Saturday, May 5, 2007

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?

Wednesday, May 2, 2007

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 > >

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?

Tuesday, May 1, 2007

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.