question about theory of suppression of truth w/cfs for $ reasons

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Oct 31, 2009.

  1. simonedb

    simonedb Member

    I too believe from my experiences and things like reading Oslers Web etc tht for some reason the larger organizations that govern medicine have hindered the research and treatment for cfs
    but what I can't figure out is why---people say its so insurance companies can save money

    yet other times people say insurance companies want us to get procedures and meds etc to make money, they could make a lot of money doing the proper procedures and meds/supps if thats the case so why didnt they look at it that way? I mean which is it, make money off of meds and procedures or deny them?

    I wonder too if perhaps they are allowing research on xand to come out because big pharma realised why not make a lot of money off of antivirals now.
  2. AuntTammie

    AuntTammie New Member

    I could absolutely be wrong, but my speculations thus far have been:

    I believe that money and politics are part of it, but I think that they are hiding something

    ....the sheer audacity of the way that they have treated patients, researchers, etc, the length of time that this has gone on, the fact that they have continued to get away with it despite a lot of protest, the way that their actions would seem to show hatred towards the grp of patients that they say want to help (they have pretty totally declared war on us while still claiming to be trying to help).....all that they have been able to get away with says to me that there is something really big that they are hiding (along with the govt's knowledge, approval, and even encouragement)

    .....I also think this bc of the "secret" file that the UK has on ME/CFS and the fact that they have banned patients from giving blood for a long time, even while claiming that this is a psych illness

    .....the only thing that I have come up with that would fit is something man made and deliberate that got out of hand and started CFS & they do not want us to know about it (whether that is from a vaccination, from some biological warfare experiment, or something else, I don't know, but those are the thoughts i have had)

    while I realize that this sounds a bit paranoid, I also know that any other explanation just does not seem to be big enough to make sense as to why they have been so horrible for so long and have been able to get away with it
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I can see other explanations, based on the quotes of the parties involved in Osler's Web. Ego, prejudice, complexity of the illness, attitudes of doctors and researchers in general at the time as to clinical versus laboratory, sexism and more are all contributing factors that may have led to the halfhearted attempts if not inertia.

    I doubt it is pharmaceutical companies controlling the CDC for money.

    But, I will not be shocked if I have to eat my typed words. But I am leaning toward no conspiracy, just a bunch of arrogant doctors who don't believe a bunch of women, all with different symptoms, have a true illness. Once that mindset was in, the evidence to change it has to be overwhelming.

    Tina
  4. spacee

    spacee Member

    While being studied for 5 years at the NIH and was interviewed with Dr. Straus and was told by one of his colleagues, a woman Rheumatologist, that fever was a "learned response in a child with a mother who had CFS". She spoke of the "stress" of the modern world and what that does to people. That made me really angry and they knew it..

    I think in the 1980's it was discovered that you could get a mouse's temp to elevate in response to stress. I know that Dr. Straus wanted to make a name for himself in this "new discovery" and, sadly, here was CFS. We were in the wrong place at the wrong time. You cannot imagine how much influence Dr. Straus had over the medical community.

    A book that he wrote in 1994 (or 96) is being republished and sells today at Amazon for $199.00.

    He was a highly educated and brilliant man and I guess he was convinced his opinion was correct. You can google his name and get his obit. Stephen E. Straus, MD. He died in 2007 of brain cancer.

    There was a write in campaign to get Straus removed from studying CFS and it was sucessful. But what the NIH did was put him in charge of a big new reseacher wing called "Complementay and Alternative Medicine". Now these people didn't want Straus anymore than we did cause "he had no training in psychology". But he stayed there until his death. While in this position he was able to further the notion that CFS was psychological with his research ties to different medical schools depts of psychiatry. Duke was one of the ones that did research on GBT for FM.

    All really crazy since Dr. S. degrees were in infectious diseases.

    There is more like how he got NIH money to fund Twin Study, which I was in. You absolutely could not answer the questions the way they were worded without saying that you were afraid to exercise. And many other things. There were no questions about really being ill. My twin in disgust sent them an email withdrawing from the study.

    On and on. I don't know the total picture but Straus was a big part of it.

    Spacee
    [This Message was Edited on 10/31/2009]
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    ic

    Well, I am learning about Holmes, Ford and the guy whose name starts with a "K".

    You CFS veterans are certainly educating us.

    And I saw Strauss in the book "Osler's Web," but I am still early on in the book and he seems to be a good guy at this point in my reading.

