Saturday, May 23, 2009

Federal Bailout Funds to Save Jobs?

How about Federal funds to CREATE jobs?
Once upon a time, before the Industrial Revolution, many families ran their own businesses. The concept of a small number of companies employing vast numbers of people is relatively new in human history.
The little people like you and me are being asked to contribute our taxes to bail out large companies whose employees earn a lot more than we do.
Here's a new concept: take one or two of those billions and put it where it would do more good -- in direct aid to the disabled. No strings attached assistance to start their own businesses. About 25 years ago, I tried applying for an SBA loan to upgrade my typing business to a word processing business, and was refused because I didn't own a home I could put up as collateral, and couldn't put up half the money myself. I have no idea if the SBA rules have changed since then, but let's face it, most long-term disabled people have no assets left, so any policy that requires them to have collateral and cash isn't going to help them.
I happened to be fortunate that when I lost my job due to my symptoms I had tens of thousands of unused credit limit. I could afford to buy my own computer and advertising. But I know a lot of disabled people who can't even afford to eat 3 meals a day; they certainly can't afford the extra expense of setting up a business.
No one would hire me when I revealed there were days I was going to have to work at home due to my symptoms. There was no reason I couldn't work when able, but the courts say that "work when able" is not an accommodation I can demand under ADA, so I couldn't sue anyone to force them to give me a job. If I wanted to work, I was going to have to employ myself.
And the same is true of many other disabled people -- they want to work, but no one will hire them.
Instead of bailing out multi-millionaires who've proven themselves poor stewards of the businesses entrusted to them, who give themselves huge bonuses for running their businesses into the ground, how about using that money to help poor people who are driven to succeed? If you can earn a mere $900 a month (less than full-time minimum wage), you're off disability benefits -- that alone should please the conservatives who want people to stand on their own two feet so the government can do away with all social programs.
But trying to get more money poured into self-employment programs for the poor and disabled is not as easy as getting billions to reward influential people who have friends in Congress. There are always excuses: we can't give people computers and internet service because they're just going to spend the day playing games and looking at porn. Or the classic one that I was asked when I proposed to a potential employer that I be allowed to work at home "how do we know you're working as many hours as we're paying you for?" Obviously, if it becomes apparent that the recipient is not doing anything to produce income, you take back the computer.
As the saying goes, it's hard to pull yourself up by your bootstraps when you're barefoot. Let's stop focusing bailout attempts on the well-heeled and do something to help those who have no shoes. Overall, it'll cost less and by taking people off SSDI and getting them back to work, produce a bigger benefit to the economy.

