1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Lipkin Microbiome Crowdfunding Campaign Launches!
An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!
Discuss the article on the Forums.

Article: Post-Exertional Malaise: Perception and Reality By Jennifer M. Spotila, J.D

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 8, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    994
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    This is the most amazing fact for me

    CFS patients demonstrated over three times the level of reduced cardiopulmonary functioning (20%) relative to people with very serious diseases including end-stage renal disease and cystic fibrosis. In fact that may understate the problem since Jenny was referring to a 7% variation in functioning in those groups - which doesn't necessarily refer to reduction.

  3. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    "CFS patients demonstrated over three times the level of reduced cardiopulmonary functioning (20%) relative to people with very serious diseases including end-stage renal disease and cystic fibrosis. In fact that may understate the problem since Jenny was referring to a 7% variation in functioning in those groups - which doesn't necessarily refer to reduction."


    I have wondered for years why this isn't an acceptable diagnostic marker for CFS. Any ideas?
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Good question brown-eyed girl! Those findings have not been validated by independent group. Its rather complicated. The PFL's initial study suggested that this apparently unique metabolic abnormality was present in most CFS patients.

    Several studies have not been published yet. A small follow-up study by Eleanor Stein - a physician with CFS - did not find it in CFS patients. A large Spanish study found reduced cortisol but not reduced aerobic functioning.

    The PFL did a much larger study in which they found it about 50% of CFS patients. None of these studies have been published yet. It appears that the metabolic abnormality the Pacific fatigue lab was picking up is found in a subset of patients. Interestingly it does not appear to correlate with the degree of PEM experienced - some people with high PEM do not have this problem. Like everything else its all about subsets and finding them.
  5. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,498
    Likes:
    1,106
    Florida
    Great series Cort,

    The level of detail here is just what we needed. Here's a quote from the Pacific Labs link ...

    I wonder how many of us can pass these tests. I'm not allowed to do a regular stress test because I get winded so easily. HOWEVER, a couple of years ago when in PT for OI, when it was apparent that I could't handle pedaling a recumbent bike at a semi fast pace without my legs going into spasm and getting winded, my therapist suggested that I slow down and try it. Much to my surprise, I could pedal for 10+ minutes if I pedaled at a rate slower than most people walk. My physical therapist said it was because my blood couldn't get to the muscles fast enough to replenish the necessary nutrients to substain my muscles.

    If this is true, what chemicals in the blood are the people at Pacific Labs looking at that would tell us why that's happening ? Measuring CO2 only tells us that we're lacking in oxygen, which of course is carried to our muscles by our blood ...

    Also, I noticed that some of the studies quoted were from 1999, why makes this study different ? I can't imagine any of our CFS researchers looking at this study and thinking .. "Wow, so this is how PEM works. I never thought of this ? " ... lol ... thanks ...
  6. Gemini

    Gemini Senior Member

    Messages:
    373
    Likes:
    187
    xchocoholic,

    Physical therapist is right about blood getting to muscles. Consider elite cyclists in the news reported to be blood doping (giving themselves blood transfusions, taking EPO) to increase oxygen to the muscles hence their performance. Athletes also use testosterone patches to help the body recover after a workout.

    How far would a cyclist get if you removed 20% of his blood before a race? Would he experience PEM? Not an experiment a cyclist is anxious to try, I'm afraid!:Retro smile:

    So it's amazing to me researchers are not studying ME/CFS's 20% blood volume loss and PEM together. Water/salt intake, IV saline, EPO and blood transfusions don't remedy the ME/CFS BV problem. My question is "How does a retroviral infection cause BV loss/OI" like it does in HIV and possibly XMRV, maybe causing PEM?

    I've always felt gravity, blood pooling in lower extremities, was a factor. Lying down definitely improves things like Cort says!

    Gemini
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Its amazing to me too. The low blood volume problem has always seemed so intriguing. I asked Fred Friedberg why the research community wasn't leaping all over it. I couldn't understand exactly what he said but the gist to me was that low blood volume was kind of an archaic finding - that the research community is just not interested in that type of subject anymore. Hurwitz in Miami showed, however, that you can replenish blood volume and not have much of an effect on patients health; ie something else is going on.

