1. Patients launch $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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Postexertional Malaise in Women with Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by _Kim_, Jan 26, 2010.

  1. _Kim_

    _Kim_ Guest


    Vanness JM, Stevens SR, Bateman L, Stiles TL, Snell CR
    Pacific Fatigue Laboratory, University of the Pacific , Stockton, California.

    J Womens Health (Larchmt). 2010 Jan 24

    http://www.ncbi.nlm.nih.gov/pubmed/20095909

    Abstract
    Objective:
    Postexertional malaise (PEM) is a defining characteristic
    of chronic fatigue syndrome (CFS) that remains a source of some
    controversy. The purpose of this study was to explore the effects of
    an exercise challenge on CFS symptoms from a patient perspective.

    Methods: This study included 25 female CFS patients and 23 age-matched
    sedentary controls. All participants underwent a maximal
    cardiopulmonary exercise test. Subjects completed a health and
    well-being survey (SF-36) 7 days postexercise. Subjects also provided,
    approximately 7 days after testing, written answers to open-ended
    questions pertaining to physical and cognitive responses to the test
    and length of recovery. SF-36 data were compared using multivariate
    analyses. Written questionnaire responses were used to determine
    recovery time as well as number and type of symptoms experienced.

    Results: Written questionnaires revealed that within 24 hours of the
    test, 85% of controls indicated full recovery, in contrast to 0 CFS
    patients. The remaining 15% of controls recovered within 48 hours of
    the test. In contrast, only 1 CFS patient recovered within 48 hours.
    Symptoms reported after the exercise test included fatigue,
    light-headedness, muscular/joint pain, cognitive dysfunction,
    headache, nausea, physical weakness, trembling/instability, insomnia,
    and sore throat/glands. A significant multivariate effect for the
    SF-36 responses (p < 0.001) indicated lower functioning among the CFS
    patients, which was most pronounced for items measuring physiological
    function.

    Conclusions:
    The results of this study suggest that PEM is both a real
    and an incapacitating condition for women with CFS and that their
    responses to exercise are distinctively different from those of
    sedentary controls.
  2. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Way to go, Dr. Snell, Staci Stevens and others! What a clear, excellent report!

    I believe we have all these symptoms in the survey that people on this website are working on. (Well, maybe we don't have "trembling/instability.")
  3. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    It doesn't look like the full text is out yet.

    This is the first study I know of that checked cognitive function AFTER exertion. The other studies that I've read didn't always show much difference in cognitive function with healthy controls, and yet we all know that cognitive issues are a huge part of our symptom pattern. I think every study done with us needs to be done after exertion or it's not measuring what's really going on.
  4. kit

    kit

    Messages:
    81
    Likes:
    0
    USA
    :thumbsup: to those 25 CFS subjects who were willing to complete a maximal cardiopulmonary test for the sake of science, and the rest of us.
  5. Lelvina

    Lelvina ex-Bookworm

    Messages:
    57
    Likes:
    2
    Thanks for formatting & posting that Kim. The layout made it easier to read than the original!

    I didn't realize there was any debate about that.
  6. laura

    laura Senior Member

    Messages:
    108
    Likes:
    4
    Southern California
    it is disappointing that we are still having to prove that our symptoms are real.
    have we made no progress?!
    Laura
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
    Yes, Peter White and others try to suggest that what people feel are just symptoms of deconditioning that healthy people would also feel. A lot of the clinics in the UK (and probably the Netherlands and Belgium although I haven't read the literature as much) try to persuade patients that the symptoms they feel after they try to exercise are normal symptoms, that unfit people feel.
  8. anne

    anne Guest

    Why would they only do this on women?
  9. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    It was published in the Journal of Women's Health.
  10. Woop! Go _Kim_!
    This study is awesome. Do we have these scientists' email addresses so we can write and thank them personally?

    I get trembling and instability, by the way.
    I know if I've pushed myself too hard because I get the shakes. Like when you've used a muscle too much and it starts to shake as it fails. My whole body, but particularly my trunk, does that. I look hypothermic.

    -Rachel xx
  11. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    40
    Scotland
    I get trembling and instability too.

    This is a good paper. This is the sort of thing we want done in a big study. It is too easy to ignore something done in 25 people, even if the results are compelling.

    Mithriel
  12. Lelvina

    Lelvina ex-Bookworm

    Messages:
    57
    Likes:
    2
    Oh, sorry, I totally forgot about that aspect of the disease -- the politics on the other side of the pond :/


    I actually get that, too. Not a lot, but it's there.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
    And don't forget that the CDC CFS team have been "making eyes at" and praising the NICE guidelines. And been influenced by Peter White who Bill Reeves says he talks to on the phone regularly. Fingers crossed XMRV "works out" or Graded Exercise Therapy (GET) could be centre stage again.
  14. bakercape

    bakercape Senior Member

    Messages:
    210
    Likes:
    1
    Cape Cod. Mass
    A well needed study unfortunately

    Can you believe I went to the doctors today because I am having a relapse and got some bloodwork back.

    The Nurse practitioner asked me if I still exercise. I said I did some when I was in remission. But I can't do too much even when I'm feeling better.

    Her response to this was" good because some people with CFS use it as an excuse to not execise".:Retro mad:

    I was furious!
  15. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    i was ridiculously fit when I fell ill, there is no way I was deconditioned, I had such an active job, i fell of ladders, fell down the stairs got clumbsier and clumbsier, more and more accident prone. Constantly feeleing like death and trying to carry on. I also had a few close calls in the car.

    When I stopped exerting myself, I had less accidents.

    It is dangerous to try to carry on when your body is making you fall down. This for me has been one of the most disabling and frustratingaspects of this disease.
  16. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
    Technically that doesn't answer why they just did it on women, that just shows the study is suitable for the publication.

    For better or worse, quite a lot of CFS studies are just on women.

    Not sure if there was any particular reason in this case.

    There is a fairly big female predominance (maybe around 4:1 or so although it varies a bit in different studies).

    [Aside: I think there is some rule now that federally funded studies in the US generally have to include at least some women unless there is a good reason. But there is no requirement that they include men which seems unfair. It would be more of an issue if it was 4 more common in men but fortunately that is not the case for researchers in CFS.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
    I just read this and generally was pleased that it was done.

    However, I don't share the authors' enthusiasm for exercise as a treatment or share their view that activity avoidance is a major problem - I think most people do close to what they are able to do:

    Introduction:

    [..]

    References (for this section)

  18. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
    Make sure to check out graph of symptoms

    Make sure to check out this graph: http://www.cfids.org/cfidslink/2010/020302.pdf - you need to enlarge it.

    A patient (or control) scores 1 for the symptom if they mentioned it, 0 if they didn't. These are the nine symptom types.

    It's all interesting but one interesting thing is that for some symptoms, the symptom is more likely 1+ day later in CFS patients.

    I thought this was interesting (remember that this wasn't a group of active people but instead sedentary people)

  20. Dolphin

    Dolphin Senior Member

    Messages:
    6,718
    Likes:
    5,565
    Looking at lot of symptoms is good

    I liked the fact that they looked at lots of symptoms.

    Once you start reading full papers, what one generally finds with Graded Exercise Therapy (GET) and CBT based on GET studies is that they only measure fatigue symptoms while of course there are lots of other symptoms.
    Other symptoms may not have improved or may even have gotten worse (think this could happen with pain for example) but the readers are not given the information.

    Such studies might put pressure on researchers to change this.

See more popular forum discussions.

Share This Page