Down The Rabbit Hole

I have about the same amount of mail from people who think I should never have said anything as from people who are angry that I waited too long. There is no way for me to win this one in the court of public opinion. The community is so fractious and reactive that no course of action I could take or not take could possibly leave me without disappointed, critical people. I am sorry for not disclosing my opinions sooner, but we are talking about 3 months, not the years some have claimed in the comments of the last blog. Shoot the messenger if you need to.

My blog was never about Judy Mikovits. It is about the hypothesis. That hypothesis is on the back shelf until this sordid mess plays itself out, which will now probably take years. Years of studying downstream effects, blinders on again, nobody looking for the source of the illness. Tragic.

Take a look at this, not a paper, a blurb on the bottom of a scientist’s webpage. She is probably afraid to publish amidst all the controversy. Who in their right mind would want to jump into this cesspool? With the fishbowl of vitriol that comprise many of the comments on this blog?

Identification of a novel retrovirus in Benign Prostatic Hyperplasia (BPH) 

BPH describes a benign condition experienced by most men as they age, and is a result of increased proliferation (growth) of fibroblast and epithelial cells surrounding the urethra, which over time can form “nodules” and result in compression of the urethra and subsequently obstruction of urinary flow. Symptoms of BPH include urinary hesitancy, frequent urination, dysuria (painful urination), increased risk of urinary tract infections, and urinary retention. Treatment includes surgery and pharmacologic options, although the cause of BPH is unknown. Using tissue from patients who have undergone surgical treatment to alleviate BPH, we discovered that the affected tissue appears to have altered gene expression patterns when compared to normal prostate tissue. This is not unexpected, as the tissue is clearly growing more quickly. However we identified what appears to be increased expression of genes related to an antiviral response. Given the recent findings of a novel virus, XMRV, found in some prostate tumors, we analyzed the BPH affected tissue for viral infection. We found that the majority of tissue from symptomatic BPH patients contained low levels of a virus not previously found in humans. Sequencing confirmed that the virus consists of 2 variants, is not XMRV, and likely produces a protein that has been related to inflammation in other species. Interestingly, the exact virus sequence differs among patients, suggesting that upon infection of the tissue, the virus undergoes replication. Furthermore, sequencing revealed that the virus is likely transcriptionally regulated by androgens, which is consistent with the fact that cell growth in BPH is androgen-dependent and the classic non surgical treatment for BPH is inhibition of DHT (an androgen) production. Both variants of the virus have submitted to the USPTO as a provisional patent, as they may be a therapeutic target for this disease. In addition, we are currently seeking funding to assist in the development of a vaccine, which could potentially eradicate BPH if this novel virus causes the disease, or even if it is just expressed (as a “bystander”) in BPH-affected tissue.

Denise O’Keefe, PhD webpage UPMC

Dr. O’Keefe’s blog: So let’s get this straight; CFS patients don’t have XMRV or MLVs, but if they did, it would explain the neuromuscular pathology….

For everybody who has written that I need to admit that Judy fooled me, I still don’t feel fooled. I could be fooled by a psychopath, like anyone. I have been before. I had a lawyer once that fooled me completely. I have reported my impressions of a person I know well, who is passionate and caring and stands up for what she believes. No signs of psychopathy at all. I hope I am right. In the fishbowl we now find ourselves, I’m sure we’ll find out. Everything. It will be like a rape trial. Blame the victim is always a good strategy.

Annette was captain of the ship. In the ER, when a medical student kills someone in a back room, the attending physician is still responsible. Likewise the CEO of a “state of the art translational research institute”. To me, it looked like Annette took a talented, but vulnerable scientist, and destroyed her. Judy functioned well and published regularly in Frank Ruscetti’s lab for 20 years.

Here is the timeline, since people seem to be questioning what I did when. I read the paper on Oct 9, 2009. I wrote my angry email to the WPI on Oct 28. I was angry for a while, until I met Judy in January. I paid VIP Dx for 2 tests, for my daughter and myself, in early 2010. I couldn’t afford to test my husband or son. I sent specimens to the WPI on a regular basis when we started arv’s, but was never given any results. Some of our specimens were tested, but I don’t know what those results were. It was never reported to me. I was told that some of our specimens were improperly handled by a research fellow who was subsequently fired. I started working as a volunteer for the WPI in the fall of 2010. I started working as an independent contractor in Jan 2011. I worked there for 6 months, mostly from Santa Fe. I made 5 trips to Reno from 3 days to a week. I was fired in early July of this year.

