More medical 'firsts' from the CDC?

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Jul 26, 2006.

  1. karinaxx

    karinaxx New Member

    More medical 'firsts' from the CDC?

    The CDC states in this press release (reprinted in part below):

    'First of all, this is very exciting research in the field of chronic fatigue syndrome. It really is the first credible evidence of a biological basis for chronic fatigue syndrome'

    The first evidence?? Well, yes it is, but only if you ignore the more than a THOUSAND studies which have already done so - which of course they do.

    Despite all this talk of a biological basis for 'CFS' the CDC are also still recommending almost no other treatments for the illness other than psychiatric treatments such as cognitive behavioural therapy and graded exercise therapy. They also continue to define 'CFS' purely in terms of the presence or absence of fatigue.

    When the CDC say CFS they are not talking about people with ME but merely fatigue sufferers, and so anything they come up with is IRRELEVANT to MEers anyway. This is so clear if you just read anything they've put out lately (or ever.)

    As advocate Craig Maupin explained recently in his article: 'There's More to the CDC's Conclusions About CFS Than Meets the Eye'

    The CDC's Wichita CFS research subjects don't appear to be very disabled. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. And according to a CDC study published in 2003, the average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, these Wichita CFS sufferers, diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people.


    Do these sound anything even remotely like people with actual M.E.? Do you think even ONE person with ME could have the illness and not even KNOW they were ill? Do you think anyone with current ME could work anywhere even close to 48 hours a week?

    Of course not. It seems very unlikely that ANYONE the CDC looked at even had ME, and certainly the overwhelming majority of them (at least 84%) very clearly did not have the illness. There is no grey area here. These studies were not done on ME patients and so the results are in no way relevant to ME patients, end of story. Don't be fooled by the use of the term 'CFS' - as we should be well aware this term means very different things to different people. When the CDC use the term CFS they are NOT discussing an illness that is equivalent with ME but an entirely UNRELATED patient group which consists of psychiatric and non-psychiatric fatigue sufferers.

    Don't be fooled! Talk of biological findings is meaningless if made by vested interest groups like this. Depression has biological findings too! This is all just smoke and mirrors to make us think they have changed their ways when the reality is that they are more committed to denying us our basics rights and pretending that we are psychologically ill (and are exactly the same as tired and stressed out people) than ever.

    What the CDC are actually saying to the world is that 'CFS' is a psychological illness caused by stress. The more than a thousand studies - on actual ME patients as opposed to a group of mildly fatigued people - which refute this are of course completely ignored by the CDC.

    Some MEers however have bizarrely responded to this damaging nonsense as if it were a great step forward for our cause...

    How is is that so many MEers still don't get that the CDC are NOT in any way interested in helping ME patients or in furthering any type of legitimate
    research and indeed that what they do best is ignore or bury legitimate research or anything that might actually help us... Their goals are the direct opposite of ours - by supporting the CDC you're actually working directly against the best interests of ME sufferers; that is just a fact.

    (And forget the suposed credibility being given to this reaserch by it being supported so uncritically by The CFIDS Association as this group is funded to the tune of millions of dollars by... guess who? The CDC themselves! Their support of this poor quality pseudoscience is worse than meaningless.)

    The CDC could very easily choose to do useful and legitimate research on actual ME sufferers instead of psychiatrically based pseudo-science on mildly fatigued people. ME sufferers are quite easy to recognise and have little in common with those suffering psychiatrically based (or any type of) fatigue. Yet the CDC do not do this, they are still pretending that fatigued people and people with ME are one and the same. This speaks volumes not only about their intentions but also about how relevant any of their research results are to ME sufferers. These studies on fatigued people who do not have ME are no more relevant to ME sufferers than they are to those with MS, diabetes or Parkinsons. That is a fact.

    As Hillary Johnson, author of Osler's Web, (an activist many of us admire and who I hope wont mind if I quote her), wrote about Straus from the CDC a while back:

    'Now, why is M.E. considered so widely to be "poorly understood" and "controversial"? Because Straus has engineered this very propaganda. Because he says so, again and again, ad nauseum. Any study that advances understanding of the disease, like the comprehensive 1992 Annals study I mentioned a while back, Straus has either blithely ignored or publicly undercut, along with the CDC. It is he who turned a simple infectious disease into a "controversial" one by suggesting it is not a bona fide disease at all, but a state of, yes, FATIGUE powered by maladaptive thoughts.'

    and:

    'Reeves should have been sent to jail in the mid-1990s. The CDC shouldn't even be involved in ME; after the profoundly botched (nefarious?) Tahoe "investigation" of 1986-87, the Secretary of Health should have banned the agency from further activity in the field and fired the scientists involved. (In a rational world.) I'm tired of saying this. I really am. PWMEs who think it's reasonable, at this late date, to try to negotiate for help with this agency or any other agency or person employed in the DHHS are complicit in their own demise and threaten every other PWME, as well, by propping up the status quo.'

