Friday, May 11, 2007

Awareness Day ... it's more than just knowing the letters C.F.S.

The latest ad for the medical group that doesn’t know the first thing about CFS touts their research into "everything from AIDS to Autism".

Or as Dorothy Parker described Katharine Hepburn, "the gamut of emotions from A to B."

They may be researching everything from AIDS to Autism, but what about Bacterial Meningitis through Zulu Fever?

At least they’re honest that their expertise is limited to only those diseases beginning with A, and does not include things further down the alphabet, like CFS or fibromyalgia. So maybe they learned something from my complaint that advertising "innovative treatment" was false advertising when they were stuck on a single treatment that had long since been proven totally useless – hardly innovative treatment for CFS, even 20 years ago!

But they’re still running the equally false ad insinuating that their doctors consult a whole university of other experts, "because the last thing [a patient] wants to feel is alone." What I felt under their care was Very Alone. If there was a clinical trial that might help me, that’s how I had to find it: alone. They weren’t going to provide me with one shred of information about diagnosis, prognosis, or the newest treatment. If I wanted any information, I had to find it alone, and if I didn’t feel up to spending hours researching because my health had deteriorated too far under their "care", too bad for me. My doctors didn’t consider it their responsibility to find out what might help me when their favorite treatment failed; they considered their responsibility complete when they scolded me for being an uncooperative patient for stubbornly refusing to improve when given pills for a condition I didn’t even have.

I recently received the following e-mail:

The following link to an article written by Rick Vassar entitled "How Good Are Your Drugs?" was an enlightening article that many patients may be interested in viewing. The link to the article is:

The article was forwarded to me from a nonprofit that seeks to promote the best practices to prevent medical error called Prevent Medical Error.

For better health,

Gail Kansky

President, National CFIDS Foundation, Inc.

Readers Digest this month had an article about medical errors with some frightening statistics about their frequency. want to prevent any other family from losing a loved one to medical error. But there are other types of medical errors besides those that result in death. Some of us are sentenced to a "living death" because of medical errors that didn’t kill us but nonetheless forever changed our lives.

The more people who speak out against medical errors, the more likely steps will be taken to avoid medical errors in the future. As long as doctors are human, there will be medical errors, but there are ways to reduce the number. Listen to what the patient says; don’t substitute what you "think" she meant. Don’t diagnose by stereotype. If you don’t believe the patient, verify with other sources – the doctors who thought I just didn’t want to work would’ve learned otherwise if they’d talked to my bosses. If what the patient said didn’t make sense, ask questions to clarify – don’t just turn things around in your head till you come up with a timeline that makes sense. If the patient isn’t improving with the treatment you’re giving, figure out a new diagnosis or a new treatment – if that requires listening to what the patient suggests or spending a little time researching, swallow your pride and admit you don’t know everything.

Unfortunately, CFS/fibromyalgia patients are likely to be affected by medical errors. Doctors aren’t clear how to diagnose them, so people who have CFS/fibro are told "it’s all in your head" and people who don’t wind up with the diagnosis because the doctor knows just enough about the diagnostic criteria to be dangerous. Patients are told "there’s nothing we can do for you" – there are things they can do, what they can’t do is give you a single pill to cure all your symptoms. Doctors give out standardized medical advice "exercise your way back to health" without being aware that a CFS patient who exercises may wind up permanently disabled, or try to fix a severe sleep problem with simple solutions like "regular bedtime and wake time", without understanding that some cases of insomnia are rooted in pain or biochemistry – if it started while the patient was employed and observing a strict schedule, it’s not going to be solved with a strict sleep schedule.


May 12th is International Awareness Day for CFIDS/ME/CFS and is observed with
various activities around the world. The date was chosen to memorialize the
birth date of Florence Nightingale who inspired the founding of the
international Red Cross while bedridden and suffering from a neurological condition
similar to CFIDS/ME.

Please write your elected officials, and enclose the Request for Congressional Action prepared by a committee of patients:

Thank you!

Dr. Peterson once felt that the solution to CFS lay in science, but now believes that the solution lays in politics.  Only by making Congress aware of the problems can we hope for the problems to be solved. 

