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Big Mistake, Conspiracy, or Nothing Unusual?

Discussion in 'General ME/CFS News' started by toddm1960, Apr 2, 2011.

  1. Cloud

    Cloud Guest

    Dare I ask what they did to the men? And how did they justify it as a "female hysteria" anyhow when men, albeit less of them, had the same symptoms? (rhetorical....I can research it)
  2. August59

    August59 Daughters High School Graduation

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    anciendaze - Love the avatar!! It was like looking into a mirror as it looks exactly how I have felt today! Thanks
  3. Mark

    Mark Acting CEO

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    Great post, PokerPlayer - welcome to the forums!

    Everything you say is true, but in connection with the industrial and economic interests you mention, there's another little-known movement, as well, which works directly against our interests, and that movement is IMO the best candidate as an explanation for all the issues that tend to be emerge as 'conspiracy theories'. Understanding as much as possible about the beliefs, philosophies, and activities of people associated with that movement, is IMO the best way to put all the talk of 'conspiracy' into its proper context.

    In the absence of any explicit public label, the movement is perhaps best understood by understanding its philosophical beliefs, and perhaps the most illuminating word to describe the movement in terms of its practical activities is pseudoscepticism - the practice of appearing to take a properly sceptical approach to scientific questions whilst in reality having hidden agendas, biases and prejudices, and even industry backing, which determine which particular targets are singled out for attack.

    I came across this movement and its philosophy whilst investigating the Bad Science forum (run by former Wessely PhD student and Guardian columnist Ben Goldacre) who came to our attention when the attack on Dr Myhill originated there), and again whilst investigating the UK's Science Media Centre (which tells the UK Press how it should interpret new science), all of which turned out to be the signpost to a group of people who, in anybody's terms, are prima facie candidates to be described as a bona fide conspiracy - a group of Trotskyites from the Revolutionary Communist Party (RCP) in the UK who went underground in the late 80s and early 90s and emerged in more recent times in precisely the positions of power in the areas of science and the media that have the most pivotal impact on all the issues that affect us.

    Forum members who've been around here for a while will already know that I'm talking about the Living Marxism group, and the philosophies and special interest groups that were exposed during their battle to try to influence British public opinion over the issue of genetic modification (GM).

    Silverblade's comment that such people believe that "you can't make an omelette without breaking eggs" is spot on: this group's philosophy espoused that principle explicitly (before they took it underground), and applies it directly to all of us, in terms that the vast majority of people would quite rightly find morally repugnant.

    To very briefly summarise their history and philosophy: as Marxist activists who had seen their recruiting base dwindling with the rise of the environmental movement, and the rise of other single-issue but fundamentally 'apolitical' campaigns like gay rights and women's rights, their bitterness at these movements for undermining their power base in the 'class struggle' caused them to rethink their philosophy in a way that ended with them morphing into the people fairly described by Martin J Walker as "failed revolutionaries". They concluded that the evidence of history showed that what really delivers progress and material benefit to the working classes is scientific and industrial progress. The emerging Green movement was the direct enemy of that material progress, emphasising the value of the earth itself, and of the natural world, to the detriment (as they saw it) of human beings. They saw that movement as anti-human, middle class, naively idealistic, and retrograde to human progress. And they decided they must go to war against it.

    Although most of them were not scientists, but sociologists, wannabee journalists and the like, they fell in love with science itself, and the idea that it is science, above all, that delivers the greatest benefits to humanity. And their fear was that what they saw as their irrational traditional enemies - forces such as religion - would succeed in slowing or even halting scientific and industrial progress, to the great deteriment of humanity.

    As LobbyWatch describes:
    "Other inhibitants to progress were 'victim culture' and the 'culture of safety' which gave rise to 'risk-aversion' and 'moral panics'. One should pay the least regard, the RCP now argued, to the views of victims or their relatives, whether one was dealing with gun crime, road accidents, Bhopal, BSE, AIDS or whatever, as it only encouraged a culture of fear and caution and so inhibited freedom and progress."

    This gives a strong hint as to the fundamental attitude of such people when engaged in (pseudo)scientific debate over the issues that have blighted all our lives here. The attitude, I think, can be summarised simply: if this news/scientific study/allegation would - if true - be harmful to the public image of science as a whole, then it must be suppressed. Accordingly, any suggestion of harm to humans due to modern chemicals, modern technologies, vaccine damage...you name it...such suggestions must be nipped in the bud whether they are true or not, because the very question is harmful to science as a whole. People will overreact in the face of such news, and will behave irrationally and thus undermine or destroy the very real benefits that the new technologies were bringing. And so people must not know about these matters. If they are to be investigated at all, then the investigation must proceed behind closed doors, and out of the public gaze.

