Scientific American: Baffling CFS Set for Diagnostic Overhaul

[Firestormm]

16 May 2014

Baffling Chronic Fatigue Syndrome Set for Diagnostic Overhaul

Researchers might soon redefine the mysterious condition, while the latest findings point to the role of brain inflammation

More than one million people in the U.S. suffer from a poorly understood, difficult-to-diagnose condition that can leave them debilitated by unshakable exhaustion, pain, depression and cognitive trouble. Researchers, however, are still unsure what causes chronic fatigue syndrome (CFS), how to treat it, how best to diagnose it and even what to call it.

A new study is now providing hope for better understanding—and potentially better diagnosing—the disease. It has revealed a striking pattern of brain inflammation in CFS patients. Meanwhile, diagnosis and definition of the disease could soon be getting a major overhaul as a new $1-million Institute of Medicine (IOM) study gets underway at the request of the U.S. Department of Health and Human Services (HHS). Is the exhausting search for answers about CFS finally coming to an end?

In your head
Chronic fatigue syndrome was first formally described in the late 1980s. Soon thereafter it was lumped in with another perplexing condition known as myalgic encephalomyelitis (ME), which had been classified as a disease of the nervous system in the 1960s. A precise definition and diagnosis of CFS—sometimes called CFS/ME—has largely eluded doctors and researchers, however. Its subjectively described symptoms seem untestable: everyone is exhausted from time to time; many people suffer from occasional aches and pains; and, sure, we all have foggy days as well as down ones.

A large obstacle is that, unlike cancers or high blood pressure, researchers have no particular biomarkers that would allow them to test for the condition. Doctors rely exclusively on patient reports of the severity and duration of the symptoms—usually requiring the symptoms to be present for at least six consecutive months—along with the presence of extreme post-physical or mental exertion, fatigue and unrefreshing sleep, to diagnose the condition. Remissions and relapses confound clinicians further.

A change might be on the distant horizon, however, thanks in part to a new study of the brains of patients living with CFS.

Doctors have long suspected brain inflammation as a potential cause, but no definite traces of it had been detected. New research, in the June issue of the Journal of Nuclear Medicine, shows for the first time distinct increases in inflammation in particular regions of CFS patients' brains.

Read more: http://www.scientificamerican.com/a...fatigue-syndrome-set-for-diagnostic-overhaul/

 

[SOC]

Not sure what to think. It's certainly better than other garbage we've seen published, but there's still some misinformation, or misleading information anyway. For example, depression is not a defining symptom of ME/CFS, and there's no mention of immune abnormalities.

Still, overall it's probably more on the positive side than the negative. This is probably the way our public relations is going to go. It won't jump suddenly from the current horribly incorrect misinformation to strictly accurate information overnight. So this is a step in the right direction.

 

[alex3619]

Even in that short piece they made a few mistakes. I wonder if we can comment somewhere?

 

[Marco]

Even in that short piece they made a few mistakes. I wonder if we can comment somewhere?

I used to read Scientific American back in the day - can't remember why now!

 

[caledonia]

Even in that short piece they made a few mistakes. I wonder if we can comment somewhere?

You can leave comments below the article. http://www.scientificamerican.com/a...fatigue-syndrome-set-for-diagnostic-overhaul/

 

[SOC]

Oh geez. They used one of those "tired people" stock photos, too. God, I hate that. It's so overdone and so unrepresentative of the illness. Do they use stock pictures of people coughing when they write an article about lung cancer?

And some twerp in the comments is conflating ME/CFS with chronic fatigue.

 

[alex3619]

Myalgic Encephalomyelitis is not chronic fatigue. Indeed, many ME patients do not have chronic fatigue as a clinical sign. The key clinical sign is a delayed and prolonged marked degradation in capacity following activity. This can be both physical and cognitive. It can include an exacerbation of any existing symptom, of which there can be many. CFS and ME criteria can overlap, but they are not identical patient cohorts.

A test that is probably diagnostic has already existed since 1949 or prior. It is the Cardio Pulmonary Exercise Test. Its used to assess functional capacity in a wide variety of diseases, but was developed for cardiac patients. Until 2007 there was no published study showing its usefulness, but now we know its probably of the order of above 95% specificity and sensitivity when using a protocol designed to elicit hallmark ME feature. Even with a basic protocol however it shows severe disability in over half of MILD (strictly defined) CFS patients. A study to determine reliable specificity and sensitivity is still needed though, these are inferences from studies not intended to specifically measure either of these.

The 2 day CPET is the protocol that raises CPET to about diagnostic standard. This is still being investigated. CPET is a very old and very well understood technology, and the finding in ME is so striking it cannot be dismissed. Much of this research was done by the group now calling itself the Workwell Foundation. Just last month the anticipated independent replication was published.