Tuesday, May 8, 2007

Michael J. Fox Speaks Out for Research

Speaking at a biotechnology conference yesterday, Michael J. Fox mentioned that one of the drugs he takes for his Parkinson’s has been around since he was 5. He’s amazed that they haven’t come up with anything newer and better in 40 years.

I am equally amazed that in the 50-60 years since the polio epidemics, no one has come up with any drug that helps the fatigue and muscle weakness of polio (which is identical to the fatigue and muscle weakness of CFS). With 2 million polio survivors and 1 million CFS patients in the US alone, there would be a big market for something that would help with the exhaustion and paralytic muscle weakness that characterize both conditions.

The problem is that science didn’t notice that just because the polio virus was under control in terms of new infections, that did not mean there was a cure for those who had already been afflicted. You won’t find what you’re not looking for.

Fox asked "Who's funding innovation today?" At least in terms of CFS research, the answer has always been that most research funding has come from patients. Fox’s foundation funds research into therapies for Parkinson’s. There are plenty of other diseases where patients are scraping together a few dollars from their below-poverty-level disability checks to fund desperately-needed research, while Big Pharma focuses their attention on such ridiculous things as the anti-depressant for dogs that Fox joked about, or turning normal traits like shyness into medical disorders requiring lifelong daily medication, rather than the very real needs of people who are disabled by diseases without a treatment.

Fox criticized them for not putting enough emphasis on risk-taking which could lead to therapies for 20,000 of the world’s 30,000 identified diseases. Now, I will tell you that I’ve learned from college buddies who work in the industry that it takes a lot of work to come up with a new drug, so on one level, the industry doesn’t like to take those expensive risks, but I can also tell you that when SARS hit the radar, CDC announced in just 8 days that a "cure" had been found for it. SARS got a lot of publicity, but was never the epidemic that CFS or polio were.

By contrast, twenty years after I got CFS, they’re still telling me that the best they can do is give me a generic pill for sleep and a generic pill for pain, and a generic pill for every other symptom, each of which has their own set of side effects, which can be disabling in themselves, especially in combination. For example, taking the pain pill so I can sleep along with the allergy pill so I can breathe puts me to sleep for most of the next 24 hours, and in the few hours I’m awake, I can’t think clearly, which means that I can’t work. If you had to choose between sleeping and breathing, which would you choose? It’s a choice I make every night.

Fox criticized "it’s not about the money you spend, it's about spending the money more effectively," and suggested they focus less on getting headlines and huge profits and more on the effect they have on patients’ lives. Just talking about CFS patients, we cost the US economy between $9 and $25 billion a year in lost productivity, and the majority of us who are disabled have been unable to get Disability benefits because of false assumptions that CFS can be faked or (as I was told by a judge) that I could return to work if I’d get counseling for depression. (Depression which the judge’s own psych expert said I don’t have.)

It would be a real blessing both to the patients and to the economy to get us back to full-time work, but there doesn’t seem to be any interest by anyone in doing anything to get us back to work other than bullying. But telling someone to go back to work after they’ve been told by employers that they are too disabled to work is not a long-term solution – you lie your way into a few more jobs and get fired a few more times when it becomes obvious to yet another employer that you’re too disabled to work. Eventually, your reputation precedes you and you can’t get a job at all.

The fact that I’ve started my own business proves that I don’t need someone ordering me to return to work ... I need someone to make it possible for me to work more than 6-10 hours a week. When I tried12 hours in one week, that was enough to put me back in bed for the rest of the month.

This is common for most disabled CFS patients – the problem isn’t that they don’t want to work, the problem is that they can’t work enough hours to be employable. I’m told State VocRehab won’t bother with someone who can only work 1-2 hours a day, nor someone who needs excessive sick days, both of which are typical for CFS patients. If you have a close friend or relative who owns a business, they may be willing to create a job for an hour a day, but a lot of us aren’t in that position; the people I know in this town are either retired or employees or disabled themselves. I wracked my brain and the only business owner I could think of was the one who fired me and wasn’t going to take me back knowing that I was now even more disabled.

My symptoms are not unusual. In the US alone, they’re shared by a million other CFS patients, 2 million polio survivors, and 400,000 MS patients. That’s a good-sized market for any pill they might come up with to treat the combination of symptoms.