Jesus Was A Liberal Button

Friday, May 22, 2009

More on Fraud

They are now investigating several cases of In Home Support Services fraud. IHSS provides the necessary help to keep people at home instead of in a nursing home, and as such, saves the government a lot of money – nursing homes cost upward of $3000 a month.
There is a maximum amount of time per pay period that your assistant is allowed to claim they have worked. Since most of these assistants are family members who have had to give up "real jobs" in order to care for their loved one, many of them work far more hours than they are paid for. This is not pleasant work, folks – it's wiping a paraplegic's nose, cleaning up a dementia patient's urine and feces, changing dressings on open wounds, lifting feeble patients from bed to wheelchair to toilet. Stuff that you wouldn't do if I offered you a mere $10 an hour.
Here's the kicker ... these cases of fraud are only $1000 to $6000. There's not a doctor out there accused of committing Medicare/Medicaid fraud who's done it in such a minimal amount. Yet the letters to the editor and reader comments on the website are particularly venomous about the people committing this sort of fraud, more so than with the article the other day about medical practitioners committing fraud, accusing these poor women of being criminals and societal leeches for providing necessary services, backbreaking work.
Let's repeat this concept: medical practitioners are committing government fraud in the Billions. A few impoverished families who rely on IHSS wages to put food on the table took an extra thousand or so. Am I the only person who considers it a bigger deal to stop the exponentially bigger problem of $60B Medicare fraud than this much smaller problem of a few thousand in IHSS fraud? Am I the only one who considers a doctor who enriched himself to the tune of a million bucks to be a bigger criminal than a poor woman who put in for an extra grand?
More than likely, in March she provided more hours of care than she was paid for, and in April made a claim for the extra hours she worked in March. Put her in jail and the taxpayers not only have to pay $3000 a month to put her in jail, but another $3000 a month to put her loved one in a nursing home because there's no one to care for him. It'll cost us far more to punish her (and give her a well-deserved vacation from 24/7 caregiving) than the fraud she's accused of.
I'm not saying I condone fraud, I'm saying that in this era of limited government resources, let's stop wasting big bucks investigating some little old lady who got an extra $1000 for caring for her disabled son, an investigation and trial that will cost the taxpayer far more than the amount of fraud she's accused of. Let's focus on the bigger fish: the billions in Medicare/Medicaid fraud perpetrated by medical providers, the billions (or trillions) in overcharges by the military-industrial complex, the things where the government can make a profit by getting their money back (which won't happen with a poor family with no assets).
Stop beating up on the poor and disabled, and aim instead at the more expensive (and extensive) fraud at the other end of the economic spectrum. It exists, and should be punished far more severely than a small amount of extra payment to a woman who's doing a job that most people wouldn't want to do at any price.
N.B. To get IHSS, you must have either been declared disabled by a judge or be over a certain age. This is not something where your doctor just signs a form and you're automatically entitled. We, as taxpayers, are guaranteed that the people who are receiving services are either officially disabled or officially elderly. I had, at one point, been told that I just needed to get the doctor to write a note that I needed household help, but Social Services told me that there was no program I qualified for -- if I'd been legally ruled to be disabled and collecting SSDI, maybe then the doctor could just write a note, but since I've been denied Disability benefits, there's no program to help me, even though Social Services agrees that I need help. Meanwhile, a doctor can just generate all the fraudulent billings he wants and no one has to rule that he is legally entitled to put in for that extra money.

Dr. Ralph on "Fatigue"

My Comment to the Enlander Blog regarding "fatigue".


http://tinyurl.com/p9rnu6

I am a retired diagnostic radiographer. I became a victim of the word
"fatigue" in 1996 when a rheumatologist decided that the outcome of my
poly-arthralgic pain that caused me significant sleep deprivation was in
fact a description of "fatigue".

I was subsequently diagnosed with post-viral fatigue syndrome.

Eight bedbound years later and a move to a new family doctor and I was
reassessed.

I discovered that I had got an inflammatory process going on all along yet because I was diagnosed with a "fatigue" based condition I didn't get any treatment relevant to my underlying disease.

To functional psychiatry, "fatigue" is caused by a mental health disorder
treatable and curable with CBT and Graded Exercise.

To the rest of medicine "fatigue" is a function of systemic disease.

To patients with ME, "fatigue" is a pure insult of a word and does not even
begin to describe all the symptoms that cause long term debilitation and
suffering.

But what do you do when the Government and the healthcare system of your
country (in relation to CFS/ME) use the psychosomatic meaning of the word
"fatigue"?

This is the way things are both here in the UK and around the world.

I have discovered over the last 15 years of campaigning that "fatigue" is a
medically broken word - a double entendre of a word that has two totally
different meanings.

And now that broken double entendre of a word is being used to name a
medical journal.

If the people behind this journal do not understand that the word "fatigue"
was hijacked 20 years ago and that patients are furious that "fatigue" is
now being further welded to Myalgic Encephalomyelitis by the use of this
word as the title of an ME friendly medical journal then there is in my view
no hope for patients with ME.

You should all be changing the language to accurately describe a disease
instead of leaning on the crutch of a broken word - a medical double
entendre.

You should all be listening to and supporting the knowledgeable patients you
all claim to be interested in helping.

And over these last 20 years all of you should have been confounding the
views of Professor Simon Wessely at every opportunity instead of letting him
and his colleagues own the word "fatigue" in relation to CFS and ME.

Spending the last 20 years turning the other cheek has done absolutely none
of us any good at all.

The word "fatigue" ruined my life and it is ruining many many thousands of
others due to the way this word can be and is being deliberately perverted.

I am now 95% of the way to a re-diagnosis of Behçet's disease - a condition
that has many similarities with Myalgic Encephalomyelitis.

