Unraveling the mystery of chronic fatigue syndrome | July 10, 2015 | Palo Alto Weekly | Palo Alto Online |

Palo Alto Weekly

Cover Story - July 10, 2015

Unraveling the mystery of chronic fatigue syndrome

Scientists take small steps toward understanding a devastating disease

Researchers are making headway toward finding evidence of chronic fatigue syndrome and how it may change the brain.

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— Sue Dremann

Comments

1 person likes this
Posted by Keith ME/CFS FM
a resident of another community
on Jul 13, 2015 at 7:48 am

Having suffered with ME for over 10 years, the first thing i noticed was brain fog & my ability to problem solve was impaired. Apart from the constant pain i was in i was pushing harder each day to overcome my difficulties for the last two years until o could no longer carry on with my business of which i was paid extremely well...! To think i would rather sit on my back side & claim i needed support which wasn't on hand & to see my saving dwindling away whilst no medical professional could give me a definitive answer for the exhaustion & pain i was in was devastating. I became bad bound for 8 months, unable to read or write through cognition short term memory failure. Over time i read single words as a child learning to read but things started to sink into my brain & i soon believed something had changed my bodies DNA within my brain, which i still believe. At times i liken it to altimeters or Dementia with flu & muscle with tendon ligament damage. Each year my abilities i feel are improving, but my ability to pace myself has not so within 2 hours of activity i am fatigued. At risk of losing my sanity, my home & having lost my old life, thought of suicide cross my mind but i am ever hopeful of society developing a better understanding of how debilitating this condition is & possibly recovering a cure.


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Posted by Keith ME/CFS FM
a resident of another community
on Jul 13, 2015 at 9:19 am

I live in the UK, having read my above comment with embarrassment i thought i should make a better effort to explain myself more clearly. This is because of the effect of brain fog...!
Having suffered with ME for over 10 years, the first thing i noticed was brain fog & my ability to problem solve was impaired. Apart from the constant pain i was in, i was pushing harder each day to overcome my difficulties for the last two active years until i could no longer carry on with my business, of which i was paid extremely well...! To think i would rather sit on my back side & claim i needed support! which wasn't on hand & to see my savings dwindling away whilst no medical professional could give me a definitive answer for the exhaustion & pain i was in, was devastating. I became bed bound for 8 months, i found i was unable to read or write through cognition short term memory failure. Over time i read single words, as a child would when learning to read, slowly things started to sink into my brain & i soon believed something had changed my bodies DNA within my brain, which i still believe. At times i liken it to altimeters or Dementia with flu & muscle with tendon ligament damage. Each year my abilities i feel are improving, but my ability to pace myself has not, so within 2 hours of activity i am fatigued. With the thought of being at risk of losing my sanity, my home & having lost my old full active life, i have had thoughts of suicide crossing my mind, but i am ever hopeful of society developing a better understanding of how debilitating this condition is, & possibly recovering when a cure is found.


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Posted by request
a resident of Another Palo Alto neighborhood
on Jul 13, 2015 at 9:21 am

Weekly, can you please combine these comments with the main thread? Don't know why this separate thread was started.


2 people like this
Posted by Justin Reilly, JD
a resident of another community
on Jul 15, 2015 at 4:50 am

Dear Ms. Dremann,

This is a very good article. Thank you! But, two things were like nails on the chalkboard to me:

(1) this disease is called "Myalgic Encephalomyelitis" and "Chronic Fatigue *Syndrome*", but NOT "chronic fatigue." "Chronic fatigue" is just a symptom of many diseases and non-disease states. Using this term has caused an incredible amount of confusion over the years. Let's end the confusion. Thank you.

(2) it was not "surprising" that Montoya found inflammation in brains of people with ME. This has been found since the 1980s, to my knowledge, in every study which looked for it.

Do you mind correcting this article? Thank you so much for your consideration.

Justin Reilly, JD


4 people like this
Posted by Deborah Waroff
a resident of another community
on Jul 15, 2015 at 2:23 pm