Finding oneself in the position of a whistle blower is a miserable experience. By writing I hope that I have put the WPI on notice of what I would say in court if dragged in. They don’t need a subpoena to find out. They are behaving like thugs. Have they never heard of mediation? I am only sorry that I didn’t say it all sooner. I have mail from people who are angry at me, because they gave money recently. I held hope for a good outcome for longer than I should have. For that I am so sorry.

I also have mail telling me that I should be afraid for my physical safety. That I should ask for witness protection. Witness to what? I wasn’t there. That’s how completely crazy this has become. I would laugh it off, but I would never have believed what has already happened. It is all so beyond the pale. SNR Denton, very expensive patent lawyers, are monitoring my blog again in the last couple of days from Chicago and Kansas City, including the tech department. It is creepy beyond belief. And the money being spent on all this? Where did it come from? Imagine what the tab is by now!

I feel like I stepped in dog shit and will never get it off. Everyone involved has been brought down by it. I don’t know what to do, except keep telling the truth as I see it. As I said, I wish I had done it sooner, but I still held hope for a positive outcome somehow. I can’t believe that all of this is happening. A year ago it was all so hopeful. I am heartsick.

Tonight’s song: Trouble

Coming Clean

Let me start by saying that I did not know where the notebooks were, or even that they were missing, until the lawsuit was filed. If Judy did this, she didn’t tell me. I knew how concerned she was about them and I can tell you as Judy’s friend, she believed that, as the PI (principle investigator), she had a right to them. She had no legal representation until the law suit and the legal issues are very complex. There are issues with not just who owns, but who can even see the notebooks. She said to me that the notebooks documented mistakes that others wouldn’t want brought to light, something she had only realized recently. In our communications, her concern was always for the research and fulfilling her promises to patients. There didn’t seem to be anything she wanted or needed to hide for herself. She was mostly concerned about the specimens, in the months leading up to this. She feared that they could be tampered with. Freezing and thawing destroys them. Her specimens were like her babies. So whatever she did, it was in that context. She and Max are very close, so he must have been very frightened to have signed that statement. Was he offered immunity or a reduced sentence? Did he have a lawyer? Max was missing for two days before Judy was arrested (and not listed on the Washoe County arrest list). My last text to Judy, around when she was being arrested was about Max, “Is it time to call the police?”.

I still think what I thought. The Whittemore’s have destroyed a very talented scientist, through the most incompetent management imaginable. And now Max. From my vantage point, the whole thing seems to have spiraled out of control after Dr. Lipkin’s visit. My guess is that the patents and saving VIP Dx/Univex are at the bottom of it all. As Annette likes to say, “Follow the money”. Or in this case, the lack thereof. As Harvey allowed me to say in the blog about VIP Dx, he doesn’t have more money to pour into this, since the real estate market went south. Now I imagine they feel entitled to recoup their investment. VIP Dx brought them down. It all began with good intentions, but they have lost their way, in my opinion.Here is the first email I ever wrote to the WPI, dated 10/28/09, after learning that commercial testing was being offered, before I met Judy in Jan 2010:

I am trying hard to think of WPI as a resource full of people who want to help, when nobody else has. But it has come to my attention that the lab that is doing the testing has a financial tie to a member of your board of directors. I am broke. I think four members of my immediate family will test positive for this or another similar virus. I pretty much know that anyway, without the test, but it might make a difference to my disabled daughter to be able to walk into a doctor’s office and say, “I have Virus X”. And I can’t even give her that, at the moment, because her acute medical problems have to take precedence.

I know a conflict of interest when I smell one. Shame on you.

Jamie Deckoff-Jones, MD

Their PR person answered that Annette Whittemore would contact me directly, but she never did. And there you have it. It never changed. She is non-responsive. Doesn’t answer email or phone calls. I’m sure lots of you out there can verify that statement. Her voicemail is often full. She disappears for long periods. Can’t make a decision to save her life. And when she finally does, it was generally the wrong one, in my opinion. I never signed a contract; she spun her wheels about it for months, but never managed to actually give me one. Even so, I wrote nothing after I was fired, except that I’d gotten a “pink slip”, until Judy was fired. Though I knew how terribly flawed it all was, my opinion at that time was that it was better for the patient community for them to exist. But without Judy, it is just a black hole.

