Article: Unraveling Post-exertional Malaise By Jennifer M. Spotila, J.D.

You can view the page at http://www.forums.aboutmecfs.org/content.php?198-Unraveling-Post-exertional-Malaise-By-Jennifer-M-Spotila-J-D

 

I thought the history was fascinating. Isn't it amazing how long it took PEM took to get into the definitions or even into the discussion of the disease itself. I wonder when the term PEM became codified (did it pop up with ME/CFS) and if any other disease uses it or a term like it. My sense is that the medical community were so familiar with fatigue that in the beginning they had a hard time iunderstanding the significance of PEM.

For me without a doubt PEM is the 'difference maker'. It was the one that made me clear that this was an organic disorder. After I came down with ME/CFS I basically stopped exercising almost completely and I was left with fatigue, head pain, body pain, etc. - all these kind of nebulous symptoms. I had some success using mind/body techniques to ameliorate them a bit and that did, in the back of my mind, leave a bit of doubt - even though I couldn't fix it was I somehow causing it?

At one point I decide to try to exercise again - I had been quite athletic prior to getting ME/CFS - and the incredible reaction to 'real exercise' that I had completely floored me; from then on I was absolutely clear there was an organic basis to this disorder. I am convinced that PEM is at the heart of this disorder and researchers will get to it by exploring what happens during and in the aftermath of 'exertion'.

I'm really looking forward to this series.

 

I would note that this series is coming at a good time as the research community appears to be gearing up for a debate on what CFS is and how important PEM is. The Canadian Consensus Criteria say PEM is a critical part of ME/CFS; in the Empirical Definition its not even a necessary part of CFS. The CDC is beginning to lay down the line on what CFS is; the IACFS/ME thinks differently - PEM's time is coming I think.

 

Thanks for posting this article, Cort. I hope the rest of the series will be of interest to PR members as well.

 

Thanks so much for this great article.

I have been saying from the beginning of this illness that PEM is the lynchpin to solving it.

I have mild to moderate CFS- Here is how how my PEM works:

24 to 36 hours after exercise, disastrous symptoms onset exactly like an ALLERGIC REACTION.

I can feel my head start pressurizing then aching, my throat getting sore/scratchy, and what can only be described as toxins flowing through my veins. Then the massive fatigue floods in, and the Brain Fog arrests my thought.

It is a night and day reaction that you could set to a timer- My hypothesis has always been that something is biologically reacting against whatever is naturally released 24 hours after exercise (lactic acid?- no idea).

What is the trigger?

Thanks again.

 

That's one reason, Recovery Soon, I think this disease is so fascinating - something really happens. For me it happens more quickly -but generally builds up until it is worse the next day....I wonder if its histamine for you. Some findings implicate the complement system, one section of which trips off a histamine reaction. Maybe something in exercise makes that portion of the complement system go crazy in you

 

Isn't it amazing how long it took PEM took to get into the definitions or even into the discussion of the disease itself. I wonder when the term PEM became codified (did it pop up with ME/CFS) and if any other disease uses it or a term like it. My sense is that the medical community were so familiar with fatigue that in the beginning they had a hard time iunderstanding the significance of PEM.

Oh, I think PEM was recognized as part of ME by Melvin Ramsay ages ago -- like in 1956! Ramsay reiterated the importance of PEM in 1986 -- it's a shame he was ignored:

[...]recovery of muscle power after exertion is unduly prolonged. After moderate excercise, from which a normal person would recover with nothing more than a good night's rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more. [...]

(From http://www.name-us.org/DefintionsPages/DefRamsay.htm)

 

I'm increasingly convinced that PEM is, as Dr. Mikovits put it in her recent addendum to the science paper, the sine qua non of ME/CFS.

For those of you who *didn't* take four years of Latin in high school like I did, sine qua non means "Without which, not."

I am also really looking forward to the remaining articles in this series. I don't have a good handle on the proposed mechanisms of PEM. It also seems to me that "flares" of symptoms, at least for me, aren't always a response to some obvious exertion or stressor - sometimes they just seem to happen for no apparent reason.

