Saturday, March 10, 2012

Painkiller Access Debated as Patients Suffer


"Noticeably absent from the hearing, however, was anyone living with chronic pain, or anyone even to speak on behalf of pain patients. Patients and their advocates say last week's hearing is typical of the lack of balance in the public debate over painkillers."


Just like two weeks ago there wasn't a single woman at the hearing about birth control.  They don't want to listen to the people who actually use the stuff, only to the people who impugn the patients with phony accusations.

Tuesday, March 6, 2012

Dysfunction Junction: The ANS and CFS

Autonomic dysfunction and CFS

"Autonomic nervous system (ANS) dysfunction is a common feature of CFS, and can cause symptoms in virtually every organ system. Circulatory symptoms include lightheadedness, cold hands and feet and palpitations or "anxiety." In the digestive system, autonomic dysfunction can cause nausea, cramps, constipation, diarrhea and bloating. Autonomic dysfunction can also cause abnormal breathing and urinary patterns, and problems with balance and even vision." 

Monday, March 5, 2012

Insane Clown Posse | CFS Untied

There's No Business Like Show Business - CFS Chronicles

There's No Business Like Show Business
Some recurring positive attributes given to the Whittemores in recent news articles are along the lines of affable, friendly, likeable. And I will admit, in part, they are exactly that in my experience. Annette struck me as charming, sincere, and gracious. Harvey as in command, always smiling and a devoted family man. They invited me into their home. I took that as a great honor because of their high profile and need, I was sure, to be careful about letting their guard down, even with some lowly patient from the East coast. I had no other intention than to be helpful to the institute, to the family running it, and to the former NCI retrovirologist in charge. As my confidence grew in WPI's goals, I made plans to create county wide fundraisers for WPI along with penny drives in our schools to help make people aware of neuroimmune diseases. I, along with many other patients, made myself sick voting and soliciting votes daily for Chase giveaway and Vivant. All that was with the intention of raising money for Judy's research. Not WPI research with whomever Annette chose to plug into the grant, but Judy's research. In my eyes, and I think in most patients' eyes, Annette's main priority was to support and fund Judy Mikovits' research.
As my concerns grew with WPI about a year ago, my priority became praying that the stress from the fight for HGRV validity did not rip the institute apart. I blamed it on the government pressures and scientific political pressures. I was not inclined to say, even to good friends, that I believed part of the stress was in mismanagement on Annette's part, even though I knew better. I have several friends who would tell me what a fiasco the public relations was with WPI. All of them, highly intelligent, former business people. I made every excuse for WPI though, the primary one was what I was fed on a daily basis. They were straining financially and could not afford enough help.
Robbing Peter to Pay Paul
If the Seenos are correct in accusing the Whittemores of embezzling Wingfield funds to support their lavish lifestyle and run WPI, then the Whittemores have made an art out of robbing Peter to pay Paul. In fact, after reading several recent news articles, it seems ever since the real estate crash that is what the Whittemores have probably been doing. They rob one person blind in a law suit, or embezzle, in order to pay someone off who is breathing hot and heavy down their necks. You would have to fall on desperate time to embezzle from the Seenos. This is, of course, all pending trials. We're asked to reserve judgement on their guilt, although this is something we surely were not encouraged to do in regards to their allegations against Judy Mikovits. And suing Judy Mikovits is about self-preservation, not about patients. If WPI was truly concerned about patients, they would never have fired Judy Mikovits. They would have understood why patients were donating in the first place. They donated to Judy's work. It borders on pure narcissism to be so out of touch with patient community feelings as to think firing Judy Mikovits would not directly result in withdraw of financial support. And the amount asked for in damages is the definition of extortion.
 "The Whittemore Peterson Institute is apparently attempting to sue Dr. Judy Mikovits for 'all costs associated with her work', according to today's article at, including every dime of her salary since she started working there, all of her research costs while working for the Institute, and, crazily, for the $133,100 drop in donations after Mikovits left." (CFS Untied – blog)
So, they want her full salary back? A salary probably paid for by the Seenos in the first place through Wingfield? In order to hand it over to the Seenos who are suing them for the money back? Takes a lot of chutzpah and a lot of buddies in the legal system to believe you could make those claims against a wrongfully terminated employee and actually receive the requested damages. And then to claim that patients have been swayed by Judy Mikovits to stop donating is ludicrous and insulting. As though we are not intelligent enough to make up our own minds based on what we see publicly. Dr. Deckoff-Jones exposed personal communications and threats sent to her from WPI. One patient left a comment that sums up what many former supporters of the WPI are feeling.
Polly – "The only reason that the whittemores are not receiving donations is the appalling way they have treated patients since all this blew up in sept . This has nothing to do with Judy that donations have stopped . Ask anyone in the ME community why they have stopped donating and I bet they al say the same .Many people have infact tried to get their donations back as they feel they were not used for the purpose intended . Very sick patients donated a lot of money much coming from the UK and Europe as all they wanted was to further the research and hopefully get some treatment out of it . Now patients are distraught , angry and feel like they have been sold up the river by the whittemores . I urge the whittemores to drop this case against Judy who has only ever tried to help patients . This case is causing huge distress and damage to the ME community who merely want the science to continue and a stab at normal life again before its too late . So my message to the Whittemores stop blaming Judy for the sudden stop in donations Judy has nothing to do with that . Patients can think for themselves , would you continue to donate money when it was highly unlikely you would ever see any benefit from it ? Only a fool would ."
Jekyll and Hyde
As most people, I have my list of faults. You will not find disloyalty to friends among them though. So, the last year has been a difficult one for me, the last few months even more so. I tried in every way to merge the people I knew in Reno with the people who could fire Judy, sue her, be accused of embezzlement from mafia moguls, be in business in the first place with mafia moguls, accused of funneling illegal campaign contributions (Las Vegas Review Journal), (more in one day for Harry Reid than ever recorded), and then threaten patients by lurking online or sending emails to intimidate them for speaking their minds. What CEO of any organization does that sort of thing with disgruntled customers? With friends like that, I don't need enemies. These people are not our friends, unfortunately. They have families too, of course. There are innocents involved, of course. And they do normal daily activities that would also make you feel there is good there. That humanity is not totally lost in that family. But, it reminds me of the story of Jekyll and Hyde. The overarching theme in many ways is how you can lose your soul to the evil side of your nature, that without proper maintenance of your integrity, you will metamorphosize permanently into the worst of who you can be.
Summary of the end of Dr. Jekyll and Mr. Hyde:
The letter continues describing Jekyll's cry for help. Far from his laboratory and hunted by the police as a murderer, Hyde needed Lanyon's help to get his potions and become Jekyll again—but when he undertook the transformation in Lanyon's presence, the shock of the sight instigated Lanyon's deterioration and death. Meanwhile, Jekyll returned to his home, only to find himself ever more helpless and trapped as the transformations increased in frequency and necessitated even larger doses of potion in order to reverse themselves. It was the onset of one of these spontaneous metamorphoses that caused Jekyll to slam his laboratory window shut in the middle of his conversation with Enfield and Utterson. Eventually, the potion began to run out, and Jekyll was unable to find a key ingredient to make more. His ability to change back from Hyde into Jekyll slowly vanished. Jekyll writes that even as he composes his letter he knows that he will soon become Hyde permanently, and he wonders if Hyde will face execution for his crimes or choose to kill himself. Jekyll notes that, in any case, the end of his letter marks the end of the life of Dr. Jekyll. With these words, both the document and the novel come to a close.
It was with great sadness at first that I distanced myself from WPI and everyone there. Then it became anger for the reverberations felt throughout the patient community after Judy Mikovits was wrongfully terminated. Past the anger though is just shock at times that this never ends. That patients continued to be harassed regarding lost donations. That they continue libeling Judy by saying she tainted the integrity of the WPI. What a load of crap that is. The place would have had no notoriety without her discovery. That there is no concern over a lost UK blood sample. That NIH and DOD grants were handed over to a researcher lacking expertise in this field and who has never won a grant on his own accord. That grants were handed over to an institute president under investigation. That the Seenos feel comfortable enough exposing Whittemore crimes to take them to court. That a grand jury may indict the Whittemores on felony charges for illegal campaign contributions today. What next?
I think the metamorphosis is almost complete.

