A Tempest In A Teapot

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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.

last paragraph:
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

62 thoughts on “A Tempest In A Teapot”

  1. It is an appalling indictment of the modern world that “airheads” such as those who attack you Jamie, can create so much mischief and do so much vexacious damage to the cause of genuine patients. I, for one, appreciate all of your efforts and value the intellect and insight contained in your writing about it. Thankyou and please keep going.

  2. The Lombardi study should re reinstated. Bruce Alberts has allowed his emotions and pressure from the Coffin cabal to get to him and he should be thoroughly embarrassed.

  3. Yes Jamie that is the whole point. MLVs infect and propagate in lymphoid tissue. In mice they are found in high titres in secondary lymphoid tissues namely spleen lymph nodes germinal centres marrow and microglia and astrocytes in the brain There is only one study which has ever successfully amplified MLVs in the blood of infected mice and they had to drain all the blood in the animals hearts to achieve this.A particular MRV ( LP-BM5) is used as a small animal model for the behaviour of HIV in humans.The condition it induces is called murine aids. The actual virus which causes the pathology is replication defective.The point is that the behaviour of this virus is very well documented and its life history is known.While it does infect T and B cells 98% of these cells at any one point in time are found in the lymphatic system and not in the blood compartment.The virus infects B cells preferentially and induces clonal expansion and hence does not propagate via reverse transcriptase like HIV.There is evidence that it does replicate via RT in follicular dendritic cells in the germinal centres and hence you would expect to find sequence variants in plasma which you would not tend to find in lymphatic tissue in any great numbers.If the ME gammaretroviruses behave in the same way then you would need entirely different primers and cycling conditions to detect the viruses in plasma ( as per BWG) than you would in PMBCs as per Lombardi et al

    The message is simple really sequence independent amplification with next generation sequencing on lymphoid tissue is needed to detect these human mrvs

    • I find this an interesting point. Therefore, can our lymph fluids/nodes be tested for MLV rather than the endless blood tests we endure?

  4. Throughout most of my career, I was in the mental health field as a clinician and administrator. Your description of Lisa’s behavior sounds like someone who may have Bipolar disorder and is in a manic phase.

    • Lisa admits to being diagnosed with bipolar disorder on her ProHealth message board profile. This is not the first time I have seen her engage in what I consider to be manic behavior.

      • On April 27, 2010 Lisa Petrison (slayadragon) wrote on Phoenix Rising “Lamictal has been hugely helpful to me for the past decade (though with the mold avoidance, I’ve now cut down on the dose without backlash).”

  5. Perhaps we could avoid lumping all “moldwarriors” together on this. There seem to be issues amongst a handful of people. Profiling isn’t serving anyone well.

    • Very glad you commented, Khaly. One of the many sad things in all of this is that the good part of the biotoxin avoidance message is being smeared. Much of it is useful, but it gets lost in displaced anger. It is probably naive but I am hopeful that we can move beyond this. I have been inhibited from writing about environmental illness because I didn’t want to wake a sleeping giant, though it has been smoldering all along. I know you have much to share with us. I’m sorry you are caught in the middle.

      • Let me begin by saying that I have great respect for both you & Lisa. What I’m mostly concerned about now is repairing the fractures that this entire incident has caused to an already divided community.

        There are a few things that seem like obvious areas to target here, in order to get to some sort of sustainable solution that doesn’t further tear our community apart:

        1) Why is Little Acorns, an organization that takes 10s of thousands in donations, not established as a 501c or using a pass-through entity? A fiscal sponsorship can be set up swiftly. As the person receiving these monies as what can be construed as a partnership http://www.little-acorns.me.uk/treatment.html I think you would be wise to demand proper & transparent accounting. .

        Although a certain amount (last I checked, $13k) can be donated as a “gift” to an individual without taxation, Little Acorns is not an individual and is in fact providing a service as a pass-through. Therefore, in theory they may need to treat all monies receive as taxable income if they don’t establish or pass donations through a non-profit entity.

        In other words, the status quo is nothing short of a landmine.

        2) I agree with Khaly: the investigative efforts of one person who happens to be a prominent mold warrior does not mean her investigation has anything to do with “mold warriors.” I am offended by what Khaly described accurately as “profiling.” The fact that myself and others make an effort to avoid biotoxins has nothing to do with Little Acorns, Andrew, or anything else you’ve been discussing in your last few blog posts. Your comment to Khaly above appeared disingenuous, considering that in this case, you’re the one responsible for the smearing. Lumping in an entire group of innocent patients, whom are just trying to get well via an unconventional method to regain some quality of life, might get more people on your side (considering the popular opinion about the leaders of the movement). However, no number of emails & comments supporting you makes this act any less uncalled for. I trust that you have (you certainly used to have) the equanimity to see that wrong is simply wrong. I respectfully ask that you edit out all instances of “mold warriors” when referencing the actions of a single person.

        • @ citychanger, I want to answer more fully, but don’t have time now. I do want to say quickly however that my response to Khaly was in no way disingenuous. I was glad to see her post, and you as well. Be back tomorrow.

        • 501 is an American code. LA is based in the UK.

          LA say they didn’t raise the amount you quote.

        • @ citychanger,

          Unfortunately, it’s more than one person. I’ve been ignoring/enduring libel and defamation of my character for at least a year and a half now. It is at least 3 people and sometimes newbies who also attack me in public, until they become disenchanted. Although I blocked Lisa Petrison, Erik Johnson and Jill Neimark on FaceBook, I am regularly sent things that they have said about me that are nothing but lies and innuendo. It generally boils down to a rant about some “lie” I supposedly told. Nobody has ever told me specifically what that lie was, but I suppose it was that I was given the Truth and didn’t make it my life’s mission to practice accordingly and disseminate their message for them. Now a complete stranger has declared she wants to go after my licenses based on what she has been told by this group. The recent FaceBook discussions that have been sent to me involve all 3 “mold warriors”. You can respect Lisa’s ideas and still recognize that she is a very sick, paranoid woman (see comments this morning) who is using me to play out her own psychodrama. But she is being aided and abetted by others, including Erik, who uses Mold Warrior as a handle. They have been lying in wait for a patient to get angry at me so that they could use it to destroy me. Premeditated. I’m lucky nothing actually went wrong with this case. What they have accomplished is to reduce access to care. The community should be outraged.

