Author Topic: PEM Poll  (Read 4643 times)

Levi

  • Moderator
  • Hero Member
  • *****
  • Posts: 603
PEM Poll
« on: August 10, 2012, 04:29:07 PM »
I see a looming problem in future research efforts that are trying to establish a diagnostic capability for ME/CFS based on PEM (post exertional malaise).  Existing versions of the term include BOTH physical and mental versions of the term when referring to exertion.  The problem I see is that all of the research is going into the physical side of the equation, none into the mental fatigue aspect of patient experiences.   Both are measurable scientifically,  however I have seen no studies combining the two types of PEM. 

PEM is usually introduced into a subject's medical history via subjective patient experience; in other words, the patient either answers a questionnaire or tells a medical provider about the problem. Fatigue lab testing or neuro-psychiatric testing for both physical and mental PEM respectively is expensive and esoteric.  However, PEM is shaping up to be the "Hallmark Symptom" of ME/CFS by researchers, apparently with the full support of the patient community.  It would behoove us to clear up any confusion about the term sooner than later.  What is your opinion about use of the term PEM?   
« Last Edit: August 10, 2012, 04:32:34 PM by Levi »

Patricia

  • Administrator
  • Hero Member
  • *****
  • Posts: 17440
Re: PEM Poll
« Reply #1 on: August 10, 2012, 08:15:28 PM »
I agree, Levi.  I experience PEM from both physical or mental exertion, and I think both should be studied, separately.
Never be bullied into silence; speak your truth even when your voice shakes.

Belle

  • Jr. Member
  • **
  • Posts: 84
Re: PEM Poll
« Reply #2 on: August 14, 2012, 12:46:08 PM »
I was going to answer the poll but I'm not sure what the implications of the outcomes are if PEM is studied separately or combined. Does each way of studying it effect how the biology of the disease is viewed and how?

Firestormm

  • Hero Member
  • *****
  • Posts: 666
Re: PEM Poll
« Reply #3 on: August 14, 2012, 12:56:44 PM »
Ok. I think that not enough is known about PEM to be honest, and what is and what isn't being researched, focuses solely on Physical after effects of exertion e.g. focusing on muscle responses etc.

I think of mental PEM as being cognitive dysfunction. And that dysfunction (or 'fog') is exacerbated by mental exertion. However, it is there whether or not I am especially exerting myself mentally - if you follow me.

So that's how I separate the 'two'. I don't see that the mechanisms involved (that we know of) with muscular function before during and after exercise - can be the same as the mental ones.

UNLESS you take the search beyond muscles or mitochondria or whatnot. Say, hypothetically, research definitively establishes that neurological inflammation is involved - demonstrably so - in our condition.

Well, then I would imagine this might impact on cognitive ability AND it could impact on mobility and recovery from physical exercise - or exercise in general.

So... how to answer your survey? I think I will plumb for separate study for each  :)

Levi

  • Moderator
  • Hero Member
  • *****
  • Posts: 603
Re: PEM Poll
« Reply #4 on: August 14, 2012, 02:20:18 PM »
Hi Belle,

I would think that there are different systems being affected by physical vs mental PEM.  Study of physical PEM would logically fall into cardio, mitochondrial, and muscle-skeletal domains.  Mental PEM would fall into the neurological domain.   Both should be studied as organic illness symptoms rather than "functional" personality problems.   There is already lots of research about that hypothesis :(
I was going to answer the poll but I'm not sure what the implications of the outcomes are if PEM is studied separately or combined. Does each way of studying it effect how the biology of the disease is viewed and how?

Hi Firestormm,

I distinguish and personally experience "Brain Fog" and mental fatigue/mental PEM as two separate things.  The brain fog can be an ambient condition that makes for slower mental processing, poorer working memory, tracking time or what you are doing from one moment to the next, inability to organize and logically sequence thoughts, etc. It can occur even when you are rested and have not challenged yourself mentally.