    Tina
  6. simonedb

    simonedb Member

    that is awful about strauss, re exercise I was at my physical pique when this happened probably as conditioned as olympic athlete, and after over 20 years thats still what I miss the most, running and aerobic exercise etc And yes I am afraid to do it, you learn after trying things over many times its not worth it like hitting your head against a brick wall. For someone to imply its psychological is the most infuriating thing.

    yea i dont know whats at the bottom of it, probably all of the above to some degree.
    But if the medical machine wants to make money it doesnt make sense not to prescribe antivirals etc

    didnt someone say this x virus is from mice or something, and I thought Cheney and others have talked about hw something went awry in the 70s with splicing of stuff scientifically can't remember if it was for vacines or research or what, but yea something that could have got loose a bit and infected some people
  7. quanked

    quanked Member

    I agree with you. CFIDS is not in the DSM IV and until it is there is not a diagnostic code to bill as a mental disorder and heaven knows we need those codes for billing purposes. No code/no charge.
  8. quanked

    quanked Member

    I know of no mental health tx model (s) being developed for CFIDS. I also do not know of any other mental health diagnosis in a human that then excludes them as potential blood donaters.
  9. AuntTammie

    AuntTammie New Member

    Tina, Please don't take this as a personal slam or anything - I have read much of what you have written in the past & I have agreed with a lot of it....but as you said in another post in this thread, you have not read all of Osler's Web, so you probably don't have the whole picture (although I am not basing what I believe just on that book - though it is an excellent book and does give a ton of good info)

    If what has happened thus far with the CDC consisted of "halfhearted attempts" and/or "inertia" as you said, then I would be much more inclined to agree with your take on this.....however, what has happened is a lot closer to all out war than inertia

    they have ignored all valid evidence of real biological/physical findings, and they have also gone out of their way to discredit those who try to share such research.....one exp of this is with the earlier retroviral findings.....not only did they cut their research so short that those they had doing the research said it was impossible to produce any valid findings, but their samples were contaminated, and they failed to follow the protocol that had been used the first time around.....yet they published in 3 journals saying that they were unable to replicate the findings and they slammed the researcher publicly and wrote to her boss (at a university, if I rememebr rt) to try to get her fired.....that's just one exp....their efforts to ruin the reps of anyone doing good biological research has kept a lot of researchers from wanting to do anymore such research, out of fear for their careers.....they go way out of their way to wreck careers and prevent good research from happening - that is not inertia or halfhearted

    they also do everything they can to ensure that the research they do is not really even on people with true ME/CFS.....patients with PEM (PEM, as we know, is the reason why exercise is dangerous for many with CFS) - these patients were excluded from research on GET so that they could "prove" that it is a safe and effective way to treat CFS! patients in the current "study" in Georgia only have to have been fatigued for a month with no explanation (they don't have to meet ANY other criteria for CFS and yet they are claiming to be studying CFS).....and the list goes on and on (and of course that list includes the name and the definition that are intentionally harmful)

    this is not even close to being apathetic or just worried about egos or anything along those lines


    another interesting thing that I wonder about is why on earth the CDC is even involved if it is a psych illness bc the CDC is about disease control (ie infectious diseases, not mental illness)...the obvious answer for that is that CFS is not a form of mental illness (but how is it that they can claim it is and in doing so not put themselves out of the picture?)
  10. AuntTammie

    AuntTammie New Member

    not only is it not in the DSM, but I wrote something awhile back explaining why it absolutely does not fit in with the DSM's definition of psychosomatic illnesses, either, even if you completely overlook the biomedical findings

    (not that we should be overlooking those findings, but even then it would not fit the diagnostic criteria for being psychosomatic)....I think I also covered a few other DSM diagnoses that people have tried to fit us into as well, and it does not fit
  11. simonedb

    simonedb Member

    wow excellent post, very articulate but funny too: country music and lemons; love it!
    I dont know if that dude michael who got cured is a plant or not, I am toggling back and forth today between corts site and others and here, doing a research day as I am homebound today, did too much this week, if he is an imposter he sure gets into his role as I was just identifying with something he wrote at corts about how taking things to induce detox was too toxic for him and supporting the body in other ways so it could do that work itself made sense to me as I am super chemically sensitive. I dont want to get into a debate on that guy's credibility, but I have to say that western medicine has hurt me a lot, perhaps caused and then worsened my cfs and I am wondering if perhaps some of these more natural therapies, after all is said and done, are more useful for a lot of people than medications. I couldnt handle valtrex for a brief period, too much pain and weird neuro stuff but according to redlabs cfs test I do have likely viral thing going on, if valtrex kicked my ass I wonder what ampligen would do? sort of scared and not optimistic to find out. I am digressing a bit here but I guess my point is that I think western medicine has some significant limitations and in dark ages in a lot of ways and some stuff that seems woo woo will be found out to have been in right direction, its happened before--that said, I do agree tht its tricky to go there when we are still struggling with getting taken seriously and I dont know what the answer is to that.