    This understanding is particularly helpful because it helps explain why there need not necessarily be any 'grand plan' or any knowledge of the truth about ME/CFS or any other issue, in order for these people to behave in a suspicious manner that suggests conspiracy. And that's very important, because the fine detail of the way that these people behave can be so outrageous and illogical, in a way that only those directly involved can fully appreciate, that it leads those whom they attack to know that there is something very strange going on, but they don't know what it is - and that inevitably tends to lead to wild speculation and paranoia which serves only to further discredit the victim.

    Silverblade's analysis is again relevant to mention: he characterises the problem as the extremist mentality per se, and rightly so, and he also notes that such characters have a tendency to morph easily from extreme left-wingers into extreme right-wingers - and indeed the Living Marxist 'failed revolutionaries' are now allied with 'fellow-travellers' from the far right and libertarian movements, which themselves are, of course, in practice merely fronts for the interests of the super-rich and the multinationals. Far left and far right, then, both work together to defend scientific progress and the 'enlightenment' from anything that might undermine public confidence in the benefits of scientific progress.

    Characteristics of such individuals include: hardline atheism, hardline scientific rationalism, materialism, dogmatism, rude and agressive pseudoscepticism, extreme arrogance and contempt for the mass of humanity who aren't as smart as them, and of course the pragmatism that goes along with the belief that they are the people who have to shoulder the responsibility of seeing "the big picture" and accepting that "you can't make omelettes without breaking eggs". In this philosophy, the suffering of people like us is a kind of involuntary sacrifice for the sake of the future greater good of humanity. It is an article of faith to them that unfettered scientific progress will eventually deliver utopian breakthroughs that will transform the lived experience of humanity (note that such people, falsely believing themselves to be rationalists and not religiously-minded people, never seem to notice just how many propositions they believe in absolutely on the basis of blind faith, automatically dismissing any other possibilities as "just ridiculous", without second thought and without feeling any need for justifications). And according to their utiliitarian moral philosophy, the everlasting greater good of these future humans fully justifies the sacrifice of the lives and well-being of a minority of currently living humans.

    It's a quite understandable philosophy, albeit one that is simplistic, simple-minded, amoral and fundamentally flawed - not to mention increasingly dangerous as the damaging effects of the suppressed science accumulate. If they had the means to know, with absolute certainty, exactly what kind of future their strategy will bring, it's even possible to imagine possible futures that could conceivably justify everything we have had to go through in order to get there. But the fundamental hole in their whole world-view is that, actually, they don't know where their strategy will lead, they can't actually perform the utilitarian calculations they imagine, they don't consider the distorting effects on the population of their secretive mentality, and they have abandoned anything that a normal human would recognise as morality along the way to their current worldview. But still, it's important to try to understand the way they see the world, and to realise that, in their minds, they are the good guys - that may be tragic to contemplate, but in my estimation it's almost certainly true.

    Perhaps the most obviously illogical aspect of their philosophy, from a scientific point of view, is that they can be characterised as believing that the best way to defend 'science' from being misunderstood and demonised by ordinary people, is to throw away and bury any results that show scientific innovations themselves to have had harmful consequences to humans. Quite how one ends up believing that science itself could ever be defended by ignoring or suppressing certain unwelcome types of scientific observations, is baffling to contemplate, but that is what this philosophy amounts to.

    I must change tack now, though, and emphasise that although much of the modern form of this approach is new, and revived since the 1980s, there is really nothing new about burying scientific findings that are inconvenient to both government and industry. I recently spent a few fascinating hours browsing through the "S Files" - the section of the MRC's files in the national archive under which the locked ME/CFS files are stored. Noticing that, even where files are locked, the titles of the files are nevertheless visible and often very suggestive, I wanted to get a sense for what category the ME/CFS files were filed under. What else is in there? Are there detailed records for every known medical condition, with stacks of files that were clearly just confidential patient records? Or does the rest of the contents of the section where we are filed give any clues as to the wider purpose of this archive? See for yourself...

    http://www.nationalarchives.gov.uk/catalogue/browser.asp?CATLN=3&CATID=5955&GPE=False&MARKER=0

    Unfortunately the only way that I could see to page through the entire list of several thousand files, was page by page - "Next, Next, Next..." - which is laborious, but rewarding. And tragically, my extensive notes were lost due to a computer crash - so there's a big job still to be done there. There is a fair amount of random innocuous stuff early on, and quite a big psych section near the beginning - skip it, it will give you a misleading impression regarding the overall contents of the archive - but things get pretty interesting pretty quickly. Note that the entire section FD23 is divided into two: the records system was revised some time in the 1980s and everything after that date is in the second section and somewhat differently categorised.

