Monday, November 17, 2008

"Gulf War Syndrome" is real, report finds

It's astonishing to me how long it's taken for illnesses like these to be
legitimized. I suppose
I will just try to content myself with the
fact they have been and not concentrate on the
and ridicule that victims of Enigmatic Illness have faced.

Remember only half this battle has been won,
the other half is finding adequate care.

WASHINGTON (Reuters) – A report released Monday concluded that "Gulf War Syndrome" is a legitimate condition suffered by more than 175,000 U.S. war veterans who were exposed to chemical toxins in the 1991 Gulf War.

The congressionally mandated report could help veterans who have battled the government for treatment of a wide range of unexplained neurological illnesses, from brain cancer to multiple sclerosis.

The Research Advisory Committee on Gulf War Veterans' Illnesses concluded that Gulf War Syndrome is a physical condition distinct from the mental "shell shock" suffered by veterans in other wars. Some earlier studies had concluded it was not a distinct illness.

"Scientific evidence leaves no question that Gulf War illness is a real condition with real causes and serious consequences for affected veterans," said the committee, which has been looking into the problem since 2002.

The committee, composed of independent scientists and veterans, said Congress should boost funding for research on Gulf War veterans' health to at least $60 million per year.

"This is a national obligation, made especially urgent by the many years that Gulf War veterans have waited for answers and assistance," the committee said.

Congress set up the committee in 1998, but the U.S. Veterans Administration did not appoint anyone to serve on it until 2002.

Gulf War Syndrome affects at least one-fourth of the 700,000 U.S. troops who served in the 1991 effort to drive Iraq out of Kuwait, or between 175,000 and 210,000 veterans in all, the report found. Few have seen their symptoms improve over the past 17 years, the report said.

Symptoms include persistent headaches, widespread pain, cognitive difficulties, unexplained fatigue, skin rashes, chronic diarrhea and digestive and respiratory problems.

Many Gulf War veterans suffering these symptoms say they met with skepticism when seeking treatment.

The panel found two possible causes: a drug given to troops to protect against nerve gas, known as pyridostigmine bromide, and pesticides that were used heavily during the war.

The panel said other possible causes could not be ruled out, including extensive exposure to smoke from oil-well fires and low-level exposure to sarin gas when captured Iraqi stocks were destroyed.

The U.S. government has spent roughly $440 million on Gulf War health research since 1994, but spending has declined in recent years and often is not focused on improving veterans' health, the committee said.

The report further highlighted inadequacies in the medical care veterans have received from their government.

A 2007 investigation by the Washington Post found combat veterans in the current Iraq war faced rodent-infested housing and bureaucratic hurdles as they sought treatment at the Walter Reed Army Medical Center, the flagship military hospital in Washington D.C..

(Editing by David Storey)

Copyright © 2008 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

Tuesday, November 4, 2008

Fibromyalgia a ‘Real Disease,’ Study Shows

Researchers Say People With Fibromyalgia Have Abnormalities of Blood Flow in the Brain
By Caroline Wilbert
WebMD Health News
Reviewed by Louise Chang, MD

Nov. 3, 2008 -- A new brain scan study concludes that fibromyalgia is related to abnormalities of blood flow in the brain.

"Fibromyalgia may be related to a global dysfunction of cerebral pain-processing," study author Eric Guedj, MD, of Centre Hospitalo-Universitaire de la Timone, in Marseille, France, says in a news release. "This study demonstrates that these patients exhibit modifications of brain perfusion not found in healthy subjects and reinforces the idea that fibromyalgia is a 'real disease/disorder.'"

Fibromyalgia is a chronic disorder characterized by widespread muscle pain and fatigue. It affects 2%-4% of people, mostly women. It has been called the "invisible syndrome" because it can't be diagnosed based on a lab test or X-ray.

For this study, researchers took brain scans on 20 women with fibromyalgia and 10 women without the condition. Participants also answered questions to assess measures of pain, disability, anxiety, and depression.

