A Rose By Any Other Name

At this juncture, with the science in an embryonic state, I am in favor of the most inclusive definition. The only problem with non-HIV AIDS is that “Deficiency” isn’t exactly right, though the disease can clearly progress to an immune deficiency, just not a devastating one like endstage HIV. Dysregulation would be a better word. However “Acquired Immune Deficiency Syndrome” unrelated to HIV, is close enough for government work, and the name evokes what it should. Before the causative agent of Hepatitis C was identified, it was clear that there was another infectious virus that caused hepatitis that had a different clinical course than either Hep A or B. This is exactly analogous to that. We will eventually have a laboratory profile that is inclusive of all the cohorts, or maybe I should say, factions.

Neuromyasthenia isn’t a bad name. It takes into account the full history of the phenomenon, but the overemphasis on muscle is inappropriate for many and it leaves out the immune problems. It also brings “the vapors” to mind for me for some reason. I haven’t heard a perfect name. Another new acronym won’t take at this time, even if accurate, because everything is in such a state of flux. It will all be easier when the causative agents are identified. For now, non-HIV AIDS explains it in very few syllables. Even a doctor should get it.

AIDS has case surveillance criteria that include “AIDS-defining conditions”. Revised Surveillance Case Definitions for HIV Infection 2008. If you are HIV positive, whether you get PCP or Kaposi’s Sarcoma, it is still AIDS. Whether you have HIV dementia or not, it is still AIDS. It is the same for us, whether you have HHV-6, Lyme Disease, CLL or ASD.

I don’t like any of the existing case definitions, though most full-blown cases are caught by the Canadian Criteria. Using us, as examples; I didn’t have a viral onset and I don’t have sore throats, fever, adenopathy. I got sick post-partum with various neurological symptoms which were all transient. I was always hyperimmune. I worked in the ER for 16 years; I was exposed to everything and never caught anything. I’ve had an influenza a few times, including Swine Flu, which was no big deal, but that’s it for viral illnesses, other than childhood illnesses, all of which I had naturally before my early teens. However, I had persistent Babesiosis despite lots of treatment, so that’s pretty immune deficient. I have never met CDC criteria. I meet Canadian Criteria (6/6), but didn’t for the first decade of my illness. As for ME? I didn’t have PEM for over a dozen years, though it’s bad now, and I still don’t have problems with cognition or memory. I have sensory deficits. I have a positive Babinski and Rhomberg. I have mini-clubbing that started before my first crash. I have low titers of autoimmune markers, sometimes. I am XMRV positive. I’ve had negative nerve conduction studies. I have been given many diagnoses over the years including chronic Lyme Disease, fibromyalgia, Crohn’s, PTSD, dysautonomia, arrhythmias, peripheral neuropathy, Raynauds, atypical migraines, intestinal migraines, pain syndrome of unclear etiology, most recently CFS. I have recurrent hypertensive crises. I have a sleep disorder from being an ER doctor, predating my illness by many years, but it’s much worse now. I am probably an Ehlers Danlos variant. I have become more flexible with each major exacerbation of my illness. My wingspan is greater than height, though I am short. Ritchie Shoemaker says my genes are “poison”, but Ali “drank” the lesser of the poisons. What do you think I have?

Ali is more classic CFS, though she also had an onset that was related to a major hormonal shift, and her illness responded to oral antibiotics for years. She does not meet CDC criteria. She does meet Candian criteria, except when she doesn’t. No sore throat, fever, nodes. She catches viral illnesses very lightly; barely registered Swine Flu. She has had inflammatory skin stuff since she was little, predating illness. She has a history of treatment resistant Lyme Disease, atypical migraine, a mild cerebral vasculitis and leukocytoclastic vasculitis twice from PICC lines. She has POTS. She has a little brain fog that comes and goes, but is really sharp mostly. Little sleep issues, but not bad. She has PEM, but didn’t always. She has a little MCS. Not much pain. She is XMRV positive. Do you think we have different diseases from each other? From you?

