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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Osler's Web - Read it or RE-Read it! History REPEATING Itself, Sadly

Discussion in 'General ME/CFS News' started by muffin, Jan 5, 2010.

  1. muffin

    muffin Senior Member

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    I have been re-reading Hillary Johnson's brilliant book, Osler's Web, again. In truth, when it first came out I was sick with severe CFIDS/FM for two years and could NOT read, write or understand what was being said to me. My husband read the book and gave me a summary and then I would pick at different parts of the book and try to read and understand. Well, NOW that I can read and have some understanding, especially given the newly discovered Retrovirus, I have gone back and really read Osler's Web. I am SHOCKED that nothing has changed since that book came out in 1996. The Retrovirus discussions date back to the 1980's, issues with the CDC people are still the same but names have changed, and NOTHING has moved forward vis-a-vis the CDC and CFIDS - NOTHING.
    I stronly urge everyone to get this book and read it. You will be upset and shocked that nothing has changed since the 1980's = nothing. They had ample evidence of a Retrovirus exploding cells and causing cancers way back then. I don't know if the XMRV of today and the Retrovirus of the 1980s (Defreitas and Cheney, et al) are the same OR we have more than one deadly, cancer-causing Retroviurs out there and CONTAGIOUS (in addition to the HIV Retrovirus). But, from my reading it really does appear that CFIDS is contagious and not just through blood or semen but airborne.

    When finally, the real truth comes out on what the CDC has been hiding from the American public on CFIDS and the Retrovirus(es) that the CDC has KNOWN about since the 1980s, there will be an uproar of epic proportions. I am NOT into the X-Files type conspiracy stuff, but there is no other explanations for all that has gone on for three decades with regards to CFIDS and the Retroviruses that the CDC knew damn well about and did nothing about. WHY keep us looking like nuts and not terribly sick people when the timeline was that CFIDS and AIDS were hitting the public at about the same time? WHY ignore CFIDS but throw billions of dollars at AIDS? Why? Better advocacy? Deaths from AIDS but slow, lingering deaths from CFIDS so it's not an "emergency"? The CDC, I propose, is hiding a terrible secret about CFIDS. It may well be they or another Federal agency engineered this Retrovirus(es) and it got out accidently or delibertly into the public and the CDC had to cover it up, with aid and assistance of NIH and other Fed health orgs. It's NOT just insurance money at stake, though that too plays into this. There must be other secrets that are being kept about CFIDS by the CDC/NIH. Sounds nutty - but not when you review the long history of CFIDS, the insane amount of work and research by the Gang (Cheney, Peterson, Defreitas, Bell, Klimas, others), and many other worldwide labs and doctors who, time and again, have proved the damage to our bodies and brains.

    So, bottom line: READ Osler's web - or re-read it. Next, email or write letters to Congress and those in charge of funding for NIH/CDC and those that can begin investigations into the CDC. Yes, this has already been done because of Ms. Johnson's book and the "cover his butt" Whistleblower William Reeves back in the 90's - but we have to scream more and louder about the CDC and the total lack of any forward movement on their part for CFIDS. Truthfully, I would just prefer to see the CDC cut out of any CFIDS work. However, some of the public and doctors still look to these fools for validation, education, etc. So they have to remain, sadly, in our game. But it is high time to get rid of Reeves, his associates, his contractors (who have made a ton of money since 1988 on CFIDS and nothing to show) or we will be in the same position as we were back in the 1980's.

    Rambling and Mad. Sorry. But I see no change to CFIDS and the CDC since the early 1980s. And the euphoria over the XMRV is sort of like the euphoria of the Defreitas/Cheney Retrovirus back in the mid/late-1980s (published in 1990). And as we now know, nothing came of that Retrovirus work either. I fear this newly discovered connection with CFIDS and XMRV will just be a sad repeat of the Defreitas Retrovirus all over again. My very terribly fear.

    Thoughts on the above rambling????
     
  2. muffin

    muffin Senior Member

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    I would esp. like to see Cort's take on the above rambling. CORT: Your thought????
     
  3. Koan

    Koan Be the change.

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    Hey Muffin,

    This is why Hillary Johnson is so passionate. She has been at this for such a long, long time. I first read her piece in Rolling Stone in... can't remember when... long, long time ago.