The brain imaging technique, called single photon emission computed tomography (SPECT), is able to detect functional abnormalities in the brain.

Past imaging studies of patients with fibromyalgia had shown abnormalities in cerebral blood flow, also called brain perfusion. In some areas of the brain, blood flow was below normal, and in some areas, it was above normal. In this study, by using whole-brain scans on the participants, researchers were able to analyze how perfusion in each area of the brain related to measures of pain, disability, anxiety, and depression.

Researchers confirmed that patients with fibromyalgia exhibited brain perfusion abnormalities in comparison to the healthy participants. These abnormalities corresponded with the severity of the disease. An increase in blood flow was found in areas of the brain involved in sensing pain and a decrease was found within an area thought to be involved in emotional responses to pain.

There seemed to be no relationship between these abnormalities and presence of depression or anxiety. "We found that these functional abnormalities were independent of anxiety and depression status," Guedj says in a news release.

Guedj, E. Journal of Nuclear Medicine, 2008; vol 49: pp 1798-1803.
News release, Society of Nuclear Medicine.
American College of Rheumatology web site.
© 2008 WebMD, LLC. All rights reserved.

Monday, June 9, 2008

a song of CFS and invisible illness

in a recent comment cinderkeys let me know about a song she'd written. i was quite touched by the depth of the emotion conveyed about the everyday of invisible illness, CFS in particular. With her permission... here are the lyrics (link to her myspace and the song below):

Copyright 2006 Susan Wenger
Band name: Cinder Bridge


Here I am again
Sitting by the window
In my small apartment on the second floor
Keep myself occupied
By looking at the traffic
As if I've lost the right to ask for more

My body feels like it's
Moving underwater
As I lift a cup of coffee to my face
I think about the things
I'd like to try and do today
But somewhere in the middle lose my place

Thick fog hazy brown
The two-ton weights that pull me down
They don't exist if no one else can see
Everybody knows about
The failings of the down and out
And everybody knows about me

I had a good job had some good friends
Had a life I could look forward to
When I woke up each day
And then the fog rolled in
Consumed them one by one
'til there was nothing left for it to take away

Sometimes I count it as a victory
When I manage
Just to drag my aching body out of bed
The doctors, mystified
Could not produce an answer
So they told me it was all in my head

'cause if I wanted to
I could shake this yuppie flu
Straighten out and set myself free
Anyone can clearly see
We all choose our own destiny
And everybody knows about me

Does it make it easier for you
To think there must be something I could do
Rise like a phoenix from the ashes of this solitary world

So I remain here
Sitting by the window
Watching all the people with their lives to live
I would give anything
To go outside and join them
But today I don't have anything to give

And still they have no doubt
I'm looking for an easy out
And this is what I wanted secretly
Everyone will have their say
They shake their heads
They walk away
And everybody knows about me
Everybody knows about me
Everybody knows about me

To take a listen head to

(If it doesn't start playing immediately, click the "Everybody Knows About Me" link.)

In Susan's own words, "My aim in writing "Everybody Knows About Me" was twofold. First, I wanted people with CFIDS or similar invisible illnesses to feel they weren't alone -- that not everyone believes it's just hypochondria or laziness. Second, I wanted to make nonsufferers understand why it's silly to believe that CFIDS/other invisible illnesses are just hypochondria or laziness."

Epilepsy Drugs to Get Suicide Warnings, FDA Confirms

US regulators are very close to finalizing new suicide warnings for 11 epilepsy drugs, The Wall Street Journal reported today. This past January, the Food & Drug Administration (FDA) issued an Early Communication announcing a safety review of the epilepsy drugs after a study showed they increased patients’ risk of suicidal thoughts and behavior.

The 11 epilepsy drugs slated for a new suicide warning are:

In addition to treating epilepsy, the anti-seizure medications are used for a variety of other illnesses, including migraines, certain nerve-pain disorders, and psychiatric diseases such as bipolar disorder that themselves carry a risk of suicide.