With the implosion of the research, I no longer felt there was a reason to try to protect them. When they knew that they didn’t have a reproducible assay, the sale of the XMRV test became fraud, in my opinion, and I advised Judy in the strongest terms that she should quit, since she apparently couldn’t make them do the right thing. In response to my direct question, she told me that she demanded they stop testing on August 1 or earlier. I cautioned her that she might be an accessory to a crime if she remained silent. I advised her to give a press conference on more than one occasion. I didn’t blog before the fund raiser because Judy asked me not to; she was still trying to figure out how she could save it at that point. She was desperate to keep her lab, to fulfill her promises to patients. I wasn’t there, so I let it be her decision. For that, I owe the patient community an apology. I knew that the program was without substance and kept it to myself for several months.

I’m not sure exactly what went wrong with the BWG, but part of it was an attempt to validate their commercial assay at the same time. So again, they shot themselves in the foot over the commercial lab. When Lipkin came to dinner, Annette told him she had 19 people on the payroll. Judy had Max and Cassie, both without graduate degrees. And then just Max. Annette has a personal assistant.

Many have asked me what happened with me at the WPI. Here it is, and then I hope I am done writing about the WPI. I have good things to report from my practice, which is what I should be writing about. I can’t tell you all how badly I would like to be done with this. My goal in writing this blog was to be of assistance, not be an energy suck, which is what this whole sordid affair has become.

I became involved with the WPI, because patients corresponding with Judy were sending me her answers to medical questions. I told her that answering those kinds of questions was a reflex for me, and since she was really bad at it, she should let me do it. She thought it was a great idea, but that I needed to have an official relationship with the institute. So I became ?; don’t even remember the title, but it was an official, volunteer position that enabled me to respond to patient information questions.

Without reviewing our email for dates, in late 2010, since the clinic seemed dead in the water, I presented Annette with a model for structuring it, fashioned after emergency medicine groups, generally a contract held by the physician group. It’s set up that way to protect the institution from medical liability. Annette loved the idea and asked me to make it so. An LLC was formed and we hired a physician recruiting company who started to send candidates. I wanted to set it up as a primary care clinic with specialty back-up. I was looking for competent doctors, not specifically CFS specialists. It is one very homogeneous disease after all (I can hear the gasps from here:). Annette expressed her relief to have me, saying that she knew she couldn’t evaluate doctors. She acknowledged that she knew nothing about running a medical practice.

On 3/23/11, already in conflict, I sent this to Annette in an email:

A good administrator:
1. Knows what she doesn’t know.
2. Knows how to delegate.
3. Protects the talent.

She said I was mean. I said I’m the best friend you have. You are paying me to be a consultant and I’m telling you what I think.

I provided a rough spreadsheet, with some numbers provided by the WPI accountant, that showed roughly a million dollars a year in profit with 10 doctors, which would be donated back to the institute for research. The budget asked for $100,000 up front, to be quickly repaid, which included my salary prior to opening. I even said that it was possible to get it open with no money, if I paid the doc’s a percentage of gross, the way we did in the ER. I thought the distribution of expenses at the WPI seemed not in favor of producing any meaningful science, so I do admit to wanting to have a say in how the money was used. I expressed this to Judy, but not to Annette, though she probably sensed it. There was no evidence of a presence of a board of directors that I could detect at all when I was there.

I went to Reno to interview doctors in early spring. Two weren’t right, but Chitra Bhakta was perfect. However, 15 minutes before Chitra arrived, Annette informed me that she had seen new lawyers in Las Vegas and had decided to employ the doctors rather than structure it as a separate corporation. I told her that I thought it a serious mistake for her to employ or try to manage doctors directly. Managing doctors is like herding cats, having done it before. Before my first crash, I was a 20% owner of an emergency medicine contract group and medical billing company in San Jose, CA. My 4 partners and I had 3 contracts and were responsible for 150,000 patient visits per year. I was vice president of human resources. I was responsible for recruiting, hiring, firing, knee-capping. We had 50 doctors and 20 PA’s. I was, in fact, the right man for the job at the WPI. Though sick, I was willing to go down for it. I figured I could last at least long enough to get it up and running, find an onsite director. Getting fired saved me from myself, but I wanted to offer treatment to those 2000 people on the interest list. I wanted to develop a large database, so we could look at treatments in a systematic way. And Judy and I were planning the first clinical trial of tenofovir.