    The CDC are who we need to be fighting AGAINST, not for. Read Osler's Web! Read anything the CDC have said about ME over the last 20 years... it's all there...

    The CDC are the reason why we need any activism in the first place... for MEers to actually be supporting them in this, supporting and increasing own abuse... it is just pure madness.

    Jodi Bassett, April 23 2006

    ps. These same exact comments also apply to the recent 'research' put out by Andrew Lloyd in Australia about 'CFS' being caused a temporary hit-and-run type injury to the brain due to glandular fever. What Lloyd is discussing here is a post viral fatigue syndrome, not ME. ME is not a state of 'fatigue'following glandular fever, this is a separate problem entirely. This research has nothing to do with ME patients at all and again this research is nothing more than Lloyd yet again pretending that 'CFS' is a psychological condition which is amenable to psychiatric therapies such as CBT and GET. It has been very disheartening and depressing to see how many ME sufferers in Australia (and worldwide) have actually treated this dangerous and unscientific propaganda as legitimate science on ME that we should actually be thankful for. Nothing could be further from the truth. (This article is reprinted in part below)

    Again, Wessely, Lloyd, Hickie and the CDC (etc) are the actual reason people with ME are so poorly treated and abused in the first place. Supporting these vested interest groups means supporting and further entrenching our own abuse...

    There is so much real research out there we should be supporting instead of this unscientific and harmful psychiatric nonsense, it really isn't so hard to see the difference between the two if you just take a bit of time to see past the surface of what is being said and look at the nefarious history of many of the individuals and groups involved and where their interests and motivations really lie. It is so important that we do this as a community, if we are to ever get anywhere in stopping the appaling abuse and neglect of so many thousands of ME sufferers. Education is key.






  2. karinaxx

    karinaxx New Member

    i did not realize that i did not copy the name of the organisation who posted this. so, first, this text is coppied from one of the most comprehensive, knowledgeable and honest sites i found on the net.
    http://www.ahummingbirdsguide.com
    second: this is not an opinion which stands alone. read the article which i posted a few days ago, from the cfids foundation; "CDC missleading the nation."
    third: i disagree with almost everything you say.
    i have read and heard the interview the CDC has given.
    it made no sense at all.
    but i will not get into an argument about it, because all what i think , is exactly what i found expressed in these two articles.
    if you research more on the Wesley school and everything what was going on with the name change from ME to cfs, the conection between the goverment organisations like CDC and health insurances, than i think you can not think like you do. fightacure has also posted recently a lot information on it, so it is easy to find.
    take care
    karina
  3. karinaxx

    karinaxx New Member

    hummingbird site. there are many organisation in england which are on the same track, like the http://www.investinme.org or Merge and http://www.cfids-me.org.
    you cant ignore all these organisations!! But i am sure many of them you know, if not it is worth looking into them.
    By Jodi Bassett, October 2005 (Updated January 2006)

    Most people would readily accept that when politicians talk about subjects that they have an involvement with that they can often be quite biased in their approach and very often much of what is said is more concerned with protecting their own vested interests rather than just being a simple explanation of the facts. In contrast to this, the fields of medicine and science are usually seen as fairly ‘black and white’ and therefore immune from such manipulations. The unfortunate reality however is that just like any other field where many billions of dollars are at stake, these areas are as open as any other to clever manipulation by those with something to gain either financially or politically by skewing and misrepresenting the facts in a particular way.

    Research into Myalgic Encephalomyelitis (M.E. or ME/ICD-CFS) is a prime example of this. Because of the enormous amounts of money at stake, research into ME/ICD-CFS is not a politically neutral field. Often the language used and many of the claims made about the illness in supposedly scientific studies should not be taken at face value or accepted as being based on an objective look at the evidence.

