Cort
Phoenix Rising Founder
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From the latest Phoenix Rising newsletter: The first outlined my horror at the possibility that the Pacific Fatigue Lab's work was not being replicated;
the second my relief that it actually was! 
Thus far it looks like about half of the ME/CFS patients tested show a very unusual inability to generate the same amount of energy in a repeat exercise test; ie they seem to have some sort of metabolic defect that keeps them from being able to exercise.
Why the CDC doesn't pick up on stuff like this is just unreal to me.
http://aboutmecfs.org/Conf/IACFS09Exercise.aspx
NOOOOOOO! It’s Happening Again! (Or is it?) - Tolerance to Repeated Maximal Exercise in ME/CFS. E Taub. E. Stein and B. MacIntosh.
I came across this poster before Dr. Van Ness gave his presentation (see below) and shot Dr. Stein a rather angry look. How could you, I thought? How could you debunk this great theory? How dare you? Objectivity was definitely thrown to the winds. Five females with ME/CFS bicycle to exhaustion two days in a row and their VO2 Max results don’t budge…at all. They were as strong metabolically the second day as they were the first day. This looked to set a record for hopes dashed - just in the last month I’d sent out a newsletter suggesting that the repeat exercise studies could be ‘IT’ in this disease - and now this….
After talking to Dr. Stein, though, it was hard to get upset with her. She, herself has had ME/CFS for many years. She’d done the study hoping and expecting that the results would be different. She assured me that all the participants had had strong post-exertional fatigue but that they just didn’t have ‘metabolic dysfunction’.
This means that post-exertional fatigue is not necessarily synonymous with metabolic dysfunction - you could be wiped out by exercise and still not have ‘metabolic dysfunction’. (One wonders if the opposite is true as well - I know of one patient who was able to exercise even when his VO2 levels were quite low.) When I asked Staci Stevens about the study, she said the participants had had pretty high VO2 maxes to start off with – and that could have made a difference.
The Metabolic Subset - A Diagnostic Test for the Identification of Metabolic Dysfunction. J. VanNess, Staci Stevens, K. Kumasaka, H. Singh, et. al.
The title says it all; ‘A Diagnostic Test for the Identification of Metabolic Dysfunction' – not chronic fatigue syndrome. Despite the CDC's effort to expand the parameters of this disease (‘unwellness syndrome’?) we are slowly seeing the beginning of the end of chronic fatigue syndrome name and the breaking up of the disease. The research community appears to sense that the era of ’subsets’ is upon us.
In his opening remarks HYPERLINK Dr. Peterson stated that the search for A biomarker is over, that it’s all about subsets now. The Whittemore-Peterson Institute believes they’ve found immune biomarkers for a subset of patients. If they have, they’ve cut a whole chunk of ME/CFS patients free from the chronic fatigue syndrome label. Both Staci Stevens and Dr. Klimas implored the CDC to go after subsets at the public review of the CDC’s draft strategic plan.
The Pacific Fatigue Lab’s presentation was about nailing down that metabolic dysfunction subset, those patients whose metabolic tests undergo inexplicable declines during a second exercise test. The Pacific Fatigue Lab presented data from a broad range of results from their studies and disability evaluations, the Montoya Valcyte Study and some patients from a practitioner in Ithaca, New York. About 40% of their group, 40% of patients from Ithaca (7 patients), 55% of Dr. Montoya’s patients and about 70% of people doing disability evaluations at the PFL met the threshold for ‘metabolic dysfunction’. At this point it appears that somewhere around half the patients thus far tested have this problem.
The percentages may be higher. Dr. Van Ness remarked on the possibility that a ‘physiological floor’ could be obscuring some of the results. Apparently some people who have very low VO2 max scores the first day had similar scores the next day as well. This could mean there’s a floor you can’t get lower than (and still be alive?).
The tests are not necessarily representative of the population at large; the PFL won’t do tests if you’re too ill and there are presumably a lot of healthier patients who have considerable fatigue and impaired functioning who don’t fit into the high EBV or disability group.
Unfortunately the Pacific Fatigue Lab has been another casualty in the NIH Grant meat grinder; they spent six months or so putting together a several hundred page grant application and were denied - in no small part because they weren’t allied with a major institution. Staci Steven suggested they probably won’t undergo that process soon again.
