If it looks like a duck, and quacks like a duck, we have at least to consider the possibility that we have a small aquatic bird of the family anatidae on our hands.
~ Douglas Adams
I have to hand it to Dr.’s Switzer et al for responding to the vaccine question. Even if it was a very literal response, the findings were imparted clearly and believably. They looked for mouse viruses in 8 vaccines currently on the market. None of the vaccines were grown in mouse cells and, not surprisingly, they didn’t find any mouse viruses. No MLV’s at all in vaccines produced from chick, macaque, guinea pig or hamster cells. However, they did find human, avian and porcine endogenous retroviruses that they already knew were there, plus a new hamster virus in the vaccine grown in hamster cells… but it was DNA only, not a speck of RNA, so no worries… No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines. Switzer. Their conclusion: “We found no evidence of XMRV and MLV in eight live attenuated human vaccines further supporting the safety of these vaccines…”
What a concept! Rescuable incompetent ERV’s. They knew about it in the early 80’s, and knew that there were infectious animal retroviruses in vaccines, but decided not to worry about it. And why can’t these parenterally administered xenotropic and polytropic viruses infect humans? “Because they can’t”. “They are inactivated by human serum.” Now that certainly is sound scientific reasoning. And they accuse patients of poor scientific discourse? Scientists please, take your blinders off. There is a whole generation in which 1 in 100 is autistic.
This is where the science is, if anyone cared enough to apply it to us: Endogenous retroviruses and neighboring genes are coordinately repressed by LSD1/KDM1A. Macfarlan
Here are a few good ones:
- Risks linked to endogenous retroviruses for vaccine production: a general overview. Dewannieux
- Isolation of an Infectious Endogenous Retrovirus in a Proportion of Live Attenuated Vaccines for Pets. Miyazawa
- Endogenous retroviruses as potential hazards for vaccines. Miyazawa
- Divergent Patterns of Recent Retroviral Integrations in the Human and Chimpanzee Genomes: Probable Transmissions between Other Primates and Chimpanzees. Jern “According to the “breakout” hypothesis, copackaged RNA of partially defective ERV elements occasionally may recombine, thereby rescuing and optimizing retroviral function during reinfections from within.”
But Dr. Anon, PhD, reading my blog, wants to “puke” because I am taking properly prescribed drugs for an off label indication? What a world! Tenofovir is prescribed for chronic Hepatitis B. Does that make you want to puke? We have non-HIV, non-HTLV AIDS, exactly analogous to non-A, non-B hepatitis before C was isolated. Wikipedia article: Off-label Use. The off-label prescribing of existing arv’s is completely legal. The only reason to prohibit it is because of the enormous financial implications if it works. Only a very few people have tried it. No disasters yet attributable to it, unlike most of the pharmaceutical alternatives; and to the scientists reading, you wouldn’t believe the dangerous crap my patients come to me taking, in combinations that have no research at all behind them to tell us about possible interactions. In my case, the only adverse effect of my experiment with arv’s that I can point to is that my straight hair became curly; this happens occasionally with chemotherapy and other drugs.
Tenofovir treats Hepatitis B. Raltegravir inhibits Herpesviruses. AZT has been noted to impact Sjogren’s, which seems to be overrepresented in our patient group. Protease inhibitors kill some parasites. I referenced a paper in the last blog in which it was reported that HAART brought about an impressive remission in a patient with advanced MS (and some of us, myself included, have MS light). Those “confounders” are good things about the drugs in clinical practice; all drugs have good things and bad things about them for a given individual. As a clinician, I love it when a drug hits two things in a patient, making it more likely that the cost/benefit ratio for that drug will be favorable for that person. However, the idea that my response to arv’s is because they controlled my Herpesviruses is almost as ludicrous as the idea that Dr. Snyderman’s cancer cells went down because of a placebo effect. Twice.