 

Oh, I think PEM was recognized as part of ME by Melvin Ramsay ages ago -- like in 1956! Ramsay reiterated the importance of PEM in 1986 -- it's a shame he was ignored:



(From http://www.name-us.org/DefintionsPages/DefRamsay.htm)

One of the few that was really clued in. I actually bet that the physicians close the patients got it but the research took so long to begin to look at it.

 

I'm increasingly convinced that PEM is, as Dr. Mikovits put it in her recent addendum to the science paper, the sine qua non of ME/CFS.

For those of you who *didn't* take four years of Latin in high school like I did, sine qua non means "Without which, not."

I am also really looking forward to the remaining articles in this series. I don't have a good handle on the proposed mechanisms of PEM. It also seems to me that "flares" of symptoms, at least for me, aren't always a response to some obvious exertion or stressor - sometimes they just seem to happen for no apparent reason.

Four years of Latin...no wonder you got sick..... thanks for explaining sine qua non - now I can finally use it

 

Oh, I think PEM was recognized as part of ME by Melvin Ramsay ages ago -- like in 1956! Ramsay reiterated the importance of PEM in 1986 -- it's a shame he was ignored:



(From http://www.name-us.org/DefintionsPages/DefRamsay.htm)

Nods yeah Ramsay... first noted this and the Canadian Consesus defination I think was based some of that.

The article is correct thou.. as Ramsay talked about M.E. which is different to CFS. So to say that Ramsay talked about this symptom being in CFS would be incorrect.

So one could say the Canadian Consensus Document then brought this symptom into CFS as this symptom then was put under their ME/CFS.

I do think this symptom does need to be really highlighted for ME.

 

Useless information a specialty. Fast service and reasonable rates.

Well, ok, not so much with the fast service any more, but factoids and trivia can still make it through the fog if you give 'em a little extra time...

 

I'm no genius but I thought Dr. Myhill explained PEM here. FWIW. It helps if you read the whole article. I just posted the part about PEM.

http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

If ATP levels drop as a result of leakage of AMP, the body then has to make brand new ATP. ATP can be made very quickly from a sugar D-ribose, but D-ribose is only slowly made from glucose (via the pentose phosphate shunt for those clever biochemists out there!). This takes anything from one to four days. So this is the biological basis for delayed fatigue.

This is how exerting myself feels to me too. In the days following exertion, I don't get any body pains, just the need for sleep and increased OI which lessens each day as I recover from PEM. And once I've rested for a few days, I can go again at my "normal" pace. X

 

[...] The article is correct thou.. as Ramsay talked about M.E. which is different to CFS. So to say that Ramsay talked about this symptom being in CFS would be incorrect. [...]

What was incorrect was the CDC ignoring the 1984 outbreak of Myalgic Encephalomyelitis in Incline Village, Nevada and renaming as well as redefining it "Chronic Fatigue Syndrome" or "CFS".

It is well-known that three physician/researchers well-versed in M.E. walked out of the committee that created the (first) Holmes "CFS" definition in protest. This is documented in Osler's Web among other places.

The people who were supposedly studied for that definition had PEM. That should have been included in the "CFS" definition.

Ask anyone who got ill in that outbreak if they had/have PEM. Or anyone who got ill with "CFS" around that time.

 

I'm no genius but I thought Dr. Myhill explained PEM here. FWIW. It helps if you read the whole article. I just posted the part about PEM.

http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure



This is how exerting myself feels to me too. In the days following exertion, I don't get any body pains, just the need for sleep and increased OI which lessens each day as I recover from PEM. And once I've rested for a few days, I can go again at my "normal" pace. X

I haven't read much by Dr. Myhill but my sense is her ideas are theory, which is fine, and not backed up by multiple studies of many patients with physiological data. It's fine to talk about theories but theories mean little without evidence. I know of only one published article by her group. As we are seeing with the XMRV studies, it takes more than one study to establish that a theory explains what it happening.

 

What was incorrect was the CDC ignoring the 1984 outbreak of Myalgic Encephalomyelitis in Incline Village, Nevada and renaming as well as redefining it "Chronic Fatigue Syndrome" or "CFS".

It is well-known that three physician/researchers well-versed in M.E. walked out of the committee that created the (first) Holmes "CFS" definition in protest. This is documented in Osler's Web among other places.

