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New Understanding of Chronic Fatigue Can Pave Way to Better Treatment

Discussion in 'General ME/CFS News' started by JaimeS, Aug 1, 2016.

  1. JaimeS

    JaimeS Senior Member

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    Ugggh guys. Bit of a rant ahead, sorry!

    So it starts off okay: the lead-in by the author, Conan Milner, shows he Did His Homework. The article actually appears to be describing ME, or CFS based on some of the more stringent criteria, at the very least:

    So far, so good. Then we get to the actual interview, with

    Uh oh.

    ...oh. Well. More power to you, Chad, for actually knowing what the illness is.

    Then he goes on to wax rather eloquent about past studies with EBV, the new stuff on the microbiome and leaky gut, etc. Lulling the reader into a false sense of security. ;)

    It appears we are heading to an 'emotional exhaustion' / 'adrenal burnout' narrative. Not CFS, sorry.

    Wait, what?

    Dr. Larson, it's very nice of you to try and put it some more palatable way, but if it screws with your neurotransmitters to improve your mood, it's doing the job of an antidepressant and should likely be called one. And then there's the oft-repeated homily that we're more depressed, as a rule. Good to see it's alive and well (and in print... again). o_O

    ....aaaand we've gone from talking about clear ME/CFS utilizing the IOM report (the author of the article does!), to talking about burnout / adrenal exhaustion, to talking about anything that can cause the symptom 'fatigue' being CFS.

    Anemic? You have CFS. Pernicious anemia? That's CFS, too. If you drink too much coffee in the morning, this can cause you to have CFS later in the day.

    ...I mean fatigue.

    Hypothyroidism and hypoglycemia also apparently give you CFS.

    :cry::cry::cry::cry::cry::cry:

    WTH, sir, you started off so strong.

    This is where the exercise physiologist aspect of the man pokes his head up. And he doesn't stop there.

    Yes, people with CFS are mostly just dehydrated.

    Look, nothing he's saying is wrong in this paragraph, but that's what makes it so awful. You can just feel the public out there, nodding to themselves wisely: exercise is good; added sugars are unhealthy; we should all drink more water.

    It's the "if we did, we would be cured!" that's so horrifying.

    Well, alright. Can't disagree...

    Sure, okay...

    "They didn't know they should eat vegetables or drink water or ramp up exercise slowly before they met me," the doctor said. "They'd never thought to try those things before." :cautious:

    Note: that line above is complete farce, but I feel it would have fit well into this article. In fact, I could probably have replaced that with this honest-to-goodness line in the actual article:

    Same vibe, yeah?

    IMO, this is actually the worst part. By conflating CFS with all illnesses in which fatigue is even a symptom, Larson probably gets a lot of people exercising more and they show improvement. Actual PWME would not be able to carry this out.

    Here he is, blaming them for their illness: I had this perfect plan that would have made you well; but because it's tough, the weak of will just can't stick to it. It is blaming patients for their illness, when what they were actually doing was sensibly avoiding PEM.

    Please add thoughtful comments on this article. Note again that it's the interviewed party getting everything wrong; the author appears to have done quite a good job of representing ME at the start of the article, before he starts asking the supposed expert any questions.

    -J
     
    lemonworld, leela, zzz and 28 others like this.
  2. Groggy Doggy

    Groggy Doggy Guest

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    I know some of these articles can be disappointing. I have not read one study or article that I feel is even remotely close to understanding the complexities of diagnosing and treating ME. But I do agree that if we could somehow get to the point of wellness where we could exercise consistently (without PEM, which is the biggest hurdle in my opinion) that some of our other secondary symptoms would improve. So I think he is oversimplifying what diagnostics and interventions are needed to get well enough to the point of being able to exercise consistently. This is where his expertise is lacking.
     
  3. Woolie

    Woolie Senior Member

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    Oh, @JaimeS, I thouroughly enjoyed your commentary on this article. What an absolute hoot that was!

    Actually, I could see the bad moon rising on "adrenal glands", the classic opening for a superficially plausible but essentially psychosomatic stress-based account of CFS.

    Then when he mentioned the hippocampus, he was done for. The idea he's hinting at there is that somehow the stress has distorted our memories and emotions so we are psychologically messed up (he got that hippocampus idea from studies where rats were repeatedly tortured and then their brains examined). Its pretty much in the same league as saying we have demons in our brains, IMO. Only maybe more dangerous because it "sounds" plausible.

    Some nice categories I just made up for the psuedoscienfictic BS here:

    Adrenal/cortisol BS: Any BS that sounds superficially plausible - especially containing the words adrenal or cortisol of the phrase HPA axis - but is essentially saying that psychological factors such as stress caused us to get sick and/or are maintaining our illness.

    Nutritional BS: Any BS that makes it sound like tweaking with diet, vitamins, fluids, coffee or alcohol intake will make us better. We've all fallen for it in the past, but let's face it, none of this stuff fixes serious chronic illnesses like our own. Just as it doesn't fix MS or cancer.

    Covering your bases BS: Any BS that defends itself by saying that factor X is "only one factor at play" and that there are many others. Any BS that avoids any responsibility for not fitting the evidence by using these tactics.

    Complex Illness BS: Any mention of CFS as a "complex illness" (as opposed to "simple" illness like cancer and MS). Used to pave the way for a "Many factors - including psychological" type account.

