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New Theories about CFS/ME; XMRV -- What do YOU think?
As you might have seen throughout my story and blog posts, I had a pretty good / bad case of CFS in my late 20's, which was 1989. So this is a topic near and dear to my heart -- in the phases since when FMS was getting the best of me, it is the fatigue as much as anything that was so excruciating. The causes are generally coming to be recognized and there are many schools of thought and much to learn from each other. So please SHARE, and we can develop this area with topics as the Fibromyalgia Forum is, or similarly .... Thanks!
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
This forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.
I have had FMS for 10 years, CFS for about 7 of those, which goes up and down but never goes completely. It can be as bad as being totally chairbound to being able to function at maybe 40 percent of pre CFS.
what I have noticed (and said on the sleep /insomnia site) (and another one...sorry, very new here!)is that if I eat sugar in anything, within a short time I am totally exausted, although sugar is not on my sensitivities list. This is especially bad, to the point of not being able to stand , if I eat say, a piece of cake without having had any other food prior (preferably with protein) Then eating a spoon of peanut butter and sitting for a bit will generally make it a bit better, able to walk again.
I don,t think I am digesting my good foods/supplements that I have been taking religeously for 4-5 years spending enormous amounts of money. I'm on glutamine,probiotics and digestive enzymes to heal my gut, but haven't improved yet.
2 teaspoons of cough mixture, with alcohol and sugar made me unconcious. My BP and glucose fell too low.
Anyone else experienced this or have any suggestions?
Recently, I was invited to join a group on facebook, run by the Whittmore Peterson Institute. I was drawn to this particular page because it provided information and updates on the recent research findings with regards to XMRV. Until now I have not written up my own story and experiences of fatigue as I don't like to focus so much on the illness, especially when it is a 'diagnosis of last resort' and has a psychosomatic undertow. This is probably the same reason that has kept me from accessing support groups. I often find it hard to sit down and acknowledge being sick - I would rather spend what little energy I have on things unrelated to illness, or more recently, promoting awareness and education around CFS.
I'm 27 and an Occupational Therapist. I live with my husband, Saul, and our two Burmese, Madeline and Francesca, in Dunedin New Zealand. This is how I define myself. But I have illnesses and disability, which interfere with this definition at times. Occasionally, I am a sick young woman, who feels I have no justification for spending three days a week in bed. At times, I am the wife who may miss out on extended in-law family celebrations, or the sister who gets fed up because she gets too tired to process conversations.
For reference, I was also born with a mild weakness on my right side - a rare form of Cerebral Palsy, which affects me only when I'm very tired - ironically. But this story is about Chronic Fatigue Syndrome.
At 14 years of age, I got diagnosed with Epstien Barr Virus (EBV). Like many kids at school. The difference is, this tiredness, this fatigue ... just ... never ... abated. At that stage I was in bed for 6 months. You all know this story, getting up and having a shower is akin to climbing Mount Everest. Now for any teen who is at the age where they are beginning to develop socially, it's tough to get used to suddenly being too exhausted to even walk out to the letterbox. For someone who was previously involved in sports, art groups, going to friend's places, meeting people, it's even harder to suddenly be in bed all the time. I mean, I had a pretty room, comfortable pajamas, but that's not what life is supposed to be like. I couldn't even watch TV, it was too hard to process the whole visual/auditory stimulation. Reading was out because I couldn't follow a train of thought. I'd have weekly or fortnightly visits to the doctor and I would stress for a whole day beforehand about how I was going to be able to get up, get dressed, travel in the car and sit and wait for the doctor then return home. Even sitting became a problem for me, and I still struggle with the need to lie down frequently. I would be hot and then freezing cold. That first summer, I spent the whole time wearing a wool jersey. Of course, school went on hold for months, but I gradually got back for two, then three, then five half days per week. I left school with the bare basics to get into University of Otago. And that threw me. I'm an academically orientated person - I love science, I love study and I love learning. And yet even that part of my life, that part of 'me', was being compromised.
And that was probably the exact year when I literally said 'sod this - I will fight for the me that I want'. So I did. (Stupidly enough in retrospect).
I joined support groups in the community. I took on roles of coordination and committees and any group that could give me the 'me' I wanted back. I put my name down for voluntary work in the community. I entered into Occupational Therapy school, I moved out of home. I was living a 'normal life'. And getting very very sick. I had to cut my hours at the OT school. I had to move back home at the end of that year (my mother had wanted me home at the start of the year - she could see what was happening, but I thought I could push through). I had to give up the voluntary work, the groups and the committees, and consequently that Christmas was 10 weeks in bed. But after taking five years to do my three year degree here I am. I did it. In retrospect I really should have pulled out, taken a year off, but I was too stubborn. I didn't want to be 'lazy' or a failure. And I knew people in my peer group would see me as just that. Of course now I've learnt that I only have to prove myself to me. And, though I have always been reluctant to cite Chronic Fatigue Syndrome for not getting where I want to be, I do need to acknowledge it.