    I don't think the Pacific Fatigue Lab has the money to look at very much actually.

    I think increased pain sensitivity could be another key factor. I remember Dr. Natelson saying that he thought exercise resulted in 'kindling' increased activity of the pain receptors. If that's so I would think the brain would react to the increased pain signals by telling the body to slow down - by inducing fatigue perhaps.
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    An inability to activate the muscles properly could also come into play. Schilling did a study in 2004 in which he directly stated that the PEM in CFS could be due to reduced 'central activation' in the brain. In fact he said that the reduced muscle activation in CFS was similar to that seen in some stroke and ALS victims. That's what he measured!

    This is from a paper I wrote

    What has happened in the six years after that study? Absolutely nothing - there has been no attempt to follow it up, I imagine because CBT gets all the money. Shilling has worked with Bleijenberg - who is a major CBT proponent. Bleijenberg was even a co-author of that study. That was yet another 'successful' study - one that pointed out what could be a key abnormality in CFS that the research community has ignored.

    That is what happens when the federal government pretends that you don't exist and when we let them get away with it.
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,498
    Likes:
    1,106
    Florida
    Thanks Gemini,

    I wasn't aware of blood doping ... http://old.texarkanacollege.edu/~mstorey/beckham.html .. I can't believe some athletes actually did that. ; )

    What I didn't see mentioned here is which nutrients are needed for our muscles to work properly. Glucose, sodium, B's, magnesium, calcium, etc etc etc ...

    FWIW ... I'm not sure what role low blood volume plays in CFS/ME / PEM. Attempting any aerobic activity right after blood loss would be a bad idea but I wonder how long it takes for our bodies to compensate. I saw that this article said it takes up to 6 weeks to regain what we've lost after having blood drawn but I'm sure our bodies have a way of compensating for this. Otherwise, everytime anyone had their blood drawn, they'd be laid up for awhile ... I think it takes me about 3 days to a week to recover now from an extensive blood draw.

    I experienced severe blood loss when going through peri-menopause and can't say that I felt that much worse. I would think that if this were a CFS / PEM type of problem, all women with heavy menses would be out of work once a month. Come to think of it, I used to bleed terribly when I was younger and didn't have any CFS symptoms. I was quite the Tomboy back then ...

    good discussion ... X
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I must say that I am just so disturbed really at what has happened to the research over the past 5 or six years. Doesn't this seem important?

    That was five years ago and nothing has been done that subject. Nor has Schilling published anything - again - these are positive studies. If someone is going to go to the trouble of spending alot of money to fund an original study why would they not follow up after that study has positive findings???? I just don't get it.

    Imagine if any of these research areas had received even a fraction of the research funding going to XMRV (or any normally funded disease?). We would have 4 or five studies coming out a year and we would very quickly know what's going on. Here's its been FIVE years and we haven't had another study....Its appalling....:Retro mad:
  11. anciendaze

    anciendaze Senior Member

    Messages:
    833
    Likes:
    779
    With the CDC empirical definition picking up 38% major depression, by some other accounts, and no emphasis on PEM at all, it would seem they don't even have a well-defined diagnostic category. This work, and other, has been out there, but nobody pays attention. Contrast the above error rate, indicating no better than 62% correlation between CDC diagnosis of CFS and any new illness category, with the current reported 80% rate for XMRV, showing the CCC diagnostic category WPI is using really exists by an objective test.

    With any other cases of unresolved diagnostic overlap, the reliability of the empirical definition could easily drop to the level of flipping a coin. If you recall that 50% of their respondents had never taken their problem to a doctor, you could easily conclude that 20 years work has resulted in absolutely nothing of use to either clinicians or patients. Why are they still handing out advice to clinicians and patients?

