Test Me When I’m Crashing

News of research that uses standard exercise testing on 2 consecutive days for ME patients.  Research at Pacific Fatigue Lab at the University of the Pacific in Stockton, California could shake research into ME. 

On the first day patients often perform within norms or fail but when re-tested the following day the results are unique and startling.

The test measures how much energy is being produced.

Having people pedal a stationary bicycle until they can pedal no more tells researchers how much air their lungs can take in (Ventilation Max) and therefore how much oxygen they use to produce energy (VO2 Max) at their peak level of effort. Since oxygen plays a key role in the energy production process this test effectively tells researchers how much energy is being produced.

It seems obvious to anyone with ME that repeating the test when in “post exertional malaise” will probably offer very different results to the initial test pushing you to exhaustion.  But amazingly this has not been looked at until now (bold added by me):

 Their results are both profound and disturbing. About half of the ME/CFS patients they’ve tested do, in fact, ‘fail’ or significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they’re ‘rested’. It’s the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well–and fail spectacularly.

The amount of impairment the Lab see’s can be astonishing – some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old.

These kind of results have never been seen in any other kind of patient group. They are revolutionary findings and what’s even better is that research students are fascinated and want to find out more.

It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health – has an amazing ability to quickly return to a baseline level of energy. That is until now.

But it’s not just that chronic fatigue syndrome (ME/CFS) patients are failing these tests, it’s also the unique way they’re failing them that’s raising eyebrows.

… suggests that something has gone awry in the basic physiological processes the body uses to produce energy in this disease.

Also the equipment and testing used is standard stuff so the research could be replicated around the world fairly easily.

Some ME patients have been using the centre to prove their incapacity when it comes to work in order to make successful insurance claims. 

Sounds to me like a test that proves something siginficantly abnormal in physiology that could be used as a test for ME/CFS.

Admittedly it wouldn’t be a great test for patients because the level of illness and debility triggered by testing to exhaustion and then retesting to exhaustion whilst in crash could be significant and long lasting.  But it proves something quantifiable and tangibly physical then sign me up now!

Many thanks to Michelle for featuring this story on her blog


5 Responses to “Test Me When I’m Crashing”

  1. 1 ashysheela February 26, 2009 at 1:55 pm

    Reminds me of a line from my DWP medical report for Disability Living Allowance “The degree of variability/fluctuation reported by the client is unlikely” or words to that effect… I barely reported any variability really seeing as things have been so steadily bad! This is the kind of thing that the Benefits people do not understand and conveniently ignore. They seemed unable to believe that if i can sometimes walk for 5 or ten minutes, that at other times i an unable to walk more than a few steps. A useful test indeed, however traumatic to carry out!

  2. 2 PJ February 26, 2009 at 2:58 pm

    I had this very testing done about a month ago and -phew- let me tell you it is hard! They are really garnering some good data to rock the medical world. I submitted everything to my insurance company in an appeal for a denied claim — it’s hard to dispute hard data like that and until now there haven’t been any objective tests for ME/CFS. Thanks for posting this!

  3. 3 Nina February 26, 2009 at 3:01 pm

    Oh jeez – another horrible test to prove what we already know. Results are suprising and astonishing? I don’t think so. Pardon my cycnicism. Here, we’re still doing national testing to see how many people really have it. That’s been going on for the last 15 yrs!

  4. 4 Michelle February 28, 2009 at 6:43 am

    Very clever title — much more so than mine. 🙂

    I appreciate your cynicism, Nina. I’m still reserving my excitement regarding Dr. Myhill’s mitochondria paper that came out recently until it is reproduced on a much larger level and everyone agrees that these represent true abnormalities. Lord knows it’s been frustrating to hear that there are no tests to “prove” ME when there have been tests for 15-20 years now. Though unfortunately those tests are extremely costly and out of reach for the average clinician.

    But with the Pacific Fatigue Lab’s test, this one has been reproduced thousands of times now. It’s reasonably priced and accessible. And it shows gross abnormalities that everyone agrees are severe (unlike, say, the low NK cells test or RNase L enzyme test where there is disagreement about whether they really make that much difference in the immune system).

    However, why it took them 20+ years to think to test us for the post exertional malaise we’ve been complaining about is beyond me.

  5. 5 Matthew March 3, 2009 at 8:17 pm

    Thanks again for posting this research. Your earliern post of Dr Myhill’s research was a real eye-opener and a tremendous help in my understanding of why I need to conserve my energy. Hopefully it will lead to a lot better treatment and more respect for those dealing with the illness, both suffers and carers. Thanks Rachel. Matthew

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Push It 11 Sep 2011

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