The people who were supposedly studied for that definition had PEM. That should have been included in the "CFS" definition.

nods yeah very wrong it wasnt studied.

but ME should never have been tried to be merged with other "fatigue illnesses" and lumped with CFS thou in first place. It had its own name and had already been described etc. I think those experts who protested by walking out, did the right thing, they knew the whole thing was so wrong.

I haven't read much by Dr. Myhill but my sense is her ideas are theory, which is fine, and not backed up by multiple studies of many patients with physiological data. It's fine to talk about theories but theories mean little without evidence. I know of only one published article by her group. As we are seeing with the XMRV studies, it takes more than one study to establish that a theory explains what it happening.

and without funding.. many of the studies which seem quite solid, will never be "proven" and hence remain just likely theories.

 

I haven't read much by Dr. Myhill but my sense is her ideas are theory, which is fine, and not backed up by multiple studies of many patients with physiological data. It's fine to talk about theories but theories mean little without evidence. I know of only one published article by her group. As we are seeing with the XMRV studies, it takes more than one study to establish that a theory explains what it happening.

Its tragic we can't get more money so that these theories can be properly examined. Even if the cause of CFS (supposing that is not XMRV) was discovered tomorrow at the rate funding is going it could easily take 10 years for it to become evident. First, it probably wouldn't be picked up by anybody which would mean that that group would do another study (a couple of years) to validate then somebody would do another study or so (another couple of years) - then it might start really gathering attention - then after another five years or so the field as a whole would reach a conclusion -- I would be 65 then

Funding, Funding, Funding, Funding......Advocacy, advocacy, advocacy, advocacy.......

 

Hi Cort,

IMHO. I'm not so sure that we need to spend more money on research when we have info like this article listed below available. Simply making this known would eliminate much of the confusion around PEM and CFS. IMHO, Articles such a the one referenced in this thread or other articles where questions like this are raised that already have answers only add to the idea that we don't know what's causing PEM when in fact, IMHO we do know how this happens. Correcting PEM is a whole other bucket of worms especially if Cheney is correct and those with PEM also have dysautonomia.

I found many other articles like this while googling CFS Cheney peroxynitrate ... We know more than we think we know ... : ) .. Thank you google !

I only copied in page 5 and most of page 6 but to understand this you need to start on page 1.. FWIW. I see Dr. Cheney and Dr. Myhill as saying the same thing ... Loss of ATP = PEM. Cheney just goes into further detail on how he thinks this happens. I would think that by the looks of the Kreb's cycle that this can happen at various other points too. I say this because it appears that taking the B12s that Fred recommended have lessened my PEM. KOW ... I want to avoid the "I'm Feeling better" curse ... lol ...

I found it very interesting that Cheney understands that our bodies are going into organ failure when we're upright. I knew this from my own experience because when I lay down after being upright for an extended period of time, I can feel the blood going back into the organs in my upper body ... I have orthostatic intolerance and have to lay down every few hours in order to think straight or take a deep breath. After laying down for an hour, I ALWAYS have to urinate right away when I get up. And while laying down I can actually feel my lungs and heart muscle begin to relax as the blood, etc re-enters these organs. I can take a deep breath again. If you don't have OI, try holding your breath and pay attention to how your body feels as you allow the air to re-enter your lungs so you can understand this. Or pay attention to how any part of your body feels as it wakes up from the loss of blood aka falling asleep.

Note to self ... Don't eat BBQ chicken at 9 pm if you want to sleep ... lol ... I sure hope this all makes sense ... good night ... X

http://www.cfids-cab.org/MESA/Cheney.pdf

Post-Exertional Fatigue Indicates a "Q" Problem

Next, the NJ team looked to see if there were any symptoms that were 100% observable in the group of disabled cases, but not in the others. They found that there was only one symptom (among the loooong list of CFIDS symptoms) that was seen in 100% of the patients with the Q problem. Only one. Post-exertional fatigue. That is, when you push yourself physically, you get worse.

