Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

STAT NEWS ^ | September 21, 2016 | JULIE REHMEYER

[Seizethecarp]

If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.

Problem is, the study was bad science.

And we’re now finding out exactly how bad.

Under court order, the study’s authors for the first time released their raw data earlier this month. Patients and independent scientists collaborated to analyze it and posted their findings Wednesday on Virology Blog, a site hosted by Columbia microbiology professor Vincent Racaniello.

The analysis shows that if you’re already getting standard medical care, your chances of being helped by the treatments are, at best, 10 percent. And your chances of recovery? Nearly nil.

The new findings are the result of a five-year battle that chronic fatigue syndrome patients — me among them — have waged to review thWhen the Lancet study, nicknamed the PACE trial, first came out, its inflated claims made headlines around the world. “Got ME? Just get out and exercise, say scientists,” wrote the Independent, using the acronym for the international name of the disease, myalgic encephalomyelitis. (Federal agencies now call it ME/CFS.) The findings went on to influence treatment recommendations from the CDC, the Mayo Clinic, Kaiser, the British National Institute for Health and Care Excellence, and more.

But patients like me were immediately skeptical, because the results contradicted the fundamental experience of our illness: The hallmark of ME/CFS is that even mild exertion can increase all the other symptoms of the disease...

[yefragetuwrabrumuy]

Let me guess. “The science of Chronic Fatigue Syndrome is settled.”

As far as the *real* science goes, one or more of three things seem to be the most likely. A viral infection, an immune system failure, or a hormonal-metabolic failure. (Or a combination of the above).

A viral infection cannot be seen in isolation to its interaction in the biome, the gut flora. This includes 300-1000 different kinds of bacteria, of which 30-40 take up almost all the space, and other microorganisms including yeasts, protozoa, and parasites. But above all, different viruses dominate the biome by a wide margin, though about half are bacteriophage, that is, they eat bacteria. And the biome in turn is very interactive with both the hormonal-metabolic system and the extremely complex immune system.

[refermech]

Sometimes though, they actually cure people. Whether their treatment caused the cure is debatable of course.

[NonValueAdded]

Try a word-substitution exercise, replacing “ME/CFS” with “Anthropogenic Global Warming” and the article would still ring true.

[fision]

I have MS and was a participant in the study. I questioned the veracity of the study from my first session when I thought I was being asked subjective, leading questions that left me with the impression that it was a test and there were “right” answers. There was no opportunity in the study for me to offer my critique, but I mentioned it to my neuro and he tentatively agreed but said I should still go through the motions of my part in the study.

I stayed with the program anyway because I enjoyed the cognitive tests which were objective and based on short-term memory and pattern recognition skills. The test were very tiring, but I consistently aced several of them.

[wafflehouse]

As for CFS, I await clear biological evidence it exists. Point to a microbe, an invading cell or other biological unit. To me, the very word “syndrome” connotes inexactness and lays the foundation for all sorts of manipulation that has no connection with the “syndrome,” frankly.

seems a bit unreasonable to deny the existence of something because the exact cause hasnt been pinpointed. this sounds pretty arrogant to me

[mountainlion]

“Rat Poison” is also used to control blood pressure.

[fision]

Most people with CFS is one of the symptoms of MS. It IS real.

[tioga]

My 95yo MIL went for a required check up. Hadn’t been to a doctor in years. She told the doc when he walked in...I will not take any medications. She never has in her life. After her exam, the doc told her she had a clean bill of health and good for her. She only went to get some insurance for her burial, which she figures she will need soon enough. My MIL lives in her own home, drives her own car and goes to daily mass. She’s healthy as a horse.

[jjsheridan5]

Point to a microbe, an invading cell or other biological unit.

I suspect that virtually all CFS sufferers would be ecstatic if someone could do just that. But, unfortunately, serious diseases don't necessitate such things. Look at it this way: the human body is an indescribably complex system of overlapping, integrated, and semi-independent systems. In most cases, it just "works". But anyone who has done any system design knows that, even in the simple case, it doesn't take much for complex systems to break down. And it doesn't necessitate a microbe or invasion. And if a microbe is involved, the microbe does not need to be anything other than a temporary intrusion to cause a fundamental systemic breakdown.

The bottom line is that we know far less than we think we do, when it comes to medicine. And diseases caused by microbes and malfunctions at the cellular level are really just the low-hanging fruit of medicine. The really hard things are where there are broad, systemic breakdowns, whose effects persist well after (a potentially otherwise innocuous) the cause is long gone. And in complex, interconnected, and nested systems, these types of breakdowns are not only possible, but are essentially inevitable.

CFS is probably quite real. But it is entirely possible that we are decades away from having the basic knowledge of how all of these systems interact in order to grasp why they go awry. Let alone knowing how to fix it. And it is entirely possible that we look back and realize the cause was never something as obvious as a bug or a virus, but rather an unfortunate combination of otherwise harmless environmental factors.

[fision]

The above should read: CFS is one of the symptoms of MS. It IS real.

[redhead]

Thanks for that link! Explains much. I lived in central Utah in the fifties, and am oficially a ‘downwinder.’ I am sure the children I bore during that time were all infected from Dugway at some point. It’s pretty desolate out there, but the wind doesn’t care about things like that. Link saved and passed on. Thanks again.

[redhead]

"“Has anyone noticed the quality of healthcare getting worse and worse.” For several years now my wife and I have been discussing how medical care at all levels and in all circumstances has gotten terrible. We wondered if our personal experience was wide spread.

It seems as if the medical profession, doctors and all related personnel, has stopped caring and have totally lost the art of communication. EVERYTHING seems to have turned into $ and CYA.

And my daughter-in-law (a doctor) wonders why I am so reluctant to see my GP (A great guy!) for everything. I have been told that until I have a DPT vaccination, I will not be allowed to be around my soon to arrive grandson.

[mumblypeg]

So, ironically, millions really will die as an indirect result of “climate change.” Because the NWO health care will kill them.

[polymuser]

I did a lot of digging into Fibro and CFS years ago, for a loved one suffering from it, with onset following a physical trauma while fighting a virus. Their father was military.

Came across mycoplasma. Detection takes specialized testing. Treatment is long term, high power antibiotics, essentially steeping the entire body in antibiotic to kill all traces of it. That has significant risks, of course, but can get a livable life back.

[LibWhacker]

Joe, the owner of the first gym I ever joined and quite a character, hated doctors and used to always say we could take him to a doctor when he was unconscious and unable to resist. Tragically, he died very young when the cancer took him. Same thing happened to one of my cousins.

Don’t hate the doctors. It could end very badly if you do. The vast majority of them sincerely try very hard to help you.

[Paladin2]

So, it’s simple then....

[Sans-Culotte]

CFS was replaced with Fibromyalgia and Fibromyalgia has been replaced with Chronic Lyme disease.

I prefer the umbrella term hypochondria.

[polymuser]

They did not do that treatment, still suffering.

Why? Insurance will not allow doctors to do that treatment, as it defies IDSA treatment guidelines. They can be disciplined/fined if they go rogue. The pharma $$$ will come from a vaccine.

[polymuser]

I prefer the umbrella term hypochondria.

I will politely but vehemently disagree with you.

[dubyagee]

Be careful. I held the same arrogant opinion (and it is an opinion) until an invisible illness took me down. Karma really can be a &*(@!!! Take care.