    For example, it has recently been uncovered that some of the worlds most influential and prolific authors of studies (and many media reports and governmental advisory papers) which have supposedly showed the illness to be a purely psychiatric or ‘behavioural’ condition have been hiding long-held ties and loyalties to the powerful health insurance industry; an industry which stands to lose literally billions of dollars (and possibly face total financial collapse) if ME/ICD-CFS is ever fully formally recognised as the severely debilitating organic neurological illness that it is (Reference)

    This is why the charade that ME/ICD-CFS could be a psychiatric or behavioural disorder or even a ‘belief system’ continues; not because there is good scientific evidence (or any evidence) for it, or because the evidence proving organic causes and effects is lacking – but because such a view is so financially and politically convenient and profitable on such a large scale to a number of powerful corporations and Government departments (Reference). Scientifically such theories have been utterly discredited and disproven decades ago (and literally more than a THOUSAND times over since then) and are at this stage are no more scientifically viable than are those of a ‘flat Earth.’ As award-winning microbiologist and veteran M.E. researcher and advocate Dr Elizabeth Dowsett explains, such theories bear as much relation to legitimate science ‘as Astrology does to Astronomy’ (Reference).

    Many other groups and individuals, while not directly motivated by such vested interests themselves, have unfortunately been unduly swayed and manipulated to varying extents by the enormous amount of superficially legitimate information widely disseminated by such powerful groups and individuals. Some researchers have been taken in entirely by such ideas, as have the large majority of the worlds journalists (albeit with some notable exceptions). But equally worrying is the way that even some of the best research on the illness is still often shrouded in heavy usage of misleading and propagandising language and false statements which often belie the harsh realities uncovered in the studies themselves.

    Most of what is written about ME/ICD-CFS has little or no relationship with the scientific reality of the illness, (indeed it is not uncommon to read articles made up entirely of such mistruths and propaganda). For this reason it is vital that all writings on ME/ICD-CFS are put into context.

    What follows are explanations of the reality behind some of the most commonly used myths and propaganda concerning ME/ICD-CFS:

    To read more information on this topic see: What is ME? What is CFS? Information for Clinicians & Lawyers and also What is M.E.? (on this site), Worldwide Epidemic, ME/CFS Politics in a Nutshell (UK) How to disguise a disease, Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! A Rose By Any Other Name, and Redefinitions of ME. Many more papers are also available in the Research and Articles section.


  4. Tawra

    Tawra New Member

    and I can tell you I certainly wasn't running circles around my healthy counterparts! I'm not sure what they are talking about!

    Tawra
  5. Tawra

    Tawra New Member

    and I can tell you I certainly wasn't running circles around my healthy counterparts! I'm not sure what they are talking about!

    Tawra
  6. findmind

    findmind New Member

    I just want to support you.

    Thank you for posting the truths about ME/ICD-CFS.

    The problem, as I see it, for us patients, is that it takes a long time for many to even find the sources that are telling the truth.

    For some, reading the books is not even a known source, until mentioned in places like this site.

    For many, who have chronic fatigue, not ME or CFS, they believe the junk science being touted by CDC, because it fits them.

    Rich Carsons' lead story in latest newsletter differentiates between chronic fatigue and chronic fatigue syndrome, and rallies us to action to change the name.

    Well, I've done my best for 15 years to do just that: it isn't working so far.
    But maybe with Rich, (who is now in the CFS posters of the "Awareness Campaign" which is also organized by the CDC and CAA) well, maybe something good will happen: I'm waiting to see.

    If the campaign just serves to "brand' the name once again, and if my relatives and friends think I've just been unable to handle stress, I will be very upset.

    BTW, I'm a little confused. If Rich wants the name changed to ME, why be a part of a campaign to brand it as CFS? Just came to me, now I'm wondering.

    Keep up the good work karinxx, everyone here needs to know the truth about ME. Everyone needs to read the books and understand the history.

    We all need hope!
    findmind
  7. karinaxx

    karinaxx New Member

    thank you and i agree, most of us have to spend a long time researching , before we realy can put all the facts together. it took me more than a year, nearly every day on the net, reading through tons of reports, research, articles, to know what i know now.
    i wish somebody would have told me!
    indeed, EDUCATION IS THE KEY!
    i will try to put all, what i learnend together, with all the best sites i found; especially for the ones who have bee just diagnosed. hopefully it will help.
    But it is a enormes amount of reading i have to sort out, it will take me some time and my enlgish is not so good and the damm brainfog and exhaustion does not help.
    well wishes
    karina
  8. findmind

    findmind New Member

    you and fight4acure are both doing the same thing: listing important research articles and other info that highlight the findings in ME/cfs.

    Baby you should put your info on her thread.

    BUT, maybe you could begin a new thread entitled "Required Reading for Newbies", and list all the major expose books like Osler's Web, and others, that they absolutely must read in order to understand the history of these dds.

    Then, articles to print out on one thread, and books to read/print out list on another!

