CFS/FIBROMYALGIA AWARENESS DAY MAY 12

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: http://www.co-cure.org/Congressional_Action07.htm

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. 

Tags: CFS, Chronic Fatigue Syndrome, Florence Nightingale, bedridden, neurological, Congress, politics, Dan Peterson

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.

Tags: biotechnology, innovation, CFS, polio, MS, Michael J. Fox, Parkinson's, Chronic Fatigue Syndrome, pills, medication, research, funding

What do Polio and CFS have in common?

Margaret Williams writes:

OVERLAP OF ME/CFS WITH POST POLIO SYNDROME

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.   

 

Tags: CFS, polio, post polio, Chronic Fatigue Syndrome, neurological, psychological, MS, Richard Bruno, paralysis, paralytic, muscle weakness

CFS/ME AWARENESS MONTH

Thanks to LKW for passing this along:

ME AWARENESS MONTH 2007

Below is a plain text version of the IiME (Invest in ME) Flyer, on their site at: http://investinme.org/IIME%20Newsletter%20Oct%2006.htm

Their May 1 & 2, 2007 International ME Conference has just ended and no doubt will produce copious amounts of press releases and reports for all of us to read, also, as an illustrious group of the best researchers and advocates filled the roster. I applaud all of the massive efforts required to make this happen.

~~~

And I continue to ask:

Why does the the USA have no planned ME Awareness activities?

Why does it not recognise ME? (G93.3, ICD10)

Why does it do NO ME research?

Why does it ignore those of us so horribly ill with such a debilitating neurogenic illness?

LKW

~~~~~

ME AWARENESS MONTH 2007

A national campaign throughout the UK aimed at raising awareness of the neurological illness Myalgic Encephalomyelitis (M.E.) and publicizing events to raise funds for biomedical research into ME. Myalgic Encephalomyelitis (M.E.) is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). With at least 250,000 sufferers of ME in the UK alone, many of them children, ME is estimated (by parliamentary EDM 260) as costing the UK economy £3.5 billion per year and the true figure may be even greater.

No public funding of biomedical research is currently taking place in the UK so biomedical research projects are funded solely by the work of ME support groups and individuals. At present there is no medical diagnostic test for ME and no known specific treatment or cure.

Despite the impression often given by the press and psychological professionals, ME is not a psychological illness; psychological investigations (which have had the lion's share of research funding in the past) cannot uncover its cause and psychological therapies cannot provide a cure.

The varying symptoms experienced by many severe ME sufferers may include: visual problems, vocal/muscular limitations, general chronic weakness of limbs, cognitive problems such as memory loss & concentration difficulties, problems with balance and fine motor control, muscle pain, malaise, hypersensitivity, sleep & temperature disturbance, cardiovascular symptoms, digestive disturbances, neurological disturbances. ME is a multi-system illness and requires investment in biomedical research to provide treatment and a cure.

The recent case of Sophia Mirza, who died from ME, shows the urgency of funding research into treatments and in finding a cure. ME is five times more prevalent in the UK than HIV/AIDS.

During May 2007 events up and down the country will raise awareness of ME. Two ME charities - ME Research UK and Invest in ME are joining forces to arrange and publicise conferences and Have a Cuppa events for ME Awareness Month 2007.

On 1st-2nd May 2007 Invest in ME will be hosting the second IiME International ME Conference in London. ME Research UK will be hosting their conference in Edinburgh on 25th May 2007.

Other events around the world will be announced in the months leading up to May 2007 - with ME Awareness Day (12th May) being the focal point for the month.

Our aims are:

1. Funding research: With no public funding of biomedical research into ME we are hoping to attract more funding for research activities coordinated by ME Research UK. We hope that the government will recognize the high-quality research being carried out by scientists being funded by ME Research UK.

2. Raising awareness: ME needs more awareness from the public, politicians and healthcare staff. It is now the leading cause for long term absence from school. ME Awareness Month will be an opportunity to raise the profile of ME and allow more knowledge about the illness to be provided.

3. Providing a voice: 25% of people diagnosed with ME are severely affected - house-bound, often bed-bound, left with little help from the medical community, often made to struggle to obtain benefits and left to an uncertain and debilitating future.

* * *

The answer to LKW's questions about why the US takes the stance it does can all be traced back to decisions made early on:

"On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine." Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, Katrina Berne, Ph.D., page 10

To now admit that they were wrong is something that a government agency will never do.

We saw this last year when, in the lead-up to Awareness Month, CDC announced that they had found biological proof of CFS, and immediately, almost with the same breath, tried to explain away this biology with psychology.

