The kinds of problems we have talking about CFS are repeating themselves talking about PEM. It needs more research. Thats why I am happy with the work by Pacific Labs and the Lights. They are not looking at vague symptoms so much as specific physiology. That will be the only way to disambiguate the problem.

    Bye, Alex
     
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  13. taniaaust1

    taniaaust1

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    Thou I hate the term PEM. It cant be just taken away and not replaced by something something else.. or we just wouldnt be defined from other illnesses and that post exertional distinction does need to be made.

    I personally want to see it replaced with "Post exertional ME symptoms" (this being a group of symptoms not explained by another illness and known in ME) .. hence leaving it more open to which of the ME symptoms a person may be crashing into.. Basically our bodies go haywire after exertion.

    Whatever definition used needs to be easily understood by doctors so they arent missing it, without every individual putting thier own interputations onto things.

    Yeah that is exactly what is happening..
     
  14. taniaaust1

    taniaaust1

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    My early ME (first year before it was permanent) was very very confusing.. I was still exercising without any consequences at all. Exercise wasnt a trigger for me that first year... my early trigger was stress (only major college stuff would do it) with a few late nights due to being up studying.

    If I had a big college assignment or collage exams and had a couple of late nights due to that.. I ended up sick in bed with a "virus" for 5 days to a week later.. "virus" gone and I was my normal self again (until a month or two later when I'd be hit again, some circumstances..

    I had 6-8 "viruses" in that year.. same thing each time but was completely healthy in between (I was a very active person and still doing all my sports in between these times fine, I was doing at least 2 exercise classes per week and a lot of exercise outside of those).

    A person in bed with virus/flu 5-7 days .. doesnt appear to have post exertional malaise as you dont tend to go out and try to go to any exercise class when flu ridden esp if you are healthy for the one to two months between these bouts and great when exercised at those times.

    If a person had to stop their regularly exercise classes that would make things clearer.. but in my case i didnt had to do that and was still going to classes fine (except those I had to miss due to that occassional "virus").

    Once full time illness thou... it was clear what it was.

    You obviously was PEMing if you had to give up your martial arts and PE classes. I was still happily active.

    No ME defination without a test being available, would of been able to include me in that first year without having many who havent got this illness included. Hence""post exertional" does need to be included even if some may be missed esp early ME.

    (it just means some people may have to wait till their ME is at a worst point before they can be diagnosed. That is far better then having people possibly being given a wrong diagnoses leading to a contamination of the whole ME patient group and other issues).
     
  15. ukxmrv

    ukxmrv Senior Member

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    I guess this is where we need a clear ME diagnosis in those early days from a consultant who knows about the disease.

    When I was first sick there were doctors still alive and still seeing patients who had been dealing with ME for decades that I could see. When I was diagnosed I knew nothing about post exertional malaise but the doctors I saw questioned me thoroughly on what happened with physical exertion. I had noticed the severe changes to my physical functioning and the symptoms which occured soon after and with such strength. The ME docs I saw said this was integral to a diagnosis of M.E.

    Realise that I was very lucky. It helps me now to think back and I just wish I'd asked more questions when I had the chance.
     
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  16. free at last

    free at last Senior Member

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    Hi Justy we always seem to connect a lot when we share our experiances. I awalys put it down to the fact that on your medical records it says CFS, so anything like another condition ( recently i had suspected mumps, and inflamation of the knee ) the suspected mumps was ok because the doctor measured a slight temperature. they like those measurables it means to them its not just anxiety. they like proof especially when they see cfs on your records. The knee swelling was a different matter, i waited outside the doctors. when the doctor appeared i quite quickly went to the surgery room. trainee took some details when the doc came in. and discussed the inflamation, the doctor said is it hard to walk on, i said yes, as by now the pain was growing and getting worse. the trainee actually spurted out. He seemed to be walking fine when he came in ? ( remember i was hurrying because i didnt want to breath around other patients ) i then said well look compare that knee to that knee can you see the difference? ( there was a marked difference ) he said no it looks the same. I then laughed turned to the Doctor and said look compare here. to how this area looks see its all swollen. He could see it im sure, because he said yes looks like theres some inflamation there. and i was given a anti inflamatory. The point is i mentioned cfs to the trainee. did i set myself up who knows. just like your dark patch on the lung justy. maybe they think ahh its just the ME causing it. we cant help. But on another occassion doubt your word. if they find it hard to see proof. Because you have CFS on your records. dammed both ways maybe? Im shocked that they have visable evidence but still you get this rubbish treatment and ignorance. But as long as the stigma of CFS is around our knecks, then expect more of the same. I am seeing a doctor today Justy. got a pain in my left hand side thats getting worse. ive had liver kidney cholestral and sugar testing. All negative. not looking foward to this today. yet if i lay on my left side it hurts all the time.its starting to hurt now just when i cough. its defianetly getting worse. I asked the doctor what do i do if it gets worse do i come back ? she said well i dont see why it would. and looking away said YES. Now im sure those tests ive had may not pick up a lung problem or pancreas. or whatever. But the apathy is amazing. Here i go again wish me luck. im seeing antother doctor, hope he doesnt see CFS on my records, and i really think i shoudnt mention it. Maybe ill get some concern, and not judgment ? I wont even begin to describe the reaction, if i talk about my anxiety. Like illness cant create anxiety. But anxiety can create false illness. Yeah think ill talk about my phobias on antother occassion. after all would love to know why it feels like ive been punched in the side for months now.
    x
     
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  17. free at last

    free at last Senior Member

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    Think you was lucky. lots are still dealing with this like it was thirty years ago ukxmrv.
     