          I did pause before using the words “mold warriors” as a description for a group, because I have great respect for Ritchie Shoemaker and did not wish to disparage his work in any way, or his valuable book by the same name. However, I have written to him in the past to show him that this group was “taking your name in vain” and asking that he do what he can to make them cease and desist; he chose to ignore it. Now I feel the need to not only protect myself, but to warn newcomers, as a public service. The phrase “mold warriors” might well be their introduction to the subject of environmental illness, which makes them prey. It seems to me that if you still want to designate yourselves that way, then you need to clean it up somehow, since it is now so tarnished. I have no idea how.

          The fact that they have many good things to share, but do so in a hateful, paramilitaristic way, is the saddest thing of all. I am not disparaging the idea of avoiding biotoxins in any way. In fact, I would take it further and eliminate toxins in your food as well. The irony in all this is that I have avoided writing about environmental illness, which is a long standing interest of mine, because I didn’t want to deal with their craziness, hoped by being quiet they would go away and leave me alone, but the “high road” didn’t work. They came after me. Not sure why you think it’s me that did the poop smearing here.

          Maybe it’s a good thing that it is coming to a head. It has been a boil on the surface of the community for a long time that needs to be lanced. And that does not mean that I have no compassion for Lisa Petrison, by the way. I hope she gets help.

          Warmly, believe it or not,
          Jamie

          • Jamie,

            I knew you were referring to either 2 or 3 people who post about their discontent with you on facebook openly. However, if you were willing to refer to 3 people by name (whom mostly have different communicate approaches & agenda than most of their followers, or ex-followers as anon alluded to below) in your public comment, there is nothing preventing you from doing so in your actual blog

            To be clear, I share some of anon’s concerns below. However, the point of this blog & comment should not be about Lisa’s state of mind. I’m sure any concerns about her private life & treatment can be addressed offline. I don’t believe Lisa, in all of her comments, has raised concerns about your mental state or private life in public. I’m not in a position to judge anyone’s disease state so I’ll return to my main points here:
            1) How the LA money is accounted for (whether they’re actual registered as a charity in the UK, accounting for donations according to UK tax law)
            2) Why you insist on lumping “mold warriors” with the 3 most outspoken out of tens of people that simply avoid biotoxins as a treatment without touching the politics of “mold” with a ten-foot pole.

            Personally, I’ve always preferred the term “biotoxin avoidance” (and hence, biotoxin avoiders, not warriors) because none of us actually know for sure why avoidance can benefit and even eradicate PEM, in my and several other patients I know personally. Also, many of us wish to move forward with a label that doesn’t conjure up all these emotions. I don’t subscribe with certainty to the ick phenomenon, although I listen to Lisa & Erik discuss it with interest. What I do know is that by living in the middle of the desert, I can hike 5 miles without PEM (or play 2 hours of basketball), lift weights, and be fine the next day. That’s what I know with certainty, and that’s what many other avoiders focus on: the results.

            And that’s the real point: the extraordinary results for patients whom were characterized by top ME/CFS physicians as “classic ME/CFS” have been clouded by the “mold” and “warrior” labels and personal axes to grind. Please do all the people whom have benefited from or are interested in this treatment a favor by not throwing us all in the “mold warriors” pot and then boiling us publicly. Refer to individuals by individually. By profiling us all you’re doing is preventing other patients from hearing our stories, potentially benefiting, and garnering the attention from researchers (a long shot, but also one goal that all of us avoiders can unequivocally agree upon.)

            • The problem, citychanger, is it isn’t just 2 or 3 people, because there’s a continual ripple effect. And yes, I have multiple accounts of felony medication management. That’s the illegal part, but what about all the people that have written to me who changed their lives, spent a lot of money and it didn’t work? There has been no honesty about the negative results and most of the people who have been harmed are afraid to speak out. I’m happy for you that it is helping you, but it is dishonest to say that it helps everyone, or even most. The reporting from the group has not been accurate or honest. The “mentors” are pretty clearly still sick too. Btw, I didn’t solicit any of this information. It came to me spontaneously, because I was being unfairly attacked and quite a few ex-followers thought it wrong, especially given what they knew from the inside.

              • If you have accounts of felony medication management, please release them. Until you do, that is an unsubstantiated claim.

                I have personally spoken with patients whom this has not helped, but most people I have spoken with have benefited. However, I admit that I don’t have a grasp of the entire sample size, so I don’t have the right to say it definitely works for most.

                Do you know the exact sample size, and can you factor the “reports” you’ve received into this sample size? Until then, how can you say with certainty that it hasn’t helped most? If you don’t know the exact sample & haven’t collected data from most, then any conclusion you state is equally lacking in objectivity.

                • citychanger:

                  I’ll go anonymous here too, given the nuttiness of the environment.

                  No, we aren’t talking about scientific “samples” here. But Jamie’s observations are based on extensive clinical experience and on her access to information on a broad array of patients. This isn’t equivalent to a formal scientific “sample,” but it’s a heck of a lot more meaningful than the claims of a rabid evangelist like Lisa or than the “sample” provided by a self-selected internet community of her followers.

                  I’ve read a fair amount of what Lisa has written, and I find it scary the way she wields a remarkable pseudo-professional style and tone to create the aura of authority. She’s a scary creature, and I feel bad for the people seduced by her.

