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!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

This is science? Unexplained chronic fatigue and interpersonal problems

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Jan 3, 2010.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    Fred Springfield's post to co-cure of Dec/9/09

    I guess I'm being a bit silly. I read the title of this research and I started to get angry. Then I saw that while the title says "unexplained chronic fatigue". for the test group "Chronic fatigue was assessed with a self-report questionnaire (both self-rated and clinically-rated) in a primary care Chronic Fatigue Syndrome (CFS) group", and "compared with two other clinical populations (minor medical condition: N = 51; chronic organic disease: N = 52)."

    So now I'm furious. How does anyone get away with calling this science, let alone getting it published? As I understand it, with just the title and the method, the authors have said that CFS is unexplained chronic fatigue and is not a chronic organic disease. This contravenes the science.

    By heart goes out to all who live in Belgium.

    I have to confess that after that, I thought I didn't have the stomach (or the brain today) to read the study in full. But then realized I should try to in order to see if they provided any rationale whatsoever for how they jumped to their final conclusion. Of the 2 sites I found with the article, Unbound med says this is the full text, but Researchgate wouldn't show a full article without a subscription.

    I guess a silver-lining is that when their research is based on patently false premises, it is easy to dismiss it.

    (my bolds and comments between quotes)
    ME/CFS IS a chronic organic disease.

    surprise!

    Had they said "compared to patients with OTHER chronic organic diseases, this would seem surprisingly accurate - people with ME/CFS have more fatigue-related disability than people with other chronic organic diseases and the same level of interpersonal problems..

    Is "somewhat" a scientific term?

    We need the full text here to know what they are talking about. What does this mean? Differ in what way?

    ok - people who have higher fatigue levels are more withdrawn from social interaction ie - they are not physically capable of as much.

    But are the authors also trying to imply that if a doctor rates a patient's fatigue problems at a different level than the patient does him/herself that there is more withdrawal from social interaction than if they both had the same rating, whether high or low? That's the only way I could see that they could even have a wobbly leg to stand on

    How would they make such a jump? Because a patient feels that their doctor does not understand them, or is that the disease that they have, the patient would withdraw from social interactions?????

    The only cause and correlation that I've seen them show is that the more severe the fatigue, the fewer social interactions.

    ARGGGHHH
  2. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I can get the full text for you but I have to order it through my college library. It will take a couple of weeks. Would you like it?
  3. Dolphin

    Dolphin Senior Member

    Messages:
    6,469
    Likes:
    4,747
    I'm always interested in full texts. I read a lot and have started to send letters to editors as well as online comments. Have had 5 letters published in the last year and have one in press. Don't have this one.
  4. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    I'm glad you're doing this Tom. I hope you'll share future ones with us as they come out. I would love to see more of that, of us as a group making sure that bad research gets pointed out as being such to the same audience that the research reaches.
  5. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Whoops. I just tried to order it and was told that I'm "Blocked due to patron record expired." Since I've been able to access the databases just fine, I didn't realize they had restricted me here. I will call tomorrow. Although I've been on medical leave for quite a while, I've been able to keep my library privileges due to kind begging. So I'll see if anyone can be begged. I may have to wait for the start of the semester, though. I'll let you all know.
  6. Min

    Min Senior Member

    Messages:
    1,045
    Likes:
    761
    UK
    The ME Association's recent study appears to me to contradict these findings:

    " MEA-funded study published into severe risk factors for ME/CFS
    Sunday, 03 January 2010 11:30

    Pheby D and Saffron L. Biology and Medicine (2009); 1 (4): 50 - 74

    This very comprehensive questionnaire based research study was carried out by Dr Derek Pheby and colleagues at the Unit of Applied Epidemiology, University of the West of England.

    The research was funded by The ME Association's Ramsay Research Fund.

    The conclusions were obtained using information from questionnaires that were given to 124 people with severe ME and 619 people with less severe ME, who acted as the controls. The questionnaires were completed by members of The ME Association, the 25% Group, CHROME, and by people attending the National ME Centre in Essex and the Wiltshire ME service.

    A key conclusion to the study is that the standard of early management appears to be the most important determinant of severity. Having a mother with ME was an additional risk factor – a finding that is consistent with an illness causing mitochondrial dysfunction.

    Of particular importance is the fact that no evidence was found to indicate that conscientiousness, neurotic traits or personality traits are risk factors in the development of severe ME. "

    http://www.meassociation.org.uk/ind...sk-factors-for-mecfs&catid=30:news&Itemid=161
  7. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Belgians with CFS have been complaining for years about their horrible treatment at the hands of the medical profession there. Some of them have been on message boards before asking for us to help them.
  8. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    Thanks for trying gracenote. This study doesn't seem worth much more work tracking down to me. Maybe save your begging for more important research???

See more popular forum discussions.

Share This Page