  18. WillowJ

    WillowJ Senior Member

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    it's not always a good strategy to not mention ME/CFS. last time I did that I came away with a diganosis of regional pain syndrome. doctors don't like patients who are in pain and disabled and don't have a standard diagnosis.
     
  19. rlc

    rlc Senior Member

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    Hi Justy, RE i don't understand why it isnt more widely understood/discussed by the patient community.

    I dont understand it either, it just seem to be a case that some people have wrongly said that PEM is exclusive to ME often enough that everyone started believing it, but it is very disturbing that people are continuing to repeat the myth that PEM is only found in ME, no medical source has ever said that it is exclusive to ME, as you have found by looking on other illness forums it happens in other illnesses and if people were to look at more forums for other illnesses such as Addisons, Hypothyroidism, hemochromatosis, cancer etc, etc, etc they will find people with PEM there as well.

    This false belief that PEM is only found in ME along with others false beliefs about ME will of almost certainly of lead to peoples deaths, and years of needless suffering due to it convincing people not to investigate other possible illnesses. Its time this myth stopped!!!

    The truth is it is a very common symptom of many diseases and is so common that it isnt considered necessary by the medical community to list it as a symptom. For the simple reason that it is expected that if anyone is suffering any serious illness if they then exert themselves they will get worse, often dramatically and it is likely to take them a long time to recover. What are people expecting that in all other serious illnesses that if people exert themselves it will have no effect on them??? Relapse after exertion is the reason why bed rest is prescribed for almost all serious illnesses.

    The belief that PEM is exclusive to ME seems to have started by people misreading the CCC, which does not say that PEM is exclusive to ME, quite the opposite; this Myth has then spread across the internet as if it is a fact.

    But it is not the only dangerous myth that is being promoted, there is a belief that having POTs means you have ME this is not true, yes it is a symptom of ME in some cases, but it is also caused by over forty other conditions, most of which will cause all the symptoms attributed to ME including PEM, and a lot of them are fatal if left untreated.

    There is a belief that having Low cortisol means you have ME, the number of people that have posted that they have low cortisol, but havent had tests to rule out the other diseases that could be causing it is unbelievable, there are about forty other diseases that can cause low cortisol and again most of them have the same symptoms as ME including PEM and a lot will be fatal if untreated.

    The important fact that although there are some tests that ME patients fail, but they are not normal blood tests seems to have alluded most people, few people seem to know this and understand that having failed normal tests means they have a different disease or ME and something else.

    These false Myths about ME and lack of knowledge of basic medical facts and diseases in the ME, CFS community is extremely disturbing. Instead of people understanding That ME is not CFS, which is not a disease, and what ME is and that it is a rare condition with symptoms common to many other diseases, and that every other possibility has to be ruled out because of this. Instead we have an internet full of blatant false hoods about ME and on almost every site no mention of the risk of misdiagnosis, instead what we have is people being encouraged to believe that things like PEM and the symptoms of ME are only found in ME, so therefore spend vast amounts of money on alternative tests which prove nothing but that your sick and dont help diagnose any condition, spend vast amounts of money on every supplement under the sun, based on some false pseudo science that they might cure ME, or spend money on going to a vast array of alternative practitioners none of which can cure ME or diagnose other diseases. We even have a Doctor of electrical engineering telling people to give themselves vitamin D deficiency to cure ME, unbelievable!!!! Yes I do mean doctor Marshall.

    The reality is that because ME is a rare disease most people would be far better of spending their money on standard medical tests and going to specialists to find out what is really wrong with them, and spending their time on the internet researching other diseases that they may have. But all these false beliefs seem to lock people into believing that ME is the only option, it is a very sad situation, which is bound to be leading to a large amount of unnecessary suffering and preventable deaths, its bad enough the majority of the medical profession not having a clue about ME, but it would be a good idea if the sites set up by the patients for the patients could make an attempt to get the facts right!! But as is the case with this site it cant even get the name of the disease right! As far as I know the only site with reliable information is the HFME site. Sigh

    Hope you find out whats wrong with you soon Justy!!

    All the best
     
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  20. rlc

    rlc Senior Member

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    Hi Mellster, RE Actually I do think there is a reliable difference between PEM and flu and that is fever, PEM is basically the flu without significant fever or without fever at all, often even while having low body temp. Anyone going to the doctor complaining about recurring flu like symptoms without fever should be considered a possible candidate. I know some run fevers as well, but I would say that is minority of likely less than 10% and then they run low grade fevers only.