    If reading the book ignites such passion, imagine what writing it (what an accomplishment that was!) and publicizing it, and touring it, and reissuing it and and and and and...

    So, yeah, Muffin, I hear you. :worried:
     
  4. markmc20001

    markmc20001 Guest

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    good one muffin. I think it comes down to money. They (the government and insurance companies) are afraid of the strain on the SSDI systems, and insurance systems, and don't want to pay the claims for the sick people. The insurance companies own the senate, as shown by JOe Leberman(from Hartford, CT) single handily taking down the public option in the recent health care legislation. I deal with an LTD company on an ongoing basis and that big business can get away with literally murder and go untouched. It is sickening. the LIES and distortions are unbelievable......and difficult to fight when sick and brainfogged.

    In my mind, the CDC is probably owned and influenced by big business, just like the rest of the government. The US is really a facist system, and the crimes have become quite evident recently. people need to get all the lobbying, and campain funding out of governenment. then the officials can serve the people like the constitution says.
     
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  5. muffin

    muffin Senior Member

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    Correct me if I am wrong, but didn't Hillary Johnson ALSO have CFIDS? I think somewhere in my very damaged brain I thought that. And yes, I don't know how Hillary is able to stay on this topic when SHE sees and KNOWS deeply all that has gone on in the last 30 years and then without change. I would be stark, raving mad were I her. But thank GOD we have her and her book and now website/blog. I have sent many people to her website, including the Head of the CDC, so that he could read why we are all mad as hell at the CDC/REEVES. We sound like nuts, but if anyone has 1/100th of a brain and can see the tons of research on us, well, how can one NOT believe this is a terrible, deadly (in the end, shortened life) and an epidemic that has been allowed to continue for decades. I do have to wonder how many people have died from CFIDS (the damage to our bodies, brains, cancers, other related/assisted diseases). This should have been part of the CDC's job but isn't.
    I really don't understand how the CDC has gotten away with this travesty for so long without someone, somewhere figuring out or ratting them out on what has really gone on behind the doors of Federal health agencies. I guess I am naive even though I did work and live in Washington DC for many, many years.
     
  6. Katie

    Katie Guest

    Muffin, it might make you feel better to know that the CDC replication study is being done by the retroviral labs and the HIV folk, NOT Reeves. Though they are more concerned with the blood supply than us, this is the best step we could hope for at this point. There's also been suspicions that the Reeves Wichita cohort isn't fit for purpose and CFS docs are being asked for samples. It's a travesty, but we live in a new age of Facebook, webcasts and we are finally connected internationally and not alone in our beds and sofas.


    I'm finding it really hard to wait for all this to unravel, we have some heads in the UK that seriously need to roll but we'll see.
     
  7. muffin

    muffin Senior Member

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    Katie: The CDC will find a way to damage this study regardless of what lab does the replication. In the lab doing the replication, there are a number of people who have damaged CFIDS in the past. Can't remember names now, but those people are there doing the replication. I find solace in the fact that XMRV replication is being done by outside labs as well - those I trust and can counter the CDC damage. But again, we get excited about this Retrovirus as we got excited about the 1990 Defreitas/Cheney/Peterson Retrovirus study that came out and was killed off by the CDC, NIH and CAA (funding). All of the evidence was there for great damage to our B Cells, T Helper Cells, brains, cancers, etc. And yet with all of that research and hard-core proof, nothing was done about the virus. Will the same thing happen again? I just don't know. We need to see more research on this virus and then what meds might help kill off that virus and all the other viruses in our bodies.

    I am sorry about the foolishness in the UK. I think you guys have it worse than us. At least they can't put us in a psych ward if we refuse to say we are mentally ill. That shocked me that the UK can do that! Seems like something from the 1950's and going backwards - being put in a psych ward for not agreeing you are mentally ill. Horrid!!!

    Let's just pray this Retrovirus is it - or a big part of "IT" and then the meds can be ginned up quickly and we sick can get something back for our lives. AND, those that come after us won't live as we have lived - in our own personal hells.
     
  8. jackie

    jackie Senior Member

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    Muffin..thanks for bringing this up to all of us. Even though I've been ill for many years - I was also very isolated (I didn't know a single soul with me/cfs!).