Thankfully, Behçet's disease appears in medical journals with names specific
to neurology, immunology ophthalmology, rheumatology and dermatology
;
journals that cover grown-up areas of symptom causation using unbroken words
or words that medically have no double meanings - double meanings exploited
by functional psychiatry for that precise reason.

Sincerely,

Stephen Ralph DCR(D) Retired. www.meactionuk.org.uk
 
* * *
I had a similar experience. 
 
Because I was divorced, doctors saw no need to search for a physical cause for my pain, and simply handed out useless anti-depressants (some of which made me violently ill).  Years later, a chiropractor took x-rays and found 3 fractured vertebrae.
 
Preliminary to a clinical trial I was trying to get into, I was given a C-Reactive Protein test, which would determine if I had any infection or inflammation.  Again, years after I started to complain of feeling unwell, and having everything attributed to being divorced, I finally had proof that my marital status had nothing to do with it ... the CRP test results were described to me as "off the charts".
 
None of the doctors cared to hear that I had similar symptoms before/during/after marriage.  They just glommed onto the word "divorced" as an excuse for everything and refused to consider any other possibilities.  Now I'll never work again (and I can't get alimony) because the doctors didn't look beyond the easiest answer.  That I was giving them information that proved it was the wrong answer was immaterial to them -- the goal was to get me drugged into submission, not to cure me.

Doctor loses medical license

 Munchausen Syndrome By Proxy Paediatrician David Southall Loses High Court Appeal
Dr David Southall condemned
Controversial paediatrician Dr David Southall has been condemned by the High Court for his "truly shocking" and unjustified accusations that a mother drugged and murdered her son. The scathing criticism came as Mr Justice Blake, sitting in London, upheld a decision of the General Medical Council's (GMC) fitness to practise panel to strike Dr Southall off the medical register for serious professional misconduct.
The Press Association
Related Links:

*
David Southall High Court Appeal Judgement
High Court of Justice, Mr. Justice Blake
 
 

Cognitive Problems in CFS

An investigation into the cognitive deficits associated with chronic
fatigue syndrome.

Journal: Open Neurol J. 2009 Feb 27;3:13-23.

Authors: Thomas M, Smith A.

Affiliation: Centre for Occupational and Health Psychology, School of
Psychology, Cardiff University, UK.

NLM Citation: PMID: 19452031


This study addresses, among other things, the debate as to whether
cognitive deficits do occur with a diagnosis of Chronic Fatigue
Syndrome (CFS). Previous studies have indicated a potential mismatch
between subjective patient ratings of impairment and clinical assessment.

In an attempt to tackle some of the methodological problems faced by
previous research in this field, this study recruited a large sample
of CFS patients where adequate diagnosis had been made and
administered an extensive battery of measures. In doing so this study
was able to replicate previous published evidence of clear cognitive
impairment in this group and demonstrate also that these deficits
occurred independent of psychopathology.

The conclusion drawn is that cognitive impairments can be identified
if appropriate measures are used. Furthermore, the authors have shown
that performance changes in these measures have been used to assess
both efficacy of a treatment regime and rates of recovery.


[Note: This is an Open Access article, the full
content of which is available for free at
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19452031  
 

 

Hillary Johnson: Five More Years

http://oslersweb.com/sb/page.php?ID=74147&post=594304

  OSLERSWEB.COM

  Inside the Labyrinth
  Down (and Out) in Atlanta

  HILLARY JOHNSON

  April 28, 2009

  Tags: CDC Seeks Input, Five More Years?

  Five More years?

  The Centers for Disease Control intends to stay in
  the "CFS" business for another five years in case
  anyone was wondering.

  Yesterday afternoon, on Monday, April 27, the
  agency held a four-hour group therapy session for
  people who have suffered so in the Reeves Era.

  The agency has created a five year strategic plan.
  Yup. Using the Internet, agency staff put out the
  word: they sought "input" on this plan from citizens.
  The notice came suddenly last week. People wanted
  more time to prepare for the event. The agency was
  accommodating, extending its deadline to send in
  comments until May 1, or Thursday. But, swine flu or
  no swine flu, they stuck to their guns on the matter
  of holding the public meeting in Atlanta yesterday.