My problems started with a 105 fever.  While it may be possible to psychosomatic a 99 fever, I doubt there is anyone, even the greatest guru of mind/body control, who can psychosomatic all the way up to 105.  I knew 20 years ago that the problem was a virus; CDC still refuses to accept that.  They populate their studies with patients with psych-based fatigue and then cannot find the post-viral changes that would differentiate those of us with viral onset from people with depression.

Ken Fujioka, M.D. of the respected Scripps Clinic in San Diego says: "For a long time, we've known that viruses can get into your DNA and reprogram your body."  Dr. Fujioka knows that.  Patients know that.  CDC seems to have great difficulty accepting that.  To the great detriment of a million patients in the US alone, who get sicker from lack of treatment.

A fellow patient has observed that CDC does not listen to the patients -- CDC tells *us* what our symptoms are, and if we say that our experience is different, then *we* must be wrong.  The best source of information is first-hand from the person who actually had the experience.  But when we respond to CDC's description of that which they currently choose to call CFS with "I don't know what they have, but it isn't what I have", our own experience with ME/CFS is pooh-poohed so they can continue to espouse their psychological biases. 

I've experienced it myself.  When I tried to explain to a doctor that my problems started in mid-February 1987 with a high fever, I was informed in no uncertain terms that I was mistaken.  This doctor who had never met me before, didn't know what my health had been prior to February, didn't bother to ask me any questions about my emotions, knew better than I did that I didn't have a virus, I had psychological problems related to my marital state.  According to him, I never had a virus.  He didn't have to explain the first-hand observations of the person who cared for me during the virus, other than to point out that he was the doctor and therefore he knew best, and that those of us who had what he didn't -- first-hand observations -- were mistaken because we were not doctors.

He refused to accept the opinion of a Professor of Counseling that I lacked the emotional component required for a psych diagnosis, that the "symptoms of depression" he noted were actually the symptoms you'd expect of someone with the flu.  If he would not admit to a mistake in the privacy of his own office, then what are the odds of CDC making a public admission of error?

Tags: CFS, virus, misdiagnosis, CFS/ME, ME/CFS, symptoms, neurogenic

Dead from Misdiagnosis

Thanks to Lara for pointing out this one:

Now dead at the age of twenty-four and suffering terribly
since the age of twelve, young Australian Jenny Hill had
been through the medical mill since being labelled with the
ME/CFS wastepaper basket diagnosis that had done her health
prospects overwhelming and catastrophic damage.
In an excerpt delivered at her funeral service, Jenny Hill
wrote in 1998:

"I am 17 and I have had chronic fatigue syndrome for almost
6 years. Along with thousands of other children, teenagers
and adults I live in a world of pain, unimaginable fatigue,
paralysis and intermittent Alzheimer's. Despite medical
technology we are still a long way from answers concerning
the cause, the duration or the prognosis. It is one of the
cruellest and debilitating illnesses one could imagine. It
can last from one year, to proving fatal. At the same time
some doctors don't even recognise chronic fatigue syndrome
as a disease, but rather a mental state. It is not much
wonder sufferers become depressed when they see the whole
world passing them by. Life is going on without them. It
is like trying to catch an escalator that is just beyond
your reach."

A simple label to append and an easy box to tick that
generates phenomenal income for the psychiatric lobby,
countless hundreds of thousands - if not millions - of
patients worldwide have also been erroneously labelled
with the catch all wastepaper basket diagnosis of ME/CFS.
Jenny had in fact been suffering from MNGIE (mitochondrial
neurogastrointestinal encephalopathy).

Chris Hunter from the Alison Hunter Memorial Foundation
(http://www.ahmf.org/) writes: "In 2004, two weeks before
Jenny died, the diagnosis of mitochondrial neurogastrointestinal
encephalomyopathy (MINGIE) was confirmed. At the 2005
ME/CFS Research Forum, University of Adelaide, convened
by AHMF, Dr John Duley Senior Scientist, Chemical Pathology
discussed MINGIE in his presentation 'Diagnosis of
mitochondrial and metabolic disorders relevant to ME/CFS'
(http://tinyurl.com/24qsj5).

After Jenny's death and on 5 April 2007, Julie Robotham
published an article on Jenny's case in the Sydney Morning
Herald entitled 'Fight against the unknown'
(http://tinyurl.com/2ben5t). We quote extracts from
this article:

"Jenny first got sick in 1992, aged 12. A bout of flu
progressed into headaches and exceptional tiredness, and
by the next year, with no resolution in sight, she was
referred to a psychiatrist. Three years later a leading
immunologist still thought she was having trouble re-entering
normal life after being knocked around by a virus. He
prescribed gradually increasing exercise - a controversial
therapy for people with presumed chronic fatigue syndrome -
and a self-help book."

"...Jenny frequently felt unsupported and misunderstood,
even occasionally viewed with suspicion as the girl with
no good excuse to be sick."