The mental fatigue is related to the inability to perform a mental task adequately that you were able to do earlier, but can no longer maintain because the brain's ability to continue to function is depleted by the prior mental effort.  It shows up for me when I take a test that lasts longer than 15 minutes or so.  I can get the first set of problems, then I run out of juice and struggle more and more as I go on.  If the test is long and protracted, it actually seems to "hurt" or be uncomfortable in a way that is hard to describe and I feel "wiped out" afterwards.

If the testing or hard mental effort lasts for multiple days, then there is incomplete recovery and diminished performance on the subsequent efforts, which I would deem to be caused by mental PEM.  Neuro-psychological testing can definitely establish mental PEM.  If a bonifide cohort of ME/CFS patients were studied by the appropriate experts, I have no doubt that a test "signature" could be determined.  Just like the physical fatigue lab testing has established for exercise and ME/CFS. 


I think of mental PEM as being cognitive dysfunction. And that dysfunction (or 'fog') is exacerbated by mental exertion. However, it is there whether or not I am especially exerting myself mentally - if you follow me.
« Last Edit: August 14, 2012, 02:45:38 PM by Levi »

awol

  • Hero Member
  • *****
  • Posts: 2405
Re: PEM Poll
« Reply #5 on: August 14, 2012, 05:06:51 PM »
My PEM from mental and/or emotional exertion is distinctly different from the kind I get from exercise. Lumping them together in my case would prevent an accurate description of the symptoms and effects.

Belle

  • Jr. Member
  • **
  • Posts: 84
Re: PEM Poll
« Reply #6 on: August 15, 2012, 09:30:12 AM »
Thanks for explaining. I think it's necessary to research physical and mental PEM separately as organic illness too. If the research does definitively show that neurological inflammation is involved, it would make sense, especially as brain/spinal cord inflammation has already been found in people with this.

Firestormm

  • Hero Member
  • *****
  • Posts: 666
Re: PEM Poll
« Reply #7 on: August 15, 2012, 09:49:33 AM »
If, at some point in the future, immunological dysfunction is found to be significant, then I suspect that could impact both on 'mental' and 'physical' exertion - or would have the potential to.

But, yeah, I tend to think in separate terms when considering my 'mental' and 'physical' disability and I don't think the two are necessarily caused by similar things in relation to PEM specifically.

Proof I suppose is that if I exercise beyond my limit, I suffer physically, not mentally. What I mean is I can overdo it physically, and still have cognitive/mental function. I can for example, read, or function in that way.

Except of course, that the fatigue induced by physical exercise tends to mean I can't do any mental activity for very long because of a need to sleep and/or rest.

Hmm... have I contradicted myself?  :)

awol

  • Hero Member
  • *****
  • Posts: 2405
Re: PEM Poll
« Reply #8 on: August 15, 2012, 10:29:22 AM »
P-PEM for me means irregular heartbeat, chills, hypotension episodes and then EVENTUALLY (24-48 hours later) weakness, cognitive problems, irritability, confusion.

M-PEM for me means same cognitive problems but right away, without delay, and often accompanied by headache which is not a P-PEM symptom for me.

I think the cognitive type of PEM is the same for both P and M, but the process of getting there feels very different.

I should add that long phases of overdoing it, on the other hand, have their own symptom complex. This is when the sore throats, fevers, puffy glands and general SICK feeling come into play. This will come from both mental and physical exertion with no clear difference. This is what happens if I push through the initial P- or M- PEM to do something I want to or need to do regardless of how I feel.

« Last Edit: August 16, 2012, 07:13:45 AM by awol »

Firestormm

  • Hero Member
  • *****
  • Posts: 666
Re: PEM Poll
« Reply #9 on: August 16, 2012, 07:11:28 AM »
What's PENE in terms of physical exercise response and mental exertion? Does it embrace both as a singular concept? I forget. Thanks.