Today I still struggle with balancing my life - I work 30 hours a week, which I monitor well. I am excellent at pacing work, but I still have a very strong tendency to take on a lot of extra things that I don't have to. I do 'overdo' it at times, and pay for it afterwards. I cannot process too many sensory stimuli at once (usually noise, which is a pain because I love my music). I cannot tolerate too much going on around me but I didn't relies this until maybe two years ago, that too many people, too much noise, colour, busy-ness just shocks my system and I relapse.
But I have done this, I have found the 'me' in the M.E. and I can define myself outside of this disease, which has always been and always will be a hard journey, but it's been worth it.
Blog entry from a blog I am working on at http://cfsandxmrv.blogspot.com/ dated 28 December, 2009. Please have a look, if there is anything you would like to see added to the blog, please let me know.
ek
Hi Emma-Kate
I take my hat off to you for your percerverense! (spelling!) It must have been terrible having CFS from such a young age. I agree, the fatigue is the worst, next to total insomnia. I like the analogy of taking a shower being like climbing Mt Everest, holding ones head up, or standing during a bad CF time feels the same.
My first few years of FM i stopped doing the things I loved because it affected me so badly (painwise). I love creative crafts,gardening, sewing. I Used to make wedding dresses. I thought if I didn't hurt myself it would all go away!
This year I decided to paint,do hypertufer (with help) beading, all paced, and I am really a happier person for it. Yes, it does cause more pain and sometimes take days to recover, but really worth it for my mind and sense of not being useless.
All the best,
Moira
Yes Moira, it can be such a struggle, however it is good that you have found some activities which give you meaning and purpose!
I have just posted an entry on sleep dysfunction in ME/CFS, as I agree with you, that this can be one of the most difficult part of this illness to ry and manage.
keep in touch and best wishes.
ek
Erik Johnson created some new information yesterday on his Facebook page, and it inspired me to add it onto Lumigrate. I thought this topic the best one. Erik was residing in the Lake Tahoe area when the outbreak of chronic fatigue occurred there in 1985. It would be reported in the mainstream media, in a rather big way.
Then a few years later I'd find out there was a similar occurrence in my then-home town of Fort Collins, Colorado (where Colorado State University is, which is why I was there, I worked there from age 19 to 34 when I quit to complete my B.S., in Occupational Therapy, graduating in 1996 and becoming an OTR in April 20 years ago (1997)(happy anniversary to me..... ).
I'm grateful an M.D. told me that, and that I remember it. I didn't know about this strange condition at the time aside from my father's story from circa 1939 when he went to Purdue University and fell apart suddenly one day after playing basketball all day over Thanksgiving weekend. I went to my primary care doctor (called general practitioner back then) via the insurance-based medicine clinic I was a regular at for yearly physicals and birth control pills at that time, and nothing more. (Which to a large extent were helping to control cystic acne and crazy heavy menstrual bleeding and horrendous cramps -- NOT realizing what the BCPs were doing to my overall well-being, until later and figuring this mess out a bit better). Although, I'd had a lot of symptoms earlier in my 20s, and late teens, which had improved when I changed jobs, relationships, and homes. Many variables and kind of impossible to sort out what had which effects. Suffice it to say I'm a big fan of 'load theory' due, in part, to my personal experience and history.
Erik Johnson is very active in a Facebook group called Mold Avoiders, which has Lisa Petrison at the helm. She's been creating wonderful information, and they collaborate in the group a lot. There's one thing about the group one has to keep in mind if you go: She does NOT like the reply to comment function, so if you're replying to any comments, you just go to the bottom and add a new comment and refer to whatever it is you're responding to. She nicely will post "Please don't use the reply function in this group." and no give her input if you've done that. Until you put it down below in a new comment on the thread. And the book Erik Johnson created his new topic yesterday about on his Facebook page is required reading to be commenting in the group. But many don't have the book.
So this is a great way to provide some core information for those who are interested and don't have the book. Hopefully it will help inspire someone to obtain it somehow -- ask for it as a gift, purchase it with a dollar saved here or there. The financial needs for people who are ill obviously coincide with lowering or lack of income due to not being well. It's always been a challenge for me at Lumigrate, because I'm not independently wealthy and the website has to somehow make income. If people who are well enough to be working will do supportive things, then those who are less fortunate with their wellness can continue to have free, quality information here. That's the plan at least as of 2017. My hope is those who have not dropped below a certain level will be inspired by those who have, and take the precautions that can be gleaned from studying from those who are activists about complex chronic illness reasons and treatments.
I'm going to first put the newspaper article provided by Erik in the comments, after I'd commented.