              • “what about all the people that have written to me who changed their lives, spent a lot of money and it didn’t work? ”

                I’ve always wondered about that, if Lisa/Erik/etc. were honest. I’ve asked Lisa Petrison on a forum, one time, about the people who didn’t respond to mold avoidance. She ignored the question. It reminds me of Dr. Cheney sending people off to Latin America for stem cell therapy – there is no published data, per se, just an extreme measure wholly endorsed and pushed by people with influence and compelling personalities.

                I showed one of Lisa’s lengthy descriptions of mold toxicity to an MD friend of mine. Lisa apparently doesn’t even have the basic science knowledge down about how the immune system works. To someone who had spent years study medical biology, Lisa and Erik’s theories were essentially nonsensical.

                Lisa has also never addressed the people have improved and even recovered with little thought to mold or avoiding it. (Or people like me who fluctuate with absolutely no treatment outside of pacing.) This illness, if it is indeed a homogenous illness, needs firm, objective evidence showing improvement for ANY treatment.

  6. Jamie, I don’t know you and I don’t know anyone with ME. I’ve been following you as an autism biomed mom with POTS. I’m also a lawyer. You’ve always been very clear and thorough with your remarks, explanations, ideas, and intents. Sometimes I wonder if the haters aren’t all genetically compromised and environmentally affected, and, if so, how much worse it will be in 10 or 20 years when people have even less ability to think clearly. Thank you for being so open. Thank you for thinking outside the box. Thank you for helping others. Thank you for fighting, albeit reluctantly. Thank you for not giving up. And, most of all, thank you for not taking the “high road,” to the extent that would include not responding to accusations. Unfortunately, in the age of Brian Deer, the high road just isn’t possible anymore. In the meantime, we live in an Idiocracy (movie reference!), and yours is a voice of strong reason. Thank you.

  7. Khaly is right to point that out. Toxins and pathogens need biomedical investigation regardless of personalities, and lumping people together is harmful.

    For the same reason, I implore everybody to stop using the term “mold warrior”. It has been harmful. (And cyanobacteria are not molds, so why use the “mold” label?)

    The real problem is that all discussion of ANY severe fungal issue, in any neuroimmune forum, always gets derailed into unrelated pro and con on the “ick” theory.

    Not all mold diseases are “ick” issues.

    There are sufferers (including severely multisystem severe ICC) who require large quantities of systemic antifungals and many other measures (Nystatin, highly restricted diet, no exposed paper in the house, etc.) If they do not do this, they get much sicker. High RIA antibody titers to many fungi. The problem never goes away even after more than a decade of antifungals. It is an immune issue.

    What the ick warriors describe is not the same thing. The facts are different.

    Yet it is impossible to even bring the topic up without being drowned out by the ick war.

    If you think having a politically invisible serious disease is bad, try having, in addition, severe fungal issues that are invisible to even the people in the movement.

    Please say “ick warrior” (or ANYTHING instead of the misleading “mold warrior”) when you are talking about the ick theory.

    And please note that I have not taken sides on the ick theory in this comment.

  8. Stay the course, try like heck not to get distracted from the biggest picture. You and your work WILL prevail. Stay tough amazing woman.

  9. I should point out for clarity that I am of course not referring to Jamie or Lisa or Khaly or anybody in particular.

    The term “mold warrior” unwittingly misleads by lumping different diseases (and hypotheses) together.

    As for the paper, I would really like an unbiased executive summary of the current state of retrovirus research.

  10. I wish I didn’t have a dog in this fight. I was involved in a mentoring relationship with Lisa for years, ending just a few weeks ago when this manic phase began and she wrote me and several other group members abusive and threatening emails from out of, seemingly, nowhere. We had a private google group for people new to or experimenting with mold avoidance. Lisa did not manage the group, but had been invited aboard as its mentor and the person to answer questions. She had paranoid delusions that no one could trace to anything within consensus reality. (Lisa was convinced one group member, a disabled, non-practicing, non-licensed lawyer with no experience in litigation was threatening to sue Lisa “if you read between the lines.”) It is my understanding, from an email forwarded to the list, that this person received severe harassment, often thousands and thousands of words worth, including veiled threats. People who tried to gently address Lisa’s paranoia by saying she was safe and no one had threatened her, this must be some sort of breakdown (some of us gently suggested contacting the doctor who had prescribed her Lamictal for bipolar episodes last time) met the same treatment, some worse than others. Almost everyone on the group received abusive email (some reams and reams of it). I did not reply to mine and received hounding until I did. She then sent an odd and very long “apology” for her behavior, admitting to being under the influence of the “ick.” After that apology, worse and more explicitly threatening letters went out to longer term friends.

    These are people Lisa now calls “former followers.” Followers! I am lucky that she barely knows who I am. I heard from 3 others that they are concerned for their safety that Lisa knows where they live and are afraid to speak out because of that. In none of the cases did that seem like a melodramatic concern. Especially in light of the fact that Lisa, after being banned from the group in question and losing most of her long term friends, simply chose a bigger target in Dr. Jamie Deckoff-Jones and kept working with manic energy. She was probably churning out just as much volume in stalking and threatening personal hate mail before she switched to this (after being banned/blocked by the people she harassed and having her family contacted).

    Mold avoiders and the me/CFS community, we need to clean house. Lisa has long been the spokesperson for a respectable cause. She is now acting abusively (and I am just talking about toward other patients, not this fiasco) and giving us a bad name. It has pained me to lose a mentor and to watch someone unravel. I take no pleasure in it. When people egg Lisa on, though, it is enabling bad behavior and delusions of being able to act without consequences. There are people hiding from Lisa who once put absolute trust in her. Not because they had a fight, but because Lisa decided they were disloyal out of nowhere and attacked them, in some cases with implicit suicide threats. Should this person be recruiting sick people for (no doubt) another supportive mailing list for young people? I think that we need to address this behavior. Lisa *should not* be shunned. Neurological inflammation is a devastating part of this disease. Lisa does need to be helped. Her past needs to be accounted for and public knowledge, so the newly sick do not fall under her sway. She is keeping many people from the benefits of knowledge of biotoxin illness with her behavior, I think, and keeping Erik Johnson from the recognition he deserves. He knows it. I admit that when I first received poison pen letters out of nowhere from Lisa (and others forwarded me theirs) and then witnessed her paranoid breakdown, I momentarily could not separate the two: the message and its (very loud, very authoritative) messenger.

