Rachel Neumeier

Fantasy and Young Adult Fantasy Author

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Public service message: Have you seen this about Chronic Fatigue?

Okay, look, I just came across this article about Chronic Fatigue Syndrome.
Wait, I mean this article about the inexcusable, appalling so-called research upon which pointless therapies have been prescribed for a decade for people who suffer from CFS.

Which, given the article plus following links, let me say, nobody seems yet to have proposed a really good name for this condition. Jeez, people. It is not that hard. Let me do it for you: Chronic exercise-induced myasthenia. There, see? That’s quite clear as soon as you know that myasthenia means muscle weakness.

Now, listen. Apparently this big PACE study — I mean “study” — published in Lancet a decade ago suggested that improvement all the way to full recovery might be expected for patients who availed themselves of therapy plus gradually increasing exercise. To make a long and disgraceful story short, this was totally false. The “study” was so badly conducted that, get this, suffers could simultaneously suffer from a condition serious enough to be eligible for the study while also technically — by the ridiculous criteria of the “scientists” involved — already having recovered. Way to inflate your recovery numbers, moron!

You know what’s worst about this? That Lancet published this piece of crap “study” and then refused to revisit it when it was questioned, even though the “researchers” refused to release their data or methodology.

So, so. If you or someone you know suffers from chronic exercise-induced myasthenia, allow me to suggest you read through the linked article, do some browsing among the links, and if necessary insist that your doctor look for treatments that might, you know, actually address the condition you actually have rather than this all-in-your-head fake condition the PACE “study” insists you have.

You know what this makes me think of? Unfortunately, this article I read recently suggesting that the way studies are designed and funded today means that science is inevitably moving toward shoddy, poorly-designed studies that offer unreliable conclusions. Fantastic.

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5 Comments Public service message: Have you seen this about Chronic Fatigue?

  1. SarahZ

    My sister was diagnosed years ago with narcolepsy, and eventually was able to get a prescription for the drugs that help her with it (very effectively, with minimal side effects). Unfortunately, those drugs are expensive, so the insurance companies redefined narcolepsy a couple times and now she has “idiopathic hypersomnia” and the drugs aren’t covered. (Alternative solution insurance company *will* cover: take adderall in the morning and rohypnol at night! What could go wrong?)

  2. Elaine T

    I’ve been wondering if CFS is part of what the Teen has. But we’re carefully not labeling, simply describing symptoms. Currently working the immune system angle, already tackled brain and endocrine as well as sleep.

    The linked article reminds me of the vaccine-autism garbage study that was also published in Lancet, as far as I remember.

  3. Rachel

    Sarah, good lord. How pathetic. Elaine, it does seem wise to be cautious about labeling. Good luck sorting the problem out.

    Yes, the autism thing, and also I thought of the horrible 1992 “meta-analysis” the EPA published about second-hand smoke. That had the worst methodology of anything I ever heard of until this PACE thing. Now I guess it’s a tie.

  4. Kerry D.

    As someone who’s had CFS for 26 years now, let me say thank you to you Rachel for spreading the word. Like many other patients, I’ve know for years, from hard experience, that CBT and GET are dangerous things. But when the “experts” insist they’re the best answer, you’re easily portrayed as “not wanting to get well”.

    It has been such a relief that finally there are articles out there we can point people to which show how bad the science really was.

    I get that no-one likes to admit they were wrong, but if these people would just do that, maybe some funding could actually go to studying the disease properly.

  5. Rachel

    Kerry, heads should roll over a study so badly conducted — and more heads should roll at Lancet for allowing that study to be published. How those people can sleep at night when their outrageously bad study design and/or dereliction of their responsibilies have led to so much suffering, I have no idea

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