Since that's not provided a good quality for reading, I went online and searched the year, and the title and found this from the NY Times: www.nytimes.com/1987/07/28/science/fatigue-virus-has-experts-more-baffled-and-skeptical-than-ever.html
Fatigue 'Virus' Has Experts More Baffled And Skeptical Than Ever
By PHILIP M. BOFFEY
Published: July 28, 1987
WASHINGTON— MEDICAL experts are struggling, with only limited success, to understand a mysterious illness that leaves its victims exhausted for months or years at a time.
The ailment, known as chronic Epstein-Barr virus infection, chronic mononucleosis or chronic fatigue syndrome, has stirred rising concern in public and medical circles over the last two years.
But whether patients have fallen into the grip of a new, worsening scourge or have merely succumbed to the latest health hysteria is confounding many medical researchers. And the more experts study patients who have the fatiguing ailment, the less important a culprit the Epstein-Barr virus seems.
The illness has already caused one highly publicized but sharply disputed ''epidemic'' at a resort community at Lake Tahoe, Nev., from 1984 to 1986. It may have caused an outbreak of 100 cases in the small Nevada town of Yerington from late 1985 to early 1986, according to Dr. Anthony L. Komaroff, director of general medicine at the Brigham and Women's Hospital in Boston.
''Whatever it is, it seems to be growing in frequency,'' said Dr. Komaroff, whose group has studied more than 500 patients suffering from the syndrome. ''Literally every time I say to a friend that I'm studying this illness, and then describe it, they say 'Oh, my God. My niece has it, or my next-door neighbor, or my boss.' ''
Although the syndrome has apparently never been fatal, it can unquestionably be devastating to many of those affected. Virtually all suffer persistent fatigue, in some cases so overwhelming that it curtails work, restricts social life or even becomes totally disabling. Most victims also experience low-grade fever, muscle pains, depression, headaches, recurrent sore throats, swollen lymph glands and allergies.
And many victims are unable to think clearly or to concentrate. Some have likened their condition to feeling like a Raggedy Ann doll with the stuffing knocked out or to an endless bout of flu with the added mental confusion of Alzheimer's disease.
But whether chronic fatigue itself is reaching epidemic proportions or is simply receiving an epidemic of attention remains uncertain.
The syndrome may have gained undue notoriety for a number of reasons: scientific speculations, now discounted, that the Epstein-Barr virus might be causing much of the illness; aggressive marketing of Epstein-Barr laboratory tests that are probably incapable of identifying most victims of the illness; vigorous campaigning by Epstein-Barr patient groups, and far-reaching television and magazine coverage in the wake of the Lake Tahoe ''epidemic.''
Some experts suspect that ''chronic Epstein-Barr virus syndrome'' has become the latest fad diagnosis, replacing iron-poor blood, low blood sugar and thyroid problems as a catch-all explanation for symptoms that cannot otherwise be explained.
''I don't think it's clear that there's an epidemic of this,'' said Dr. George Miller, a professor of pediatric infectious diseases, epidemiology and molecular biochemistry at the Yale University medical school. ''I would say there might be an epidemic of diagnosis.''
Dr. Gary Holmes, an epidemiologist at the Federal Centers for Disease Control who studied the Lake Tahoe outbreak, said, ''A lot more is being made of this by the lay press than it probably deserves,'' adding, ''The problem is that almost every person in the United States has symptoms that are compatible with symptoms of the syndrome.'' No Consensus on Definition
At this point, in most cases of chronic fatigue syndrome, there is no identifiable cause, cure or preventive. Nor is there even an agreed-upon definition. But there is a growing opinion that the syndrome will turn out to include a wide range of illnesses, with causes and treatments differing from patient to patient.
The evolving evidence suggests that some victims of the syndrome have a real organic illness that is not a figment of their imaginations but that it was probably premature for doctors and patients to latch onto the Epstein-Barr virus as the likely cause in most cases of the syndrome, except for perhaps a subgroup of severely ill patients.
Depending on the illness, experts speculate, the cause might be another virus or multiple viruses, other infectious agents, defects in the body's response to an infection, toxic agents, stress or other psychological causes, or perhaps a combination of physical and psychological factors interacting with one another.
To unravel some of the mysteries, Congress has ordered the Centers for Disease Control and the National Institutes of Health to study the phenomenon, and the C.D.C. has been drawing up a strict definition of chronic fatigue to make epidemiological studies more feasible. And investigators at a small number of medical centers are trying to develop diagnostic tests, treatments and vaccines. Psychosomatic or Real Disease
Some virus experts continue to believe that much of the chronic fatigue is psychosomatic. ''A lot of illness that is now being associated with chronic Epstein-Barr virus infection is probably ordinary neuroses which are manifested nowadays as tiredness,'' said Dr. Eliot Kieff, head of infectious diseases at the Brigham and Women's Hospital.
''It's a disease mostly of younger adults who are having difficulties in what are ordinarily difficult phases of life,'' he added. ''These people are very unhappy, and it's often very difficult to sort out how much of their psychological problems come from their illness and how much is the cause of their illness. Most of them do not want to see a psychologist or a psychiatrist. They're looking for a physical cause of their illness and a relationship with their physician.''