    Had a desk-top computer in the house - but couldn't sit at it. I got a laptop last summer - and the world came alive for me - from my bed! As Kati said, at last we are connected!l

    I'd never even heard of Osler's Web until I came on this Forum. I began to read Hillary's Blogs and felt the same sense of outrage that you're experiencing. I have yet to get the book (asked for it for Christmas - but signals got mixed up...am treating myself to it...and now, due to longterm antiviral treatment, I'll be able to sporadically read/comprehend!)

    Mark mentioned something about "overloading the system" and that has been nagging me for years. I applied and was awarded SSDI back in '98 - on the first try, without an interview, without an exam, apparently this is unusual. I was extremely ill, and had been seeing several dr's (including a Neurologist, Rheumatologist, Pain mgmt doc, as well as Primary Care - lots of tests, lots of files, LOTS of documentation!)

    BUT...WHAT did I get it for? I always wondered what "they" said I had? CFS? ME/CFS? FM? what? I know for certain what they DIDN'T think...that what I had was VIRAL. I wasn't seeing an Infectious Disease Dr. in the 90's

    Always too much of a coward to question this. For all I know - Physchiatric?

    Again...thanks for the reminder!

    jackie.... (found my Smiley's:victory: - thanks to Maxine!:D)
     
  9. Katie

    Katie Guest

    We are facing a dirty battle, no fairplay rules just every person for themselves and the greater 'world view' but I take heart that XMRV isn't just about CFS. It's about the blood supply (widespread panic, HIV style fear, lessons learned, PR disaster), prostate cancer (legitimate, big C), autism (widespread, acknowledge, sympathetic, well funded), FM (fringe, but better regarded than CFS), GWS (that will play so well in the media and those men and women will finally get their recognition) blood cancers such a lymphoma and leukemia (big C always sparks interest and legitimacy), Neimann-Picks Disease (Childhood Alzhiemers, there's already a high profile case of twins with XMRV positive parents) among others to be discovered such as female cancers potentially. We've got hang on to some coat tails and spread the legitimacy of XMRV about and rename all of us who are positive ASAP. For those of us who are negative then a new fight begins as the CFS wastebasket sits in Reeves office.

    Whatever happens, advocacy has got to kick up and gear and make the best of the publicity.

    Oh, we do have one little star over here beavering away - Dr Jon Kerr, his gene expression work is shaping up to be something rather special for us all. He's got a $1.6(US) joint research grant with one Dr Judy Mikovits, that is going to be a potentially pivotal study. Hope abounds. But disease does a fair bit too, especially in January, this month generally sucks for me!
     
  10. muffin

    muffin Senior Member

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    I don't know if things will get worse, but I won't bet hard cash that things will get gloriously better either. We have been down this road before - many times. I do hope that THIS TIME something will change. Maybe the fear that cancer is involved will motivate the Feds and private researchers to do something more and we CFIDS sick will benefit, somehow.

    As for my proposed cover- up: at some point someone within the CDC or other Fed org will open their mouth and tell what they know - if even on their death bed. I really am not an X-Files type of person, but really, come on...it's more than just money. Why spend billions on AIDS and the meds for those poor sick people were/are extremely expensive. I guess they were gracious about it all and just died quickly while we CFIDS people didn't die quickly - not being cruel here, just time involvement for insurance to pay for treatments, meds, disability, etc. Too tired to think.
     
  11. Koan

    Koan Be the change.

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    Dr Kerr's work has kept me from despair many a time in the past. It's been an up and down experience, for sure, but the hope his work generated in me never completely disappeared.

    I give Dr Kerr a BIG star!

    Re all else you said: I agree. The linkage with other conditions and the threat to the blood supply are the rather horrible paths out of the nightmare. Or, rather, the reason we should say to everyone else: Welcome to our nightmare.

    In my first career, in the 1970s, I was a Child Care Worker who was taught, and who believed, that Autism was caused by "refrigerator mothers". Can you imagine the anguish those poor mothers must have felt. Thank God I dealt only with the children and had no opportunity to hurt those poor, poor women. But, I believed what I was taught. Remembering this keeps me humble.
     
  12. Katie

    Katie Guest


    http://meagenda.wordpress.com/2009/...ard-for-mecfs-research-for-drs-mikovits-kerr/


    I think MEAgenda (the wonderful resource she is) has got all the information you are looking for on this one page.