This seems like a good time to note that I have never had mono and am serologically negative for EBV. Since I was an ER doctor for 16 years and exposed to lots of mono, my body must be pretty good at keeping invaders out. Ali’s EBV tests are consistent with prior infection, and we both have low titer IgG for HHV-6, like almost everybody. There is really nothing to suggest that we have activated Herpesviruses as part of our picture, opportunistically or otherwise. Ali falls squarely into the Lyme group, not the activated virus group, and opportunistic infectious are not really a part of my clinical picture at all. I catch almost nothing. It’s the inflammatory effect of the physiological changes caused by the persistent immune shift to fight viruses so effectively that creates the subjective illness. Patients, and doctors, often confuse the symptoms of persistent inflammation with an active infection that needs to be killed or treated. There is also a subset of patients that catches everything and has ongoing problems with activated viruses. I have heard from people who have had mono and shingles numerous times.
Most novel uses of existing drugs are figured out serendipitously. Somebody with two things takes a drug for one thing and the other thing gets better. Occasionally, somebody actually connects some dots and tries something on purpose. If it gets reported, it is called a case study. In a sane world it would be followed with an open label trial and then a double blind placebo controlled study.
In response to the criticism that I’ve lead thousands of innocent patients down the garden path, please read what I’ve written, before jumping to conclusions. I have never said anyone should take arv’s. My point is that it should not be prohibited, and most definitely, the decision should not be in the hands of a bunch of lab scientists that have never treated a patient. A retrovirologist has no basis for an opinion about treatment at all. That they would presume to comment is a sign of disordered thinking right there.
As I have said all along, ours was never a good experiment. What I have reported here is strictly clinical medicine. We were on an uphill course for about six months before starting arv’s, after quitting Lyme treatment. I do think that antibiotics were making us worse and when we stopped them, we went uphill, though an LLMD might say our treatment had worked:). I believe that arv’s helped us, though incompletely, not surprising for patients that have been sick for many years, who most likely have a high proviral load that continues to replicate mitotically. We still seem to be doing better than might be expected, but I have no way of knowing how we would be at this moment had we never taken them. The only marker we had to follow, TGF beta-1, initially very high has normalized for both of us over a year and a half (see numbers posted here; the pending results from 11/30 were normal TGF beta-1 and elevated C4a, for both of us). It is a very bad disease and we both feel lucky that our suffering is reduced. I wish that the science was keeping up so that we might have a better way of monitoring our therapy. We need a viral load measure or RT assay to follow, understanding full well that we might have more than one virus each and replication incompetent contributors. My biggest concern is the possibility of viral resistance, not toxicity of the drugs.
As far as the arv elist is concerned, I try to create a safe place for patients taking arv’s to discuss their experiences. Occasionally, I answer a question, but mostly, it is patients talking to patients. Everyone on the list, thirty or so of them, decided to take arv’s on their own, and all have their own prescribing doctors, except for a few that live outside of the US. In my practice, since I am willing to prescribe arv’s for an extremely informed patient, I must not be pushing it very hard, since none of my private patients have yet swallowed an arv.
Unfortunately, it is still the patients least likely to respond who are trying it, people who have been sick for a very long time with advanced disease that feel like they have nothing to lose. Much scarier to contemplate, but with a much greater possible upside, is the question of what would happen if newly crashed ME/CFS or ASD patients were treated quickly after onset of symptoms. This obviously needs to be investigated, but in a controlled setting. It will be very expensive to do safely, so is unlikely to happen for either of these conditions (cancer more likely). People don’t like to be wrong and there are lots of wrong, powerful people in this story.
My husband has been acting CFSy lately. When his symptoms flare, I am always impressed that it must be an infectious disease. All four members of my nuclear family have certain common symptoms, e.g. painless ocular migraine, which was a rare condition when I was an ER doctor 17 years ago, and orthostatic intolerance, of a form that nobody had ever heard of a few decades ago. Vascular instability and autonomic neuropathy in four members of a nuclear family, two sick, two not. Husband and wife not even distantly related. I thank God every day that my son isn’t autistic. I vaccinated him selectively, for the wrong reasons, but I have heard from that woman out there who, like me, has CFS and a CFS daughter, plus an autistic son. Is it because I didn’t give him the Hep B vaccine (which is not a live vaccine, but causes persistent immune activation over a long period of time)?