"All you have is this awkward feeling this girl doesn't
fit in the hole people are trying to put her in,"

".. once the patient is labelled with a [psychiatric]
disorder, it's very hard to reject that diagnosis."

"To admit error, to backtrack from a dead-end, requires
humility and mental fortitude, especially if a patient
is displeased."

"Diseases don't read textbooks."

"Those who coast along on knowledge even a year or two
old risk missing a diagnosis that newer research might
have illuminated."

"It is an argument.....for regular, formal reaccreditation
of doctors."

> > Read the full text of the Sydney Morning Herald
article here http://tinyurl.com/2ben5t > >

Tags: CFS, misdiagnosis, research, death

Do we really need more SSDI judges?

In the last couple of days, both the NY Times and the Washington Post have addressed the backlog in the SSDI system and the need for more judges.  730,000 applicants are still waiting to get the benefits they need and deserve.

If the judges they currently have would stop playing games with applicants, they could process more files. My application has been appealed and re-appealed and re-re-appealed since 2000. In the time that it has taken for them to keep turning down someone who even their own VocRehab expert says cannot work, they could have processed several additional applicants and worked through the backlog.

But I’ve heard from several people inside the system that benefits don’t necessarily go to the sickest, but to the most persistent. The sickest tend to miss deadlines or give up because they don’t need the stress. (This is why I turned mine over to a lawyer – she’s healthy, so she won’t miss a deadline, and the only stress I have from the process is the financial stress of not having a reliable income for the past 7 years.)

This is something our elected officials have to hear about: how much time and money is wasted by the system in playing these head games with legitimately disabled applicants. From my very first hearing, SSDI’s own VocRehab experts have repeatedly said I cannot work, and each time, the judge has chosen to ignore his own expert.

The fastest and easiest way to clear up that 3/4 million person backlog is to assign some clerical employees to review the files with one goal in mind: if there is a doctor's report or a VocRehab expert saying the person cannot work, then the payments should be automatically approved, on a wholly objective basis.  No room for the judge's opinion that CFS/fibro patients are not as deserving as someone with a different diagnosis.

The amount of money that has been wasted on judges, experts, and government lawyers to keep hearing the same testimony in my case would have paid my benefits for a few years.  Where's the outrage over this government waste?

Tags: SSDI, disability, judge, Congress

Fog is not an Illusion

http://www.nytimes.com/2007/04/29/health/29chemo.html?th&emc=th

Many CFS/fibro patients complain about mental fogginess, and this has been brushed off in the same way as their illness is brushed off.

Apparently, cancer patients have the same problem, and are also brushed off by doctors when they complain about it.

According to this NY Times article "approaching a doctor does not guarantee help. Susan Mitchell, 48, who does freelance research on economic trends, complained to her oncologist in Jackson, Miss., that her income had been halved since her breast cancer treatment last year because everything took longer for her to accomplish.

She said his reply was a shrug.

“They see their job as keeping us alive, and we appreciate that,” Ms. Mitchell said. “But it’s like everything else is a luxury.”

Another patient described getting sidetracked from one chore with another, “I have an almost childlike inability to follow through on anything,” Ms. Lowen said.  Again, something very familiar to most CFS/fibro patients. 

Being able to think may seem like a "luxury" to doctors who are focused on life or death, but it's not a luxury to a patient who has repeatedly been told by a Disability Judge "you look healthy, go back to work".  If you cannot stay on-task, you can't work.  If you cannot remember what you're supposed to be doing, you can't work.  Even menial manual labor requires a few functioning brain cells so you can learn the simple repetitive task; for a fogged-in patient who cannot even remember what to do with the toothbrush that she's used every day for decades, it's asking too much to remember how to do something she's just been taught. 

The doctor may think he's succeeded by keeping you alive, but not if you wind up dead of exposure or starvation because you cannot work to pay for rent and food and are denied Disability benefits because the judge cannot "see" the fog that prevents you from working.

You'll hear CFS patients struggling to remember their own names.  My parents have lived in the same house my entire life ... at my worst, I had to look up their address because I couldn't remember it.  Yet when I did poorly on a memory test in the Mental Status Exam, it was written off as inaccurate becausethe evaluator could not believe that this score could be legitimate.  #1, he didn't know that this was precisely what the tests should show for a CFS patient in severe relapse, and #2, he didn't realize that I was thrilled to have remembered even the few things that I got right.

Dr. Sheila Bastien, who has examined many CFS patients, found CFS fog to be "worse than traumatic brain injury" cases in litigation.  So there is proof that it's there, but like so many other things about CFS/fibro, there are also people who don't want to acknowledge it as truth no matter how much proof exists, because this would force them to challenge their beliefs about CFS/fibro.

Tags: CFS, fibromyalgia, fog, memory, chemotherapy