Dr. Komaroff, however, is convinced that the chronic fatigue syndrome is ''a real, organic disease.'' although the Epstein-Barr virus may not be the prime cause. Such symptoms as swollen glands, fevers and sore throats ''are hard to attribute to a psychological cause,'' he said, and most patients describe a sudden onset of disease, suggesting an infectious agent.
''When a patient says, 'I was perfectly fine and healthy until one day I came down with what seemed like the flu, but it never went away, and I don't have any energy any more,' that's a very dramatic story,'' Dr. Komaroff said. ''It's not something you can dismiss as primarily a psychological disease.'' Women and Yuppies
The ailment strikes women twice as often as men, for reasons that are not understood. It also disproportionately afflicts nurses, doctors and other health personnel. The most visible victims are often professionals in fast-paced jobs, leading quipsters to dub it ''the Yuppie plague'' or ''Yuppie flu.''
Most experts believe the syndrome has been around for many decades, although some accounts have suggested that the disease might be a new illness sweeping through the population. The clinical symptoms have been described in the medical literature for at least half a century under such names as epidemic neuromyasthenia, myalgic encephalitis, Iceland disease, Royal Free disease and postviral fatigue syndrome. Outbreaks or epidemics have been reported in eight countries dating back to 1934. Between outbreaks, the disease has presumably existed in people scattered through the population.
''It's not new,'' said Dr. Stephen E. Straus, chief of the medical virology section at the National Institute of Allergy and Infectious Diseases, one of the nation's few experts on the illness. ''What these patients complain of has been described for over a century. In each generation, people have a different idea of what it might be and what might cause it. I don't think there's much evidence that it's expanding.''
Nobody knows how many people suffer from the syndrome. Gidget Faubion, president of the National CEBV (Chronic Epstein-Barr Virus) Syndrome Association, a patient support group based in Portland, Ore., estimates that tens of thousands of Americans have it, noting that her organization has attracted some 8,000 dues-paying members and distributed some 60,000 brochures to interested people in two years. But skeptics suspect that many of those people have mild fatigue that would fade into insignificance under intense medical examination.
In the the May 1 Journal of the American Medical Association, investigators at Brigham and Women's Hospital reported that an astonishing 21 percent of some 500 patients who came to the hospital seeking primary care over a six-month period had suffered severe fatigue for at least six months, accompanied by chronic sore throat, aching muscles and headaches. But other scientists find it hard to believe that one in every five medical patients is really suffering from chronic fatigue. Articles Generated Interest
The current round of interest in the syndrome was generated, in part, by two articles in the January 1985 Annals of Internal Medicine that pointed to the Epstein-Barr virus, which is the cause of acute mononucleosis and of two cancers that are rare in this country, as a possible cause of the chronic fatigue syndrome.
Some 90 percent of all adult Americans have been infected with the Epstein-Barr virus, most without being aware of it. The virus lies dormant in a small fraction of their white blood cells and salivary cells, ready to proliferate should the immune system weaken.
The two articles reported that a substantial majority of some 75 patients with persistent fatigue had high levels of antibodies to the Epstein-Barr virus. That did not prove that the virus was causing the syndrome - it might easily have been an effect of the illness, emerging after something else weakened the immune system - but the articles raised the provocative possibility that the virus might somehow be responsible.
That was enough for the commercial testing industry, however. One aggressive company, in a 1985 mass mailing, urged doctors to buy its Epstein-Barr evaluation kit because ''one can expect enormous benefits to patients who can finally be told of a possible organic basis for their illnesses which for so many patients would otherwise be interpreted as 'neurotic' with resultant feelings of self doubt.''
At the same time, the National CEBV Syndrome Association was formed, and ''physicians throughout the United States were inundated with requests to evaluate chronic fatigue,'' according to a medical review article published this year. 'They Were Walking In'
Concern over the syndrome was especially heightened by the Lake Tahoe outbreak, when two doctors in Incline Village, Nev., found that they were treating a large number of patients for chronic fatigue from late 1984 to late 1986 and that many had elevated levels of antibodies to the Epstein-Barr virus. But the significance of this outbreak remains in dispute, even after an investigation of 134 of the Nevada patients by C.D.C. epidemiologists.
''We had an understanding that over 100 patients were severely affected by this syndrome,'' Dr. Holmes, who headed the C.D.C. team, said in an interview. ''But when we got there we found that a lot of these people had undistinguished symptoms. They were continuing to work. They were walking in. They really did not have any major signs of illness.''
A report of the investigation, in the May 1 Journal of the American Medical Association, said that 15 of the sickest patients had elevated levels of antibodies not only against the Epstein-Barr virus but also against measles virus, cytomegalovirus and herpes simplex viruses 1 and 2. The report suggested that Epstein-Barr antibodies were of no value in diagnosing chronic fatigue syndrome and that ''the illnesses may not be caused by EBV.''