CPET appears to be either directly diagnostic of ME or diagnostic of a crucial pathophysiological finding, though further replication and testing is welcomed. The aerobic energy system, mitochondrial energy production using oxygen, is broken and is very hard to recondition. Energy capacity is not increased on demand beyond a limiting point. That limit defines the severity of the illness.

Since this test has been around for 65 years, I am currently asking how the global medical and research communities could have missed it until 2007. They didn't. Some patients report being tested, anecdotally, back to the 1980s. Problems were found. Sadly nothing came of it as far as advancement of the science was concerned

Just posted this.

 

[caledonia]

I hate the people that post with their magic bullet solutions to "chronic fatigue". You invariably see these in the comments sections below articles about CFS. It's allergies, get some exercise, change your diet, eat garlic. Bleh. It's become one of my pet peeves.

 

[NK17]

This article is superficial, full of old and stuffy misconceptions.

IMO it's garbage!

Any of us who has been living with ME would do a better job at describing where we are right now with real research and in describing the highly debilitating symptoms.

And yes @SOC they added one of those 'tired people' stock photos, the ones that make you wish to look like that, fully dressed up, with make up and at an office desk ...

 

[justinreilly]

I wrote to the author. My letter below. You can tweet to her @KHCourage and/or send her a message at:
http://katherinecourage.com/contact/?contact-form-id=170...

Dear Ms. Harmon Courage,

Thank you very much to you and Scientific American for highlighting the research of Dr. Watanabe and also for taking an interest in ME ('cfs'). The topic isn't covered nearly enough.

I strongly endorse the comments of NoPosterGirl and Libbyboone.

I would like to especially highlight Libbyboone's explanation of the genesis of the term "CFS":
"Following outbreaks of what appears to have been ME in the US in the 1980s, the Centers for Disease Control (CDC) renamed the disease CFS and created new diagnostic criteria for the disease which were broader than the existing clinical descriptions of ME. The diagnostic criteria for the disease were broadened even further by the CDC in 1994 with the Fukuda definition of CFS that is still in use today. Subsequent CFS research has been greatly hampered by use of the overly broad 1994 CDC criteria which lacks specificity for the disease and selects subjects with a variety of medical conditions involving the reported symptom of fatigue, including subjects without the disease ME."

Further, some researchers in the US and UK have come up with patently invalid definitions of "CFS": the Sharpe 1991 criteria and the Reeves criteria. The subsequent use of these definitions by these scientists has further (and in my well considered opinion, intentionally) muddied the science and understanding of ME.

Unfortunately this especially causes confusion among those new to the situation including most journalists, so it is very understandable that there are inaccuracies in the article.

As others here have said, there is strong consensus among the experts on a definition, it is just that HHS doesn't want you to know that. And there are biomarkers, particularly the 2 day CPET. There has been repeatedly published solid evidence of neuro-inflammation going back to Anthony Komaroff et al.'s landmark 1992 study in the Annals of Internal Medicine where 85% of patients were found to have multiple punctate lesions in white matter tracks on MRI.

I urge you to look into the story further. There is much more to it than there seems. There are a large volume of vociferous objections to the IoM study as well as many other things HHS has done on the disease over the years. This is truly a story that deserves telling in these pages. A great place to start is the following article by Prof. David Tuller, Dr.PH:

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome

Knowledgable journalists to consult are Prof. Tuller, Hillary Johnson (Oslersweb.com), Llewelynn King (whitehousechronicles) and Mindy Kitei (cfscentral.com).

I would love to speak to you further on this important topic.

Sincerely,
Justin Reilly, esq.
NY, NY

 

[Snow Leopard]

I hate the people that post with their magic bullet solutions to "chronic fatigue". You invariably see these in the comments sections below articles about CFS. It's allergies, get some exercise, change your diet, eat garlic. Bleh. It's become one of my pet peeves.

Me too. Mostly because everyone I know with CFS or ME has already tried the above - most of us have tried extreme dietary changes like cutting out dairy or wheat etc. I mean if it was that obvious then why wouldn't we try it? Oh, we did and it didn't work.

 

[xchocoholic]

Me too. Mostly because everyone I know with CFS or ME has already tried the above - most of us have tried extreme dietary changes like cutting out dairy or wheat etc. I mean if it was that obvious then why wouldn't we try it? Oh, we did and it didn't work.

The problem is how cfs is diagnosed. I'm sure the people who post these majic cures were diagnosed with cfs and assume they're being helpful. We need realistic diagnostic criteria. Tc ... x