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Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back
STAT NEWS ^ | September 21, 2016 | JULIE REHMEYER

Posted on 09/22/2016 7:38:17 AM PDT by 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...

(Excerpt) Read more at statnews.com ...


TOPICS: Culture/Society; Government; News/Current Events; United Kingdom
KEYWORDS: cfs; chronicfatigue; mecfs; ms; pacetrial
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To: mountainlion
“Rat Poison” is also used to control blood pressure.

Not really to control blood pressure, but to help prevent blood clots. Baby aspirin a day does about the same thing.

81 posted on 09/22/2016 11:29:25 AM PDT by itsahoot (GOP says, Vote Trump. But if your principles won't let you, Hillary is OK.)
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To: Dawn53Fl

I went out on SS disability with CFS 16 years ago.

But 10 years ago I was worked up by a neurologist for MS because I developed spasticity in my arms and legs making him think I might have the late onset type of MS called primary progessive (PPMS) that men tend to get more often than women after age 50.

Unfortunately, I have read that in many cases this can be conclusively be diagnosed on autopsy!

In the meantime, for the past ten years I have been taking 40mg of baclofen/day (10mg every 5 hours) just to be able to keep moving my arms and legs smoothly).

This probably has nothing to do with my ME/CFS as it is not normally associated with ME/CFS.


82 posted on 09/22/2016 11:29:47 AM PDT by Seizethecarp
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To: yefragetuwrabrumuy

Agreed! See my post from last week:

New study shows chronic fatigue syndrome may have to do with gut microbes
http://www.freerepublic.com/focus/f-chat/3470533/posts

Posted on 9/17/2016, 9:07:34 PM by Seizethecarp

“Our work demonstrates that the gut bacterial microbiome in chronic fatigue syndrome patients isn’t normal, perhaps leading to gastrointestinal and inflammatory symptoms in victims of the disease,” said Maureen Hanson, a professor of molecular biology and genetics at Cornell. “Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.”


83 posted on 09/22/2016 11:37:50 AM PDT by Seizethecarp
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To: Sans-Culotte
I prefer the umbrella term hypochondria.

I used to laugh at people feigning back problems because there was no physical evidence of disability, until one day I stood up at my computer and down I went.

84 posted on 09/22/2016 11:39:18 AM PDT by itsahoot (GOP says, Vote Trump. But if your principles won't let you, Hillary is OK.)
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To: catnipman
How in the heck are you going to win the Internets that way?

You must comment, you must contribute to the confusion, to the complexity of truth, it has become our mission in this world of NUTZ!

85 posted on 09/22/2016 11:47:22 AM PDT by right way right (May we remain sober over mere men, for God really is our one and only true hope.)
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To: fision

“CFS is one of the symptoms of MS.”

In medical terminology, chronic fatigue is a symptom of many illnesses including MS, however chronic fatigue syndrome a.k.a. what the US Gov’t calls ME/CFS is a specific entity.

The latest updated definition of ME/CFS released to US MDs included a suggested name-change which was immediately dropped because a fight broke out (as usual) but here is the new diagnostic definition of ME/CFS:

http://www.webmd.com/chronic-fatigue-syndrome/news/20150210/new-name-new-criteria-for-chronic-fatigue-syndrome

Feb. 10, 2015

In a report released Tuesday, an independent panel of experts convened by the U.S. government called the illness a “legitimate” disease that features five main symptoms and should be taken seriously by physicians.

According to the new report, people suffering from chronic fatigue syndrome suffer three core symptoms:
•Impaired ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by often-profound fatigue.
•A worsening of these symptoms after any type of exertion, including physical or mental exercises or emotional stress.
•Sleep that does not alleviate fatigue.

To diagnose someone with chronic fatigue syndrome, a physician also must find the person is suffering from one of two additional problems:
•Impaired ability to think.
•The inability to remain upright, with symptoms that improve when lying down.

A diagnosis also depends on these symptoms persisting for at least six months, and they must present at least half the time with moderate to severe intensity, the IOM panel concluded.


86 posted on 09/22/2016 11:52:36 AM PDT by Seizethecarp
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To: Paladin2

I would say on the ‘simple’ scale of somewhere between finding gravity particles and an easy solution to the US national debt.


87 posted on 09/22/2016 11:52:37 AM PDT by yefragetuwrabrumuy (Friday, January 20, 2017. Reparations end.)
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To: polymuser

Just follow the money and see how many on the cdc have links to insurance and pharma companies.


88 posted on 09/22/2016 11:57:36 AM PDT by freeangel ( (free speech is only good until someone else doesn't like it)
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To: itsahoot
I used to laugh at people feigning back problems because there was no physical evidence of disability, until one day I stood up at my computer and down I went.

I don't think everybody with these maladies is a hypochondriac, but I suspect many are. If you think you're sick, you're sorta are. Speaking of back problems, I had two pairs of vertebrae fused about 4 years ago. I still have a lot of pain and numbness issues, but it would be worse if I had not had the surgery.

89 posted on 09/22/2016 12:25:05 PM PDT by Sans-Culotte ("Political Correctness is communist propaganda writ small" - Theodore Dalrymple)
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To: Sans-Culotte

“I prefer the umbrella term hypochondria.”

Walk a mile in my shoes.

I have lab tests showing four “reactivated viruses” in my system because my ME/CFS has weakened my immune system so much that childhood and young adult viruses that I had contracted and beaten down earlier in my life into recesses in my body have “reactivated.”