    Work on PEM does not require huge investments in cutting edge technology. Compare the investment in this research with the return on millions per year by official investigators. Why are they still making research funding decisions? Doesn't it look like CFS is simply an exercise in public relations, plus a cash cow to be milked for other purposes?
  12. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,498
    Likes:
    1,106
    Florida
    Unfortunately, this rings a bell with me. I consider myself to be in a zombie state on my first day of PEM and this looks like it's saying the same thing. I'm very uncoordinated at that point too. I've been looking at what nuerotransmitters might be missing ... I didn't get very far though. Neurotransmitters are very complicated.

    I wonder if this is one of those states that our bodies enter in order to preserve itself. Anyone else get petite mals or other seizures regularly ? There's no stopping one once it's started but if allowed to run it's course, everything goes back to normal. KOW ...

    I would think that blood tests would need to be drawn every few hours for 3 - 4 days after exerting oneself to really see what was happening. Sounds horrible, I know but based on how quickly our blood glucose levels change, I'd hate to miss what was really going on. Maybe a breath test could be used too ...

    Any chance this was dropped because the solution is within the holistic / nutritional realm of medicine and not traditional ? I have to say in the last 5 years, my traditional docs have dropped the ball everytime it turns out that I need a supplement and not a drug.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    It really does seem like things do 'seize up' and I remember Cheney saying that he thought we were close to seizure, and, of course, a few people do actually have them. I think its instructive that many people find that Klonopin, which damps nervous system activity is helpful.

    For me my muscles feel tight and constricted, my coordination goes way down ( they should do gait analysis when we're in PEM), orthostatic problems go up and, of course, concentration is pretty much shot - I can't even begin to understand these scientific texts I enjoyed so much previously.
  14. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    Jennie,

    Thanks for the history on PEM. Perspective is a good thing. I'm looking forward to the rest of the series. I was scheduled to be tested at the Pacific Fatigue labs in June but was not allowed to (as per PFL protocol) as I was experiencing chest pain and SOB (so I was considered to be a "high cardiac risk'). I see my cardiologist tomorrow and your series has reminded me to ask about being tested at the PFL and any associated risks.
  15. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,203
    Likes:
    1,536
    Australia
    Is anyone else skeptical about the claimed benefits of exercise for MS patients?
  16. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    CBS - I hope you are able to get the PFL test, and that nothing comes of the chest pain.

    @Andrew1 - I was skeptical of the claim that exercise benefits MS patients. A family member of mine has MS, and so I have seen her fatigue up close. What made a difference to me was the research I cited showing very little symptom exacerbation in MS patients that did exercise. It's very possible that cohort selection plays an important role in MS studies as it does in CFS. And a few studies showing no exacerbation does not equal a definitive answer. But I did not find peer reviewed studies that refute the exercise benefit in MS, and the Sorenson study of complement activation in CFS is the most cited source for the uniqueness of PEM in CFS. It was actually that paper that sent me on the hunt for info on the other illnesses.
  17. Bayly

    Bayly

    Messages:
    15
    Likes:
    0
    Kentucky
    When I click on the article link, I cannot view it entirely. Is this a browser issue? How can I get this article in another format? Many thanks,
    Bayly
  18. biophile

    biophile Places I'd rather be.

    Messages:
    1,350
    Likes:
    3,993
    Perhaps biopsychosocial proponents like Bleijenberg assume that the reduced central activation found in that study is simply the neurobiological correlate of reduced psychological motivation caused by an "erroneous" perception of effort and a "reluctance" to push oneself (eg fear avoidance), rather than neurological central fatigue as understood by Chaudhuri & Behan in their 2004 paper "Fatigue in neurological disorders."?
  19. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    The Light study, with that clear graph that was used as slide 27 in the CIDFS lecture (2010) dealt with the same subject, didn't it? I know my Post Exertional Meltdown has nothing to do with psychology.

    http://www.ncbi.nlm.nih.gov/pubmed/20230500

    I attach that slide: a picture is worth a thousand words.

    Attached Files:

  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I imagine, so, even though Shilling felt his research (which Bleijenberg was a part of) indicated otherwise.

See more popular forum discussions.

Share This Page