  As it turned out, the all-afternoon call-in fest was
  remarkable in myriad ways. I hadn't expected to be
  so profoundly affected by it.

  In my long memory, it was the first time I have seen
  agency staff leave themselves quite so vulnerable.
  There was no filter between government staff and
  the public, some members of whom arrived in person
  to participate in the four hour session in Auditorium
  B2 of the CDC's Global Communications Center. One
  couple flew all the way from Texas to make their
  brief comments, for instance; the wife, ill, the
  husband, healthy.

  The agency provided a freebie telephone line for
  everyone else to dial up. Thus, one had the option of
  listening to the proceedings in the comfort of home
  while, say, scanning the front page of the New York
  Times, or to actually participate and hear one's voice
  piped into the auditorium. It was all very high tech
  and nicely worked out.

  The sole ground rule in this entire affair had to do
  with the number of minutes people were given to go
  full tilt at the agency: five. Due to what may have
  been an unexpected short-fall in the number of
  people who chose to participate-thirty-two by my
  count--and the generous four-hour time allowance,
  however, organizers allowed that rule to fall by the
  wayside. Numerous people managed to pop back into
  the proceedings a second time in order to continue
  their original train of thought or make additional
  points. The afternoon unfolded into a luxurious
  expanse of time, in fact, and left the battered
  agency asking, at the end, rather
  masochistically-"Anyone else?"
And in the brief
  moment of silence that followed, one sensed a
  collective feeling of peace, perhaps the first in a
  quarter century. Everyone who wanted to speak their
  mind had been accommodated, whether it was to
  simply "bring home the hurt" caused by CDC policies,
  as one man said, or to plead for the involvement of
  outside scientists, or to demand that Bill Reeves be
  removed ASAP.

  The language coming from the floor and the common
  phone line was often riveting, always thoughtful and,
  for the ensuing four hours, it never really let up.

  CDC staff arranged for a very sweet lady named
  Becky to moderate, no doubt to defang any vitriolic
  detractors. Becky had a lovely "thank you" for
  everyone who called, no matter their disposition or
  rank, no matter how irate their statements.

  I had planned to merely listen, but eventually talk of
  decades of life lost and minds wasted got my blood
  pounding, and I found myself pushing the star key on
  my phone. Presto-magic, I was in the queue and
  then quickly on the line. Given its monstrous history
  in this disease, I said, "The CDC needs to make a
  formal apology to every American citizen with this
  disease, and recuse itself from the further study of
  this disease."
I heard a tiny smattering of applause
  and imagined more than a few rolling their eyes.

  "Thank you," Becky said, sounding a little sad. To
  the tender-hearted Becky, I say, "And thank you!"

  Acting CDC director Richard Besser was busy with
  swine flu on Monday so the agency sent the head of
  the National Center for Zoonotic, Vector-Borne &
  Enteric Diseases, Lonnie King, in his stead. King is a
  veterinarian and, more interestingly, the boss of Bill
  Reeves. Also present was Stephen Monroe, who
  heads the division of viral and rickettsial diseases.
  For those of a sentimental bent, Monroe's division
  was the long-ago workplace of Gary Holmes--of the
  famous "Holmes" criteria of '88. It was also the
  workplace of Keiji Fukuda--of the famous "Fukuda"
  criteria of '94.

  Fukuda is now the deputy general director of the
  World Health Organization. Who says "CFS" ruins
  careers?

  The afternoon began with a rather superfluous if
  breathless update on the state of the swine flu
  outbreak. CDC staff have been preparing quite
  literally for years for such a flu pandemic and should
  cases in the U.S. become either more virulent or
  common, it's one public health crisis where the
  agency might actually score a win, something it
  badly needs in these days of unruly U.S. senators
  making inquiries into the CDC's spending sprees and
  slamming even its ability to prevent and control
  disease.

  Apparently, I wasn't the only one who found irony in
  the flu update.

  "You have declared swine flu a public health
  emergency. With four million cases of CFS, what
  does it take to have it declared a public emergency?"
  was Kim McCleary's surprising zinger.
Go Kim!