The FDA began investigating if epilepsy drugs posed any suicide risk in 2005. In doing so, the FDA analyzed almost 200 studies of 11 anti-seizure drugs, some that have been on the market for decades. The studies tracked almost 28,000 people given epilepsy medications and another 16,000 given dummy pills.

According to the FDA, 0.43 percent of drug-treated patients experienced suicidal thoughts or behavior, compared with 0.22 percent of placebo-takers. The higher risk of suicidal thoughts and behaviors was observed at one week after starting a drug and continued to at least 24 weeks. The results were generally consistent among all the different drug products studied and were seen in all demographic subgroups. Overall, four people in the drug-treated groups committed suicide, and none in the placebo groups. For every 1,000 patients, about two more patients taking epilepsy drugs experienced suicidal thoughts than those who took placebo.

In an interview with The Wall Street Journal, Russell Katz, director the FDA’s neuropharmacological drug division confirmed the suicide warnings are coming. “We are working on the labeling changes that we want to get to the companies,” he said. An FDA advisory panel is slated to take up the issue of epilepsy drugs and suicide on July 10, but the Journal speculated the new warnings could come even sooner than that.

At least one drug maker, Pfizer Inc., is less than pleased at this development. Pfizer disputed the FDA’s analysis in a forum this week sponsored by the Epilepsy Study Consortium in New York. Pfizer especially disputes the inclusion of Lyrica - one of the company’s biggest growth drivers -on the FDA’s warning list. Pfizer said that Lyrica accounted for only 6.3% of the total 142 suicidal events cited by the FDA analysis. But the FDA is sticking to its guns, and the new suicide warning will apply to all 11 epilepsy drugs.

Most other epilepsy drug makers are resigned to the label changes, according to the Journal. GlaxoSmithKline, the maker of Lamictal, approached the FDA this year to volunteer changes regarding possible suicidal-behavior risks. Other drug makers may have chosen not to challenge the FDA on suicide warnings because their medications are no longer as lucrative as they once were, as patents on many epilepsy drugs have, or are close to, expiring.

Tuesday, May 6, 2008

'Seven genetic types of ME' found

Geneticists have identified a biological basis for seven different subtypes of chronic fatigue syndrome.

The researchers from St George's Hospital, University of London, hope the work could lead to a blood test to distinguish between the forms.

Campaigners hope it will help counter the opinion, which remains in some quarters of the medical profession, that it is a psychological condition.

The research findings are to be presented to a conference in Cambridge.

It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone
Neil Abbot, ME Research UK

Chronic fatigue syndrome (CFS), also known as ME, is a condition with a diverse range of symptoms but particularly characterised by profound muscle fatigue after physical exertion.

In its most extreme form, CFS/ME leaves sufferers bed-ridden. There is currently no diagnostic test or cure.

It affects around one in 200 people.

'Biologically meaningful'

The St George's study looked at 55 patients from the US and UK with the condition, and carried out a genetic analysis of them and 75 healthy blood donors.

It identified the seven distinct subtypes of CFS/ME identified by a specific genetic pattern.

These were linked to specific symptoms.

Type one had the worst anxiety and depression levels, along with poor sleep and high pain levels.

Type two was characterised by significant post-exercise fatigue and joint and muscle pains, while type three was the mildest form of the disease.

The research identified type four as linked to moderate levels of body pain and sleep problems, with type five having stomach complaints and the most marked muscle weakness.

Type six was specifically connected to fatigue, and type seven had the most severe symptoms including pain, swollen glands and headaches.

Type four and type six were the most common forms of the condition.

Dr Jonathan Kerr, who led the St George's research, said: "We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment."

Neil Abbot, of ME Research UK, which is organising the conference along with the Irish ME Trust, said: "The discovery of a 'thumb-print' for the illness would be the single greatest advance that could be made because, at the moment, diagnosis is on the basis of a set of vague symptoms association with other illnesses.

"It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone."

Friday, January 18, 2008

Are YOU Bendy Too?