    What do you think?

    findmind
  9. tansy

    tansy New Member

    everything has got into such a mess for decades now. Subsuming ME into an evermore diluted catch all Dx label of CFS has been convenient for those who have done very well for themselves through muddying the waters.

    The CDC's research only tells us that certain symptoms being reported in people with chronic fatigue are genuine. I find it particularly telling that they consider it superior to Dr Kerr's work; that says it all.

    Since I live in the UK I can tell you that claims for the successes of CBT and graded aerobic (!) exercise are being deliberately distorted; this all stems from the Wessely School and the insurance industry. The PR and spin being used when all this started is the same being used now by our Govt in their drive to reduce the numbers who recieve sickness and disability benefits. They have employed UNUM to help them out.

    The 2 biggest patient UK organisations have contributed to this mess: the MEA and AfME. AfME has benefitted financially, it doesn't even fund research anymore, they claim to be campaigning on our behalves: who are they kidding! Co Cure's archives, July week 4, has some intresting contributions to the problems one of MEA's medical advisers, and someone one who wants the centres offering only CBT and GET, have with ME activists.

    UK PWME's best interests are being represented by the 25 group, BRAME, RiME, The TYMES Trust (young people) and ME Action UK.

    So if you want to go back to the Dx of ME, join and support the organisations campaigning for this alongside a better diagnostic criteria ie Ramsay or the Canadian Guidelines.

    Karinaxx, Findmind, and Honora, thanks for keeping everyone's minds focussed on what's really happening and why without more organised activisim, little will change.

    Yes education is the key.

    TC, Tansy
  10. karinaxx

    karinaxx New Member

    just cannot believe that so much evidence is not enough to convince you of the facts.
    there is nothing fair about the cdc politics.
    opposit, it is cruel and should be proscecuted!
    why is the CDC not making serious research with all the DR. and researchers at the fore front like cheney, meirleir, nicholson, lander, hyde, robinson, DR. bell!!!!!
    why they come up with a research programm, which does not include one of the privat organisisations, which are involved in bio medical research? why they invent a process, which is called genomics and say this is serious research, when in fact it is just an experiement in new ways of doing research. did you know, that they spend only two days on doing lab tests and clinical examinations on the patients who have been diagnosed with "cfs"
    well, thats what i understood. maybe the person who was in the wichita study can shed more light on it.
    it just makes me furious, so much nonsense and so much money spend and not one step further than we were before.
    as findmind said, this is going on so long, and it caused us more suffering and discrimination, losses and misery!
    and what about all the children which are still put through
    psychatric treatments, which are cruel and make them so much worse that they a paralized and tube fed. and not to speak of all the kids with ME/ cfids, which were taken away from their parents, because the parents were acused of making their children ill. "muenchhausenproxy"!!!!
    All because the cdc is putting the label stress related, psychatric somatisized cond. and so on a illness, which is as serious and complex than aids, MS, cancer. oh, yes, were not all cancer patients also once considered to be in denial of some sort? or MS patients in mass histeria? and aids only got the homosexuals?
    the hallmark of ME/cfids is exersize intolerance! and the cdc recomends as treatment just that? when it is known that it worsens the condition and is dangerous?
    or lets just all tell a aids patient, if he just learns to tell himself that he is not sick and behaviour therapie is enough to make him well again...........does that realy makes sense????'
    love karina

  11. tansy

    tansy New Member

    I have marked neurological, muscle and spine problems; so throughout my illness I have tried to exercise as much as possible. For much of the time it was just a frustrating task that would leave me more ill than before with my muscles more painful and even weaker.

    My muscle tests (including EMGs) showed various abnormalities, including those found by Prof Peter Behan (UK) and which fit with the mitochondrial problems found in ME. This is the basis for Dr Myhill's Tx based on the work on Dr Sinatra.

    I had problems with my heart too which affect physical acitivity. Before making progress going for a walk was not only impossible due to the extent of my disability, exercise would not have the anti depressant effect Lamotta describes here. In ME this antidepressant effect is lost, it's one of the hallmarks of ME.

    Since Tx have had some effect I am rebuilding my muscles; using a pilates machine has worked wonders for my lower spine and limbs, it helps me work though the nerve damage as well. This does not give me more energy but it does mean I'm using less energy struggling to sit, stand, or walk because the muscles are stronger intially. There remains a limit as to how long I can work my muscles, this fluctuates, and I've learned when to push and when to accept doing less.

    I still need to take great care with aerobic exercise, and this is best done using the aero board on my pilates machine. Why? Because my legs are higher than my heart and so there's less strain on my heart.