I get letters now and then suggesting that I do not know how horrible polio and other infectious diseases were before vaccines. That isn’t true, I do know. But just because the vaccine program saved many people doesn’t mean that we shouldn’t look at problems that may have been caused by it, and modify our recommendations now for people at high risk, e.g. people with CFS and new offspring of ME/CFS women. We desperately need extensive epidemiological studies to find out what happened when. If you want to look at the bigger evolutionary picture, we have changed nature’s culling process. If you take the starfish parable from a few blogs back to it’s natural conclusion, throwing the starfish back is a mistake, because they are vicious predators that overbreed and damage the reef.
In the meantime, the backlash from the flash of illumination has started. The Mayo Clinic says SSRI’s (which many ME/CFS patients don’t tolerate), sleep meds, GET and ‘therapy’ are what we can have as far as treatment goes. That’s the best they can do for a million sick people? On their website: “More than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower you to manage your health.” Shame on them. May the doctors that came up with this page never have to get sick, or have their child get sick, with a horrible debilitating disease and be faced with such options. May they find some shred of compassion in their hearts of stone before that fate can befall them.
I am writing to you today from the Louisiana bayou. My husband’s 50th birthday present a couple of months ago was our first RV, and this is our first trip. We have always wanted to try the RV lifestyle, but now even more so, since we love to be in nature and it is the only way that I can still travel comfortably. Our son was just accepted to Tulane with a big scholarship, so we decided to take him to New Orleans to help him decide what he wants to do. Ali didn’t come on this trip, but will come on the next one, shorter and closer to home. The trip has been exciting, to say the least. We survived the worst blizzard in 40 years in north Texas and a tornado warning in southern Louisiana.
I love the spontaneity and limitless possibility of seeing the world this way. Change is usually so difficult with this illness, but everything I need is close at hand and comes with us when we move. The pendulum of my disease continues to swing, as always, while I practice the art of transcending symptoms, living as many full moments as I can. Right now, my husband and son are fishing in the rain. We’ve had the worst luck with weather. Adversity is giving us all the opportunity to practice acceptance and work on our interactions in a close space. Like life, the difficulties have been punctuated by amazing moments; yesterday we watched from our canoe as a small otter caught and fought a huge fish, then defended it from a Great Blue Heron. This part of the country is very wild and alive. When I couldn’t sleep for a while last night, I listened to wonderful, unfamiliar night noises.
And the breaking news? Lo et al just retracted, saying the work was perfect, but the conclusion must be wrong, since nobody has replicated it yet, except for one other lab. Therefore, enough money wasted. Now there’s some ironclad logic for you.
Speaking of dietary needs, I am usually strictly gluten-free, wheat-free, dairy-free, sugar-free. Really pristine stuff. I was pretty much sensitive to most of this within a few days of onset of my ME/CFS, but I was religious with this diet for the last 2 years.
Well, after I did avoidance, I could eat canned food in the desert. I'm pretty sure I had a crock of wheat in my salad the other day and didn't notice a thing. I've been eating plenty of sugar on my hikes. Eating any of these things in the past would've given me upset digestion, acid reflux, and the sugar would've caused thrush and dry mouth immediately.
I mean, I'm not gonna mess around because I still think a good diet is something you want to keep whether or not a bad one causes symptoms, but the point is that with this exercise, I'm beginning to see what's at the root and what is just due to my immune system being in attack mode 24/7. Like sifting rocks from sand.
>@khaly yes the goal is to get to a point where you're only avoiding "Agent X". However, for those that are reading this for the first time, no one starts there, mostly because it takes going through the exercise of getting clear to recognize what you're body is actually reacting to.
With that said, I'm also in an actual town, actual stores, actual life! However, from most people's standpoints, living in a RV or tent in the desert is as far from the norm as you can get.
My intention is certainly not to do this forever, but it's a temporary sacrifice for the chance to lead a semi-normal life in the future. There are certain big cities that biotoxin avoiders find to be good locations, such as Las Vegas and Palm Springs. Perhaps not everyone's cup of tea, but it's no GFD either.
>"Again, based off my experience, I can tell you whatever I'm avoiding is a totally different ballgame from dietary needs."
But for some certain foods are crippling and avoiding them helps too. It's a side affect to the main disease, but non the less needs controlling.
>Very true about getting clear..you have to before you can differentiate.
The link I put up talks about nanoparticulates, potential for human health issues, and potential interaction between nanoparticles and the environment, along with Erik's observations.