Dig Deeper: Check out ‘Cracking the Foundation’ for more on the Pacific Fatigue Lab’s Work
Thus far it looks like about half of the ME/CFS patients tested show a very unusual inability to generate the same amount of energy in a repeat exercise test; ie they seem to have some sort of metabolic defect that keeps them from being able to exercise.
Why the CDC doesn't pick up on stuff like this is just unreal to me.
http://aboutmecfs.org/Conf/IACFS09Exercise.aspx
NOOOOOOO! It’s Happening Again! (Or is it?) - Tolerance to Repeated Maximal Exercise in ME/CFS. E Taub. E. Stein and B. MacIntosh.
I came across this poster before Dr. Van Ness gave his presentation (see below) and shot Dr. Stein a rather angry look. How could you, I thought? How could you debunk this great theory? How dare you? Objectivity was definitely thrown to the winds. Five females with ME/CFS bicycle to exhaustion two days in a row and their VO2 Max results don’t budge…at all. They were as strong metabolically the second day as they were the first day. This looked to set a record for hopes dashed - just in the last month I’d sent out a newsletter suggesting that the repeat exercise studies could be ‘IT’ in this disease - and now this….
After talking to Dr. Stein, though, it was hard to get upset with her. She, herself has had ME/CFS for many years. She’d done the study hoping and expecting that the results would be different. She assured me that all the participants had had strong post-exertional fatigue but that they just didn’t have ‘metabolic dysfunction’.
This means that post-exertional fatigue is not necessarily synonymous with metabolic dysfunction - you could be wiped out by exercise and still not have ‘metabolic dysfunction’. (One wonders if the opposite is true as well - I know of one patient who was able to exercise even when his VO2 levels were quite low.) When I asked Staci Stevens about the study, she said the participants had had pretty high VO2 maxes to start off with – and that could have made a difference.
The Metabolic Subset - A Diagnostic Test for the Identification of Metabolic Dysfunction. J. VanNess, Staci Stevens, K. Kumasaka, H. Singh, et. al.
The title says it all; ‘A Diagnostic Test for the Identification of Metabolic Dysfunction' – not chronic fatigue syndrome. Despite the CDC's effort to expand the parameters of this disease (‘unwellness syndrome’?) we are slowly seeing the beginning of the end of chronic fatigue syndrome name and the breaking up of the disease. The research community appears to sense that the era of ’subsets’ is upon us.
In his opening remarks HYPERLINK Dr. Peterson stated that the search for A biomarker is over, that it’s all about subsets now. The Whittemore-Peterson Institute believes they’ve found immune biomarkers for a subset of patients. If they have, they’ve cut a whole chunk of ME/CFS patients free from the chronic fatigue syndrome label. Both Staci Stevens and Dr. Klimas implored the CDC to go after subsets at the public review of the CDC’s draft strategic plan.
The Pacific Fatigue Lab’s presentation was about nailing down that metabolic dysfunction subset, those patients whose metabolic tests undergo inexplicable declines during a second exercise test. The Pacific Fatigue Lab presented data from a broad range of results from their studies and disability evaluations, the Montoya Valcyte Study and some patients from a practitioner in Ithaca, New York. About 40% of their group, 40% of patients from Ithaca (7 patients), 55% of Dr. Montoya’s patients and about 70% of people doing disability evaluations at the PFL met the threshold for ‘metabolic dysfunction’. At this point it appears that somewhere around half the patients thus far tested have this problem.
The percentages may be higher. Dr. Van Ness remarked on the possibility that a ‘physiological floor’ could be obscuring some of the results. Apparently some people who have very low VO2 max scores the first day had similar scores the next day as well. This could mean there’s a floor you can’t get lower than (and still be alive?).
The tests are not necessarily representative of the population at large; the PFL won’t do tests if you’re too ill and there are presumably a lot of healthier patients who have considerable fatigue and impaired functioning who don’t fit into the high EBV or disability group.
Unfortunately the Pacific Fatigue Lab has been another casualty in the NIH Grant meat grinder; they spent six months or so putting together a several hundred page grant application and were denied - in no small part because they weren’t allied with a major institution. Staci Steven suggested they probably won’t undergo that process soon again.
Dig Deeper: Check out ‘Cracking the Foundation’ for more on the Pacific Fatigue Lab’s Work