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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.
[...]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. [...]
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)
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)
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.
[...] 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. [...]
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
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.
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.
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.
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
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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
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.