That goes for me too. why do you think I went with that diet for years? It wasn't for fun or out of envy for those Berkeley hippies: I couldn't actually function otherwise.
There's a very clear distinction here:
Some things need controlling to prevent exacerbation of symptoms (foods, cigarette smoke, perfurmes, fragrances, pollution, exhaust etc etc). However, when you remove these things you get back to baseline (or maybe you feel better, but either way you don't lose your PEM)
On the other hand, removal and/or avoidance of biotoxins is reducing or eliminating PEM.
>I got tired of being beat to heck, and I had stumbled over "a helluva clue".
Seemed like it was time to try something entirely different… and do something about it.
>I avoid pollutants in the air and also whatever foods — plant and herbs — that I have become allergic to over the CFS years. It startles me to find myself allergic to things I wasn't allergic to for years, but have had to cut out of my diet, nearly all plant-based, herb-based, even spices — and out of my environment, including plant-based shampoos, etc.
However, my reactions are no less bad when I encounter air pollution. I have to hide from all of it, walk as if I'm in a combat zone, around things, across streets, and constantly figuring out avoidance mechanisms. So on bad air days and hot days (when the pollution is unbearable), I just stay home. It's not worth finding it hard to breathe.
One of the main reasons that Paul Beith and I put together “The Locations Effect” board was to see how much consistency there is in terms of the environmental reactivities of ME/CFS patients.
If everybody is reacting to different things, then we shouldn’t expect to see a lot of consistency in “Good Locations” and “Bad Locations.” Obviously that would make pursuing the Locations Effect a lot more challenging, because we wouldn’t be able to rely on anybody else’s reports when deciding where to go!
So far though, I’ve found my experiences in different places to be remarkably similar to the ones that other "mold" avoiders report. We don’t have a great number of data points so far though. Obviously, the more cases we have, the more that we will be able to see how consistent the effect is.
The good thing about your having an RV is that you will be able to make a true comparison between Place A and Place B, without having to worry that (for instance) a moldy hotel room in one place is throwing you off. And though I haven’t had very good experiences in the Santa Fe area itself, there are lots of places within easy driving distance from there that other mold avoiders and I have found to be terrific. So I am really looking forward to your reports!
With regard to the food reactivities: It’s well-documented in the literature that trichothocene (poison made by certain kinds of toxic mold) has the ability to cause intestinal permeability (leaky gut).
The articles below are about DON, a grain toxin similar to (but not as strong as) the satratoxin made by Stachybotrys. Insofar as people breathe in Stachy toxins and then detoxify them through their intestinal tracts, it seems reasonable to me that their intestinal linings might be damaged by them in the same way that DON has been shown to damage the gut.
For instance, I’ve found that at certain points, after detoxing heavily, my reactivity to gluten has gone way up. At other times since pursuing avoidance, when I’ve been working for extended periods of time on supporting my system rather than pushing detox, I’ve been able to eat lots of pasta and bread with no apparent negative health consequence.
I think there are lots of potential studies (such as ones on whether mold toxins in the ME/CFS sufferer’s system are related to the leaky gut problems) on this phenomenon that would be relatively easy to put together and that would have the potential of leading to important insights about the illness. The real question is whether people are interested enough in the topic of toxins/biotoxins to pursue them.
>Whoops, here are those cites on the effects of trichothocene mold toxins on the intestines.
Sergent T, Parys M, Garsou S, Pussemier L, Schneider YJ, Larondelle Y. Deoxynivalenol transport across human intestinal Caco-2 cells and its effects on cellular metabolism at realistic intestinal concentrations. Toxicol Lett. 2006 Jul 1;164(2):167-76. PMID: 16442754.
Li M, Cuff CF, Pestka JJ. T-2 toxin impairment of enteric reovirus clearance in the mouse associated with suppressed immunoglobulin and IFN-gamma responses. Toxicol Appl Pharmacol. 2006 Aug 1;214(3):318-25. PMID: 16504231
Kouadio JH, Dano SD, Moukha S, Mobio TA, Creppy EE. Effects of combinations of Fusarium mycotoxins on the inhibition of macromolecular synthesis, malondialdehyde levels, DNA methylation and fragmentation, and viability in Caco-2 cells. Toxicon. 2007 Mar 1;49(3):306-17. PMID: 17109910.