So Annette decided to employ the doctors, including me. I said, it’s your baby, structure it however you like, but let me get to work. My attitude was that I owed her a debt of gratitude that could not be repaid and I would do what she needed me to. We agreed that Chitra should be the first hire. I told Chitra she was hired and that Annette would be in touch with a contract. Well, six weeks passed and no phone call to Chitra, no contract, nothing.

I was planning another recruiting trip. I had at least two interesting doctor candidates, as well as a nurse. I also had a couple of practice manager possibilities. Quite a few of the interested candidates for staff positions were a little sick, which Annette wasn’t happy with, but as it was with me, that’s what there was, except for training newbie primary care doctors. No famous CFS doctors were stepping up to the plate, except for Dr. Enlander who called me and offered to fly to Reno on a regular basis to teach. The other thing we locked horns about a bit was that my approach is non-invasive with respect to treatment choices. I have a strong bias against treatments that can kill, as well as unnecessary invasive procedures when there is plenty of necessary tissue harvesting happening in patients that would be happy to help. But it was always clear that I would not be determining protocol for other doctors. That was never the idea. I was actually thinking that with different doctors doing their own thing, the database would help us sort it out.

Shortly before that trip, Annette pulled the plug all together, deciding that there would be no clinic. Rather doctors would lease space and have their own practices. When I went to Reno for the Lipkin visit, I spoke to Dr. Fredericks and asked him if he would consider using Practice Fusion, free EMR, for the patients that he saw from the WPI wait list. I was still hoping to create the database somehow.

I also asked and received permission for Chitra to see patients under the same deal as Dr. Fredericks. After discussion with Chitra, Annette agreed, then, never got back to her, again. From what I could unravel after the fact, the WPI lawyer somehow decided there was something wrong with her credentials that would prevent her from getting a NV license. Chitra did her internship in NV and then her residency in California. Her NV license needed to be reactivated, but there shouldn’t have been a problem with it. Precisely the kind of thing they needed an administrator for, but they fired me, so there was nobody bird dogging it that had a clue about the sytem. In the meantime, Chitra’s father died and she had to go to India. By the time she got back, the WPI had decided that there was some problem with her. It seems they have even damaged her reputation with this nonsense. In the midst of all this, I was fired, “because we don’t need a clinical director”, but asked to still volunteer, to write for their website or something. I think it happened because Annette is a control freak and couldn’t stand the thought of not calling the shots for the clinic. She did pretty much the same thing with the research, as far as I can tell.The Whittemore’s went public saying that Andrea takes a pill that makes her well enough to work and exercise, but wouldn’t say what it is. So patients, sending in their $10/month from their social security checks can’t even know, let alone hope to access what Andrea has. I expressed my opinion on multiple occasions that this was wrong and an exceedingly poor decision on many levels. It would have been fine to say nothing, but to use it to bolster the reputation of the institute, without disclosing what that treatment is was disgusting. And then Annette lying on the news about all the miracles happening. Using another patient similarly. We got her out of a wheel chair, but won’t disclose her treatment… Fairy dust. My loyalty is to the patient community and I am feeling guilt about saying too little, not too much. People have a right to medical privacy and certainly saying nothing was an option. Many, many people have asked me, but it is not my place to disclose anyone else’s treatment. I never have and I never will. However, as I said to the Whittemore’s, being a public figure has it’s responsibilities and this went down with typical ineptitude.

I am not going to guess what happened with respect to the notebooks before speaking to Judy. The black and white thinking displayed here and on FaceBook is telling. Even poor Lilly Meehan, the sweetest woman on earth, is collateral damage. If Judy isn’t a saint, then Annette must again be one, and Judy now has to be the sinner. All black and white. The reality is all shades of gray, imperfect people in an imperfect world. Epic fail. And that includes me, since I was briefly on the payroll. No matter what just happened with the latest chapter of this disaster, it was very unfortunate that Judy was hogtied by incompetence the entire time. Annette should have stuck to her fund raising activities. But she doesn’t know what she doesn’t know. It was like Keystone Kops. Amateurs. And who are the biggest losers? As usual, it’s the patients.

