How strange these last few weeks have been! The little group of haters who have decided that destroying me is a worthwhile use of their energy has thus far succeeded in inspiring many, many people to write to me voicing support and trust. I’m not going to play games and say that this hasn’t been very hurtful, especially to my husband and patients, but since I didn’t do anything wrong, there is no real threat behind it. I sent a very lengthy summary with two pages of recommendations to Andrew’s doctors. I have no real exposure in this case from either a disciplinary or malpractice point of view. All sound and fury, signifying nothing. Medical boards don’t pay attention to crazy people from the internet complaining about doctors they have never met. The case is perfectly documented in EMR, signed and sealed. I did nothing wrong. The real question is why would other patients try to take out one of the very few doctors available with a useful approach to the disease, as documented often in the comments on this blog? Pretty sick.
Many of the letters I’ve received use metaphors involving poop or shit. Here is my favorite:
If someone hands you a bowl of baby shit, say “No thanks, this belongs to you”. ~ attributed to an anonymous Sikh guru
The elephant in the last blog left a big pile on my front lawn. I could move, put up a fence to keep it on the other side, or I can stay and clean it up. I wrote a reply to the document that Petrison put up on the internet. I stand by what it said, though it bothered me to give it the attention here, when the papers in the last blog are what we should be thinking and talking about. There are scientists and doctors reading, while Petrison and her little band of cyberstalkers make Simon Wesseley look like he is onto something. I took the last blog down in good faith as part of an agreement brokered by a friend at Jacqueline’s request. I was told she had agreed to take hers down if I did. I took mine down, though I am told it is posted somewhere, which is fine with me since hers is up. I imagine Jacqueline is now figuring out that she was used, since her new playmate controls the “interview”. They are most likely already fighting with each other, since Jacqueline needs Andrew to stay well and Lisa needs him to be sick.
Good work hurting fellow sufferers, “mold warriors”. Rather icky behavior, giving ammunition to the likes of ERV. Create a downpour and all the worms come out of their holes. It doesn’t really hurt me. I have a wait list. I’ve been near death, unnecessarily, because of misunderstanding of my illness, and my reputation isn’t what’s important to me. In fact, it is nothing, compared to being able to reach fellow sufferers. This nonsense is the price for not being invisible. I’m getting traffic from ERV’s blog, people that stay to read mine and then write to thank me, so it’s all fine. It’s the nature of the internet. Being open makes one a target. It won’t silence me. I will tighten things up even further on the professional side, so I can’t be hurt, but I am a patient and the mother of a patient first and foremost.
It is sad that sick people had to spend time and energy reading and answering 100 plus pages of drivel, a smear campaign. The moldies took their best shot and came up with the fact that I wear blue jeans a lot. Jacqueline was informed I dress informally before she planned the trip. There was a picture of me in jeans by the ocean with Andrew that Jacqueline posted. Lots of people wrote how wonderful that picture was. At the time my reply to friends was, “The kid looks good. The doctor looks haggard.” I was hanging on by a thread with the full weight of what I’d taken on upon me. Taking it all at face value now, the mother published her own accounts of how amazed she was because of Andrew’s progress shortly before she fired me. I was relieved because there were so many people who documented that he stayed improved after he was in my care, even at home. Now she says he didn’t improve until after he got new caregivers. So diametrically opposed accounts on different days, both in writing and in public.
Which brings us to the predators in our midst. Lisa Petrison has 540 “entries” on my blog since July 12 according to statcounter.com (as far back as the record goes with the current level of traffic). If she takes off 8 hours at night, that’s an average of every 50 minutes. Does that constitute stalking? I have received the most astonishing mail from prior followers of the “mold warriors”. It would appear that Petrison, in particular, is feloniously practicing medicine without a license, by managing medication. I have accounts of her bullying patients into stopping medication that could have resulted in harm or even death. She tells them to stop their meds abruptly, saying they will be able to do so without ill effect now that they are “clear”, camping in the desert away from the “ick”. It is documented in my mail with respect to a friend who was told to stop Klonopin abruptly. Abrupt cessation of longterm benzodiazepines can precipitate seizures; this class of drugs should always be weaned. Now I have other examples in my mail as well of her bullying people with respect to their meds. She should be offered hospital or jail.