    Finally, whether or not Ms. McMurdie’s side deserved to be heard, the way Lisa went about getting the message out was irresponsible and reckless (like manic people, well, are). She represented herself as a reporter and then did not protect her sources with what she published. The problem is that she did not just endanger herself for libel/slander charges (which would certainly stick in this case, and be substantial) but also her sources. One source who said things that were clearly libelous is the landlady in Hawaii. A journalist would have known to leave those things out. Lisa’s impulsive publishing of this document potentially took other people down with her. Like she is bringing mold avoidance down with her.

    Lisa, if you are reading this, I admired you so much. I called you my mentor. I think you need to be honest with yourself and with others about your current mental state and your capability to help people in the ways you want to or promise to (now, in the past, or ever again). It is okay to have boundaries and be unable to travel to help sick people and babysit them. It is okay not to be able to personally counsel people. It is okay to be bipolar. The only shame is not recognizing these limitations and in abusing people when in manic states and not being willing to prevent them. Then I think you need residential treatment for awhile, because you have been in this state for awhile. I am afraid for your own self destruction and for other people you could abuse. The worst fear about being sued into the ground seems to be something you are now actively courting. Find somewhere where you can get sleep and get that break from saving the world that you wanted. I’m sure you know who this is; it’s nigh on impossible for me to hide my writing style. I know a couple places in the BCBS network, having (as you know) researched this myself.

    • Dear Anon,

      Thank you for having the bravery to speak out about this in a public forum. It is clearly risky for you to do so. I appreciate that you are willing to make this statement for the greater good, I have heard back channel that there are others with your same message who were not willing to say anything due to their own same fears of retribution.

      How in the world did we get to where we are today? A guest blog post was written by the mother of a young woman who is doing quite well with Dr. Deckoff-Jones’ protocol, which inspired a kind hearted ME patient to try to help a sick child in Ireland. From that noble start we are in this mess today.

      I too am choosing to post “anon” so that none of this insanity gets aimed my way.

  11. Also, I cannot stress enough to any prospective avoidance patients who may be reading this and may be consulting with Lisa. If your avoidance experiment (camping, staying at a hot springs, traveling, whatever) cannot be accomplished without depending on Lisa in some way (any way), please do not do it. Wait until you have the funds and support from a carer (if applicable) to do it independently. While Lisa has been very generous with her time, resources and expertise in helping people on these trips, she is not dependable and the risk of being abandoned far from civilization when one is as sick as ME/CFS patients are is too great. She has abruptly cut off contact and help with at least three ME/CFS patients I know of during avoidance experiments she was helping to facilitate.

    If you need her to store your food, don’t go. If you need her to care for you, don’t go. If you need her to give you replacement belongings, don’t go. If you need to borrow things from her, don’t go. If you need her to remain in contact with you during the experiment and aren’t yet comfortable, don’t go. If you need her to help you settle in, don’t go. She is unbelievably generous; she just wants to help more than she can; she does not recognize her limitations and puts sick people in precarious situations. This has been dangerous. It will continue to be dangerous as long as she keeps “helping” people.

    • I agree with anon that if you need Lisa in any way shape or form, you should not go. However, I think you are mixing up the idea of Lisa as a caretaker and Lisa as a “mentor.” Lisa helped me on my first 2 trials into the GFD with avoidance. If she had left in the middle of my time there, regardless of whatever struggles I was having, would I have been unhappy? Very! Would I have blamed her? No I don’t have that right. I was responsible for my own survival, and I knew this. If I were too sick to hack it out there by myself and didn’t have family support to bring me home if necessary, I never would’ve tried this.

      Lisa never described herself as a caretaker or a doctor to me, just someone whom would serve as a guide & assistant on my trip within her capacity. Lisa made herself a target by reaching out to others & helping them (never taking a dime, by the way), and from the surface toeing the line between helper & physician. However, in my knowledge she has not actually crossed the line. You put your life in her hands, and now you’re making her out to be “not dependable” for a role that she didn’t offer to, nor is legally allowed, to fulfill. If you have documentation stating otherwise you need to provide it. Until then, what happened to you is an unfortunate turn of events but blaming it on Lisa is unsubstantiated.

  12. Possible CFS/ME etiologies is being described by many researchers. It seems some, thankfully not all, are like “the 5 blind men touching different parts of the elephant adamantly describing an elephant”. I am thankful for honest humble researchers who realize this probability in CFS/ME research. I also appreciate those researchers and knowledgeable people, with CFS/ME or without it, who are humble enough to say “I don’t know” or “I’m not certain”.

    The last thing we need as researchers & CFS/ME sufferers is division & distraction.
    I am saddened by the amount of time,attention, & energy given to “Tempest”. I am sad for you, Jamie. You are greatly loved and greatly appreciated. Stay the course. Keep up the good work. May your husband & daughter, who are naturally hurt when you are maligned & hurt, take courage. May we all remember that “Some things are like feces, the more you stir, the more the stink”. Avoid loud & long “stirring”. We humans can agree to disagree without labeling or demeaning another.