Today’s song: All My Tears
by Julie Miller

China Syndrome At The WPI

My friend Judy is in jail. It defies explanation. Nine policeman appeared at the home of Lilly Meehan yesterday with a warrant and searched her house, finding nothing of course. At the same time, Judy’s house was searched and she was arrested for being a “fugitive”. She was fired unexpectedly and went home to her husband. That’s being a fugitive? Only legal machinations, misuse of the system, could define her as a fugitive. If it wasn’t so horrible, it would be laughable. What she was “fleeing” was a veritable looney bin, having made every attempt to remain on the inside. And now they have taken her freedom. Turning her into not just a fraud, but a criminal, a thief? Come on. She is incarcerated and anything can happen. It is critical that the patient community find ways to let the authorities know that we are watching. If anyone harms a hair on her head, it will be noticed.

Dr. Mikovits was due in New York for the Mt. Sinai conference tomorrow, so would have had to leave the state in any event. And they knew very well she had been invited to that conference; it was no secret and they could have warned her that they thought that a violation of the injunction. What were they going to do if she had just gone to New York? Would she have been hauled off to jail for attending an important ME conference at which she was slated to be on a panel?

My blog is being monitored by the same law firm that sued Dr. Mikovits in the last few days. From Chicago and Kansas City. There are even 3 hits from the tech department in Kansas City. It would appear that they are actually paying really expensive lawyers to think about my blog! Are they going to spend money on a libel suit? To win a libel suit, you have to prove an untruth. I have told the truth and nothing but the truth. Everything I’ve said is my opinion and my own experience. I have nothing to hide and stand behind everything I’ve said. The only blog I regret is the one Harvey fed me about VIP Dx. I believed what he told me implicitly at the time, but now? Anything they told me is suspect. Who are these people? The sweet well-intentioned parents of a sick young woman? They must have used a very long, very strong arm to have made that happen yesterday. An intensive police effort in another state for a non-violent crime? How many cops involved? 20? You’d think she was a serial killer.

For the record, and lawyers at SNR Denton please take note, when I said that the WPI was spending money that patients donated on lawyers, I was stating my opinion, based on my assumption that the WPI’s income comes from grants and donations, and that they aren’t using grant money to pay lawyers. However, I was never privy to the books or finances at the WPI. I did not mean that there are line items in the books showing patient donations going to lawyers. The lack of accountability is part of the problem. What did happen to all that money, since there was lots of it, and apparently still enough left to burn up a bunch on lawyers? I wanted to write a blog before the annual fundraiser, but Judy stopped me. And now they have all that money, to pay lawyers to destroy Judy and go over my blog with a fine tooth comb. Very ugly.

Personally, I think it was Professor Plum in the library with the candlestick. The materials in question document a failed experiment. I have no idea where the notebooks are, but the value being put on them is smoke and mirrors, in my estimate. Their only real value would seem to be to someone with something to hide, which could be a number of people, Judy being the least likely. Any value the notebooks might have had is destroyed with this crazy maneuver. They are in the process of completing the destruction of the only scientist in the world who cares enough to have laid it all on the line. The scientist that helped their daughter by finally conceptualizing what was wrong with her, even if she didn’t have the resources, human and financial, to prove it. The damage to patients, to my daughter, is inestimable. The Whittemore’s are throwing us back into darkness. Complete meltdown for the patients. They held themselves out as our best hope, but have managed to snatch defeat from the jaws of victory. Beyond tragic. They have now ensured their own place in the community as a pariah, it seems to me. The saddest thing of all is that they are fighting about the past, and ensuring that nothing at all will happen going forward, while our hearts get dissected in the courts.

I had to cancel my trip to NYC. I have been pushing to see patients for a couple of weeks and was too close to the edge to throw myself off a cliff and hope to fly. And now this. I will be in LA on Tuesday for Judy’s arraignment. I hope that as many of you as possible will attend. Let the authorities know that we are watching. Let her know that we are with her.

A hearing for Dr. Mikovits will take place on Tuesday, November 22 at the Ventura County Government Center, Hall of Justice, Room 13, at 1:30 p.m. The government center is on Victoria Avenue in East Ventura.

County of Ventura Government Center
800 S. Victoria Avenue
Ventura, California 93009

See Click here: Maps Map of the Ventura County Government Center

Parking for the Hall of Justice is accessible from Lots B & C, entering from Victoria Avenue, and from lots E & F, entering from Hill Road. Even with handicapped parking, there is considerable distance to walk from the parking lot to the Hall of Justice, so bring a wheelchair if needed.