Moon Y, Yang H, Lee SH. Modulation of early growth response gene 1 and interleukin-8 expression by ribotoxin deoxynivalenol (vomitoxin) via ERK1/2 in human epithelial intestine 407 cells. Biochem Biophys Res Commun. 2007 Oct 19;362(2):256-62. PMID: 17707346
Van De Walle J, Romier B, Larondelle Y, Schneider YJ. Influence of deoxynivalenol on NF-kappaB activation and IL-8 secretion in human intestinal Caco-2 cells. Toxicol Lett. 2008 Apr 1;177(3):205-14. PMID: 18343055
Moon Y, Yang H, Park SH. Hypo-responsiveness of interleukin-8 production in human embryonic epithelial intestine 407 cells independent of NF-kappaB pathway: new lessons from endotoxin and ribotoxic deoxynivalenol. Toxicol Appl Pharmacol. 2008 Aug 15;231(1):94-102. PMID: 18485432
Yang H, Park SH, Choi HJ, Moon Y. Epithelial cell survival by activating transcription factor 3 (ATF3) in response to chemical ribosome-inactivating stress. Biochem Pharmacol. 2009 Mar 15;77(6):1105-15. PMID: 19101521
>Lisa the symptoms of toxic mold illness are not in anyway similar to ME, so you actually don't know what it is that you are avoiding and quite frankly I don't care, we all know we live in a toxic environment so nothing new here. You have been asked time and time agin to set up your own blog, so please go and figure out what this mysterious "effect" is before boring people senseless with your sermons.
Do you not understand that people are not physically or financially able to pack up and leave their homes and all their belongings on the say so of a couple of people who have no proof that avoiding "whatever it is" will be the answer for all of us. If you set up your blog and people are interested they will join you, if not then please respect our right to discuss what Jamie brings to her blog in peace.
>In vitro and In vivo nonbeliEver,
I am enjoying a nice holiday so not able to look up the epidemiological study of CFS in the samebuilding. But I expect you can google it. Try Leonard Jason CFS families. I have the info on my home computer. He presented his study, I believe done in Wichita, KS finding that relatives in the same home who were not genetically tied ALSO DEVELOPED CFS. Of course this whole debate is to make the point that CFS is not geneticbut contagious. But the simplest way to prove that would be to look at Truckee, Lyndonvile and the orchestra in Raleigh. What am I missing here? Maybe toxic mold being a contributor? Enlarged lymph nodes? Low grade fevers? Been there, done that in spades. Whatever CFS is, it is infectious and contagious at some low level.
>Paula, I'd like to see that study but am not sure which one you mean. If you can provide more info or a link when you get home, that would be really great.
People don't talk about this much spontaneously, but when I probe, it seems that a really high percentage of CFS sufferers have especially sick pets. This may include animals with something that looks a lot like CFS (lethargic, rest 22+ hours a day), fibromyalgia (e.g. cats that walk stiffly and cannot jump up on the sofa), shutdown of the intestinal tract, die of weird cancer at an early age, and howl like crazy for no reason.
It would be interesting to confirm this in an epidemiological study. If it's true, then either the relevant pathogens must have the potential of infecting animals as well as people or the shared environment must be having more of an effect than some people think.
>Lisa Off topic on this lengthy list of comments – I have recovered very well on long term antibiotics for my Fibro, ME/CFS, PMR, Arthritis and muscle weakness which turned out to be Lyme. When my Springer Spaniel developed similar arthritis and muscle weakness problems in her later years and tested negative for Lyme ( Elisa used for testing dogs), I decided to try her on Samento anyway – the improvements in her arthritis and muscle weakness are very visible- when the Samento is stopped or changed to anti inflammatories the deterioration is also very visible. We both walk in the woods were several other patients have contracted Lyme. So your thoughts are not so wayward at all. Appologise for going off topic and thank you Jamie for all your enlightening posts.
A hybrid is a really good choice and one I seriously considered but even still, researching the materials in RV's, decided it was too toxic–you are still detoxing formaldehyde, glues, solvents, laminates etc. On the other hand, I'd say the hybrid I walked into this summer was the best RV I was in, because of the airflow you get from the popouts. Good choice.