  13. Tried deplin based on this blog , had no improvements , and sudden onset of unfamiliar symptoms ; migraine, stabbing abdominal pain, and daytime sleepiness to list a few.
    Researched this experience to discover that Dr. Cheney specifies folate as disastrous for the majority of me/cfs patients, along with NAC and some other things.
    Cheney also says the morbidity of me/cfs is worse than all but a handful of diseases. As do Peterson and several other physicians specializing in it for decades.
    Love, money, and being ones own doctor make all the difference

    • Dear Rick,
      It would be unusual for Deplin to cause the symptoms you describe, but as I have said here repeatedly, the tough thing about treating ME/CFS is that for every intervention, no matter how safe, there is someone who was made worse by it. The safer the intervention the more likely any worsening will clear quickly when stopped. With this disease, the choice to try anything may be worse than the decision to do nothing. Another thing that makes it very difficult for patients is that the doctors who treat the disease are often in disagreement about what they believe is and isn’t advisable. Mostly nothing works and everyone’s patients are still sick. Trying anything involves a certain amount of risk. In general, too much Deplin causes dose related insomnia and sometimes nervousness. The adverse effects can occur alongside other good effects. In my practice, I have seen 2 idiosyncratic reactions (one felt weird and one gained weight) that cleared quickly when it was stopped. Both of those patients are trying very low dose OTC Metafolin. For some people, even high dose Deplin is like taking nothing at all and for some it is hugely helpful.

      • I had a weird reaction to a benign treatment recently. After my first ever saline IV drip for orthostatic hypotension, I began to shake violently – as in gross motor. Thankfully, it subsided after I excreted enough fluid. As you’ve said, Jamie, Start low, Go slow…even when you think it’s not warranted.

      • Thanks Dr. J,

        Thanks Dr. J,

        Yes. 1 week after stopping the 900 mcg folate , all the adverse reactions subsided completely . Only try 1 new thing at a time.
        Researched and discovered that folate is histimic. And the only headaches I ever get are with allergic reactions.
        NAC was the last I had gut-knife pains , and even worse than folate. Most of Cheney’s pts have bad reactions to glutathione, NAC, and folate.
        Looks like Andrews mother is allergic to love—the best medecine you give.

    • Rick,

      It would be much appreciated if you would provide the website that sites Cheney, et. al. commentary on ME morbidity.

  14. The location effect (including being close to tropical seas or else mold avoidance) is the only thing that now has a significant success rate in allowing ME/Fibro patients to lead normal lives. Since the medical world won’t pursue this clue, I am grateful for patients that do share info on it. These patients aren’t paid for their help, but are filling a void left by paid medical professionals. These patients are the only hope for most ME/Fibro people.

    • Although it could be possible that mold could be an issue for some. I don’t agee it is the “answer” for all ME/Fibro patients. I tried the questran protocal a few years back. It was one of my many attempts at various “treatments” I’ve tried over the years. It did zero for any of my symptoms.

      What has helped is the avoidance of certain foods that I’ve discovered over the years were causing increases in my symptoms.

      When I look now at the foods I do eat it is quite apparent that the foods I choose are ones that would be considered helpful for my mitochondria. Funny how the body seems to realize what it needs and what hurts. I don’t like increases in my symptoms, and I am very disciplined with avoiding the things that make me sicker.

      Several months ago I also started adding nutritional support which has helped to contribute to a very positive increase in my level of functioning. Basically I have had more energy.

      So the statement that “these patients are the only hope for ME/fibro”, I just don’t agree with. I’m proof that other measures can make a difference.

  15. I would like to add that due to the lack of research into the possible biomedical research, testing, and treatments, it is currently not fully known what may help for some and not, (or take longer/need changes for others). I think this is true for the use of any.types of help related to this. Unfortunately it is not a one size fits all illness. We can thank those that have helped to classify us as having a psychological disorder. And we can also thank those that helped give it a name that minimizes the reality of what patients really experience on a daily basis.

    It’s interesting too that my daughter-in-law recently had one of her final prenatal checkups. The doctor said she and baby were doing exceptionally well. The doc was quite impressed with her iron level as many women her age might be anemic at this stage of the pregnancy. My daughter-in-law has continued to have high energy throughout her pregnancy as well. She says she feels great.

    I also know that high levels of stress has been another big factor throughout the years in the level of severity I have experienced with illness. That has been consistent over the last 18 years. Although just living day to day can be stressful very high levels have been harmful.

    I recently experienced a very high level due to work and personal reasons. This as a result I believe caused my thyroid to start malfunctioning. My brother experienced the same thing years ago as did my sister. With the right medications the hope is it will resolve itself. It was caught early. But I know that I also need to avoid high levels of stress at all costs.

    It seems there might be many in the community that also experience thyroid issues as well from what I’ve seen written in the patient community. It makes 3 in my family so far. I don’t recall any other relatives having thyroid problems.

  16. Citichanger, If I were going to release anything, it would be to authorities. Since Petrison is itinerant, and may have committed crimes in multiple states, I’m not really sure who to call. I would never publicly post anything, because some of it was told to me by people who are afraid of my doing anything that might reveal their identities. Some of it exists somewhere in the blog comments from long ago. I went to look and realized that somehow, in changing the comments to moderation, 7340 comments are now inaccessible. I’m sure there’s a way to turn them back on, but I realized I don’t care enough to figure out how right now. Nor am I interested in searching through back email. Something involved you, didn’t it? But there is enough being sent to me spontaneously in the present tense to establish a pattern of behavior without it.

    I want to look ahead, not be searching old blog comments for “evidence”. I want to stop spending my energy countering lies and worrying about being stalked by crazy people. Lisa, Jacqueline, the landlady, Erik, Jill and all the people who have been fooled by them, amazing as that is to me since the false statements are so transparent, I want them all to go away. I would like them to take down all their lies. They don’t seem to understand that the things they are doing make it more likely that some authority is going to come to me, from some country or another. This is very peculiar to me, since they are the ones at risk. They can only cost me peace of mind, and possibly a little money, but that’s it. Fortunately for me, there is nothing there. I have no real exposure from this case. Everybody agrees, Andrew is better. I got an email to that effect this morning. So why do I open mail about this every single day? She didn’t like me. She changed caregivers. She got what she needed, according to her. So why is she still attacking me? For absolutely nothing? I am the wronged party. I have dozens of instances of libel that have been sent to me. With proof of damages. Maybe I should pursue it.