Still, Dr. Holmes said ''something striking'' appeared to be going on in some of the patients that was ''not a figment of these people's imaginations.'' He added, ''When you get called by people who say they run marathons and participate in iron man triathlons and now can hardly get out of bed or brush their teeth, you realize that something is happening.''
Dr. Komaroff's group has drawn more alarming conclusions from studying some 175 cases at Lake Tahoe. He said ''quite a number'' of the people have been fully or partially disabled, while only about a third say their conditions have improved.
Scientists are now pursuing a range of studies to decipher the puzzling syndrome. Dr. Robert Gallo, one of the nation's leading AIDS researchers, and his colleagues at the National Cancer Institute are seeking to determine whether a newly discovered virus, called HBLV, may be involved in some cases of the chronic fatigue syndrome. Dr. Komaroff and his colleagues are studying how victims of the syndrome fare over time.
Dr. Straus and his colleagues at N.I.H. are exploring possible treatments for the disease; initial results from use of the drug acyclovir showed that it was no better at relieving symptoms than an inert pill. And investigators at a small number of medical centers are exploring other treatments, seeking diagnostic ''markers,'' and working on a vaccine for the Epstein-Barr virus.
Here's what Erik Johnson had posted on his Facebook page, then posted to the Mold Avoiders group, which inspired the above - referenced conversation, AND therefore my creating this comment on this thread:
Surviving Mold by Dr Ritchie Shoemaker.
Otter Bay books. 2010.
Chapter 17. CFS and other medical mistakes. by Erik Johnson (Page 441)
Paging Dr. Semmelweis.
This cannot be right. There must be something fundamentally flawed in the medical mindset. Trying to look at this objectively, what right do doctors have to refuse to listen? If a doctor claims to have any expertise on CFS, how could he be disinterested in hearing from a CFS prototype who was at the very inception of the syndrome?
If a historian wants to make sure they have their facts straight on how the syndrome began, what right do they have to turn away from my story?
One thing I know for sure. If any patient felt they were subject to this mold-effect and wanted information, they certainly would never get it from a doctor who refuses to accept information and input about its existence. To my astonishment, I could see that the obstacle to getting doctors to listen is that they had defined "research" as strictly "Peer reviewed literature", and nothing more.
In a kind of anti-science irony, nothing that has not already been written by someone with "researcher" on their name badge can ever get researched, for without credentials, it remains in limbo, removed from consideration. Without research, clues stay anecdotal, discarded for the very reason that they have not yet been researched.
Not even the force of a publicity around a "new dynamic" of unexplained illness and a brand new syndrome was enough to break through this ironclad philosophy, and I was completely stymied.
I started collecting 'rejection slips' from all the top-name CFS doctors and researchers. Mention of my participation in the "Original CFS cohort" did open a few doors, yet I soon saw a pattern to the progression of events..
The moment I mentioned I had clues from "ground zero' and how much I had benefitted by mold avoidance, it was like watching the lights go out, and a door slam, shut. I learned to see by the look in their eyes, the exact moment when mild curiosity turned to concerted disinterest and conspicuous indifference.
It was the exact moment when doctors perceived I wasn't looking for their medicines, but was handing them a clue which demanded action on their part. I gave them a chance to help their patients by telling them how I had helped myself, and they wanted no part of it..
Many doctors like to think of themselves as patterned after the renowned diagnostician, Sir William Osler, who famously advised "Listen to the patient, he will tell you his diagnosis," yet no doctors were listening to me, not even when i attempted to tell them how important this was to my recover, and how it had affected others.
I had started out passively, just quietly suggesting that I might have an interesting clue, but when this was easily brushed aside with mild dismissals, I tried an increasingly aggressive approach. The doctor response was absolutely commensurate with how hard I attempted to break through the blockade. The harder I tried to tell them, the more they refused to listen, and the angrier they became. It would become a shouting match, and nothing was accomplished.
Even recounting the Semmelweis story and reminding them of Osler's words failed to make a difference. These doctors were bound and determined to never hear this clue.
And from 2013:
CFS may have been the warning for nanoparticles that nobody heeded
September 13, 2013 at 3:21pm
During the 1985 Incline Village “mystery illness” it seemed that common household molds were suddenly having a devastating effect on all of us.
Everyone knew it, everyone noticed this, but it was ENTIRELY attributed to changes in the immune function of patients due to infection, and NEVER on the possibility that something in the ambient atmosphere might have potentiated the toxicity of fungal-products from common molds.
I have been telling everyone for 25 years that I have had BETTER results by treating mold “as if it were Plutonium” than anything I have seen from the most aggressive chemotherapy aimed at viral or bacterial infections.
This is how I came to be known as “The Mold Warrior”.