There is aggressive prostate cancer, Parkinson’s Disease, Multiple Myeloma, ASD and Marfan’s Syndrome in our family, which is in no way an outlier. The surveys we are receiving look compelling for demonstrating both the genetic and infectious pieces, as well as associated conditions. Thank you to everyone participating. These informal responses are helping us to determine the right questions and how to proceed. Please keep them coming, even if you are an isolated case. Our intention is to proceed with a formal study. There will be a secondary mailing to fill in the blanks and provide consent for publication. If you’ve sent in a survey, please stay tuned over the next few months for additional requests for information, and if you change your email address, let me know.

It is completely outrageous that the epidemiology has not been formally studied by our government agencies over the last decades, while so many people were getting sick. How did they let this happen? How come the Center For Disease Control has never even looked? An obviously infectious disease spreading through the population for decades. Whole families affected. But they buried their heads in the sand, because it wasn’t straight forward. It was easier to think the patients were lazy, crazy and faking. After all, they were an unusually labile bunch, hard to deal with, quite hysterical sometimes, and so fixated on their symptoms, which any good doctor could tell, couldn’t be a real disease. No wonder the people responsible can’t let it in. Imagine realizing that you were one of the people who allowed an incurable infectious virus to invade a second and third generation, ruining the lives of millions of people. No way to contain it anymore. The health of the species affected on an evolutionary scale. Just because you were wrong. That could make for some serious denial.

So, we will study the family piece ourselves. With talented, sick volunteers. Without funding. For free.

God loves to help him who strives to help himself.
Aeschylus ~500 BC

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42 thoughts on “A Rose By Any Other Name

  1. >Lots to process here. I don't even know where to begin in reply, beyond "Thank you!"

  2. >I don't know what we have, but I'm striving my butt off to figure it out!
    Surviving Mold by Dr Ritchie Shoemaker

    Chapt. 17. The Novice Pilot, CFS and other Medical Mistakes

    page 450.

    Authors note.
    Most of my patients use a pharmaceutical approach to treatment of consequences of exposure, similar to what we would expect from the Greek figure, Panacea. Erik is by far the most successful person I know who treats his exposures, now ever more severe and ever-more common, with non-pharmaceutical interventions, such as what we would associate with the Greek figure Hygeia. In a classic display of the benefits of his approach, Erik climbs Mt Whitney once or twice a year, taking photos along the way. Erik is perplexed that more people don't listen to his theme. Show me a 25 year survivor of CFS who climbs Mt. Whitney, continues to work full time and writes as if he never had been ill.

  3. >I like your comparison to AIDS. It may involve Kaposi's Sarcoma in one and dementia in another, as you say. It is still the same disease. This explains the different cohorts well.

    I hear many who want to divide us all up into many cohorts and then start the studies all over again. Seems more important to find the causative agents and the rest of the pieces will start to fit in this puzzle.

    I have multiple diagnoses, FMS, CHF, Chronic Lyme, Sero-Negative RA, but it is all the same thing. It has been the same disease since I came down with a sudden viral onset many years ago. I do meet Canadian Criteria.

    I think Non-HIV AIDS is a good name. It implies the serious nature and most everyone knows about AIDS. I haven't filled out your survey, but will soon. It seemed overwhelming at first, energy being so limited these days.

    Thanks Jamie for taking on this disease when you yourself have so much on your plate already.

  4. >If I came back to my doctor from a specialist with a non-HIV AIDS diagnosis, I would be treated so differently from the way I am now. Malingerer, a bunch of vague complaints that don't really sound serious nor debilitating. I was also accused n being too focused on the symptoms and not enough on the treatments- but then I refuse to exercise if I have chest pain- they wouldn't force a cardiac patient to exercise through their chest pain would they?

    Them doctors, and other health care professionals need to walk in our shoes, it's urgent.

    Reiterating Dr Mikovits appeal, patients need help now, not in 3 years when Lipkin's study will be published.

  5. >I don't know what you have. I don't know what I have. But I bet you anything it's the same thing. even though our symptoms may vary (and why shouldn't they, we're not clones). I do know it is way more serious than the name implies. I cringe every time I have to say "chronic fatigue syndrome". A name change won't make us well, but it's a step in the right direction.
    Thank you for your post!

  6. >i am xmrv+
    i have been dx'd w/
    Lyme Disease
    Ehlers Danos
    Atypical Neuralgia

    My response to one of my Dr's: I don't care if you call what I have "Dog Shit", just find a way to make me feel better so I can have my life back.