    I was also trying to find another website that helped fund Dr Kerr's recent gene expression study because they talked about his replication study being much slower because he was focusing on getting a really good standardised test and that it wouldn't be until the summer until we heard from him. I (think) found the link through this site so I'm going to search for it. It was really good for explaning what was coming up.
     
  13. klutzo

    klutzo Senior Member

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    Hi all,
    It's been a long time since I read Osler's Web, but I could have sworn there is a section in it where she discusses the joint secret spraying program of the US and Canadian governments, in which they let loose infected mosquitos over Edmonton, Alberta and Punta Gorda, Florida, in 1980 or 1981, I believe.

    I only know details about the Florida one, since I live in Florida. Thick clouds of mosquitos suddenly appeared in Punta Gorda, and the official story was that they were escaping from a fire in the Everglades, 200 miles to the southeast. Local scientists complained that could not be true, since mosquitos won't move 2 miles to escape a fire, let alone 200, but were shouted down by Federal govt. "experts". Within a short span of time, 2/3 of the then small town had come down with what we now call CFS. Note the 2/3 number. That is the exact same percentage as in the Lyndonville, NY and Incline Village, NV and London Hospital cluster outbreaks, as well as the same percentage of close friends and relatives of patients who develop markers for CFS within 10 yrs., according to Dr. Bell of Lyndonville. So, if true, there is your reason for the hush up.

    It's the same story with Lyme Disease, which escaped from a sloppily run govt. biowarfare lab on Plum Island, NY, the first place upwind of the town of Lyme, CT.

    The govt. learned from the scandal of the Tuskeegee Incident (poor blacks deliberately infected with syphilis and not treated to chart the course of the disease). They did not learn to stop experimenting on citizens, which believe it or not, the law allows them to do in this country!!! They just learned to hide it and deny it a lot better, since all moral people would find it outrageously unacceptable.

    Our govt. is not moral. I agree with Mark that it is fascist. Multinational fascist corporatism to be exact.

    klutzo
     
  14. Dr. Yes

    Dr. Yes Shame on You

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    Not true. It can happen here too.
     
  15. starryeyes

    starryeyes Senior Member

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    The link worked for me Levi.

    Muffin – I agree with what you wrote and that was my first reaction to the XMRV discovery. I read Osler's Web cover to cover with a dictionary years ago. I do think this time will probably be different because the WPI is well aware of what happened and I believe they have put things in place to ensure that doesn't happen again.

    Markmc – I agree with what you're saying too about the financial strain CFS can put on the systems.

    Oh, is that what happened? Thank you for this synopsis.

    That's why you were awarded SSDI so quickly. You already had everything in place that they make most people do when they apply. That's weird that they didn't give you a label for it.

    That's awesome! :)

    Koan - It was only back in the '70s that mothers were accused of causing Autism in their children? Wow! I thought it was at least the '20s. Goodness.

    Kutzo – I was always a mosquito magnet and I have wondered if that's how I got CFS. What you say about massive mosquito spraying is frightening. With the numbers you give the possibility of this is very strong.
     
  16. muffin

    muffin Senior Member

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    Klutzo: I have not gotten that far but I too remember something about fly overs and spraying along the US-Canadian border. I think there might have been other areas in the US/Canada as well that were "hit". Will get to that part and post it.
    I also recall reading somewhere (NOT in Osler's Web) about "Chem Trails" as recognized by authorities who would know what they were looking at. What is in those Chem Trails (up in the sky spraying) is not known to the public.
    I do know that our government is not above using its own people as guinea pigs. Yes, the Tuskeegee thing went on for a long time before someone said that they would inform the public, etc. if the poor African American men (and their wives, girlfriends, other sexual partners too) were not informed and given proper medical treatment. It seemed to go on for many years to the point of some of them hitting insanity, etc. This is our government and I do NOT trust it, sadly. So would I put it past our government and the research labs to cover-up CFIDS and the Retroviruses (I believe that there were at least two involved, if not more out there) that THEY created and unleashed? No. Again, no X-Files fan here but it is the only thing I can come up with, in addition to insurance, money passing between hands, etc. that could explain how this travesty has gone on for so long in the face of thousands of well researched studies and millions of very sick people. Look at us! We look sick. We act sick. And find one of us that believes it is in our heads. We KNOW we are physically sick. I refused to let anyone tell me otherwise since I live in this horrible, painful, sick body and it was physical.