  Lonnie King began his welcome patter by noting that
  two years ago, a CDC staffer had written an account
  of her "CFS" for an in-house publication, an account
  that he seemed to have found heart wrenching.

  "One of our CDC employees came forward," King
  began somberly.

  He certainly got the diction right, since we all know
  admitting to having "CFS" is analogous to coming out
  of the closet
, and many who care about their
  reputations and their livelihoods, if they are lucky
  enough to have either, will prefer to stay in. As a
  patient in the auditorium noted eventually, "Having
  CFS is like having AIDS in the 1980s. You don't want
  to tell anyone. There's an immediate response that
  you're psychologically unbalanced."

  And what federal agency, far, far away from the
  Capitol and way down in Atlanta, Georgia may have
  played a role in that phenomenon?

  At King's mention of a CDC staffer-one of their
  own!-spelling out in black and white the nature of
  her suffering for agency scientists to read, I was
  reminded of my visits to the CDC in the late 1980s. I
  discovered then that literally hundreds of letters
  from people with "CFS" were pouring into the agency
  by the day. These letters collected in boxes in
  corridors like so much trash before they were thrown
  out. Some of them were ten or more pages long,
  handwritten on legal pads. They read like small
  novels.

  And the letters were complemented by frantic,
  terrified phone calls from patients that came in
  'round the clock. I met a secretary at the agency
  whose job description included wrangling a telephone
  answering machine that collected these phone calls
  that poured in overnight. I was incredulous, but she
  insisted that at least one-hundred or more calls
  came in during the wee hours-every night. "These
  people stay up late," she added. And that was
  twenty years ago.

  So, Dr. King, I say, Cry your crocodile tears of sympathy, but unless you somehow discovered a mere two years ago that this disease is a nightmare, I remain unconvinced.

  Very quickly, agency honchos sat down to listen and
  the real business of the afternoon began.

  Immunologist Nancy Klimas complained about the
  fuzzy strategic plan, which had exactly four
  points-things like "laboratory research" and
  "Educational Intervention Research."

  If there were themes during the afternoon, this was
  one of them: zero details.

  "Three of these [four] don't look like research goals,"
  said McClearly, who seems to have morphed into
  Robocop in the last few months. I like the new vibe.

  "Your outline-it's so devoid of specifics," added
  Jennifer Spotila, a colleague of McCleary's. "What is
  the priority order? What funding has been identified?
  What are the milestones for performance? How will
  you engage extramural researchers? How exactly do
  you propose to develop an international consensus
  on CFS? I could go on-your outline could have been
  written two years ago-or ten."

  And to that, I'll add twenty.

  Marly Silverman of Pandora offered one of the most
  jam-packed and specific counters to the agency's de
  minimus five year plan, proposing that the SSA
  develop a mechanism to track denial and approval
  rates for "CFS" claims, for instance, and that the CDC
  "enhance the program of medical providers [doctors,
  for the rest of us] to include specialists in neurology,
  endocrinology, dentistry, mitochondrial disease,"
and
  more. "We see flaws in studies of defined
  populations," Silverman hammered away. "[Create]
  provider-based patient registries, with online patient
  self-reporting. Cross reference it with patient medical
  providers.Send CDC teams to patient providers. We
  also suggest visiting these patients at home. The
  most difficult cases of CFS-these patients are
  bedbound and homebound."

  Ahh-great suggestions--even if Pandora may be too
  generously crediting CDC staff with the ability to
  diagnose a case. But, while floating in the Blue Sky
  reality offered by the Centers for Disease Control,
  why not ask for the moon? Go for it.

  Another theme, no surprise, was suffering.

  "I've already lost my twenties-I don't want to lose
  my thirties," said the young woman from Texas.

  Said her husband, "You will be saving marriages"--if
  agency scientists could find a cure.

  Another woman took up the cry: "There is an urgency
  to this matter. I have lost my thirties, my forties and
  my fifties-I don't want to lose my sixties.My
  daughter has this disease. If my seven year old
  grandson gets this, my heart will break into a
  thousand pieces.There are many people out there
  holding on day by day."

  To which one can only say, Amen, sister.