Citychanger–fantastic cogent comments. I would just add, however, that some cases are more complex, and mine is. I'm extremely sensitive to hormones even from plants–from brazil nuts, and from certain berries (but it could be hormone disrupter pesticide residues on the berries and that's my suspicion). I can't process them, they have a really strong hormonal effect, as do certain sprays etc.
Also, there are pure environments that are not the GFD…it's really variable.
Some people have the biotoxin issue and on top or alongside it are layered other more complex issues, based on genetics. Even so, the answer is the same, to listen to the body, and avoid triggers if possible.
I used to get really mad, too, back in NY, and say this can't be done by most people so stop talking about it. But you know what, it can be done…it's just inconceivable to them it could work.
I think it's still inconceivable to you that it's more than a piece of the puzzle, rather than that it could completely "move the illness" as you put it. Not just partially as drugs do for some (and some don't respond to various drugs including ARVs at all). But it requires fulltime commitment, and one makes mistakes along the way. Vacations will be telling, but if just intermittent, would be like taking effective drugs only intermittently.
Teasing out the contributing factors will take far longer than we'd like. Pathogens will only be part of the picture, and there are likely to be a few major contenders, not just one. People too easily say, Yeah, we live in a polluted world, we know that, so move on. People are way too complacent about the epidemic of cancer, diabetes, obesity, depression, asthma, every illness you can think of–autism, too. And that quite obviously tracks with an explosion in all kinds of chemicals in daily use. Take hormone disrupters. First we targetted BPA. Now we are looking at triclosan. Every plastic, every pesticide, is likely a hormone disrupter (phenol chains, and the estrogen receptor binds phenols). The total load of hormone disrupters alone is staggering, even if you try to avoid obvious sources of plastic and don't use antibacterial soap. And that's just one small example. Vaccines don't need to carry a retrovirus to disrupt immunity. Adjuvants, heavy metals, can adversely effect and skew vulnerable immune systems. Vulnerable doesn't have to mean weak–just genetically vulnerable to that substance. And "attenuating" a virus is a very slippery concept. What does that mean? That it doesn't make you sick in an obvious way. But the complex choreography of immune function in the presence of an "attenuated" live virus, or pieces of a dead virus–who are we to think we understand? We don't understand we always overestimate ourselves and underestimate the long dance of evolution. I could go on and on about this but it would get boring.
And whatever pathogens are involved in "CFS" I trust Ian Lipkin, like one of the great conductors, will bring coherent and lasting "music" from his research team. I'm really excited to see what he finds over time. Nothing could be better, from the pathogen angle, than his involvement.
Citychanger, thanks for your contributions!
>PS–when I shifted to "it's inconceivable to you" I was talking to Jamie, not citychanger. Citychanger gets it 100% and has elevated and clarified the dialogue imo.
It'll be interesting to see how Jamie and her family do, if they really do check out locations in their hybrid. Maybe they'll find a good spot and stay there a few months. Like Lisa, I'm curious to see the results. But Jamie, you have to take this "experiment" seriously. And yes, wild nature can help heal the soul. Today, with iphones, ipads, netbooks, mifi, wifi, etc, it's easy to stay connected to your intellectual heritage, work, and the world–it makes this experiment actually doable, which for ages it really wasn't. Just remember though, Thoreau did it, and in his self-constructed, dewy one room cottage, he lived in his own words "not so much within walls as behind a door" (I'm paraphrasing) listening to the celestial music become terrestrial, and contemplating the dew on his room's timbers every morning, wondering if a goddess would trail her gown as she visited.
>Dr. Deckoff-Jones, you say "…what would happen if newly crashed ME/CFS or ASD patients were treated quickly after onset of symptoms."
Did you know that treating ASD patients with anti-retrovirals has already been tried in 1994, and with some success? At the time AZT was used to try to modulate the immune system. It is puzzling to me that after these results, nobody thought of asking the question of whether a retrovirus could be involved in the etiology of autism… I guess such a concept was and still is unthinkable…
Not surprisingly, the researcher got axed for this experiment and nobody followed up.