    Thanks to Dr.Jamie,Dr.Snyderman, Dr. Judy and everyone at the WPI for working on trying to make me feel better and helping to get my life back.

  7. >Dr Jamie, thanks for sharing your musings and an update on the study. I have a question on this: "The surveys we are receiving look compelling for demonstrating both the genetic and infectious pieces, as well as associated conditions".

    How do you evaluate the difference between genetic vs infectious when a particular familial disease could be genetic and/or an infection passed down vertically.

    And, oh yea, I like Non-Hiv AIDS too. I like the idea that one label is the cause (HIV), and the other is the resulting condition/disease (AIDS). We could use that model to create our own name.

    As always, thanks for sharing.

  8. >I have been telling friends and family for the last year and more that I have a retrovirus similar to AIDS. Thankfully people are more receptive and able to understand. I have only had one person ask if I am contagious. They now accept that I am unable to attend church on a regular basis or clean my house. I occasionally have someone buy groceries for me as this is exhausting. I am on antivirals now and things are slowly looking up. I just feel more hopeful and alive. I thank Dr Jamie for some of this because she gave me the courage to find a better doctor and to accept antiviral treatment. We will have some respect for this illness soon. I too am disgusted with the history of how we have been treated. This cannot be undone. I think this survey is a type of weapon we can use to say here we are, we need help. Marilyn Bloomer

  9. >Non-HIV AIDS is said to be associated with retroviral particle HIAP-II, according to a lab called Autoimmune Technologies. Is HIAP-II implicated in CFS? Do XMRV and related viruses also cause Non-HIV AIDS? Is the presence of a retrovirus a threshold diagnostic issue in Non-HIV AIDS?

    Is similar work on Non-HIV AIDS being conducted elsewhere?

    I plan to monitor the availability of Non-HIV AIDS tests. See http://www.autoimmune.com/Non-HIVAIDSGen.html.

    Bravada Jones

  10. >I have been diagnosed with/have:

    OI (probable)
    Panic Attacks
    Interstitial Cystitis
    Sleep Disorder (severe)
    Muscle Wasting (could be in part from HAART)
    Infections: pneumonia, parvo, aspergillis, & others still pending

    No colds or flues for 20 years

    My disease looks to have 50% in common with Jamie's and 50% in common with Ali's disease. What does Jamie have? What does Ali have? You both have what I have.


  11. >One thing that has allways perplexed me about this illness is why a large chunk of us catch everything under the sun while another chuck report never catching colds or flu's after the onset of their illness. I guess for that reason I feel Immune dysfuncrion fits better overall then Immune deficiency.

  12. >Wow, a lot to think about, but great blog. I worked on Hep C research for a while with a hepatologist. Finally finding the virus, getting good enough testing to find it……
    Some day we will find the cause of this disease, my immunologist about 10 years ago told me exactly that…."we just don't have the test yet." She is/was right.

  13. >Great blog. Your and Ali's symptom (and sign and subdisease) lists help a lot.

  14. >Just imagine that there was a start-up research institute who made what you thought was a groundbreaking discovery. Just imagine that this institute's founders committed several million dollars to get this institute started and promised millions more to keep it going. Just imagine that this institute licensed an unregulated diagnostic test to a company owned by the institute's founders and sold this test to several thousand patients, relatives, etc., netting hundreds of thousands of dollars which was then spent on research. Just imagine that this institute now cannot get it's grants funded due to an ever growing amount of evidence indicating that the previously 'groundbreaking' research was simply the result of lab contamination and therefore this institute is in desperate need of funds and is in no position, financial or otherwise, to refund the aforementioned hundreds of thousands of dollars should the unapproved diagnostic test be proven to be the result of contamination.

    Now imagine that you are a desperately ill individiual who has suffered from a poorly understood disease for possibly several decades and all of the sudden you are given what you think is the answer for which you have waited all this time, along with the potential for treatment. Imagine that you pay in the hundreds or thousands of dollars of money you can scarcely afford to waste on an unproven diagnostic test which tells you something you have long waited to hear, namely a potential cause of your disease.

    All of this just because the institute's research director happened to be wrong. That could make for some serious denial.