    Graded aerobic exercise programmes are the ones doing the most damage to PWME in the UK, ie those who fit Ramsay's model. LLMDs recommend anaerobic exercise, but recommend aerobic exercise be left until recovery or substantial improvements. ME specialists recommend non aerobic programmes, but these have to be done with care. Again like LD the advice is that aerobic exercise be put aside until well on the road to recovery/remission.

    So maybe Lamotta has highlighted one of the main differences between ME and CFS when the latter is using the wider definitions.

    TC, Tansy



  12. mrdad

    mrdad New Member


    You seem to be doing well today with the cognitive funct-
    ing thing. Sounding very clear thinking. My brane frog
    is much better also today! (OOPS!!) JEOPARY is on! It's
    7 o'clock. (The moment of truth)!!

    MRDAD
  13. tansy

    tansy New Member

    By the time Dr Reeves "got through omitting patients with "exclusionary criteria" (such as thyroid problems), only seven percent of the patients - 7 %! - met the Fukuda definition for chronic fatigue syndrome."

    This is like the CFS Oxford criteria in the UK which members of the Wessely School put together.

    The CDC's stance, and comments on Tx, sound more and more like the situation we have in the UK; it's the last thing you want or need in the US.

    Please check out Mary Schweitzer's questions about this in the Co Cure archives July, 5th week.

    TC, Tansy[This Message was Edited on 07/29/2006]
  14. tansy

    tansy New Member

    (as posted on a new thread)

    Hillary J. Johnson

    19 July 2006

    I applaud "Science", and Jocelyn Kaiser, for refusing to take the
    Center for Disease Control's latest foray into elucidating chronic
    fatigue syndrome (CFS) at face value. In doing so, you
    distinguished your journal from most newspapers and wire
    services who covered the agency's press conference on the
    subject.


    I am the author of Osler's Web: Inside the Labyrinth of the
    Chronic Fatigue Syndrome Epidemic (Crown 1996), which first
    broke the story of the agency's fiscal malfeasance regarding
    CFS and launched two federal investigations of the agency, both
    of which fully corroborated my own investigative reporting on the
    subject.

    The Atlanta agency's history with this disease has been much
    more destructive than the misuse of millions of dollars of
    Congressionally-earmarked money and the CDC?s subsequent
    lies to Congress, however. Things started to go terribly wrong
    when two inexperienced epidemiologists from CDC went to
    Lake Tahoe in 1987, two years after an outbreak of an unusual
    disease occurred there. With the publication of their first paper
    on the subject in 1988, which suggested that what they had
    newly named "chronic fatigue syndrome" was probably mass
    hysteria, the agency in effect declared war on those who suffer
    from this disease.

    Soon after, the CDC compounded the damage by issuing a
    wildly off-base "research definition" that defined the illness
    according to degrees of "fatigue." Fatigue, as the agency labels
    the profound exhaustion approaching paralysis that is
    characteristic of CFS, is only one symptom among many in this
    multi-system disease. In doing so, the agency set serious
    medical investigation back by years.

    Still, in the successive two decades more than 2,000
    peer-reviewed articles have been published in the medical
    literature documenting evidence for the biological basis for this
    disease, according to Harvard CFS expert Anthony Komaroff.
    The self-serving CDC, desperately trying to bolster its tarnished
    reputation in this field, conveniently turned this fact on its head by
    claiming its new gene study was the first evidence. Traditionally,
    and in this latest research, CDC avoids studying patients who
    actually have been diagnosed by clinicians with CFS on the
    absurd theory that these patients probably don't have the
    disease. The logic is reflective of the agency's powerful belief
    that only its epidemiologists know what the disease is or how to
    define it. In this case, they avoided looking to clinicians for
    patients but instead sought out study subjects in a random
    digit-dialing effort, identifying "patients" by their degree of
    fatigue. But, as clinical CFS specialists will tell you, fatigue alone
    is hardly a legitimate marker for CFS. Very likely, the patients
    included in this study either don't have CFS, or they have some
    extremely mild form of CFS, if such a thing even exists. Even
    excluding the scientific failures exhibited by CDC in its highly
    controversial research definition, there are other reasons to
    disregard this latest study. Simple logic dictates that people who
    have avoided seeking medical help for their condition are
    unlikely to suffer from a a severe disease like CFS, one that has
    been shown in peer reviewed studies, again and again, to rival
    end-stage AIDS and severe congestive heart failure in its
    degree of morbidity.

    The likelihood that the CDC was even studying bona fide CFS
    sufferers is slim to none. As they used to say in the computer
    industry, GIGO? garbage in, garbage out. Expect more of the
    same from the CDC where this disease is concerned.