    Well, there's plenty in that archive, and quite enough for me to form the judgement that this is an archive of files concerning scientific findings relating to medical issues in which there is evidence of harmful effects to the human population caused by science and industry. And there's also enough evidence there to indicate that this is not an archive into which everything imaginable has been dumped, but on the contrary, some sections clearly show that there is a great degree of selectivity - you will find huge areas of medicine for which there are only a handful of files in this archive, covering a very specific topic within that area, and other areas of medicine which are very much over-represented in the archive. And I was excited to find that many of the titles reveal a great deal in themselves - for example, there's one dated from the 50s or 60s called something like "Radium leak from an address in central London" in which the address itself is mentioned in the title: without reading the file itself, one can get a pretty good sense of what it's about!

    So what is covered in the S Files, and into what context should we therefore place these locked files about ME/CFS? There's medical evidence regarding coal miners and respiratory disease; the long-term health of foundry workers; huge sections on vaccines and vaccine trials (including large sections spanning several years regarding the "Polio Vaccine Crisis" in the mid-to-late 1950s - er...Polio Vaccine Crisis? What Polio Vaccine Crisis? Google doesn't seem to have heard of it by this name...); masses about nuclear radiation (lots about radiation levels in Wales, in particular, plus locked files of data regarding levels of Strontium-90 and Iodine-113 in the UK - much of it prior to the Windscale 'incident', which incidentally isn't mentioned these days nearly as often as it should be: bear in mind, UK citizens, that we stand alongside Chernobyl, 3 Mile Island, and Fukishima, here in the UK, and Windscale belongs in that list); quite a bit about compression sickness; apparently incongruous little oddities like the health effects on women of high heels; and much, much more...it's a veritable treasure trove and a history lesson in itself.

    There appears to be huge untapped potential in these files, as a whole. I don't understand the whole process, but many of these documents are now eligible for public release but have apparently not yet been accessed by anyone - or at least, they aren't yet viewable as PDFs - but one may apply, online, to view many of these files, and once this process has been gone through, it appears that some of the files may then become available for everyone to view online in PDF form. At least, that's the way it seems, and the released part of the ME/CFS files is accessible online as a PDF, and makes fascinating reading: Wessely's early scribblings go a long way towards answering "what happened in the early 80s?"...

    Note that there are actually 4 files in the wider archive regarding ME, 3 of which are now open to the public, and one that can be viewed as a PDF, online, free of charge (follow the links and 'add it to your basket' to open it up):

    http://www.nationalarchives.gov.uk/...ype=Reference&image1.x=0&image1.y=0&image1=GO

    http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATID=7798595&CATLN=6&Highlight=%2CMYALGIC&accessmethod=0

    Well anyway, this post has been quite long enough, there was a lot to say and there's a lot more still to say, and I'm sure I could rant on all night about how the lobbyists I've mentioned are relentlessly piloting the ship towards destruction, against the better judgement of the passengers, but I'd better draw to a close and track down all the links again...

    I'll just end with a practical suggestion: I think it would be in all our interests to identify and collaborate with our fellow-travellers, the other people whose suffering has also been swept under the carpet for the sake of the greater good, and to campaign together to draw public attention to these pseudosceptic industrial lobbyist movements. Because such people really can't abide the light of day: they work, by preference, in shadow, with their motives and ideologies hidden from view, and I would hope that they will quickly wither if they can be exposed to the public gaze. Unfortunately, they have the relevant areas of the media pretty much locked down too, particularly in the UK, so it's much easier said than done, but the internet offers us some hope, at least...