  15. >some people I no have said you have HIV then! when I told them I have XMRV. guess this is going to happen, some people are dumb!

  16. >I think non-HIV AIDS is fine. I do not think that CFS is, in any form. None of any of this should be called or diagnosed as CFS. CFS creates the denial
    and trivialization.

  17. >John,

    These are very serious assertions. I will address your concerns in detail in the near future, after some fact checking.


  18. >After reading a few of these blogs, as I am new to this site, having this "disease" whatever it is called, meeting the Canadian Criteria it is so perplexing. I can understand the frustration of the Dr.'s, over the years dealing with us, and the researcher's as well. Now, this is no reason to give up, heaven sake, I am the one that is sick!! I think this when I see a Dr. and they are frustated they cannot do anything, call me lazy, or what we have heard over and over.
    Somehow, somewhere we are not looking in the right place. I worked on Hep C when it was called non-A, non-B. Our variations of symptoms are puzzling. It has to be something that is affecting the entire body, well, obviously, but attacks what is weakest in each of us, but…..still we have similar symptoms…..I am rambling, but thinking outloud here and hope some of this makes sense, I have had/been "crashed" now for about 1-2 months. Stress is what hits me hard.
    Anyway, back to "what is this?" XMRV in some, not in others? Is it possible that it was in some, but that some are able to fight off the XMRV before it can be detected but has done it's damage? Or that there is so little XMRV that it cannot be detected? Maybe only a few of the little buggers running around and can't be found??? Hep C virus, to compare can be high, or low in some. Anyway, just rambling…..maybe some of this makes sense????

  19. >I think it's absolutely terrific to invent more names. Why not? What's a few more to add to the voluminous collection we already have?
    Go right ahead, I'm looking forward to hearing whatever new names will be next.

    And if anyone refuses to use CFS, due to the trivializing nature of the name, that's fine too!

    If people can obtain an ME diagnosis, by all means, use it exclusively!

    None of that, however, changes what "CFS" is.

    CFS is the provisional term that was used for these 130 patients while the elements for the "new syndrome" to replace the fatally flawed CEBV-Syndrome were being collected.
    When the "new syndrome" was ratified in 1988, the CDC chose to retain the provisional term.

    Amazingly enough, regardless of what name was used, the 130 patients still had the very same illness.

    A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde

    First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections
    Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr Carlos Lopez. At this meeting Dr Gary Holmes gave out his new paper,
    "A cluster of patients with a chronic mononucleosis-like syndrome," that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302)
    The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren't sure and suggested that further study be done.

  20. >Hey! You want to hear something funny?

    Back in '85, the illness was called "Probable CEBV Syndrome"

    Then, in April '86, more testing blew EBV out of the water, so the next name was:

    "It's-called-CEBV-Syndrome But-We-Already-Know-That-EBV-Is-Not-The-Cause"

    This went on for about a year, but we had no other name for it, so that's what we had to say.

    And people think that "CFS" is confusing?

  21. >So, what do we call it?? I can say to someone….I have a disease that has many names, with many symptoms, but I don't have as many symptoms as some people, but more than others….;) I am tired some of the time, sometimes more than others, I have pain, sometimes it is worse than other times, there are days when I sleep all day, all night, all day again, sometimes I am dizzy, sometimes my brain is foggy, I am forgetful, sometimes…..and so it goes…….

    So, we could call it…..DTHMNWMS (Disease That Has Many Names With Many Symptoms) We could add…No Known Cause Yet Syndrome (NKCYS)

    I think that it is just frustrating to not know what I have, to try and explain, have Dr.'s think you are crazy, depressed, angry, all in my head, etc., OK.
    I have something….that is it.

  22. >Remember when the singer "Prince" abandoned his name, adopted a symbol, and was only referred to as "The singer formerly known as Prince"?

    Maybe we could use a symbol that looks like a stinking pile of dog poop, and call it
    "The illness formerly known as CFS".

  23. >Leslie,

    You call it what it is. If it ME, call it ME. Those who fit the ME criteria have ME. Others have what they have. If XMRV is the cause, and if non HIV AIDS seems better, that's fine. AIDS people do have neurological and cognitive symptoms and there is a recognized AIDS dementia. But ME should not be called CFS.