Firestormm

  • Hero Member
  • *****
  • Posts: 666
Re: PEM Poll
« Reply #10 on: August 19, 2012, 09:42:31 AM »
Levi agreed that I might open this up to those on PR as I thought it was worth hearing other opinions also: http://forums.phoenixrising.me/index.php?threads/should-physical-exertion-and-mental-exertion-be-separated-for-pem.18974/

Thanks for your comment Kolowesi. I tend to feel that my symptoms generally inflate after I exert beyond my comfort zone for an extended period. I think 'malaise' is as good a word as any. Physically, my muscles scream, I seize up, and the fatigue overwhelms me. I find it very hard to relax and any attempt at sleep is interrupted.

Mental exertion or overexertion leads to increased 'fog' and even more trouble with word finding, speech, comprehension, writing ability etc. etc. Again, I really just find that the usual symptoms flare up and I have to stop or I cannot endure for as long as I might normally.

JT1024

  • Hero Member
  • *****
  • Posts: 1861
Re: PEM Poll
« Reply #11 on: August 19, 2012, 04:30:12 PM »
I was reading this thread and remembered coming across a study where physical fatigue and mental fatigue were differentiated. I'm not in the best mental or physical state at the moment so I apologize if this is not following this thread's focus.

The study below was published last year. The.pdf is attached.

Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome
Journal of Internal MedicineVolume 271, Issue 1, Article first published online: 13 JUL 2011
Light AR, Bateman L, Jo D, Hughen RW, VanHaitsma TA, White AT, Light KC (University of Utah, Salt Lake City, UT, USA)

« Last Edit: August 19, 2012, 04:35:32 PM by JT1024 »
First they Ignore you , then they Laugh at you , then they Attack you , then you WIN!!!

Mahatma Gandhi

floydguy

  • Hero Member
  • *****
  • Posts: 773
Re: PEM Poll
« Reply #12 on: August 19, 2012, 06:13:00 PM »
PEM needs to be defined much better.  It still sounds like un-wellness to me.  It doesn't do any good for us to have a hallmark symptom that is as nebulous as "fatigue".

liquid sky

  • Hero Member
  • *****
  • Posts: 1369
Re: PEM Poll
« Reply #13 on: August 20, 2012, 02:56:24 AM »
PEM needs to be defined much better.  It still sounds like un-wellness to me.  It doesn't do any good for us to have a hallmark symptom that is as nebulous as "fatigue".

I agree. The word needs to express the extreme weakness involved. It is not about just being tired or even severely tired. I have for a long time thought that it involves the junction between nerve and muscle, similar to MS. Definitely neurological malfunction that results in severe weakness of the body to the point of inability to use the muscles (bedbound).

Levi

  • Moderator
  • Hero Member
  • *****
  • Posts: 603
Re: PEM Poll
« Reply #14 on: August 20, 2012, 04:22:28 AM »
Hi liquid sky,

You say definitely a neurological malfunction, but likely a neurologist will say your muscles are just fine, no problem.  Nothing a little exercise and conditioning won't fix.  And as long as PEM /PENE whatever merely remains just a subjective check box on a questionaire that a patient checks off "oh yes, I have the PEM too", then the less convincing this "hallmark symptom" will be to the traditional western medical orthodoxy.

I believe that the type of damage between the nerve and the muscle which you describe could be established in ME/CFS patients by well designed nerve conduction studies:
http://c4jrme.110mb.com/supplement232.htm

However, all research into nerve conduction and CFS has now been expressly forbidden by the CDC in the US, and the NHS in the UK in order to marginalize and suppress patients.  So you are not likely to see any large follow-on studies to whatever preliminary research exists. We most certainly need more research into the association of ME/CFS and nerve conduction. Why can't we get this sort of thing done?  Why doesn't one of our intrepid researchers put in for an NIH grant to do this? Where are the patient organizations that are supposed to get this kind of work done for patients? 

I agree. The word needs to express the extreme weakness involved. It is not about just being tired or even severely tired. I have for a long time thought that it involves the junction between nerve and muscle, similar to MS. Definitely neurological malfunction that results in severe weakness of the body to the point of inability to use the muscles (bedbound).
« Last Edit: August 20, 2012, 04:03:44 PM by Levi »