    Further reading:

    http://www.lobbywatch.org/profile1.asp?PrId=78

    http://www.lobbywatch.org/lm_watch.html

    http://www.whale.to/a/living_marxism1.html

    http://forums.phoenixrising.me/show...ce-Media-Centre-RCP-and-press-silence-on-XMRV

    http://www.scribd.com/doc/8401751/C...n-Goldacre-Quackbusting-and-Corporate-Science

    http://www.satori-5.co.uk/downloads/dlf_168.pdf
  4. ixchelkali

    ixchelkali Senior Member

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    Or Heinlein's Razor: "Never attribute to malice that which can be adequately explained by stupidity, but don't rule out malice"

    Or maybe Grey's Law: Any sufficiently advanced incompetence is indistinguishable from malice.
  5. liquid sky

    liquid sky Senior Member

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    Cloud, it doesn't say they did anything to the men. It does say that many of the men never returned to full time employment, even though they were quite young when becoming ill. The legal settlement kept any significant follow up from occurring, as those who got ill were sworn to not speak publicly about it.

    Crazy that they could treat the women that way, huh?
  6. Mark

    Mark Acting CEO

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    Nice! I like those two!
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Mark
    *applauds*
    very well writtren and informative! :)
    thanks for that
    been reading through the national archives, and as you note the "Polio vaccine CRISIS" struck me, and so did this fact, those items and others are all NEVER to be opened, there's no date for public acess...at all..ever...why?
    Smoking gun of vacicnation = far more harmful than they've been telling us?

    hm are they reffering to the "cutter Incident"?

    http://en.wikipedia.org/wiki/Cutter_Laboratories

    MORE EDITS
    after going through the archives for a while....
    WTH? *All* articles dealing with vaccines are witheld from public viewing!
  8. markmc20001

    markmc20001 Guest

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    Very interesting. LIke the part about ruling out competance rather than incompetance.

    Have a comment that is slightly unrelated to your point. Used to work in a cubicle so called "professional" environment in a job that allowed me a great amount of flexibility in decision making and time management. I could take long lunches, didn't have to punch a time clock, just had to answer to my manager once a week and a Gant chart. However, the amount of control they had over me and others was astounding to say the least. THe power of peer pressure and social order does alot to keep people in line.

    My belief is, it would be much easier to control people in a professional environment where people had expectations of acting a certain way.
  9. markmc20001

    markmc20001 Guest

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    Got your point Mark about using the word conspiracy.. Glad you can see my definition is correct. Unfortunately not many other good synonyms to use.

    cabal, complot, confederacy, connivance, countermine, counterplot, covin, disloyalty, fix, frame*, game, hookup, intrigue, league, little game, machination, perfidy, plot, practice, put-up job, scheme, sedition, treacherousness, treachery, treason, trick, trickery

    http://thesaurus.com/browse/conspiracy

    I'm a little frustrated at the pejorative way people are dismissing the fact that there is "trickery" going on, and people are too blind to see it. Not easy concept to get ones mind around, but there is too much cover-up for it to all be an accident or group think. All the information in laid out in the news on a daily basis now and anybody can see it who pays close attention.

    I actually found an investigative news agency (CBS NEWS) that appears to be covering alot of trickery lately. A good vaccine story from a few days ago.

    http://www.cbsnews.com/8300-31727_162-10391695-4.html?contributor=41919&tag=contentMain;contentBody
  10. Cloud

    Cloud Guest

    Yes, very crazy, barbaric, and not all that long ago. This got me scanning Oslers Web again...been years since I read that book. Wouldn't hurt to read it again...better yet, I know a wonderful new doctor who would appreciate the book. She has been seeing a lot of new ME/CFS patients and trying to learn all she can about the disease. She's always asking about my experiences, Dr Peterson and the WPI. Our discussion yesterday was about the PACE trials. She is also the medical director of this rural clinic meaning that she has great influence over several other practitioners and policy affecting the care of thousands.
  11. floydguy

    floydguy Senior Member

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    Pseudosceptic

    Hi Mark,

    I like that word. I think that nails a lot of the characters out there. I think it aptly applies to people like Trine and Stephen Barrett of Quackwatch fame. There's a selective skepticism that I have a major problem with. They never speak of things like prescription errors, the legitimacy of handing out Cymbalta and other medications like candy, etc, etc. Or don't pick up on the concept that the more we spend on "health care" the worse our health gets. Or that there has been no progress on "modern" diseases like MS, ME, Parkinsons, Alzheimers, ASD, etc.