It took me 9 years before I realized how big a role my hypermobility was playing in my health. It was that discovery which finally led to my recent diagnosis of Ehlers-Danlos Syndrome (it's a collagen disorder of several different variations )

The drawing above, the Beighton Score, is what a medical professional will use to rate your "bendiness", tho it's not the be all and end all on the subject.

more on the subject soon...

Wednesday, January 16, 2008


1. Decisions about which body part to wash depend on which doctor you're seeing today, i.e., face/ears for the ENT; feet for the podiatrist; arms for blood tests; etc...
2. Proper use of toiletries can forestall bathing for several days. However, if you live alone, deodorant is a waste of good money.
3. Read labels carefully. Ever notice how much the can of room freshener resembles the can of deodorant?
4. Remember to warn your spouse before kissing if you've just taken your herbal remedies, since your breath now smells like grass.

1. If you can't remember what it is you're cooking in the pot, whatever it is, it can probably use more salt.
2. Do not toss that cold cup of coffee into the dryer or set the iron in the refrigerator to cool off, no matter how good an idea it may seem at the time.
3. When your husband tells you "Don't worry about dinner, just throw some frozen chicken in the oven and forget it", DON'T forget it.
4. When everything INCLUDING the can opener is dirty, it may be time to wash some dishes.
5. It's bad manners to fall asleep at the table, especially in the food.
6. If you're having a bad day, there's nothing better than pizza and quiet.

1. Always place a Post-It Note on the dashboard telling you where you're going. And when you get there, place another on the dashboard that says HOME.
2. Never relieve yourself from a moving vehicle, especially when driving.
3. Always carry an electronic homing device in your car and with you so you can find your car in the parking lot.

1. If you have to vacuum the bed, it's time to change the sheets.
2. If you take the dog for a walk, make sure he brings you back.
3. Nevermind about taking one day at a time. Just stick to one thing at a time.
4. Try to spend at least 45 minutes each morning doing one get-up.
5. Work at learning something new every day, like sitting up, for example...
6. Remember to breathe when napping. It's unnerving to wake up and see vultures staring at you.
7. Learn to understand your "body language":
Joints - "I ache! It's going to rain!"
Stomach - "You're getting me upset!"
Nose - "Oh, oh, I'm getting a cold!"
Head - "Stop it, all of you! I'm getting a migraine!"

The Burden of Proof Rests Heavier on Misunderstood Illnesses.

Here at a time when the FDA is finally approving drugs for the treatment of fibromyalgia (Lyrica being the first so far) the media pipes up with the, "Is It Real?" question again - some outlets more politely than others e.g. the recent New York Times article - I won't even bother to link to the other articles in that vein which have been quite a bit more insulting. Feeding a portion of this latest rash of articles is the fact that Dr. Frederick Wolfe, who had originally "discovered" fibro in the early 90's has now decided it's a psychosomatic illness.

I'm of two minds about the situation. The reality of the condition I don't feel is in question. The fact that doctors allow it to be the final diagnosis and cease looking any deeper I feel is a problem.

Having been diagnosed with fibro and CFS a decade ago, I'm angry it took me 10 years to get the more accurate diagnosis of Ehlers-Danlos. There are a portion of doctors treating Fibromyalgia (and to be fair, CFS) as a wastebasket diagnosis. Can't figure it out? Blood work odd but not overtly dangerous? Fibromyalgia!

Do I believe this collections of symptoms labeled Fibromyalgia exist? Absolutely! Do I believe that once that diagnosis is received it's the end of the diagnostic road. Emphatically NO! There are subsets within both Fibromyalgia and CFS, and until a larger portion of the medical community starts taking a serious look at that effective treatment and true respect of these illnesses are a ways off I fear.

Tuesday, January 15, 2008

ah the frustration. i managed to get locked out of (how many people can do that?) by getting crossovers with my google account and another email. as a relatively computer literate individual i can't believe it took 5 months to straighten that out. some days i really wish computers would quit "simplifying" my life for me [sigh].