    The problem is the PEM definitions dont define PEM as being flu like symptoms, they say that some people may experience it, but that others can just have increased fatigue, or pain. The reality is that the definitions of PEM do not describe a symptom; they define a group of symptoms that can be very different from patient to patient, which makes them a very vague and unhelpful descriptions of a cluster of symptoms that are found in an enormous amount of conditions.

    The problem with using flu like symptoms is that flu like syndrome is found in 938 different conditions see http://en.diagnosispro.com/differen...isorders-flu-like-syndrome/40945-154-220.html so its not going to be very helpful for narrowing down the diagnosis.

    Nobody is ever going to solve this problem by trying to rearrange the symptoms of ME into a pattern that can be used in a diagnostic criteria, that can be used to say this patient has these symptoms so there for they have ME, it is a multisystem disease, with many symptoms, that can effect different patients in different ways and overlaps with the symptoms of hundreds of other conditions.

    The problem is not and never has been which group of symptoms to put in a diagnostic criteria, the problem is that people are saying that there should be a criteria that is just a group of symptoms to be used to diagnose ME.

    There is no other disease that is diagnosed solely on the basis of having a group of symptoms, it is an idiotic and non scientific and non medical way to diagnose an illness, even in other conditions that dont have a diagnostic test for them such as Parkinsons, the patients are still put through a whole lot of tests to confirm cognitive and movement difficulties and are given brain scans and a multitude of blood tests to rule out other possible diseases that could cause the same symptoms.

    We need to get completely away from the idea that an ME criteria should just be a group of symptoms, why, because it will never work!

    What is needed is yes, a group of symptoms that raise the possibility of ME, most important of these is that ME almost always starts with an Infection and acute onset, if the patient has a gradual onset they almost certainly dont have it. Despite all the crap that is said about ME, there are tests that can be used to confirm diagnosis such as SPECT, PET scans holter monitors neurological testing etc, which are explained in Dr Hydes definition. Failing these tests can be caused by other conditions so they have to be ruled out to confirm ME is responsible. Any new diagnostic criteria will not only have to have an complete list of all other conditions to be ruled out, but for conditions that are beyond the average doctors knowledge there will also have to be instructions on how to rule them out.

    Basically what Im describing is just the Nightingale definition, plus a detailed description of Dr Hydes methods of ruling out other diseases to help out less educated doctors.

    This may seem like a way out thing to propose, but only because the ME community is so used to being treated like shit, this is the way that all other diseases are supposed to be diagnosed! As is shown by this information on Addisons http://emedicine.medscape.com/article/116467-clinical where you find a description of what the symptoms are, what the differential diagnosis is (all the other disease that need to be ruled out) and what the tests are. All other diseases have this kind of information in there criteria, why is ME just a group of random symptoms?

    Simple answer is complete disinterest on behalf of governments and the continual refusal to accept any of the research into this condition. Any government could gather together several hundred suspected ME patients and put them through this kind of testing to confirm or deny the diagnosis, they would then have proof of Hydes work and could introduce his method to diagnose ME for everybody, why arent they doing it, because they dont care and it would cost money.

    If this was done it would then be able to research solely ME patients and find the cause, but once again, just as it has been shown how to properly diagnose ME patients and this has been ignored, it has also been found what are the most likely causes of ME, and this work is also being ignored by governments. See http://forums.phoenixrising.me/show...associated-with-chronic-enterovirus-infection and http://forums.phoenixrising.me/show...le-of-enterovirus-in-chronic-fatigue-syndrome

    The fact that people are still arguing over which symptoms should be in an ME criteria and what exactly these symptoms mean just proves the complete neglect of this illness by governments around the world.

    If they wanted to they could very quickly organise research into how to diagnoses ME along the lines explained by Dr Hyde, (it may sound expensive but many other diseases cost far more then this to diagnose), and introduce it as standard practice for everyone. And then pour money into the findings of doctor Chia, which would more than likely solve the problem of what causes it. Dr Chia has also found that interferon and oxymatrine are useful treatments, this is an area of research that needs funding because he cant fund double blind trials by himself, if governments would do this it may lead to treatment for everybody! If it is Enteroviruses that cause it as a large amount of evidence strongly suggests, then because they are the same family as Polio then it will be very easy to make a vaccine and prevent it ever happening to anyone else.

    So if governments would properly fund research to confirm work that has already been done before by other individuals, and have had their finding backed up by lots of other research. We could have how to diagnose, what causes it, how to treat it and how to prevent it all worked out and become standard medical practice in a very short time.

    Instead what we have is people squabbling over what symptoms should be in the diagnostic criteria, instead of wanting testing, and what little money that is available being wasted on researching mixed cohorts of CFS patients, leading to absolutely nothing being achieved.

    Unfortunately all we can do is pray that because Dr Lipkins name is big enough that he might get heard, is hope that they have ruled out all other diseases in the patients that they have selected and its not just going to be more mixed cohort research, and hope that they publish some good research that gets the world to take notice, and until then all anyone can do is understand that the symptoms of ME including PEM are caused by many other disease, and do everything they can to make sure that other diseases get ruled out in case they are misdiagnosed.

    All the best
     
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