Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The Times: One in 40 teenage girls has chronic fatigue

Discussion in 'General ME/CFS News' started by JohnCB, Jan 25, 2016.

  1. JohnCB

    JohnCB MEow

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    Similar to the reports on the BBC and The Sun there is a small report in The Times on Esther Crawley's new paper. Being The Times, the online version is behind a paywall. It is also on page 4 of today's print version. I hope I have posted the link correctly, as this is my first attempt on this forum.

    http://www.thetimes.co.uk/tto/health/news/article4673767.ece

    "One in 40 teenage girls has myalgic encephalomyelitis, according to an analysis of more than 5,000 children.

    Girls are twice as likely as boys to suffer from ME, also known as chronic fatigue syndrome (CFS), it found.

    The researchers said that doctors needed to get better at spotting the condition, and warned that children were missing huge amounts of schoolwork.

    The study, published in the journal Paediatrics, found that poor teenagers were more likely to suffer CFS/ME, which was once known as "yuppie flu". ..."

    As these things go it isn't very good or very bad.

    I have reproduced the article as far as it is visible this side of the paywall. I assume it is bad form to copy the article in full. Does Phoenix Rising have a policy on this?
     
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  2. msf

    msf Senior Member

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    No they don´t. 1 in 40 teenage girls may have chronic fatigue, but they don´t have ME.
     
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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    http://forums.phoenixrising.me/index.php?wiki/forum-rules/

    If you have access to the full article, the rule of thumb here is to copy and paste no more than 50% of the article.

    You've posted the link correctly; thanks for posting.
     
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  4. user9876

    user9876 Senior Member

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    Once they removed those answering a questionnaire suggesting they may be depressed their prevalence figure goes down to 0.6% which is probably much more accurate but still would include other illnesses.

    Again they are spinning a result that they want rather than giving a better picture of what the data may say. But then the whole thing follows such a poor methodology.
     
  5. snowathlete

    snowathlete

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    The quality of their work is so poor from a scientific standpoint, I just don't understand how these people get funding in the first place. Where are all the decent UK researchers?
     
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  6. Mark

    Mark Acting CEO

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    It's very important to them right now to popularise their concept of a wider population with chronic fatigue (2-4% of the population seems to be the target), because they know they will need a population for their babbling empire to treat when the coming research prises the ME population out of their grip. Imagine: by the time post-Rituximab research identifies biomarkers for treatable subsets, covering most or all of what we would call ME or ME/CFS, they will be able to say that this is only a small subset of the CFS population, less than an eighth of it, and they always said there were subsets and they're delighted that one has been identified and treated...and it's business as usual for the rest of the 2% of the population...
     
  7. Roy S

    Roy S former DC ME/CFS lobbyist

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    https://mobile.twitter.com/CrawleyEsther
    "Sorry, that page doesn't exist"
     
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  8. Valentijn

    Valentijn The Diabolic Logic

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    Last edited: Jan 26, 2016
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  9. A.B.

    A.B. Senior Member

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    Deleting the page is clever. It hides the criticism and lets her claim to be victim of vicious harassment. When I looked, I saw no harassment, just many comments about the fallacy of conflating fatigue with ME.
     
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  10. Sidereal

    Sidereal Senior Member

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    Depression is quite common in teenage girls. Sending a questionnaire about fatigue will capture many such cases. The methodology of this study is simply unacceptable.
     
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  11. Hip

    Hip Senior Member

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    Here is a free-to-read article about Dr Esther Crawley's findings:

    One in 40 teenage girls has chronic fatigue


    I have mentioned previously that the empirical data gathered by psychologists on ME/CFS may well be accurate, even if their psychobabble theories and interpretation of that data are usually highly suspect (highly suspect, and sometimes bordering on fraudulent, as is the PACE trial, which of course is why the PACE trial authors don't want anyone to see the PACE trial raw empirical data).

    So in this present case, ignoring psychobabble theories that Dr Esther Crawley will likely be espousing in relation to this latest research, the figure of 1 in 40 teenage girls having ME/CFS may indicate that there is currently an epidemic of ME/CFS in the UK.

    Dr Esther Crawley and her associated will always unfortunately prefer mumbo-jumbo psychological theories to explain the origin of ME/CFS over biochemical explanations (why can't psychologist learn a bit about biology, or at least work with those knowledgable about biochemistry?); but I would not be surprised if this teenage epidemic might be cause by a virus in circulation such as the nasty suspected enterovirus that I caught in London in 2003, and which then spread to all my friends and family, causing chronic symptoms in many people.
     
  12. Cheshire

    Cheshire Senior Member

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    I'm really wondering what your definition of ME/CFS is.
    In this case, they were diagnosed with mere invalidating fatigue, not even medically explored. Do you adhere to this definition?
    I don't see how anything beneficial can be found in this study. Its bad design invalidates anything, even the study of unexplained chronic fatigue.
     
    Last edited: Jan 26, 2016
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  13. Hip

    Hip Senior Member

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    Where did you read the study and the ME/CFS definition used? I could not find a link to it.
     
  14. Cheshire

    Cheshire Senior Member

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  15. JohnCB

    JohnCB MEow

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    Thanks for your help.
     
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  16. Valentijn

    Valentijn The Diabolic Logic

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    No, it indicates that they were diagnosed with fatigue based on a questionnaire mailed to their homes, and that fatigue was then equated to ME/CFS.

    It's highly unlikely that these results reflect an epidemic, since we can be quite certain that the use of extremely unprofessional methodology has already inflated those figures tremendously. There's simply no way to draw any useful conclusions from the data collected in this "research".
     
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  17. Hip

    Hip Senior Member

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    Can you think of a better way to measure ME/CFS prevalence than the methods used in this study then? Were there any particular improvements to the methodology that you had in mind?


    With ME/CFS prevalence rates known to be around 1 in 500, you have to survey a large number of people to get a statistically valid result. In this case, they surveyed around 5000 children. That is probably about the minimum number that provides statistical validity.

    Unless you can get a large amount of money for your study, so that at least 5000 randomly chosen children can be individually and accurately assessed for ME/CFS by trained medical professions, the questionnaire approach is the only approach I can see that will feasible.

    I agree that this approach to determining prevalence figures is less than ideal; can you suggest a better methodology?
     
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  18. Cheshire

    Cheshire Senior Member

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    Are you serious?
     
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  19. Valentijn

    Valentijn The Diabolic Logic

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    1. Diagnosis in person
    2. Diagnosis from a licensed MD and ME/CFS expert
    3. Diagnosis using an official ME/CFS criteria
    4. Research not done by a ME/CFS denialist
     
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  20. Hip

    Hip Senior Member

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    Yes. You criticized, so let's hear how you would have done it, within a reasonable budget.



    I agree. I had not seen the diagnosis methodology used when I wrote my above comment. Nevertheless, I think this data is interesting, even if we have to bear in mind its limitations. I'd prefer rough data to no data. At least that may then spur further studies.



    You obviously missed my comment about budgetary constraints.
     
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