    Until lies about me are removed from the internet, I am forced to defend myself, though I want to put it behind me. I did nothing that could possibly result in loss of license. I haven’t lost any patients over this and I’m not looking for new ones. For now, the blog holds here, in the comments of this post, until this is over. Maybe indefinitely. This has caused me to look back at what I’ve written here, which I don’t usually do. The message is not easy to access anymore, because it’s so long. Unless someone reads regularly over a period of time, it is subject to misinterpretation. A lot of it is now old news and not worthy of attention. I’m more concerned after this recent experience of people getting it wrong than I was. My energy would be better spent on a book. However, the next thing I’m going to work on is the formal family survey. It went on the back burner for my practice. I’m not starting new patients for the time being, so I should have the time in the coming months. I welcome the opportunity to work on something important, instead of dealing with BS. Please check back periodically to participate in the survey.

    The comments here are now moderated. The only ones I’ve excluded so far are people wanting to use my blog to hurt me (2 angry messages from people who have bought into lies, and one from Lisa incredibly asking me to post her point of view). I’m also going to put an end to the debate about the merits of citychanger’s argument. Please use your own blog. I acknowledge that my sample is biased against, but it is a significant number of treatment failures. Not that I am, or ever was, against someone trying it if they want to. I am a therapeutic libertarian who advocates safe things.

    This whole experience is a great example of how you never know what to worry about. I worried about Andrew not doing well, but that’s not went wrong. I’ve worried a little bit about some retaliation from regulators or government because of being outspoken here. But the attack came and is still coming from other patients. That astonishes me. Patients trying to lynch a doctor taking care of other patients when there is such a shortage of help. Patients trying to stop a doctor with the disease, who has a daughter with the disease, both doing relatively well, despite the best efforts of some to bring it all tumbling down. Patients trying to stop a doctor working to illuminate a way out of severe suffering. This is why so few doctors want to take care of the disease, besides the fact that they get sick after a while. I have an email today that shows that Lisa et al were gunning for me and Little Acorns on the day Andrew’s treatment with me was terminated. Did they contact Jacqueline before that? Were they responsible for the break down in the relationship? I have a private message from Jacqueline shortly before she changed course that said “I trust you with my life.” Who changed her mind?

  17. Hi…first of all, can I just say that this is first time I have posted on someones blog so apologies if anyone feels what I am about to say is inappropriate or unhelpful. I have been driven to speak out as someone who thankfully doesn’t suffer from ME but has been and still is involved in the fundraising efforts of Little Acorns in the UK. I has come to my attention that through a third party, Jacquline is making demands of an apology for the actions that JDJ and Little Acorns have taken during this whole sad process. I have a few questions for Jacqueline and this 3rd party. How about an apology an apology for all the pain and heartache inflicted on a number of very sick people during this process? How about an apology for making some, if not all, of those sick people significantly sicker? How about an apology for taking my 9 year old daughter’s caring heart for granted (she organised a fundraiser at her school, raising around £500, totally without help or prompting from me)? How about an apology for giving hope to a group of people who have been without hope for a very long time and then snatching it away through your own selfishness? How about an apology for putting you own ego/pride/whatever you want to call it infront of the needs of your own sick child? I must stress that this is written from the perspective of someone who doesn’t suffer from this illness (but cares deeply about the people who do) and is, in a way, a bystander who has kept his mouth shut for too long……….

  18. Okay, here’s what I don’t get. Lisa Petrison, Jill Neimark, Erik Johnson, and others are pursuing a rather aggressive form of bold and biotoxin avoidance. If you think the idea has legs and you want to pursue it, by all means do so. But don’t for a second be fooled into thinking any of these people are doctors, or are even wholly healthy themselves.

    And if you don’t, then don’t. Choose some other course of treatment. Choose a combination. Choose, if you’re like most of us and desperate, to try one thing at a time, slowly, and see if ANYTHING helps. Sometimes a combination of things work. Personally, I use herbs, moderate toxin avoidance (which means I try, but I don’t live alone in a trailer in the desert wearing a little tinfoil hat), and, gasp, Big Pharma.

    Whatever you choose, what business is it of Jamie’s? Why involve her in this mess? She’s choosing to treat patients with what worked for her and her daughter, which is logical and awesome.

    Why is anyone–Lisa Petrison, CityChanger, or any of the commenters–comflating these two different paths to potential wellness, or at least betterness?

    As someone who has consulted both “mold warriors,” “ick avoiders,” CFS “specialists” and psychics, I urge every patient to be their own advocate and to keep the boundaries up. Question everything. Assume nothing. There are no single solutions to this mess of an illness. Everything has the potential to make you sicker. Some things have the potential to increase your level of wellness. Some things will have no effect on you whatsoever that you can discern.

    There is no cure. There is no fully recovered, never have to think about it again. Not yet.

    And no matter who you consult, from a random person on the internet to a qualified licensed physician to the Great and Powerful Oz, understand that no one has a lock on this. No one. Caveat emptor. Use your own judgment.

    And hey, about some basic human kindness while we’re at it? Could we do at least that much? Whether we agree or disagree on what course of treatment to take, could we agree that we’re all suffering and struggling and it sucks?

    I’ve had it with groups of any and every sort at this point. Which is sad, because I–all of us–could use information and support. But I’ve watched every single forum or group devolve into a shitstorm of accusation and paranoia and personal attack.

    I applaud anyone out there who tries to help others. But know this, those in search of answers, of help, of support. Take responsibility for your own decisions, your own path, your own life. To depend on anyone–doctor, friend, shaman, or faith healer–to be responsible for your life is lunacy.