  24. >Jill,
    However…..if you are "required" to have say, 8 out of 10 symptoms and you only have 7, or if your symptoms are not high enough on a scale, or you don't have 2 of the following…..a bunch of nonsense to me.
    I think this is why this is all so difficult.
    I can say, yes, I have ME or the dreaded name of CFS, or both, but for a long time didn't have enough of the symptoms to qualify……yet. Because I didn't have enough of the symptoms I couldn't say what I had, until, low and behold……finally, I can say I have ME. Most diseases don't work this way, only the "textbook" patient can get away with that, most of us with any illness are not textbook.
    That is why research is so important, to find a cause, so yes, we can have a " real" name to a real disease.

  25. >Dear John,

    It all comes down to point of view. I think most of us are well aware XMRV may or may not pan out. If it does in fact turn out that the whole finding was a mistake, I will not regret spending my $500 on the testing. It will simply have been a donation towards further research. You know the old saying: if at first you don't succeed…
    Any way you look at it, the WPI is the one institution in the country whose sole purpose is to actively research my disease. I remain grateful for that.


  26. >Hi John – Nice conspiracy theory! You know WPI isn't all that far from Area 51? Just imagine green men and a flying saucer under Groom Lake.

  27. >Non-HIV AIDs is good. Although, like others I don't really care about the name.

    However, at this stage I think the definition needs to be as specific as possible so as to be 100% sure anyone included on ME research actually has the illness. Therefore as exclusive a definition as possible is needed. Heterogeneous groups do not make for good research. In fact, that is the very problem that has been used by the psychiatrists to deny people with this illness treatment.

    Once a specific test has been invented using very specifically definied patients, then we can start talking about the name. What is important for now is research on very specifically defined ME patients.

  28. >We all benefit if specific cases are studied first. HIV was only discovered when studying AIDS patients that all had very similar symptoms. Yes you are right, today AIDS surveylance looks at many different presentations – but that is only possible because they have a specific test to identify everyone who has HIV.

    To begin with research has to be done on only the most specific and well characterized ME patients – and that means the very severely affected classic cases that became ill after mono/glandular fever or other such severe infections displaying the constellation of classic ME neurological signs.

    That is not to exclude anyone, but only for research purposes, it is an absolute necessity to get to the bottom of this mess.

  29. >Kermit, Well if we need specifically defined ME patients, let's dx and call it ME. The problem with CFS is very real but it goes well beyond the name. It is the heterogeneity of the criteria.

    For starters we need those with ME to be properly dx with ME and see then do the research on well defined cohorts. But ME patients need to speak up. As usual, it sounds like the CAA and Pandora/MCWPA are conniving with HHS to misrepresent and recreate another bogus ME/CFS construct that will keep us buried in the CFS rubble.

  30. >Specifically defined ME patients were used as prototypes for CFS.
    This is well-known.

    The problem is that although the CFS criteria explains its purpose as a research tool, people chose to make the definition into the disease, even to the point of ruling out the very group that CFS was based on.

    Byron Hyde is right in saying that due to definitional and conceptual problems with the CFS definition, that CFS should not automatically considered to be ME, but where the illnesses overlap, they are undoubtedly the same.

    This means that to say "CFS is not a neurological illness" "CFS is fatigue" "CFS is not ME" are all inaccurate statements and fly in the face of documented evidence.

    If those who spread falsehoods can win, this means science can be made to lose.

    And if science is allowed to fail in plain sight, undermined even when the truth is so widely known, then what else can can be crushed by a sheer wall of obfuscation?
    ME? XMRV? Biotoxins? Lyme?
    Whatever is yet to be found, regardless of what it is?

    If we allow this to happen, then is there anything that CAN'T be crushed in a similar manner?

  31. >I'll tell you something about name-change that Dr Ryll of the 1975 Mercy Hospital "Infectious Venulitis" outbreak told me.

    Name change strips a paradigm of its provenance.

    Everything that came before is reduced to being a mere comparison, and therefore, suspect… in relation to the new name, whatever it is.

    Whatever history you had, is now one step further away, if not deleted completely.