  "In the past, CDC has ignored us, lied to us-I just
  want to really bring home the hurt," said one caller
  who spoke in a halting, choked voice. "I remember a
  couple of years into it. I was in my car, writing a
  suicide note. I only didn't do it because I thought
  about my kids." After which, there was silence while
  he composed himself. "I want you to think long and
  hard." he added.

  "Thank you," Becky said after waiting a decent
  interval.

  Not surprisingly, over the course of the afternoon the
  tone moved from sophisticated criticsm, to hurt and,
  eventually, to barely suppressed rage. If CDC had
  any motives other than to solicit "input" on their
  slap-dash five year plan, then allowing the steam to
  rush out of the pressure cooker must have been
  among them, and that is what happened.

  From the even-tempered, watchful Craig Maupin, who
  misses nothing: "Reeves has worked diligently with
  the military on stress research. His passion for stress
  research is commendable. He should follow his
  passion."


  And this from a veteran of the disease: "For twenty
  years I have had chronic EBV, chronic mycoplasma,
  and chronic HHV6. CDC has consistently failed to find
  HHV6 in CFS. Meanwhile, the CDC has recognized the
  swine flu outbreak and is working on it in a matter of
  days.

  "CFS is an infectious illness," the speaker contined.
  "The CDC has watered down the definition so that it
  bears no relationship to the disease. The agency
  should model its research after the
  Whittemore-Peterson Institute in Nevada. "[Instead]
  it's calling people in Georgia twenty years later to ask them if they're tired. You are wasting taxpayer dollars. Adopt the Canadian definition, adopt the WPI methods, including viral research, and stop characterizing CFS as a psychological disorder."

  And another old-timer: "We have been terrorized by
  this illness, but no one seems to care that much.
  We've experienced foreclosures way before the
  normal population has. We can't work, we can't play.
  We've lost our identities-it's devastated every area
  of our lives. We need our doctors, our neighbors, to
  know we're not lazy or crazy. Maybe until the CDC
  can find solutions, they can at least educate."

  If only!

  And from seemingly out of nowhere emerged Dr. Fred
  Volinksy on dial up, an authoritative person with an
  exhilarating attitude who called in once, and then
  again, the second time demanding the firing of
  Reeves.

  "We want new leadership for this program!" he said.
  "Twenty years without any progress! You have at
  least one to two million patients with CFS-and no
  money!..I'll be absolutely disgusted if we have the
  same leadership here," Volinsky continued. "I need to know which senate committee has oversight over the CDC."

  Becky was put off her stride. "Are you through Mr. 
  Volinksy?" she asked after a minute in her
  honey-toned voice.

  "No! I'll never be through!" Volinksy replied. "This is
  an example of the whistle blower law being used in a
  very unethical way," he said in a reference to Reeves'
  invocation of the Federal Whistle Blower Act.

  You'll recall that after the news was everywhere and
  about to break in the Washington Post in 1988,
  Reeves stepped forward and began spilling his guts
  about the CFS slush fund. That was almost two years
  after I broke the same story in Osler's Web, but
  who's counting? The point of the Act is to encourage
  ethical conduct in government. Volinsky was implying
  the obvious: Reeves used the Act to hang on to his
  job.

  For the record, the Senate and House subcommittees
  that have oversight over CDC are the subcommittees
  that appropriate money to the Department of Health
  and Human Services. History shows they are easily
  deceived by, and frequently in awe of, government
  scientists.

  Patricia Blankenship was another whose heartfelt,
  thoughtful remarks kept the bar high for these
  proceedings: "I've been in this fight for years," she
  said. "I've testified for years-the things we've been
  asking for all those years-there are no treatments,
  no medical markers, the physician education is a
  joke, there is no outreach to medical schools.
  Doctors should not have to learn what is going on
  from paper we've printed out from the internet that
  we bring to them.
  "I have very little confidence that CDC is going to
  make new breakthroughs or help the patient
  community, because the same people are at the
  plow."