    When my brain is better I plan on writing Senator Reid yet another letter, but I may propose my little theory and request a full investigation. i have emailed so many Congress people asking for investigation into CFIDS and Reeves, but Reid is the guy I keep going to since he is aware of the CDC and CDC/CFS program going back to the late 1980's. Have to wait for Him and his staff to be done with Health Care Reform and then they can concentrate on CDC.

    IF someone at the CDC or elsewhere blows the whistle on what has gone on with CFIDS, then there will be major movement and funding in undoing what they have done. But someone has to come forward and tell the truth. And now with XMRV and all that it MAY affect (e.g, cancers, autism, etc.) I hope this pushes the Feds/Congress into really doing the job and getting the funding for real research.

    Sorry. My brain is so not working and I just woke up after a three hour nap. I have been very sick with CFIDS and FM for 15 years and made my husband sick for the last four years. My anger is deep since I got sick at age 33 when I was really getting good at all that I was doing. I was at one of the happiest and most fulfilled parts of my life and doing well. Then both my husband and I got a summer time virus, he got better and I got sicker and sicker until I was sleeping 22 hours a day for weeks on end. Fifteen years is a long time to be sleeping (and in pain). So my anger just seeps from my pores. I also have a mortal fear of my niece and nephew getting this disease, and that makes me crazier. My father had Fibro and had to get out of Surgery since he could no longer stand over an operating table and that meant the money went way down for quite some time for my family. And I too have FM and see strong symptoms in my now 9 year old niece that started when she was only three years old. So, Osler's Web isn't making me mad, I've been mad for a long time, the book is bringing it all together for me now that I can read and have some understanding of what Johnson wrote all those years ago. And I see the same patterns from back in the 1980's again. Boy is my brain fried!
     
  17. Katie

    Katie Guest

  18. markmc20001

    markmc20001 Guest

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    Teekjay, ya, Joe Leberman was probably the one to take most of the credit for defeating the medicare style public option, but many of them seem to be bought and paid for to some extent judging by some statements and double talk.

    Muffin. I here you about the "conspiracy theories". there is actually a show with jesse ventura on tru tv now. I kind of blew off these theories to begin with.At first, they just seemed too far fetched. However, after seeing a video called "loose change" on you tube about the 911 attacks, my mind has been changed and I am very aware of the possiblities. I think the 911 attacks have some element of government cover-up or involvment. So I keep an open mind and a skepticle eye. In the case of 911 attacks and beig from an engineering background. I can't believe three world trade center towers, fell so cleanly, from two airplanes. Those buildings were designed for fire and earthquakes and no other sky scrapers had fallen from fire or earthquakes until 911. ANd many examples have happened around the world. A big head scratcher.....anywho....

    be nice to figure out a way to impose change with our power in numbers. :) becuase just a few working indepently won't do it. Everybody has to get out of bed at the same time and scream at them!!!! they can't ignore huge crowds for long!!!
     
  19. dipic

    dipic Senior Member

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    Mark, I suggest reading this guide sometime if you're interested:
    http://www.ccdominoes.com/lc/lcg2.html

    I have followed the "9/11 Truth Movement" since it's very inception. I have done countless hours of research and have concluded that at the very least, there are a lot of questions left unanswered by the official 9/11 commission report. There are many serious issues with it but many have been debunked and the "Loose Change" video is by far one of the worst of well known conspiracy documentaries on the 9/11 events. The above link debunks most of the "facts" brought up in the film.

    Anyway, this probably isn't the best place for this discussion so that's all I'll say. :)

    Stuff makes you think though. Definitely good to keep an open mind and a skeptical eye especially when it comes to the gov. ;)
     
  20. PoetInSF

    PoetInSF Senior Member

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    This is a prime example of how different people can read the same thing and come to completely different conclusions. I'd also recommend re-reading it paying particular attention to DeFreitas affair, how she badly failed two blind tests and yet kept coming up with execuses (controls must've been infected!, cases are not 4 years into sickness!...), how several reputable labs tried to replicate her work and failed, and yet Hillary Johnson (and her fans) continued to cast her as a victim of conspiracy. Even Tom Folks of that insidious organization called CDC, who was cast as a protagonist first and then antagonist, appeared to me have gone extra mile to replicate. Speaking of history repeating itself... I sure hope it won't be DeFreitas redux.
     

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