As a veteran journalist myself I would like to congratulate Ms. Dremann on wrapping up this subject matter in concise form but with great understanding. Were all journalists equally conscientious we might well be closer to a cure.
I do, however, echo Justin Reilly's objection to calling the disease "chronic fatigue." As he notes, this compound noun is a symptom of many, many chronic illnesses -- cancer, multiple sclerosis, Sjögren’s syndrome, lupus, rheumatoid arthritis and more, and therefore not suitable as a name for any one.
A bit of history may be helpful here. Going back into the past century, this disease had been known as everything from “Iceland Disease” -- after an outbreak there -- to "Benign Poliomyelitis” (for its lack of immediate fatalities.)
A descriptive official name, "Myalgic Encephalomyelitis," (M.E.) originated in a 1955 editorial in the prestigious British Medical Journal. This appeared following the infamous outbreak of M.E. at London’s Royal Free Hospital, which had struck down staff en masse.
The World Health Organization (WHO) made the name official internationally in 1968, and WHO staff assigned it the code 93.3. This put it within the category of neurological diseases, as it then was already known to affect spinal cord and brain tissues.
Yet Americans – including, alas, the majority of their doctors -- know the disease only by the misleading and dismissive moniker "Chronic Fatigue Syndrome." This is so because the Centers for Disease Control and Prevention (CDC) had re-christened it so in 1988, and put the full force of its many publications, studies and releases behind embedding it in the national mind.
Why? Surely someone must have noticed that this would appear a crass gesture of “Ugly American” intellectual imperialism, apart from other improprieties.
Propaganda is the answer. Beginning in the winter of 1984-85, when a large outbreak of the disease mysteriously struck Incline Village, Nevada, on the northern shore of Lake Tahoe, scary rumors had flown. Would the new Tahoe disease turn out to be a super-flu, or perhaps mononucleosis on steroids?
This was not good for the economy. The Tahoe area economy, to be specific. Tahoe attracts three million visitors annually, fueling a multi-billion dollar economy based on real estate and tourism. Rumors scare away tourists, second home folk and dollars.
Agencies of the Federal government, namely CDC and National Institutes of Health (NIH), were enlisted to subdue the growing panic. They plunged in. An NIH viral expert, for example, encouraged edits to CDC reporting that would delete mention of seizures among the stricken.
Finally, in 1988, a committee meeting was set to consider the disease and its name. It would include international experts familiar with Myalgic Encephalomyelitis who clearly identified the Tahoe ailment as such. The name "Chronic Fatigue Syndrome" (CFS), employed in some US material since 1986, would be under discussion as a happily anodyne alternative to the grim-sounding Myalgic Encephalomyelitis.
Speaking generally, of course, no corporate chief or government administrator in her or his right mind will leave the outcome of an important meeting to spur-of-the-moment interactions among participants. Nor did this meeting seem to have been left to chance. The name “Chronic Fatigue Syndrome,” suggesting only mild discomfort on the part of its victims -- as opposed to the cancers, heart failure and overwhelming disability that constitute the reality -- was duly voted in. Three committee members, all with wide experience of ME, felt so strongly their dissent that they resigned on the spot and walked out of the meeting in apparent fury.
Tahoe recovered rapidly. The patients have not.
At present the NIH and CDC often combine names, referring to "ME/CFS" and following pressures and initiatives from outside.
Yet despite apparent peace the NIH most peculiarly has initiated a purge of the name Myalgic Encephalomyelitis. Observer minds boggled when the Institute of Medicine (IOM) committee hired in 2013 by NIH to assess “ME/CFS” announced its conclusions ahead of time in early 2015; they include the proposed new name "Systemic Exertion Intolerance Disorder” (SEID.) There wasn’t really much encephalomyelitis to be found in patients, IOM reasoned, after having excluded Stanford research to make the point stick.
It is beginning to emerge, however, that engineering the new name may have been still another degree less kosher. At the May 29, 2015 London conference of British M.E. charity Invest in M.E., one speaker announced truly gobsmacking news: an IOM insider had informed him that, contrary to Institute procedure, the committee had been ordered to get rid of the name Myalgic Encephalomyelitis. And so the prestigious IOM committee papered over the name studies have shown to make medical professionals and public alike most inclined to take the disease seriously – thereby maximizing help for patients. By logic one must reason that the purpose of SEID was premeditated to discourage help and care for patients.


2 people like this
Posted by request
a resident of Another Palo Alto neighborhood
on Jul 15, 2015 at 5:56 pm

Hey everyone,
The main page of comments is here:
Web Link

A troll whose post has since been removed started this separate thread. Please comment to the original thread so everyone gets the benefit of all the comments!


Like this comment
Posted by Christopher Calder
a resident of another community
on Jul 23, 2015 at 11:43 am

"Examination of Single Nucleotide Polymorphisms (SNPs) in Transient Receptor Potential (TRP) Ion Channels in Chronic Fatigue Syndrome Patients"

This study explains why so many people with Chronic Fatigue Syndrome develop Postural Orthostatic Tachycardia Syndrome (POTS) as well as allergies, pain, gut problems, and chemical sensitivity. The study findings are compatible with all the recent studies that show small but significant changes to the brains of CFS patients.

You can download the paper here.

Web Link


2 people like this
Posted by Susan
a resident of Menlo Park
on Jul 25, 2015 at 3:00 pm

Dr. Paul R. Cheney, who runs the Cheney Clinic in Asheville, NC has been focused on this illness since the first reported outbreaks in Incline Village in the mid 1980's. He is a leading researcher and clinical physician and has brought many people back from this illness. If you're extremely ill, you should contact his clinic. He saved my life.


1 person likes this
Posted by Smegfa
a resident of another community
on Jul 31, 2015 at 3:42 am

[Post removed.]


Like this comment
Posted by Brenda Reed
a resident of another community
on Jul 4, 2016 at 10:04 am

"... with valganciclovir against a placebo involved 30 chronic fatigue patients who had elevated antibodies ..."

This should read: "... with valganciclovir against a placebo involved 30 Chronic Fatigue Syndrome patients who had elevated antibodies ...."

"Chronic Fatigue Syndrome is a diagnosis; "chronic fatigue" is a symptom.

I bet you don't substitute "thirsty" for "diabetic."

By shortening the name of this illness and placing it in lower case letters you are leading people to believe that tiredness and CFS are the same thing.

Please correct the article. There's really no reason to publish good information if you're going to pair it with careless writing that perpetuates stereotypes.


Sorry, but further commenting on this topic has been closed.

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