”Mold Warriors” by Dr Ritchie Shoemaker. Chapt. 23 “Mold at Ground Zero for CFS”.
www.moldwarriors.com/
In my military career as a launcher specialist for “The Neutron Bomb”, I was trained to look for what DOESN’T happen after a neutron strike: A LOSS of immune function which leaves one susceptible to nearly anything, as opposed to consequences arising as a normal consequence from normal infection.
That is exactly the type of effect that I witnessed during the 1985 Tahoe Mystery Malady: An inexplicable loss of immune function that appeared to correlate to environmental locations.
I have read that fungi serve as “bionanofactory” for biosynthesis of nanoparticles.
It seems to me that mold does not normally have access to fine metallic particulate matter which can be processed into “ultrafine” nanoparticles, as “modern pollution” did not exist.
These metallic nanoparticles are known to affect the microglial cells and induce CP450-decoupling” with the subsequent production of Reactive Oxygen Species, which is entirely consistent with CFS.
The activities of humans have dramatically changed the potential for contact between fungi and ubiquitous airborne metallo-particulates.
If mold is capable of what the article below [refers to this article www.nanowerk.com/spotlight/spotid=465.php] says mold is doing… and is converting ambient atmospheric fine metal particles into even smaller nanoparticles… the global environment is in deeper trouble than anyone suspects.
The inception of Chronic Fatigue Syndrome just might have been the cautionary warning for nanoparticulates that nobody heeded.
In the Saratoga Springs manual, the hints of a sudden surge in fungal pathogenesis is mentioned in several places where the effects matched nothing in THEIR mycotoxin literature. Dr William Croft, who published the first peer reviewed abstracts on trichothecene toxicity in the United States, said the effects were “radiomimetic”.
IAQ experts Pierre Auger and Harriet Burge agree that T2 (trichothecene) mycotoxins fall short of achieving this level of illness.
My own experiments with mold samples suggests that there are special times when this effect blazes forth with an intensity and magnitude that causes a “hit and run” effect upon the neuro-immune system which baffles physicians trying to identify a toxic substance.
Several years ago, I saw an abstract which described the capability of certain molds and bacteria to act as biosynthesizers of nanoparticles.
My speculation is that the mutation discovered by Dr Shoemaker has resulted in the conjugation of this resistance-property by various powerful “toxin forming” molds, which are now capable of withstanding the antimicrobial effects of human-introduced ubiquitous metal particulates, and processing them into extremely hazardous “nano-plumes”.
This resistance trait emerged in the late 1970′s, just prior to the incredible surge in unexplained-illness such as Gulf War, fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, multiple chemical sensitivity, as well as massive increases in autism, Parkinsons, MS, and ALS.
The CFS epidemic strangely centered upon north Lake Tahoe, and oddly spared an almost identical demographic at south Lake Tahoe, only twenty miles away.
I believe that the emergence of “CFS” in such an otherwise pristine area represents the “canary” of a much larger ambient environmental alteration.
The reasons for which might be a special condition of application of ultrafine silver particles to this specific region.
During the 1980′s, the local ski resorts embarked upon an illegal and untested campaign of intense cloud seeding with silver iodide. Many environmentalists were concerned that in addition to the approved mountaintop dispersers that were strategically placed upwind, that private aircraft were covertly targeting every storm from and potential precipitation heading toward the resorts.
My speculation is that this intense seeding was responsible for gradually increased resistance in the microbial terrain of north Lake Tahoe, which combined with the newly potentiated indoor toxic molds, resulted in “spot colonies” of extremely hazardous molds which emitted nano-plumes and manifested in unprecedented immune suppression that ALLOWED people in these environments to acquire the opportunistic infections which might otherwise have been warded off, resulting in “clusters” of unexplained illness and the inception of the chronic fatigue syndrome.
Does anyone remember the printers in the Truckee teachers lounge, as described in Osler's Web?
Perhaps Gerald Kennedy went right to the point in asking Dr Gary Holmes to look at the printer ink and the air filters.
-Erik Johnson
And this from 2013
Nanoclast Semiconductors
Nanotechnology Nanoparticles Emitted from 3D Printers Could Pose a Risk
By Dexter Johnson
Posted 29 Jul 2013 | 4:38 GMT
The migration of 3D printer technology from factory settings to people’s homes has triggered mainstream excitement about the technology's potential. In fact, it has even turned gun control laws on their ear after it was demonstrated that you could build a fully functional firearm with one of these 3-D printers.
What buyers of these systems may not have considered is that operating them could expose them to toxic nanoparticles. The hobbyist may now have to think about this potential risk when operating a 3-D printer in a garage or other indoor environment because of research out of the Illinois Institute of Technology showing that commercially available desktop 3-D printers emitted potentially harmful nanoparticles that could accumulate in indoor environments.
The research, which was published in the journal Atmospheric Environment (“Ultrafine particle emissions from desktop 3D printers”) demonstrated that common, commercially available 3-D printers available for home use emitted between 20 and 200 billion ultrafine particles (UFPs) per minute. The UFPs are, by definition, nanoparticles because their diameters are no larger than 10 nanometers.