  19. I received life-changing treatment from Dr. Jamie Deckoff-Jones in November of last year. The oxygen, neurofeedback and Deplin have made a big difference in my life, allowing me to be both more comfortable and more functional. Under Dr. Jamie’s instruction, I reduced my intake of drugs by 50% initially and have since reduced them by another 25%. Per Dr. Jamie’s instruction, I have started the Specific Carbohydrate Diet
    (twice) and have noticed a good increase in energy as well as a good decrease in stomach pain. I have received a modified Myer’s Cocktail locally ( per Dr. Jamie’s prescription) every two to three weeks, which also seems to help. I have received monthly visits via Skype with Dr. Jamie to help me get back on track and stay on track and continuous support via e-mail. I am alive today because Dr. Jamie Deckoff-Jones is my doctor and I am very grateful to her.

    • Thank you, Patricia, for letting us know that. I’m so glad you have improved. We need more doctors that will give us these options so we can be treated locally. I applaud Dr. Jamie for trying to help us.

  21. I agree with Robin that this illness(es) needs objective evidence for any treatment. That’s why I’ve been trying (vainly) for 10 years to get some one
    with credibility to investigate why so many ME/Fibro people tell me they’re well enough to lead normal lives while close to tropical seas.
    The majority of ME/Fibro people I’ve heard from who’ve been close to tropical seas went into remission for the period they were in that location.

  22. I’ve lived a fairly normal life with it and live no where near the tropical sea. Quite the opposite.

    • I’m glad you’re well enough to lead a normal life. It
      must be wonderful to be well enough to work full time
      if you wanted to, and still have energy left at the end
      of the day.

      It’s too bad there are very few ME / Fibro people who
      can say the same at present.

      • It’s not that I “want” to workfull time. It is a necessity. I said fairly normal life in that I conserve most of my energy. It’s then used to be able to work sitting in a chair for 8 hours a day. So I guess that is more normal then most patients.

        Also adding the nutritional support and the major diet changes I made years ago is what’s helped me.

        Nothing to do with mold avoidance.

        • Dear God. Can we PLEASE stop the infighting and comparing? No one who has CFS/ME is glad they have it, or lucky to have it. Some of us are more functional than others. Some of us can trace (or guess) to what to attribute our recovery (or possible remission, with a relapse in our future); some of us have no frickin’ clue. Some of us respond to avoiding biotoxins; some of us don’t. Some of us do well at high altitude; some of us blossom at sea level. Some of us respond well to big dietary changes; some of us, it doesn’t seem to matter what we cut out or don’t. Some of us have the stamina to work (usually sitting or lying down); some of us do not. Some of us can work sometimes, and not others.

          The reason boards and groups and blog comment threads almost universally suck is that inevitably it comes down to a pissing match about who’s right in their treatment approach, who’s sicker, who’s luckier, who’s malicious, who’s WRONG and must be corrected, etc.

          Haven’t most of us been around the block with this thing enough times to realize that there is no universal shining truth in sight so far? No one way to pursue a higher degree of wellness, no one silver bullet, no big AHA that will cure us all? Might there’ll be one, someday. I don’t expect it to happen within my lifetime.

          In the meantime, I am doing the best I can with what circumstances, including health, financial, emotional, responsibilities to others, etc., I have to work with at any given time. I don’t preach the gospel because I don’t know what the hell works for anyone but me. Sometimes I don’t even know that.

          I remember at one time telling my family how “lucky” I was that I wasn’t bedridden, that I didn’t need to use a wheelchair, that I was pretty functional. Until I became bedridden and had to use a wheelchair and was essentially non-functional. Then the pendulum swung the other way, and for now, I can do more things again.

          You’d think we all have our fair share of challenges and misery without inflicting it upon each other, too. Nobody is “right.” Nobody is “wrong.” That person who thinks someone else has it “better” than they do? You can’t possibly know another’s truth. I could be able to walk long distances but be in cognitive and emotional hell. Or I could be pretty happy but couch-bound. Or anything in between.

          The degree of judgment being wielded on this thread, on other threads, on other posts, on other blogs, on boards and forums, is so disheartening and enervating. Please. Please. Please. Be kind to each other. For some of us, kindness is all we have left.

          • Since you mention Erik Johnson, I’d like to remind people that he climbed Mt. Whitney
            several times since practising avoidance.

          • I agree what works for one may not for another. I posted what worked for me and what doesn’t or has had no effect. I’ve also seen first hand how what works for me also works for some, but not for others. So like everything since we have no research testing or treatment everything is a guessing game. For each of us individually. I’ve been my own advocate and found out for myself what worked and what didn’t by trial and error.

            I know some that could work for several years and some bedridden from the start. Some that have gotten a bit better and some who have gotten a whole lot worse.

            I also feel very sorry for the patients that are the sickest as it could be me one day. All I know is I want no one to ever suffer one loss that I have suffered. And I will feel that way no matter how sick I may become.

  23. To biotoxin avoiders/ mold warriors: Many of us have been on the same groups for many years and have observed and/or interacted with Eric Johnson. His advocacy strategy would be obvious even if he didn’t sometimes state it. You know what it is.
    So how’s that been working? Not very successful is it. Maybe you should consider disassociating or at least distancing yourselves so that it doesn’t have cultish aspects? It seems obvious that major changes are needed.

  24. June 16th 2012 posted for Jacqueline on Little Acorns Website:

    Another lovely update from Jacqueline and Andrew

    “Well have we got a great day. Went to 2 beaches the second had golden sand and with help andrew was able to go on to the sand and sit for nearly an hour and he was digging in the sand lovely to see my baby doing normal things.

    Then with the order still standing for steak and chips we headed to a lovely restaurant and there we had a beautiful meal. Andrew was all crack and then Dr Jamie asked hows the pain level and he turned and said i have no pain well not a dry eye at the table.

    I gave him the biggest hug ever so emotional as even Jamie was taken to tears. This is all beyond my dreams long may it reign.”

    Jacqueline, were you lying then or now?