What distinguishes CFIDS from FM? Post-exertional fatigue. Patients who have FM, but not CFIDS, can exercise—it helps them. FM patients do not have a Q problem. MCS patients do not have a Q problem. [Unless they also have CFIDS.] They do have other issues that overlap with CFIDS. Martin Pall's conceptual framework allows us to lump these people all together (FM, MCS, GWS, CFIDS). However, Q is what separates them. CFIDS patients have a big Q problem, and post-exertional fatigue is the one symptom that correlates with Q.

Post-exertional fatigue is the number one symptom reported by people with ICM. Among the disabled CFS patients [the severe group], 80% had muscle pain, 75% had joint pain, 72% memory & concentration problems, 70% unrefreshing sleep, 62% generalized weakness, 60% headaches, 60% lymph node swelling, 68% fever and chills, and, 50% had sore throat. Though some symptoms were certainly more common among the disabled patients, the symptoms varied—with the exception of post-exertional fatigue. They all had that.

This suggests that it is not so much the symptoms that are disabling. Rather, "the symptoms are reflecting an interaction (or a nexus) between Q, and how you compensate for Q. Depending on the nature of the compensation, which is individually distinct, you will get an array of symptoms that is individually determined. Just like this: ten patients with MS will not have identical symptoms. Any more than ten AIDS patients, or ten cancer patients, or ten of anything." Why? Because the disease process—which they all have—will manifest differently in each person. The specific symptoms will arise out of factors unique to each person; those factors will determine how the disease plays out in each.
"Within the non-disabled [CFS] group they saw pretty much the same thing—it's just that the percentages were a lot lower. For example, fever and chills were found in only 5% of the non-disabled. The highest percent was post-exertional fatigue seen in 60%. But 40% of the CFIDS patients who were not disabled did not have post-exertional fatigue, but did have CFIDS."

"The reason for that is, of course, if you look at the original case definition, post-exertional fatigue—that is exercise worsens the syndrome, effort-related exacerbation, push-crash phenomenon—is not a major criteria, it's one of the eight minor criteria. It's possible not to have that and still meet the case definition. But all disabled patients have that, and 60% of non-disabled have that." [It's possible to not even have post-exertional
6
fatigue and still have CFS. However, all disabled CFS patients have post-exertional fatigue, as do 60% of the non-disabled.]
"More importantly, all disabled CFIDS patients, all of whom have post-exertional fatigue, have low "Q" and are in heart failure."
Top Priority: Blood Pressure
"Now there is one factor that I want to mention before I get into the data display. Natelson requires, as a rule, before you're allowed into his medical school for study (whether it's this particular study or any other study) that you consider coming off of all medications and all nutraceuticals or he may not see you. Furthermore, his team is not treatment oriented."
Patient responds: "Well, I certainly wouldn't agree to do that. I'd be a wreck."
Dr. Cheney continues: "Of course you wouldn't agree. Therefore, the data I'm about to present is not anywhere near as bad as you are." You are more severely affected than anyone in this study. I'm not sure he has patients from the truly severe end of the spectrum of CFS. Those patients don't participate in studies. Just reflect on that as I go through this.
In this study, the normal person and the non-disabled CFIDS patient pump 7 liters a minute through their heart with very little variance: 7 liters plus or minus .5. When they stand up, they drop all the way down to 5 liters per minute, a full 30% drop in output. That's normal.
"First of all, why does it go down when you stand up? Because the heart can only pump as much blood as returns to it. If you drop the return by 2 liters per minute, you will always drop the output

 

May I add the comment that PEM investigation can only add to the general fund of knowledge having experienced the whole range of symptoms. Suggest now able to think a little from day to day that ME, CFS, and PEM are in effect the same and differing stages only depending on the biological damage sustained from the infecting "organism" orginally or recurring (reservoir), and how quite individually the immune system is able to cope or not. Much "repair" work involved. Just a thought.

 

but ME should never have been tried to be merged with other "fatigue illnesses" and lumped with CFS thou in first place. It had its own name and had already been described etc. I think those experts who protested by walking out, did the right thing, they knew the whole thing was so wrong.

What is CFS if it is not ME and a wastebasket diagnosis? The Canadian criteria used the term ME/CFS because it was for ME patients, CFS was included in the term because people in the USA and now in the UK can no longer get an ME diagnosis. Therefore PEM was an issue that Ramsay mentioned. He was even talking about mitochondria problems as early as 1977, if not earlier.