I have to take 1500 mg of Valtrex every day to keep my reactivated mononucleosis (HHV-4) from getting out of control and reducing me to a demented state.

Believe me my self-insured Fortune 50 company didn’t pay out $1 million in total cost for me and my wife as my dependent under my corporate long-term disability plan over 16 years after I successfully settled with them out of court for hypochondria.

Nor does the Social Security Admin. pay out $billions every year for ME/CFS, which it does under a recognized code.


90 posted on 09/22/2016 3:51:35 PM PDT by Seizethecarp
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To: mouse1

Sorry to hear of your condition.


91 posted on 09/22/2016 3:56:08 PM PDT by Seizethecarp
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To: Patriotic1

This was a major scandal in the UK. It was a criminal conspiracy to protect the National Health Service from having to pay out to CFS sufferers on permanent disability who were bed-bound and incapacitated. They were thrown out on the street, many with no support at all.


92 posted on 09/22/2016 4:01:15 PM PDT by Seizethecarp
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To: Seizethecarp

Geez, I already said on another post that not everybody is a hypochondriac. Some are. This is like when I post on a movie forum that young people don’t get into classic films, and some youngster goes on about how he’s into classic films.


93 posted on 09/22/2016 4:08:19 PM PDT by Sans-Culotte ("Political Correctness is communist propaganda writ small" - Theodore Dalrymple)
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To: mouse1
"I have constant ANA (inflammation) positive blood results, tired, weak, joint aches. Mind you, 10 years ago I would be gardening, camping, hiking or fishing like there was no tomorrow. Now I sit here, doing nothing."

I have steadily went downhill health wise since my late thirties. I used to work on construction jobs on my rental properties, But I kept having trouble with fatigue and joint aches etc.

Now I can barely walk up a flight of stairs or stand on a ladder longer the 10 minutes. I can walk OK for a bit (a couple of Kilometers or so) but suffer later with severe joint pain in knees and ankles.

Holding tools has become a problem. Swinging a hammer is now getting too difficult because I can't keep it gripped tight enough to keep it in my hand for more than a few swings without resting.

I had to find some form of exercise that could get me out of the house and moving so I use a Bike. It at least reduces the stress on my legs.

I have been diagnosed by different doctors with Fibro, CFS Restless Leg Syndrome, Liver disease. The one thing all the doctors did was Rx pain pills. One Doc had me on two separate pain pills and a muscle relaxer then in a few months he diagnoses me with liver disease and starts talking transplant operation.

I started researching all the pills he had me on and stopped taking them and moved to back our family Doc that I was forced to quit seeing a few years before because Health Insurance rules. Two months later my liver tests come back fine. The drugs the other doctor was giving me were slowly destroying my liver.

Family doc says arthritis has wrecked my ankle and knee joints and one specialist confirms. But the pain stresses me to the point of exhaustion and I have little stamina. Exercise brings on severe pain in all joints so I need to take a pain pill which fogs my head and makes me sleepy.

I never thought that "getting old" would happen so fast.

94 posted on 09/22/2016 4:24:00 PM PDT by Mad Dawgg (If you're going to deny my 1st Amendment rights then I must proceed to the 2nd one...)
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To: Mad Dawgg

Sorry to hear Mad Dawgg. Yes it has been a rapid decline. I cannot imagine 10 years down the road. My husband tells me I am a shell of my previous self. I have always enjoyed gardening, outdoors, fishing, home renovating. I remodeled our rec room from flooring to putting up dry wall to ceiling panels etc. Now it’s a chore to sweep a floor. Certainly didn’t imagine this in my golden years.


95 posted on 09/22/2016 5:37:42 PM PDT by mouse1
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To: Gratia

“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.

________________________

Yes, we are turning into thirdworld healthcare. One will always need to bring ones own carer to the hospital and an advocate.

Example. A relative was newly diagnosed with a rare liver related disorder. It was so rare that the specialist wrote up an infortion packet to give to physicians incase of emergencies. An emergency happened, she was transported to the hospital and when given the packet read it and just stood there. Part of the issue was total glucose depletion, and the packet recommended a 10% glucose drip be run.

The docs just looked at me and said, we only have a 5% Iv available, we don’t carry the D10%. I looked at them and said, send a normal saline up to the pharmacy and tell the pharmacist to turn it into D10% stat. I assured the physician that the pharmacy would have the recipe.

This was idiot work. And I was not dealing with the intern, this was the ER attending.

The other thing really noticeable is the lack of curiosity on the part of the medical staff. When I was young, if someone showed up with something interesting and new, there would have been runs up to the medical library and tons of Medline printouts. These medical people just looked at things superficially.

Incompetent.


96 posted on 09/22/2016 6:08:30 PM PDT by Chickensoup (Leftist totalitarian governments are the biggest killer of citizens in the world.)
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To: onedoug

Liberals systematically cleansed western medical ethics from schools around thirty years ago. I have noticed that young residents are appalling in their attitudes towards patients. They (not all) do not love; they act as if they are dealing with a piece of meat. They are rude and have no manners.

I get right in their faces and tell the doctor on them. Western medical ethics were the greatest.


97 posted on 09/22/2016 6:31:04 PM PDT by SaraJohnson
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To: Gaffer

My oncologist saved my life. But, in truth, he was an a hole in dealing with patients. I dealt with his assistant, who was an angel from God. She totally protected me.


98 posted on 09/22/2016 6:34:54 PM PDT by SaraJohnson
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