For the record, Jacqueline led me to believe prior to arrival that she had read and understood my blog. She asked not one question the whole time, but acted like everything was crystal clear to her. She presented herself as very knowledgeable, vice president of an ME association in NI. Many of the things she now clearly didn’t understand were explained multiple times, sometimes in a group of Little Acorns members, and she acted like she understood all. The fixation on the word resuscitate is the funniest of all. I joked that if Andrew needed to be “resuscitated” after the day in Kona for labs, pharmacy, lunch and shopping, we could try a saline infusion the next day. It was in a private message, so in writing, and I made sure she knew it was an ER doctor joke. What can I say, she laughed at my jokes by Skype prior to coming.
And the notorious energy drink? We were in the market. Jacqueline saw the drink and went off on a tirade about how her doctor at home wouldn’t let her give Andrew energy drinks though they help him. Andrew drinks coffee in the morning at home, by the way. I took a look at the label. It contained B vitamins and amino acids, plus a small amount of caffeine, equivalent to 1 cup of coffee per drink. I didn’t like the preservatives, additives and sucralose in it, and I explained that to her, specifically saying I wouldn’t use it often, but I told her she could buy a single dose, if she wanted to try it for occasional use. I advised that she could try a third of an adult drink, on rare occasions, like the trip to the lab; so caffeine equivalent to a third of a cup of coffee, less than she gives him regularly at home and other very helpful things, such as taurine and phenylalanine. Andrew tried a third of one drink once in my presence and we noticed no effect at all. Now I hear Jacqueline is saying I told her to give it to him all the time. This is one of the few false statements being made that I can’t disprove in writing, but for that they want my license? So that another doctor can write a script for Adderall or Ritalin?
I hate being forced to respond to drivel. It is a loss for everyone involved. I tried to turn the other cheek, but am dragged in. I’ve lost one friend who has been taken in by the ruckus, hard as it is for me to imagine, as the false statements seem so transparent to me. I can spend a lot of money on lawyers or try to stop the haters this way. Petrison and the other cult members who call themselves mold warriors are a danger to the newly sick trying to figure out online what to do to help themselves. The “radical avoidance” approach is initially appealing to the desperate. The community needs to find a way to shut it down. My requests to ban them from the forums fell on deaf ears, which I find very disturbing and irresponsible.
Meanwhile my kid is doing fantastically well. Ali just finished her second semester of online college at U Mass Lowell with a 4.0 average. I offered Andrew the same extremely low risk treatments that have helped her so much and now I’m being persecuted for it. What a world!
And here’s what we should be talking about: Xenotropic and polytropic murine leukemia virus-related sequences are not detected in the majority of patients with chronic fatigue syndrome. Paolucci et al, which despite the misleading title says that 2 of 12 patients were in fact positive. Or not completely negative. So we have a developing trend. Even with the inadequate tools at hand, they are unable to miss it completely and in the name of scientific validity, have to admit parenthetically that it is all just a bit muddy. Apparently, current techniques are not up to the task of finding a retrovirus, or multiple retroviruses, with low copy numbers and high sequence diversity in unknown tissue reservoirs. One doesn’t have to be an expert in laboratory science to connect the dots presented in their own literature:
XMRV and polytropic MLV-related virus have been controversially associated with chronic fatigue syndrome (CFS). Subsequent reports failed to detect XMRV and MLV-related virus in CFS patients, and the previous results have been interpreted as a massive laboratory contamination by mouse DNA sequences. Among 12 sequential CFS patients, two were positive for XMRV/MLV sequences. In contrast, 40 selected control subjects were negative. CSF patients and controls were negative for mitochondrial mouse-specific DNA sequences. These findings do not confirm the high frequency of MLV-related viruses infection in CFS patients, but also contrast the widespread laboratory contamination previously suggested.
These results would exclude the presence of contaminating mouse or plasmid DNA in reagents. In addition, the two positive amplicons showed different retrovirus sequences, thus excluding amplicon carry-over contamination. The data here reported are relevant to a small group of CFS patients, and studies in larger patient cohorts have not attributed an etiologic role for XMRV or MLVrelated viruses in CFS (Erlwein et al., 2010; Switzer et al., 2010; van Kuppeveld et al., 2010;Simmons et al., 2011). It is however intriguing that the only positive results were obtained in these patients. On the other hand, in both cases the positivity could not be confirmed by the amplification of a different virus gene. The proviral DNA amount was very low in our patients, which might explain the stochastic amplification of a single virus gene in each of the two positive patients. Another possibility is that only fragment of virus DNA might be present in biologic samples. In conclusion, while it appears established that XMRV/MLV sequences are not detectable in a significant proportion of CFS patients, the frequency and the role of evolutionary relic retrovirus sequences potentially detectable in the human chromatin remain to be further elucidated.
That doesn’t sound so negative to me…
We Shall Overcome performed by Bruce Springstein after the recent tragedy in Norway