The wide size range for the UFPs is due to the different kinds of printing technology used. A 3-D printer that uses a lower temperature polylactic acid (PLA) feedstock emits about 20 billion UFPs per minute whereas a higher temperature acrylonitrile butadiene styrene (ABS) feedstock printer produces about 200 billion UFPs per minute.
Alarming as these figures may sound, these emission rates are about on par with what is generated from “cooking on a gas or electric stove, burning scented candles, operating laser printers, or even burning a cigarette,” according to the Phys.org story covering the research. It’s hard to imagine that candles and gas stoves need to be eliminated from people’s homes. So, what gives?
The real measurement of risk involves not only the level of exposure we have to a given material but the hazard associated with that material because of its unique properties. UFPs generated by the 3-D printers the researchers studied had varying degrees of toxicity, depending on the feedstock they used.
While PLA-generated UFPs have actually been shown to be biocompatible with mammals, previous studies have demonstrated that thermal decomposition byproducts from ABS processing have toxic effects in mice and rats.
The researchers remain somewhat circumspect about how this risk should be addressed. Their main advice: the operator of a home 3-D printer should ensure that the place where the machine is stationed is adequately ventilated, thereby reducing the exposure to the UFPs. Nonetheless, they note that more research needs to be performed to evaluate the risk from these 3-D printers.
And in the comments under ^this^ note on his Facebook page, one of the links I particularly found relevant to put here is this: www.sciencedirect.com/science/article/pii/S0169409X11002900
Modern methods for delivery of drugs across the blood–brain barrier
Yan Chena, Lihong Liub, 1
a School of Pharmacy, CHIRI, WABRI, Curtin University, GPO Box U1987, Perth, Western Australia 6845, Australia
b Institute of Bioengineering and Nanotechnology, 31 Biopolis Way, Singapore 138669, Singapore
Received 6 August 2011, Accepted 21 November 2011, Available online 28 November 2011
Abstract
The blood–brain barrier (BBB) is a highly regulated and efficient barrier that provides a sanctuary to the brain. It is designed to regulate brain homeostasis and to permit selective transport of molecules that are essential for brain function.
Unfortunately, drug transport to the brain is hampered by this almost impermeable, highly selective and well coordinated barrier. With progress in molecular biology, the BBB is better understood, particularly under different pathological conditions.
This review will discuss the barrier issue from a biological and pathological perspective to provide a better insight to the challenges and opportunities associated with the BBB. Modern methods which can take advantage of these opportunities will be reviewed.
Applications of nanotechnology in drug transport, receptor-mediated targeting and transport, and finally cell-mediated drug transport will also be covered in the review. The challenge of delivering an effective therapy to the brain is formidable; solutions will likely involve concerted multidisciplinary approaches that take into account BBB biology as well as the unique features associated with the pathological condition to be treated.
This is another particularly relevant link he provided on the comment thread:
journals.plos.org/plosone/article
Silver Nanoparticle-Directed Mast Cell Degranulation Is Mediated through Calcium and PI3K Signaling Independent of the High Affinity IgE Receptor
Nasser B. Alsaleh, Indushekhar Persaud, Jared M. Brown
Published: December 1, 2016https://doi.org/10.1371/journal.pone.0167366
Abstract
Engineered nanomaterial (ENM)-mediated toxicity often involves triggering immune responses. Mast cells can regulate both innate and adaptive immune responses and are key effectors in allergic diseases and inflammation.
Silver nanoparticles (AgNPs) are one of the most prevalent nanomaterials used in consumer products due to their antimicrobial properties. We have previously shown that AgNPs induce mast cell degranulation that was dependent on nanoparticle physicochemical properties.
Furthermore, we identified a role for scavenger receptor B1 (SR-B1) in AgNP-mediated mast cell degranulation.
However, it is completely unknown how SR-B1 mediates mast cell degranulation and the intracellular signaling pathways involved. In the current study, we hypothesized that SR-B1 interaction with AgNPs directs mast cell degranulation through activation of signal transduction pathways that culminate in an increase in intracellular calcium signal leading to mast cell degranulation. For these studies, we utilized bone marrow-derived mast cells (BMMC) isolated from C57Bl/6 mice and RBL-2H3 cells (rat basophilic leukemia cell line).
Our data support our hypothesis and show that AgNP-directed mast cell degranulation involves activation of PI3K, PLCγ and an increase in intracellular calcium levels. Moreover, we found that influx of extracellular calcium is required for the cells to degranulate in response to AgNP exposure and is mediated at least partially via the CRAC channels. Taken together, our results provide new insights into AgNP-induced mast cell activation that are key for designing novel ENMs that are devoid of immune system activation.