    Think carefully about what you are going to lose when jumping to a new name.
    The CDC gave a trivializing term to this disease, fully hoping that you would make that leap without looking back.

    Better read Osler's Web so that you'll know what is going to be lost when "CFS" goes in the trashcan.

  32. >I have never been diagnosed with any illness entity except Myalgic Encephalomyelitis.

    I left Dr Cheney and Dr Petersons practice before "CFS" became a syndrome.
    So I do not consider myself to be a "CFS advocate", but rather a "CFS abstergent"

    One who wipes away the muck to reveal what lies buried beneath the obfuscation that has been heaped on the medical entity that came to be called "CFS".

  33. >If one gets better when moving away from toxic mold, then isn't that considered recovered? And what does that have to do with XMRV?

  34. >If one gets better from moving away from toxic mould then I would say that you have environmental illness and mould sensitivity and not ME/CFS/infectious neurasthenia or whatever would be best to call the illness entity that has been known in the UK literature from the 1950's as ME.

    Just as if one gets well by going gluten free, you also do not have ME/CFS, you have celiac disease.

    Many diseases have very similar symptoms, especially chronic diseases. This is why a specific test is needed. It is rather like trying to make tuberculosis patients well by giving them gluten free diets.

    Let us not make the mistake, however, ME/CFS is a specific disease entity as described by Dr Melvin Ramsey. It is classified under the WHO, it is well described by thousands of medical papers. It is only since the late 1980's that confusion was interoduced and criteria used to include patients non-specifically from just about any fatigue disorder.

    Hence as I said above, we need research done only on very specifically diagnosed patients to get a specific test. To avoid confusion about the name, the disease investigating is that defined by Dr Melvin Ramsey, the CCC and Byron Hyde.

  35. >That's where the fascinating conundrum comes in and is the reason I felt it was my personal responsibility to speak up about the biotoxin connection to "Chronic Fatigue Syndrome"

    My obsrvations and experience are not so easily discounted as being irrelevant to "CFS".
    Nor is it possible that I could have been misdiagnosed with CFS.
    I couldn't be, for the syndrome did not yet exist.

    I know this is going to be hard to believe, and it sounds so utterly outragous that people automatically think that such a thing cannot be true. But I'm sure that you've heard that after a lengthy dispute, "CFS" was the CDC's forced-reaction to Dr Cheney and Dr Petersons evidence that CEBV Syndrome was fatally flawed.

    That evidence had to come from real people, didn't it? Of those few people, wouldn't there have had to be a even fewer who came before the others did, maybe even a first?

    Yes, I know it sounds crazy, but think about it for a second. Given Dr Cheney was looking through the evidence from a small group of individuals with a "Mystery Illness", conceivably, there had to an initial time he saw something that confirmed his suspicions that CEBV Syndrome was flat-out wrong and could be challenged by using this evidence.

    Doesn't that suggest there might be an actual person who saw the rag end of CEBV Syndrome and the earliest underpinnings of the replacement medical-entity?

    As told in Dr Ritchie Shoemaker's new book "Surviving Mold", I got to personally witness that critical moment when Dr Cheney had me come into his office and asked,

    "How would you like to be a prototype for a new syndrome?"

  36. >Of course I did what I think most people would do in a circumstance like that.

    I replied, "No thanks, I don't want any part of that. There's others who could represent it much better than I can. Use them instead."

    Really didn't want to get involved, at the time.

    Based on all the craziness I had already seen, I had a pretty good idea that there was bound to be lots of trouble.

    THAT was the "underthinkment" of the century!

    There's nothing about this entire CFS-debacle that has been anything less than pure insanity.

  37. >Well, I wasn't going to do it.

    It seemed to me that if there was a virus or bug to be found, my participation wasn't necessary.
    Science would take its course, regardless,
    or so I had firmly believed at the time.

    But there was something else.
    Nobody wanted to look into it.
    They were so fired up on finding some "bug" that this other odd thing was consigned to oblivion and ignored, no matter how many times it cropped up in stories of people with the mystery-malady.

    When Dr Cheney told me that as a prototype, researchers would take an interest in my personal case and listen to me, I changed my mind and finally agreed.

    "Now they'll HAVE to listen to me about the mold!"

    Was that asking too much?

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