Ventura is a coastal Southern California town between Santa Barbara and Malibu. Travel to Ventura County by car is accessible by freeway. The Ventura County Government Center is bordered by the 126 Freeway and Victoria Avenue and is close to the 101 freeway as well.

Amtrac has stops at both Oxnard and Ventura. The Metrolink train station in Montalvo is much closer to the government center than the Amtrac stations, so if possible to use Metrolink, that is the best.

Tonight’s song: For What It’s Worth

A Game With No Winner

Let the lawyer games begin. My blog “Square One”, of October 1, was unfortunately prophetic. The WPI is in fact using money donated by patients to pay lawyers to sue Dr. Mikovits. One more in a very long line of horrible decisions. I am truly incredulous. This entire fiasco is doing great harm to the patient community, the extent of which is unknowable at this time. The research is destroyed. The notebooks and specimens are potentially compromised.

As I finished that last paragraph, a friend sent me Annette Whittemore’s blog just posted. I really don’t know how she keeps a straight face. She’s suing her chief scientist and the principle investigator on the institute’s grants, after termination without cause, to obtain notebooks and flash drives that Dr. Mikovits apparently does not have, since she was locked out of her lab suddenly and unexpectedly. I would say that as the “the guardian of this property”, Mrs. Whittemore has failed pretty miserably. And now she is using a little of the millions of unaccounted for dollars to sue Dr. Mikovits. I thought I understood the depth of the incompetence, but it just keeps getting worse. She thinks the patient community is going to be OK with this? Business as usual? Wait for the WPI to figure out a cure, without a chief scientist, and oh, please send more money? Who is she kidding? Sorry Annette, now we have to think about a legal defense fund for Judy!

I was going to write some good news, to follow the bad news, but I think I’ll write that when I’m not feeling like I’ve been slimed.

Tonight’s song: Highway To Hell

Are We Crazy?

My mail this morning bears witness to the routine abuse of ME/CFS patients by their doctors, especially when forced to seek care in a hospital. Here is one:

     Do you have any survival advice for M.E. patients who are admitted to the hospital? I had a very negative experience when I was admitted to the hospital a few months ago for an inflamed appendix and severe stomach pain (no surgery done). Besides the complete lack of sleep for three days, neglect, and bungling of care, there was the underlying disbelief that there is a real illness. I know now to try to avoid hospitals, as it was perilous to my health and overall condition, setting me back perhaps in permanent ways.

     Because of my negative experience, I requested some of my hospital records, and found that the doctors wrote things that are just not true, were written with sarcasm, and seemingly to protect themselves. I can’t believe how simply asking for my normal sleep prescription the first night led to the surgeon on call (who denied me my sleep Rx) writing in my records that “she may need psychotropic drugs. She did ask for Ambien.” He also falsely stated that I was taking Librax for anxiety, which was not true. I have never been prescribed anything for anxiety. The next doctor I saw, a GI specialist, read what the previous doctor wrote, and wrote that I have an anxiety disorder. My husband was there the whole time and said he noticed no evidence of anxiety, and that these statements seemed to come out of the blue. I have to wonder how much of this is due to there being a medical history at the hospital with a diagnosis of CFS (from diagnosis codes on outpatient x-rays, etc.?), and perhaps gender bias. On my last day in the hospital, just prior to an endoscopy, the same G.I. doctor (who was now in charge of my care) was very impatient, rude, and verbally abusive (shouting at me). Then after this reprehensible behavior he had the nerve to write in my diagnosis, along with stomach and esophagus findings, “severe anxiety disorder as well.” There was no basis for this. Again, my husband was also present. I did mention having episodes of fainting that follow a squeezing stomach pain. But I don’t think anxiety is causing it. I have never been diagnosed with an anxiety disorder, he did not prescribe anything for it, nor did he mention it to me in person. I am asking for your insight – what can I, or should I do about my records? I am concerned it will affect future care. In fact, I think it already has – I had a follow-up with a different surgeon who had received my records. At the time of this appointment, I had not yet seen what was written in my records. While this surgeon was very pleasant with me, when I mentioned to him the stomach squeezing and fainting spells, he said he didn’t think it was anything to worry about. I thought that was odd. When I had the phone consultation with you, I think you said it was probably due to autonomic dysfunction, but other causes should be ruled out. How can the doctors be educated about the autonomic dysfunction?