  Scott Royal, who is the current project director for
  Abt Associates, the contractor that was first hired by
  the agency in 1988 to conduct surveillance and has
  made ungodly amounts of money from the agency's
  "CFS" boondoggle ever since, was the jolliest of
  those who spoke. "Participation in our Macon
  (County) clinics is very positive (for patients) and
  provides validation to them that their experience is
  real...The mere fact that CDC is funding this
  research," he said, sounding a little choked up
  himself, empowers patients because it makes them
  aware that their disease must be important.

  Another superfluous piece of flotsam from an agency
  employee/conractor. Royal describes himself as a
  "social and behavoiral epidemiologist" on his resume
  and has a masters in public health. He is credited on
  the Abt website for being "instrumental in designing
  and implementing a strategy that has significantly
  built the Abt Associates porfolio of work at the CDC."
  In fact, Abt Associates opened an office in Atlanta in
  July of 2008, an office that I'm guessing was built
  with a lot of "CFS" research money.

  To Royal, I would simply say, I don't believe patients
  are looking for empowerment from the CDC, the very
  folks who helped disempower them, nor are they
  looking for validation that what they are experiencing
  is "real."
Only a CDC pod person could infer, in 2009,
  that patients are in a state of uncertainty over the
  reality of what has happened to them.

  In my experience, patients are looking for rational,
  competent, scientific research. And if the agency
  didn't hear that this afternoon, it never will.

  So, in addition to my sentiments expressed above, I
  think the CDC should get out of the empowerment
  business.

  And to those who braved the wear and tear of this
  remarkable afternoon, I would like to say, "Group
  hug, anyone?"

  Be the first to comment:
  http://oslersweb.com/sb/comment.php?post=594304




Thursday, May 21, 2009

Linking Pathogen in Neuro Diseases (CFS, MS, Alzheimers, Parkinson's)

 
 
 






 

Much Ado About Nothing and Very Little Ado About Something


Whenever the subject of disability benefits comes up, there's a lot of screaming about "fraud". In fact, after a lengthy and expensive investigation, Connecticut found a whopping six cases of disability fraud in the state; not likely they'll ever recoup the cost of rooting out that fraud through the savings of terminating half a dozen people's meager benefits.
I've seen people bedridden and without understandable speech denied disability benefits because some bureaucrat decided there had to be some job they could do. So I'm not convinced there are able-bodied people wrongly getting SSDI. Certainly, there are people like me who "look" healthy on the outside but have disabilities you can't see (or can only see on bad days) – 96% of disabilities are invisible.
But a nationwide task force to combat an estimated $60 billion (with a B) a year in Medicare/Medicaid fraud draws little notice. Assuming an average SSDI benefit of $1000/month (less than minimum wage), you'd have to find 5 million of us little people defrauding Disability to achieve that kind of savings.
Medicare/Medicaid fraud is not perpetrated by people claiming to be poor and disabled when they're not. These are fraudulent claims made by health care providers. It's doctors/hospitals who overbill, medical equipment supply companies who bill for equipment never delivered, even major corporations – Eli Lilly repaid $1.4B on claims related to "improper marketing" of one of its drugs. They're not getting a below-poverty-level SSDI check, they're getting six figures, seven figures, however much fraudulent billing they need to submit to maintain their luxurious lifestyle, which is a far cry from the average SSDI recipient who barely keeps a roof over his/her head and minimal food on the table.
But apparently, "the rich get richer" isn't as worthy of irate public rants as the concept that a few poor people might be getting a couple hundred a month to pay rent instead of living (and dying) in the streets. Rants which sometimes come from the very people who are themselves committing fraud on a more massive scale than I, as a disabled person, would ever be able to.

Wednesday, May 20, 2009

CDC's stats on Swine Flu

 
 

New data released by the CDC Tuesday showed that the majority of the 30 patients who were hospitalized with H1N1 in California had other medical conditions, such as chronic heart and lung disease, suppressed immune system, diabetes, and obesity. None of the patients died.

They had fevers, coughs, vomiting and shortness of breath, according to the CDC report that examined the patients. Six of them were admitted to the intensive care unit and four required mechanical ventilation.

Five of them were pregnant -- two of the fetuses did not survive.