But if no one is looking for a treatment for these things, which normally fly under the media radar, I can assure you of one thing with absolute certainty: 20 years from now, CFS patients are still going to be without a treatment that can get them back to work. And, unlike anti-depressants for dogs, that’s no laughing matter.

Monday, May 7, 2007

What do Polio and CFS have in common?

Margaret Williams writes:


Prestigious papers, for example, Annals of the New York Academy of Sciences 1995 (containing 50 papers on clinical neurology, neuroscience, electrophysiology, brain imaging, histology, virology, immunology, epidemiology, with contributors from the US, Australia, Canada, France, Sweden and the UK) point out the similarities between post-polio syndrome and ME/CFS, notably that the mechanism of the extreme fatigue (called "visceral exhaustion") --is exactly the same in ME/CFS as in PPS.

Dr. Richard Bruno writes:

Post-Polio Sequelae Awareness:

In taking about polio vaccination, it should not be forgotten, as it was 50 years ago, that there are still nearly two million North Americans alive today who had polio during the epidemics of the 1940's, 50's and early 60's. At least 70 percent of paralytic polio survivors and 40 percent of nonparalytic polio survivors are developing Post-Polio Sequelae, unexpected and often disabling symptoms that occur about 35 years after the poliovirus attack, including overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing.

Unfortunately, polio survivors and health professionals are not aware that PPS exist and are readily treated by reducing physical overexertion, "conserving to preserve" polio survivors' remaining poliovirus-damaged neurons, and not by exercising and the "use it or lose it" treatment polio survivors received 50 years ago. Polio survivors and health professionals need to be aware of the cause and treatment of PPS.

* * *

As hard as it may be for those of us now alive to believe, polio is another illness that was once attributed to psychological causes, until someone discovered the virus that causes it, and doctors had to change their thinking to meet the changed science.

Dr. Bruno's book about post-polio suggests that CFS patients had either a mild case of polio or some variant virus that the standard polio vaccine doesn't protect against.  He notes that many of the CFS epidemics occurred alongside polio epidemics.  Although my generation did have the polio vaccine in early childhood, we know from the flu vaccine that the vaccine that protects against 123A does not protect against 123B, nor against 122 or 124.  What's to say that my virus two decades ago was not some variant of the polio virus?  Due to the assumption that polio has been eradicated in the US, no one has ever tested me for the polio virus.

When a CFS patient reports paralytic muscle weakness, as many of us do, they are accused of faking.  There are some insider reports that when Sophia Mirza was hospitalized, she asked for a drink of water and was told that if she was thirsty enough, she'd get out of bed and get it herself, as if this were "hysterical paralysis" and not the paralytic muscle weakness which has been documented by researchers who used a full range of advanced neurological tests to measure muscle function.

Tough love has its place, but it's not in the "treatment" of post-viral paralysis.

A dear friend who was a polio survivor started developing post-polio in the 1980s (precisely as Dr. Bruno notes, about 35 years after she had polio).  The determination was that she had been overusing the healthy muscles in her arms since her legs ceased to function, and that continuing to overuse them in propelling her wheelchair would eventually leave her arms paralyzed, too.  She was switched to a motorized wheelchair to save her remaining muscle strength.

So, it was absolutely no surprise to me when about 20 years later, I found myself in the same situation -- the more I used my hands during the day (typing, knitting, holding myself upright to walk), the weaker my arm muscles were by the end of the day; some days, if I kept busy all day, I was unable to lift the weight of a full fork to my mouth at dinner.  I recognized it as the same thing Sheila had experienced.  The recommendation she received, to preserve her remaining muscle strength through increased rest worked for my hands/arms, too.  If I limit myself to typing about 30 minutes at a time, and then rest my hands for several hours, I can use my hands later in the day.  If I decide to type for an hour or two straight, I can count on needing two hands to lift my glass of water that afternoon, and three will probably leave my hands totally useless the rest of the day.  (The reason I cannot go back to work in any sort of clerical position.)

Yet, even though the medical profession recognizes these symptoms in post-polio as being very real manifestations of a neurological problem, those same symptoms in CFS are still being dismissed as "impossible" and "imaginary".  Telling some people that the symptoms of CFS are almost identical to those of MS or post-polio results in hitting a mental roadblock; they've already made up their minds that CFS is a purely psychological problem and cannot shift gears to process its similarities to accepted neurological conditions.