I advised her to complain to the hospital administration about the behavior of it’s staff physicians and to demand that any inappropriate references to “anxiety” by expunged from her record. She should demand an apology. We all should. Regularly. This patient’s account is a good example of why CFS patients get better care if they don’t mention the underlying diagnosis. If this patient had presented as a healthy woman with abdominal pain, they would have been all over it.

From one of my patients, who has the common complication of palpitations from various benign dysrrhythmias, related to her dysautonomia. She was sent for an ablation a couple of years back:

They took me to the operating room looking for an arrthymia. They could not find one. I was being medically abused by doctors giving me benzodiazapenes [which she does not tolerate] which were contributing to the heart issue yet they kept giving me more. I didn’t know that the benzodiazapenes were joining forces with the disease making me sick and catapulting me into hell. They took my gown off and put me on a freezing table I was begging for my parents screaming and sobbing uncontrollably. In a room full of men and women nurses and techs they proceded to shave my whole pubic area. They were not kind, gentle, or discreet. They were harsh. Then they cut into my artery. I kept telling them I didn’t feel relaxed or calm and the medication wasn’t helping. They told me they would give me some more benzodiazapenes! I was wide awake.  When they got to my heart they injected some adrenaline to induce an arrythmia. I now began screaming for them to stop. I thought this was the end for me. They told me to be still or I’d mess it up. They had men hold me down. I don’t think terror is a sufficient word to describe the horror taking place in my mind and body. After he could not reproduce an arrhythmia they wheeled me out a shaking mess and I remember the doctor told me I must be producing too much of my own adrenaline and that was causing this. I asked him how. He said by worrying and because of my anxiety.

Then they wheeled the bed  to the next chamber of hell. The emergency room. The world renowned hospital had nowhere to put me so they stuck me there next to dying men in heart failure. They told me not to move for 6 hrs or I would risk bleeding to death. But the best was yet to come. When I started having cardiac episodes and more adverse reactions as the benzodiazapenes they had pumped in me began to wear off they called in the psychiatrist. He sat by my bed and told me he would give me the drug Seroquel to put me to sleep, confirming what had yet to be uttered outloud thus far. I was deemed mentally ill to this facility. Labeled, stamped, sealed, delivered. Somewhere during that sickening day I had earned my title. I am not and have never been psychotic. How dare they put such drugs into a young innocent suffering body. After administering this powerful medication to me I fell into some delusional form of sleep with vivid dreams and illusions taking place all the while still half awake. I was awake enough to hear the man just besides me, only a curtain between us, have cardiac arrest, and die. I hope everyone who was involved in my care in that facility that day rots in hell. That memory haunts me and always will. I don’t think terror is a sufficient enough word to describe the damage that took place to my mind and body.

But I think the one that takes the cake. was my experience at the Mayo Clinic! When I became sick the 2nd time around with unexplained total body shutdown, as I’ve come to call it, I headed to the Mayo Clinic. This was the place everyone said to go when no one else could figure you out. So with my doctor’s help I got in. We ventured across the country to Minnesota. I could barely walk. I spent two weeks there being examined from my toenails to my ponytail. I was sent to see a psychologist everyday when I was there so they could be a part of “the team”. I was told that the cardiology department there wrote the book on POTS, they discovered it. And the CFS center was the best of the best. I will not recount the abuses taking place during my two week stay but I will share two noteworthy final encounters. On my last days there I went to the cardiology department to get my final report. I was brought into a room where I waited for an arrogant dapper South African cardiologist to make his grand entrance. The whole meeting went like this and I kid you not.  “Young lady you do not have POTS. Not even close. You have no autonomic problems at all. Anyone who tells you different is a fool. I wrote the book on POTS. In addition a girl with your symptoms of depression will not get any beta (he pronounced this BEETA blockers) from me.” He then walked out of the room as abruptly as he entered.

The next day I was met by a team of psychiatrists and psychologists for my final report. They prepared a huge file on me which they handed out to everyone in the meeting. It said I have a mental illness not a physical one. The psychiatrist wouldn’t let me speak at this meeting. He told me any attempts would be ignored. All the evidence pointed to a mental illness where people believe they are really medically ill. He then told me I would need to be started on Effexor an SNRI as it would save my life. He closed by telling me that I could find quacks down the block.  (he had their names and numbers) who would tell me I had such things as chronic Lyme or CFS but they were just quacks and I’d be going down a dangerous path by getting involved with that.