"Stubbs conducted his study on a young autistic boy who had responded favorably to several other treatments for immune dysfunction. During AZT treatment the child showed significant improvement in communication, cognitive skills, social relating, and academic and motor skills."
AZT study implicates immune system disorder
AUTISM RESEARCH REVIEW INTERNATIONAL Volume 8, Number 4, 1994
>A couple of years before the Holmes committee applied "CFS" to the Tahoe Mystery Illness, some of us found something that seemed to help, and by the way it did, perhaps tell us a bit about what had happened in our little neck of the woods.
It just seemed natural to us that when the syndrome eventually became known, people looking for "anything that helps" would have looked for clues in the phenomenon which was later named CFS.
It was surprising to me that nobody did.
I tried to convince myself that this was some kind of mistake, but the concerted disinterest of all CFS researchers makes it plain that this behavior is completely deliberate.
Should it ever happen that some kind of "CFS" is solved, it is highly unlikely that it will be the same illness as the one which received that term. Any connection would only be pure coincidence and certainly not by design.
>It *is* really astounding that Erik went from being encouraged to take Ampligen, to climbing Mt. Whitney yearly, based on avoidance of *something*, and nobody I know of but Dr. Shoemaker has taken obvious clinical interest in that.
>Perhaps if we present the data of before/after bell + KPS scales and before/after inflammatory profiles, this could attract something. Researchers, doctors, scrutiny at least. The messenger is indeed as important as the message, so there has to be one variable that we focus on, and the patterns of change must be presented in a concise and cogent way, so that even though "avoidance" can be debated, the conclusion that the variable changed cannot be argued against.
Again, how many people have actually done this? People act as if avoiders are all rich or something. Do some calculations over the course of 5 yrs and I bet we end up paying the same thing in housing costs. We're not traveling in fancy RV's (which wouldn't be a good idea for this exercise anyway). So it's not entirely about resources. I know plenty of rich patients that know who I am, know I'm a real ME/CFS patient, and yet this isn't even fathomable as a lifestyle. Because the avoiders I know are hardly wealthy, the thought of re-doing labs after feeling better just isn't reflexive at all. Someone has to pay for it because we don't need labs to convince ourselves we feel better; we just need them to convince everyone else. The selfish interest is not there.
Regardless of reason, I don't see won't be a considerable sample size for us to run this test. That's unfortunate because the study design is really quite elementary in theory and practice.
>How any person desperately "looking for anything that helps" could fail to take an interest in this, just boggles my mind.
>Yes. Most of us aren't financially or physically able to move to healthier regions. I live in a big city and can't tolerate cigarette smoke, auto/bus/truck exhaust and other air pollution.
Some summer days one looks down a block and one can see a black haze over the city.
But it's not possible to move.
Also, if there are similarities in CFS sufferers with sick pets, I don't have pets, haven't for many years before I got this illness.
>The Parable of the Starfish
One morning an elderly man was walking on a nearly deserted beach after a big storm had washed up thousands and thousands of starfish. He came upon a boy who was picking them up and throwing them back into the ocean, as eagerly as he could.
Puzzled, the older man looked at the young boy and asked, "Little boy, what are you doing?"
The youth responded without looking up, "I'm trying to save these starfish, sir."
The old man chuckled aloud, and queried, "Son, there are thousands of starfish and only one of you. What difference can you make?"
Holding a starfish in his hand, the boy turned to the man and, gently tossing it into the water, said, "It will make a difference to that one!"
>Sometimes, just a few feet is all it takes.
>LOL…I am getting dizzy..Oh well, off for my 15 mile daily run… http://www.watercure.com http://www.watercure2.org and the band played on and on and on…LOL Couple of hours at the boxing club later and then tonight taking the both girlfriends to a hotel and have some good sweat sessions to relieve toxins…LOL I wish you people on here would really stop knocking Jamie I believe she has done lots for patients and does not deserve being insulted after all she is a lady…None of us are perfect and yes there is frustration from being constantly sick and everyone wants their lives back to normal so please can we all cool it on cursing each other…Happy New Year and best wishes to everyone of you above…Get well blesses…Sincerely Aidan Walsh Southampton,Un-UNITED KINGDOM…LOL