    Exercise BS: I don't need to elaborate on this one.

    Willpower BS: Any mention of any protocol that's "hard to stick to" or "takes willpower". What a get out of jail free card for any failures!

    Positive thinking/mood BS: I don't need to elaborate on this one, either. Fortunately, not too much of this in interview.

    "I can fix it" BS: Any attempt to use CFS as a tool to increase the apparent scope of one's professional reach and/or the market for one's services. Includes faith healers, nutritionists, osteopaths, psychologists, psychiatrists, physiotherapists, anyone who capitalises on the uncertainty surrounding our illness to advance their cause. Not saying these domains don't have something to offer, just please don't use us to advance your interests!
     
    Last edited: Aug 2, 2016
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  4. sarah darwins

    sarah darwins I told you I was ill

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    Isn't that like saying that if we could stop having ME/CFS then we could stop having ME/CFS?
     
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  5. AndyPR

    AndyPR Senior Member

    Your comment on the article is a great response @JaimeS :thumbsup:
     
    lemonworld, Comet, mango and 4 others like this.
  6. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Really?

    Multiple Sclerosis Diet: Doctor Terry Wahls Reverses MS With Diet Alone
     
    ballard likes this.
  7. Sean

    Sean Senior Member

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    :meh:
     
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  8. AndyPandy

    AndyPandy Making the most of it

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    So for the past 5 years it's just the basics I've been missing.

    :bang-head:
     
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  9. sarah darwins

    sarah darwins I told you I was ill

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    Hey, come on, AndyPandy. You've just got to HIIT it! Me, I started on the HIIT this morning, inspired by the picture on that link Jamie gave us ....

    shutterstock_213255250-676x450.jpg

    ... and I've got to say it's working great. Of course, I'm still currently face down on the floor and typing this on an iPad with my nose, but I'm pretty confident I'll be able to get up some time this evening. Or tomorrow, at the latest.
     
    zzz, Sidereal, Hutan and 19 others like this.
  10. AndyPandy

    AndyPandy Making the most of it

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    Before ME I used to go to the gym every day and do stuff like this.

    Now I can only dream of a "short 15-20 min walk".

    So tired of reading this ill informed rubbish.
     
    taniaaust1, Sidereal, Hutan and 12 others like this.
  11. Keela Too

    Keela Too Sally Burch

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    @JaimeS Your comment on that article is outstanding. I hope you will consider publishing it somewhere - perhaps on ME Action as a blog piece. Well said.
     
    taniaaust1, Comet, JaimeS and 3 others like this.
  12. Gijs

    Gijs Senior Member

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    I don't believe that 1 million to 2.5 million Americans suffer from chronic fatigue syndrome, maybe fatique but not ME. It is much less. I think 'only' up to 100.000.
     
    Woolie likes this.
  13. AndyPR

    AndyPR Senior Member

    Really? What do you base your belief on?
     
    JaimeS likes this.
  14. Woolie

    Woolie Senior Member

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    Really?

    Then what you still doing here, JPV? Take the cure and reclaim your life!
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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  16. JaimeS

    JaimeS Senior Member

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    There is data on this, however; it's not pulled from thin air. The "1 million to 2.5 million" is directly quoted in a long, meandering line, back to mostly Jason's epidemiology, and since frequently quoted in #MillionsMissing-related documents, and from there out to a wide variety of journalists. There are actually multiple quotations, some much higher, but after much debate and reading of epidemiological stuff (which does exist in the form of 90% Leonard Jason) these were the figures we quoted.

    Every time I see one of the phrases we painstakingly researched quoted again, I do a little fist-pump in the air.
     
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  17. Gijs

    Gijs Senior Member

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    There is no hard data. It is about fatique in general not ME. 'Real' ME patiënts are rare. This make big ME studies even more complicated. Real ME is one disease not heterogenic at all. If their are really millions of ME patiënts this disease would be much more regonised by ordinary people because many people would know some patiënts, that is not the case. Millions is bullshit, sorry.
     
  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    @JaimeS
    Thanks. Enjoyed the forensic analysis of the lame article. Agree this type of article that provides correct info then combines it with pseudo science is the most insidious--and it touches all the right notes for pulling people in in terms of the current health 'zeitgeist'. Everyone knows these things to be true (whether they are or not) it's all so plausible. Here we need a new word; plausation does not equal causation.

    Yes. Instead of religious dogma for explaining the not fully understood we now have pseudo science as the authority cobbling together tidbits of not very clear but dearly held science belief into one big theory which is not ascribed theory status but de facto knowledge.

    And every time it's always about what the person with illness must do--better--different--more etc. :rolleyes: :rolleyes: :rolleyes:
     
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  19. Ben H

    Ben H OMF Correspondent

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    :wide-eyed:

    Damn! So thats where I've gone wrong...my old HIIT routines were the answer! As simple as 'increasing' dem mitochodrias :rofl:


    70303381 (1).jpg
    [​IMG]

    (Poke at ridiculous vagueness and simplicity)

    It all started quite well....


    B
     
    Last edited: Aug 2, 2016
  20. AndyPR

    AndyPR Senior Member

    So what is the definition of 'real' ME then?
     
    JaimeS likes this.

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