    Luminescent, you have incredible experiences and knowledge, I think if you could get hooked up with right source and go public it could make an impact. i dont watch Oprah, not my style but I am thinking someone like her if they got sympathetic and heard your story maybe it would do something. It does sound worse in England than here. I can totally see now the military would have a possible investment in not having to pay out medical benefits and I did meet a guy once with cfs from first gulf war and he didnt get the help he needed but thats not new there was agent orange in vietnam and that can relate to that dr bigelson and dr cheney's ideas that the terrain is more important than a bug, if our bodies get weakened then we are more susceptible to illness. I guess that isnt as helpful though as a specific virus to get credibility. I cant vouch for bigelson, he is a new name to me, was just reading about him at corts from a client but I met Cheney and I know he wants to help the cause and he is one of the major proponents of the terrain being more important than figuring out a bug. Again I dont know where that leaves us, I mean I know he has posted at his site that he agrees and supports whittemore peterson institutes new research on xand but I wonder if he has changed his treatment, pretty sure still focusing on more natural approaches and not antivirals per se or antibiotics except in limited or herbal approach and then cell therapy.

    I dont know if US and Great Britain have differnt motives, but its crazy what you say about them busting down people's doors, over the top. Makes me think I should try to hang onto my parttime job at an institution just to try to keep on the side of credibility....was contemplating if its time to go fulltime on the healing and no time on the job....
  12. quanked

    quanked Member

    A war on what or whom? And why? A war always benefits someone or something--what can a war against CFIDS bring anyone? I am not saying that there cannot be someone(people) benefitting from such a war but it is not obvious to me who or what is gaining from such an inhumane action.
  13. simonedb

    simonedb Member

    yea its ironic, some try to say its a mental illness but then they dont have a category for it there either, I forget, is malingering in the dsm?

    I read Michael Foucault some years back for grad school and he had this theory that society always has to have some scapegoat, that at one time in europe it was the lepers than later it was the insane, some could argue that poverty stricken are a purposeful underclass and prisoners etc that these scapegoats serve a function of providing jobs for the other people to take care of or persecute the "losers", perhaps its as simple as that, cfs is the fat kid at the party being ridiculed, I mean I have guiltily experienced the emotion of contempt for friends in my life when they act "too victimy" or "weak" I am not saying its right and I tried to hide it when it happened but there is a weird phenomenon in humans/animals...Lord of the flies ya know
    [This Message was Edited on 10/31/2009]
  14. AuntTammie

    AuntTammie New Member

    basically a war on anyone who might bring the truth to light, as well as on the patients (bc if they can keep us looking like we are nuts, well then who will believe us and how will the truth ever get brought to light?)

    as to what the truth they are hiding is (& who benefits)....I already explained my thoughts on that in my first post on this thread (the first response to the OP)
  15. AuntTammie

    AuntTammie New Member

    yeah malingering is in the DSM, and I think that is one of the other diagnoses that I mentioned when I explained how CFS does not fit into any psych diagnoses

    unfortunately I do not remember the title of that thread and it has been awhile since i posted it
  16. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Ok, so are you saying the government officials in UK, CDC and NIH and major news media in both countries and insurance companies and drug companies are all conspiring to keep some secret that the government was experimenting with XMRV as a germ warfare agent and the virus got loose in the population?

    Now, I am not saying that maybe XMRV was not some sort of germ warfare experiment. Who knows what goes on in those military research labs? But I just don't buy that all these institutions were conspiring together to keep it secret, especially the news media. New York Times loves to expose cover ups.

    This isn't 1940s.

    Does Hillary say or insinuate in Osler's Web that there was a conspiracy to keep XMRV from being discovered. From what I have read thus far, she exposes that CDC officials just thought the Nevada docs were quacks misdiagnosing a bunch of neurotic women as having an imaginary epidemic. They gave Peterson and Cheney no credibility, so they never did a thorough look into it.