I will never forget where this illness can take us and I will never allow such negligence to bring me to hell again.

This patient had a 36 beat per minute increase in her pulse rate, 72 to 108 upon going from lying to standing, with a BP of 90/70 in both positions, and runs of what were probably PSVT, in my office. I wonder how the Mayo Clinic doctor thinks she performed that trick with her anxiety. The only thing he got right was that beta blockers and depression are not good together, though this patient isn’t clinically depressed.

And in the UK, patients get “sectioned” so they can be talked out of being ill. Even the comfort of good therapy is denied to patients with a diagnosis that is a pejorative. CBT might in fact be useful if it were about helping patients cope with the reality of their disease, rather than talk them out of their “false illness beliefs” and being so overly focused on their symptoms. Symptoms like being unable to sit up or lift their arms. Or using up a day’s allotment of ATP to go to the bathroom.

The association between ME/CFS and autonomic dysfunction is unrecognized by the medical profession at large. Even cardiologists who know enough to diagnose POTS are unaware and fail to see it in it’s larger context. There is a whole department dedicated to autonomic dysfunction at Vanderbilt that seems to see CFS as an overlapping confounder to the real work. This condition was largely unknown 30 years ago, except as a fatal genetic disease (Familial Dysautonomia). The first paper in the literature appears in 1993, Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia? Schondorf, and “neurally mediated syncope” first appears in 1989. Why doesn’t anyone wonder what’s going on that a significant percentage of the non-diabetic population has an autonomic neuropathy that was unheard of a couple decades ago? Any epidemiologists want to ponder this one?

In reviewing the paltry literature on the subject, the work of Julian Stewart, at New York Medical College’s Center for Hypotension, stands out. He has an NIH grant to study “whether circulatory problems explain the symptoms and signs of the chronic fatigue syndrome in teenagers”. Next best to figuring out what caused the circulatory problems in the first place.

Dr. Stewart was the lead author on this paper documenting that CFS patients hyperventilate during what I call a mini tilt test, which I include in the physical exam when evaluating a new patient. Hypocapnia is a biological marker for orthostatic intolerance in some patients with chronic fatigue syndrome. Natelson. This study documents that there is a problem with hypoxia, stimulating increased minute ventilation (though apparently not increased respiratory rate, at least in this study), despite the fact that oxygen saturation in the blood is normal. Sad that we need to turn ourselves into lab rats, and be subjected to barbaric studies like being strapped to a tilt table to prove what we know full well, that we actually have OI from an organic illness.

And what is the clinical armamentarium? Florinef, licorice, IV saline, electrolyte drinks, maybe DDAVP, beta blockers, midodrine, all imperfect bandaids. Hawthorne, a vascular toner, is a magic herb for some. Ali’s POTS has resolved in recent months with high dose normobaric oxygen ad lib and modified Meyer’s cocktail infusions every week or two. The most bare bones infusion seems effective for her, containing MgCl 400mg, Ascorbic acid 500mg, B-100, pyridoxine 100mg, dexpanthanol 250mg and hydroxocobalamin 5mg. I am not sure that the glutathione push adds anything for her, but we will continue to explore it. After her initial response to the cocktail containing Leucovorin 10mg, she tried oral folinic acid. It had a positive effect initially, but then she thought it might be contributing to sleep disruption and went down, then off. Coincidentally, she felt the need to reduce her Deplin from 15mg to 7.5mg. Her requirement for folic acid derivatives appears to be decreasing with time, as her health improves.

I was interviewed yesterday by a graduate student in communications who is researching gender bias with respect to CFS. We discussed the ignorance and disbelief to which patients, especially female patients, are routinely subjected. I recounted this story to him. In the summer of ’06, I was hospitalized three times for abdominal pain and an inability to eat. I required TPN (total parenteral nutrition) and eventually needed a transfusion and emergency surgery. At one point, as I was near death, Ali was in a different hospital, because she woke up one morning with a paralyzed arm. We were both subjected to involuntary psychiatric evaluations. Why was that necessary? Because we had Lyme Disease? It makes my blood boil to think of it even five years later. If I’m crazy, my doctors drove me to it. There were times that seeking treatment was like signing into a veritable looney bin. With this disease, we must all learn to fly over the cuckoo’s nest.

Boulevard of Broken Dreams