Sunday, March 4, 2012

Happy Anniversary -- 3/4/88

So here we are, 24 years after my diagnosis, 25 years after the virus, and Modern Medical Science still doesn't have enough information to do anything for me other than what Dr. Israel suggested in 1988: fix the sleep problem and let the body heal itself.
What the heck are they waiting for????!
I realize that I was fortunate that I got a diagnosis so quickly.  I had the virus in February 1987, went back to work full-time the next week, and collapsed on Thanksgiving.  When I still felt punk on Monday, I went to the ER, which referred me to a doctor in their medical group.  He concluded that I was an anxiety-laden woman whose husband wouldn't let me be a housewife, forced me to work, and refused to accept my explanation that this was related to the virus.  Apparently, he's never heard of long-lasting viri like polio and AIDS, because he totally pooh-poohed the notion that health problems could be related to a virus 9 months earlier.
He sent me back to work with a diagnosis of "nothing", yet it was obvious to my co-workers that I had Something, with a capital S.  When I went back to the doctor a couple months later with the information that my job was in jeopardy if he didn't fix me up quick, he shrugged it off, losing their jobs so they can stay home and watch soap operas was what women want, isn't it?
When I pushed him to Do Something!!!, his response was to give me a referral to Dr. Truax.  Truax did only one thing, AIDS, so that name in my medical records would be a permanent stigma.  Given how ill most of their patients were, the nurse did my intake interview over the phone the day before my appointment was scheduled.  Based on my responses, she was pretty sure I didn't have AIDS, consulted with the doctor, and came back with the declaration that this referral was "a sick joke" and suggesting I see a cardiologist instead.  Except that on a referral from Truax's office, none of them would see me; I'm not sure if they were afraid they'd catch AIDS from the patient, or if they were assuming that all AIDS patients are uninsured and they'd never get paid.  Either way, that referral went nowhere.
Serendipity, I had a personal legal matter that was being handled by someone outside our firm.  I went to see her about the case, and with one look she knew I was seriously ill.  Her dad's a doctor – OB/GYN, but nonetheless an MD – so she put me on speakerphone and called her dad.  He listened for a few minutes then conference-called us with his friend Andy, who was researching these same symptoms.  A week or so later, I was in Andy's office, being told this was a classic case of Post-Viral Syndrome (a few weeks later, CDC mandated that the name be changed to Chronic Fatigue Syndrome, which Dr. Israel didn't like but played along with in order to get insurance to pay the bills).
He gave me something to help me sleep.  Boy, did it ever!  Even with the pills cut into the smallest fraction possible, I was sleeping 20 hours a day, out cold, not even getting up to pee.  Having concluded that there was no safe dosage for me, we stopped the pills in a few days, but just that amount of uninterrupted sleep was enough to jumpstart my body so it would start to fix itself, just as Dr. Israel had predicted it would.
But 24 years later, there's still nothing they can prescribe to cure me, only treat the symptoms.  And that's pretty shameful!