    In fact, I just read the part where in the CDC they were making jokes about it being an imaginary illness, with the letter on the bulletin board. I think that reflects their thinking. No letters or e-mails of cover up. Just stuff about how this is much ado over nothing.

    I am convinced now though, that a lot of doctors believe it is mental illness even if they won't tell us, the patients.

    One internist I went to said he did not believe CFS and FM to be an organic illness. And he diagnosed me with obsessive compulsive disorder. (What!) He said I have a "different kind of depression." A week later, he said my test results showed hypothyroidism.

    One of my friend's doctors told her that fibromyalgia is depression of the body. But he said in this tone... "you know, ..........." As though it was some doctor's secret that he was telling her about, letting her in on.

    I wonder now of the other doctors I went through who said, "I think you have CFs or FM, I don't treat that," actually thought I had a mental illness. But its the doctor's secret. They don't dare say it to the patients because the patients are already delusional.

    Tina
    [This Message was Edited on 11/01/2009]
  17. simonedb

    simonedb Member

    haha I do think it is something a lot of doctors secretly or not so secretly think, if there was some wrongdoing by govmt institutions that let this into the population I dont think the docs were in on it and a lot of them have just developed contempt for people and a problem they don't understand
    I finally found a good primary care guy locally but before that I had someone that was disrespectful at times and I think she and anyone I was referred to had a plan to try to downplay any real medical problems that came up as they didnt want to emphasize or validate any real problems, she had read a book by some guy that said fibromyalgia is suppressed emotion and anger and if you just go to counseling and get it out you will be better. Well ok, I get your suppressed anger right here doc.

    A friend of mine dated a guy in med school who told her he and his cohorts couldnt stand the fibromyalgia patients, whiners etc. Nice, compassion, why dont they just go into shoe sales or something.

    I found an interesting thread last night at corts phoenix that mentioned some theories about why and how this came about, I think it was under the thread about Elaine de freitas, who is another interesting case in point, she just about discoverd this virus in 91 but was squashed by cdc etc and I guess has languised w/her mother w/her own health issue since.
  18. Ales

    Ales New Member

    The majority of US citizens (up to 90%) believe that if they do a certain mental operation, i.e., the so called "praying to god" something tangible, real will take place, e.g., someone cures etc. So it's not a surprise that the majority of medical professionals sincerelly believe that someone can be seriously ill just be certain mental operations.

    But I think this "psychosomatc superstition" is not necessarily tied with religiosity. Just look at the many stories of people who survived cancer because they "didn't give it up", "were strong" etc.

    The adherents of psychosomatics, who aren't able to compete with serious science, need money from research grants, cfs is the most suitable candidate for their apologetics.
  19. AuntTammie

    AuntTammie New Member

    I am not saying anything close to that - I never mentioned all the agencies/organizations you just brought up - I am talking specifically about certain parts of the govt (ours and the UK's) & it is entirely possible that they could very well be hiding something big......do you really believe that the media and the general population has any clue about everything that our govt does?!

    not to mention that certain things get "spilled" to the media and to the general public that may not be exactly accurate but are made to sound that way....the misinformation that has been spread re CFS is unbelievable, and yet people do believe it bc of the sources (people think that the CDC is a credible source, for exp)[This Message was Edited on 11/01/2009]

    and of course there is no way that Hillary could have said anything about XMRV in Osler's Web given that XMRV was just discovered and Osler's Web was written yrs ago...like I said, I am basing my thoughts on Osler's Web AND other stuff I have read over the 5 1/2 yrs I have been sick (lots of verifiable info)
    [This Message was Edited on 11/01/2009]
  20. AuntTammie

    AuntTammie New Member

    not sure why you find it necessary to inject your obvious disdain for religious belief into this conversation, esp as you said yourself that " 'psychosomatic superstition' is not necessarily tied with religiosity"

    ....however, you have it completely mixed up anyway....prayer is talking to God, requesting something from Him, praising Him, etc....He is the one with the power and if something happens as a result of prayer, it is not because of some mental power we have or think we have regardless of how prayer is initiated

    that said, the mind does have some influence on the body - that has been shown many times and that's why things like placebos work, that's one of the reasons why stress does effect us, etc.....and that is why there are actually very real somatic disorders, however, CFS is not one of them and that has also been shown thru the various physical abnormalities that have been documented with CFS patients