Case characteristics

A sample of 30 hospitalized patients with H1N1 had the following chronic illnesses:

Chronic lung disease 37 percent

Other immunosuppresion 20 percent

Chronic cardiac disease 17 percent

Diabetes 13 percent

Obesity 13 percent

Seizure disorder 17 percent

Source: CDC

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Let me remind you -- this has sickened about 10,000 people worldwide.  CFS has 1,000,000 victims in the US alone.  Why is CDC so hepped up about this one?  It doesn't meet their own definition of an "epidemic", the definition they used to say that CFS didn't affect enough people to warrant any attention.
 
Yesterday on Lou Dobbs on CNN, Lou learned that some doctors don't consider it necessary to test for swine flu, they just treat it as any other flu.  He suggested the reason is "CDC doesn't want to know", which is eerily reminiscent of the comment about why CDC wasn't trying harder to find the CFS virus.





 

Monday, May 18, 2009

Ampligen Update

The latest deadline for an FDA decision on Ampligen is scheduled for one week from today, May 25th. To say that no one knows what the FDA will do is to say that the sky is blue. The FDA is notoriously closed mouthed.

Just thought I would pass on to the support group that we are nearing an interesting date. The FDA was supposed to give a decision about 3 months ago and they extended the deadline until May. I believe they wanted some more information from the company that makes the drug.

I'll keep you posted.
Mike
 
* * *
As long ago as when "Osler's Web" was written, one of the CFS experts pointed out that FDA could not approve Ampligen (an anti-viral) so long as CDC/NIH insisted that the disease it's intended to treat is IAIYH (it's all in your head).
 
For 18+ years, I've been hearing that "Ampligen is 18 months from approval" and muttering "at least they're consistent".  And for 18+ years I've been hearing the same excuse "need more information from the company" for why it wasn't approved at the end of that 18 months.  They cannot approve the drug for political reasons, but have not been able to find scientific reasons to turn it down, so they've been delaying for two decades.
 
It's been approved in other countries, including Belgium and Canada, so there's plenty of information out there.  Like any drug (even aspirin!), there will be people who have a bad reaction or an allergy, but those few people who did should not prevent everyone else from having access.  I'm highly allergic to soy, but I'm not lobbying the health food industry to stop selling tofu or soy burgers ... I just don't buy them myself.  And the same should be true for Ampligen -- if you have a bad reaction, stop taking it, but don't keep it away from everyone because a few people couldn't tolerate it.
 
What I would really like to see happen is for the government to offer each CFS patient a one-year free trial on Ampligen.  Many of us were professionals -- if we go back to work, we can afford to pay for our own Ampligen the rest of our lives, if the government is willing to help us pull ourselves up by our bootstraps.  But after decades on the pittance you get for Disability benefits (if you're lucky enough to get them, which many patients are not), there will be a lot of patients who could be helped by Ampligen who won't even get the chance to try it because they can't afford it, and our government is penny wise and pound foolish -- would rather not pay for the Ampligen to get you off Disability, even though the net savings over a lifetime would more than pay for that one-year trial. 
 
I've never tried Ampligen, I don't know if I can take it or not; I have bad reactions to a lot of drugs, so I may not be able to take it.  But if there's something that works, I want to have the opportunity to try it and get back to work, rather than having doctors and judges and everyone else put the blame on me for not returning to work when the blame really needs to be placed on the unavailability of successful treatments for my condition.
 
Instead of blaming the patients, blame the government, who have been hearing for decades from patients in the clinical trial that Ampligen is a miracle drug, yet the government has repeatedly refused to approve it, making it impossible for patients to get well enough to work because we're not being treated for the root of the problem.  Anti-depressants (which almost every CFS patient has been given at some point) are not going to beat a virus into submission.

Dr. Montoya at Stanford has had success in treating CFS patients with an anti-viral which is already FDA-approved for another virus, and a member of my online support group, who didn't have the $1100 a month for that one, improved somewhat on a related anti-viral that's only $200/month.  So, there are ways to get around the FDA's refusal to approve Ampligen, but only if you have a doctor willing to prescribe Montoya's drug off-label, and only if you have one of the viruses it works on (which not all CFS patients test positive for).

Fingers crossed that this time, there's enough evidence that CFS is a viral illness and not purely psychological, that the FDA will approve Ampligen on this go-round.  But I'm not holding my breath.