I want to note that the authors of this study referred only to the silver nanoparticles being used in consumer products due to their antimicrobial effects. But Erik and I 'bonded' on Facebook (from my perspective) over my knowledge and contribution to the discussion about 'cloud seeding', which he referred to as you see, above, occurring occultly in the Tahoe area. The cloud seeding program was performed by the US Government, out of an office in Durango, Colorado, and a propaganda / education film was created which is of the type I recall seeing in Jefferson County Public Schools in the 1960's and 1970's (I graudated 1978 and recall these films more in elementary and junior high).
The film was produced in the early 1960s, and was very entertaining to watch -- they had a great blues musician providing music and they'd show him playing. I've since seen the movie thanks to a geoengineering activist named Jim Lee who has a website called Climate Viewer. It's on his timeline, around 1963 I think it is.
Another Facebook connection for me, who I mention here if YOU wish to get these great resources as your Facebook friends.
I suspect, and it's just a suspicion, that if the government was telling us the program started officially at a certain point in time, they were doing it suruptitiously prior to that. Growing up in a family that moved to the mountains southwest of Denver in 1955, with an 8 mm movie camera and other cameras for still photographs, I recall as a child (born in 1960, five years after they'd started having experiences together there), being wishful every year for an outdoor Easter egg hunt, as I'd seen in the movies. It seemed that they had certain types of winters the first years they were there, and it all changed on April 1, 1958 with a massive storm. Of course, there had been massive storms before that for 'ever', here and there at time, but for twenty five years after that point in time there were 'hard winters'.
And this was confirmed when -- as luck would have it -- I worked for a Colorado State University organization which had a lot of programs in our and other surrounding buildings having to do with climate. The Colorado Climate Center was among them. And my new husband was one of the researchers doing some outdoor studies of what people observed to do with air quality.
So we'd be out as test subjects saying what we saw, and along would come the people walking to and from the other buildings, such as the CCC people, or people who worked for NOAA, and graduate students and researchers for the Atmospheric Sciences Department, which was at the top of the hill and the largest building there. CDC was across the way at the Foothills Research Campus, as well as wind tunnels and all kinds of stuff. I even had auditory processing tested in the building where the wind tunnels were as part of my getting approved for special services as a student having disabling learning differences.
I just recall saying what a mild winter it was to one of these knowledgeables walking past and he said that it was actually an average winter but for 25 years Colorado had just completed a streak of hard winters. I remember thinking how much snow we'd battled, from the time I was born (and before), and how cold I was my whole life -- miserable -- which had to do with the health issues brewing in me that were giving me symptom after symptom in a roll out of what would eventually lead to a total health collapse and my digging out of it, just as I had the snow storms. Over and over.
Also as luck would have it, I'd be introducted to a kid moving to the area, whose family member lived about a mile up the road from my family -- and they worked for the weather service. They had a monitoring station on their property. And between their property and ours, the person introducing us (who has since died of cancer, and her son fought cancer as a child) had a montoring station on their property which this guy had arranged for. Why two monitoring stations so close together? We seemed to get more snow in that small area than anywhere around.
My poor parents had actually rented a place about ten miles away to be sure they could handle the weather and liked the area before buying a little ranch to raise golden retrievers and a family on. In those 'normal' winters, and then they bought this place over the summer/fall and for a while it was fine, then 'wham', as I said, April 1, 1958. And thereafter. There ended up being five and seven feet of snow in storms that occurred in the new century, making the three feet of 1958 seem like child's play. On that one the grader they'd sent to clear the road -- not the usual snow plows on big dump trucks with sand as they couldn't get through -- turned around across the road from my parents' place and went back down.
I'd then figure out how toxic the place was and wonder why my mother hadn't had fertility issues prior to moving there, and barely had me -- unhealthy as I was and am, at least I made it full term, perhaps to do with the still born baby she had prior to me detoxifying her. Just my personal theory.
In 2015 I'd decide to contact the woman who was a teen of the family that sold the place to my parents in 1955. No, they didn't have any health issues at that time, they just wanted a bigger ranch and sold and moved on.
Hmmmmmm.
I encourage YOU to put on your detective hat, get out your magnifying glass, dust off all the critical thinking skills and science abilities you have, and any other talents that help you get big projects done and consider what's contributing to the health issues today, and the wellness that's happening in others. Don't give up, persist. Peel the onion.
And make friends on Facebook, get in GOOD groups which are well managed and mature and without deranged unhealthy / toxic behaviors. This one is among the really good ones. Erik is aware how he comes across, it's referred to on comments on his topics in his Notes section. He's accused of trying to make this about him. He seems that way at first until you see that he shows up on Facebook almost every day, and contributes over and over to what is like a broken record to those who are experienced, but which is NEW to those newly working to learn. I thank him for his patience with me, and I am LumiGRATE-full to have the platform here with Lumigrate to post a bit about all he offers, in hopes people will find it via finding Lumigrate's topics.
Live and learn. Learn and live better! ~~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!