  25. Jacqueline Mc Murdie “Well her unprofessional behaviour as lead to concern from a lot of people but i want no one else to suffer the way we have at the hands of this M.E community”

    I find this recent post above on face book from this woman to be insulting to the entire M.E. community. I wish to state my own opinion and that which has been voiced from doctors, patients and professionals who have been unfortunate enough to be involved or dragged into this fiasco and who all agree this woman has done more damage all the way from Ireland to Hawaii than any single human being on the planet.
    The main issue was supposed to be the health of a child but this event has turned into a platform for his deluded mother to once again try be the centre of attraction using her bully and manipulitive tactics on people who are genuinely very physically sick. It is obvious she has no understanding whatsoever of M.E. nor does she care what distress she inflicts on Jamie and patients by continuing her campaign for what? No one forced her to go to Hawaii. It has also been reported on various websites that she insisted on going earlier than planned reportedly from her perceived threat of some sort of action being taken by the child protection agencies in Ireland.
    Did this ‘responsible, caring and intelligent’ mother not research the treatment protocol before embarking on a journey to the other side of the world? If so, why is she now acting like the poor innocent victim of what she claims to be medical and professional abuse? The story does not add up, read the statements sent directly from the mother and posted on Little Acorns face book page as in the post from ‘Helen’ above. This same mother is now asking for privacy when people ask how the child’s health is and she refuses to inform the very generous people who donated their hard earned cash to send the child for treatment in Hawaii.
    What possible reason could there be for keeping the child’s state of health such a big secret now so other desperate parents could decide if their sick children could be helped in some way by whatever methods let her child recover from her reports of sleeping 23 hours a day to swimming, going out for meals, playing on a beach, attending a rodeo and travelling from Ireland to Hawaii and back?
    I have to ask myself what other secrets will come to light concerning this mother’s past history? The most responsible thing she could do now is to concentrate on the initial issue which should be the health of her child. What is all this fighting with LA and Jamie doing to the child’s mental health. These are people who he would have perceived to be trying to help him yet in a very short space of time the mother turned them into demons, again showing her lack of understanding of the effects of mental stress on an M.E. patient.
    There are a lot of people jumping on the bandwagon here with their own personal agendas, who is using who, I ask myself, again I remind everyone to focus on the initial reason for the forming of LA which was to help a sick child. The mother involved should have learned her lesson by now as she is the only person who can put an end to this madness, people are now bored and have lost interest in her tale of woe. She should do the decent thing mainly for the sake of her family’s reputation, for Jamie, for the people involved in LA and for every genuine M.E. patient left to suffer even more critism and abuse as a result of the public nature of this whole sorry eposide.
    There will be no winners in this game, only losers. Other patients have the right to decide if they want to try Jamie’s treatment protocol, we have little enough options and very few doctors even willing to try treatments which they genuinely believe can help us. The mother says she wants no one else to suffer as she has, if that is the truth this time, then she should put her words into actions.
    Enough is enough.

  26. Just a few quick thoughts:
    We have to try to always only write objective information, not about people or attacking people – easy to say, hard to do – especially when someone pisses us off.

    Jacqueline, I hope you read this – As a teacher I was so amazed and thrilled that Andrew could play a computer chess game all day for the first time in his life. Kids who are sick with brain fog and inflammation and ME/CFS symptoms can never do that. Something was helping him. Maybe think back and try to figure out why he was doing better at that time. Was it biofeedback? Something else Dr. D-J was giving him???? I hope you can figure out what and keep it going.

    My case – what has helped or not.
    antibiotics, mainly Zithromax for the Lyme disease
    mold makes me sicker but avoiding it does not cure – I continue to avoid
    oxygen concentrator for about 1/2 hr a day – recommended by Dr. D-J
    Deplin did nothing good or bad for me
    hydroxycobalamin B12 shots perscribed by Dr. Powell – but could not continue taking them – just overwhelming to keep up with – currently taking some kind of sublingual B12 – maybe helping – who knows
    Biofeedback did nothing for me, but I know others who seem to be helped.
    Currently taking wormwood and probiotics and digestive enzymes – so far does nothing
    drinks with potassium seem to help some but probably irrelevant to most – ReCuperation did not help me
    Currently trying drinking water treated with sphagnum moss (purified form) and will post more in a few weeks – pretty interesting stuff and cheap….and, no, I am not crazy – but maybe I wouldn’t know if I was. There used to be a joke about that – if you think you are crazy, you aren’t.

    Peace, folks!

  28. I just read the blog of Jaqueline McMurdie that is written by Lisa Petrison (she says so on her own facebook page she’s doing the writing). What a mess! They brag about how many people have downloaded what they consider to be a reputation ruining document and have a list of demands that will get it taken down. One of those demands is money — Jaqeuline will take down the website if she gets money for more treatment for Andrew. That’s straight up blackmail. Stay strong, Jamie. Keep copies of this extortion. Consider calling the police, especially because Petrison admit to being the one maintaining the site and writing up the list of demands.

    • Really?? So this mother would go away quietly and forget about the accusations against Jamie if she gets the money, just over £2000.00 from Little Acorns?

      Yes, now that really sounds like a woman of principle and truth!!!

      That says it all really.

      • I find it always helps if people actually take the time to read the material themselves before throwing stones. But I doubt people ever will. And not only because ignorance is bliss but because we are patients at the end of the day and trying to absorb it all can be difficult. Still, perhaps some would do well to try.

  30. As much as I respect Lipkin, it doesn’t appear to be “his” study. I don’t hold my breath for any government study, because it’ll be a sham.

    • Yes, if the government had really been serious about detecting the M.E. retroviruses they would have used Next Generation Sequencing. Also the Chronic Fatigue Initiative is not setting up its NGS machine to look for them either – instead just scanning for the 20-30 known viruses already connected to M.E. What a waste of time – but I guess that’s exactly their intention. Unfortunately some of us are running out of time…

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