    Andrew
  12. Mark

    Mark Acting CEO

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    Wikipedia is quite good on the subject of pseudoskepticism:

    http://en.wikipedia.org/wiki/Pseudoskepticism
    http://en.wikipedia.org/wiki/Scientific_skepticism

    Another aspect to mention is 'The New Scepticism', for which unfortunately I can't lay my hands on the best link at the moment. The basic idea there, as I recall it, is that any new scientific claims which appear to be contrary to other established scientific theories, should be subjected to especially intense levels of scepticism and review. This conservative concept appears to be essentially arguing for a bias against innovation, and especially a bias against revolutionary innovation with substantial implications going beyond its direct findings. The thinking appears to be: Look, science basically knows nearly everything now, and basically most of it is right, so if some result pops up that seems to radically call into question lots of established theories, then it's particularly likely to be wrong, and a much higher burden of proof should be required than is required for theories that fit well with what is already known.

    So: for example, if one took the view that the established body of scientific opinion supported the theory that ME/CFS is a psychiatric disorder (ie. if one was a bit of a mentalist to start with), and then was confronted with evidence that lots of people with ME/CFS had a retrovirus, the neo-sceptic stance would be to say that the retrovirus evidence ought to be subjected to intense scrutiny, based on a sceptical assumption that it's probably wrong because it doesn't fit with what we already know.

    Another example of this phenomenon has been exhibited by those ME/CFS researchers and advocates with pre-existing beliefs about what is known/probable about ME/CFS that are contrary to the implications of the XMRV theory: namely, the idea that ME/CFS is not contagious because there is "no evidence" of contagion in the epidemiology and it doesn't follow the patterns of other contagious diseases; and the idea that ME/CFS is not actually a single, homogeneous condition, but a heterogeneous "waste-basket" diagnosis. People with those two pre-existing beliefs, in particular, have tended to be especially sceptical about the XMRV theory of ME/CFS, because it does not appear to fit in with those beliefs.

    I'm not sure there's really anything new about 'new scepticism' as I've described it there, it sounds as old as the hills to me, and not much different from what I'd tend to call 'conservatism', but I'm describing 'new scepticism' from memory anyway, so maybe I've misunderstood or misremembered it - there's probably a bit more to it than that...
  13. Esther12

    Esther12 Senior Member

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    I've not read this thread, but just a quick comment re the title bit: 'nothing unusual'.

    I've been reading more general medical stuff recently... so many patients get abused by doctors. It's really disgusting. (Sorry for butting in - every time I see this thread I want to make that point though).
  14. Mark

    Mark Acting CEO

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    ...but Floydguy's point is probably more pertinent: that what is most striking about the modern self-styled sceptical movement, as exemplified by characters liike Ben Goldacre and his Bad Science forum members (dedicated to the "Great British sport of moron-baiting"), is their extraordinary interest in being sceptical about things they happen to dislike or disbelieve on the basis of cultural misunderstanding and unquestioned false assumptions - things like homeopathy, 'alternative' and traditional mediciine, etc - and their frankly mind-blowing lack of scepticism of authority, established science, and mainstream scientific opinion. Their supposed scepticism seems to me incredibly selective, and amounts to little more than a blind defence of the scientific status quo.
  15. floydguy

    floydguy Senior Member

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    Well there should be a new movement that is based on rewarding radical new discoveries. It doesn't take a lot of brilliance to sit around and be a skeptic/critic. Rummy used to speak dismissively of "Old" Europe basically putting it down for old, calcified ways of thinking. Ultimately, that will be our problem too. We will be locked into the status quo unable to move forward. Ultimately, we will be surpassed by those who have the freedom to think outside the box. Milton Friedman was concerned with regulatory capture. Not only has the regulatory environment been captured in healthcare but the research side as been as well. People will only wake up when more than half the population is either not working, disabled or on Medicare. Coming soon to a theater near you...Then the government might snap out of it and realize that maybe sleeping around with Big Pharma hasn't been such a great idea.
  16. Mark

    Mark Acting CEO

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    I can echo that point too Esther: there's a good case to be made for "...AND nothing unusual". I too have been finding plenty of parallels that illuminate that our situation is far from unique. There are an awful lot of phenomena that we contend with that are really just the endemic conservatism of the system. And there are truly appalling things that go on within the medical system that have nothing to do with our situation: perhaps some US readers will be unfamiliar with the story of Harold Shipman? "Trust me, I'm a doctor" holds very little weight since we learned about what he was able to get away with for so many years...
    http://en.wikipedia.org/wiki/Harold_Shipman

    That said, at the same time there really is something very unusual and disturbing about the history of ME/CFS: I can't think of any other medical condition with such a controversial and bizarre recent history, with the exception of autism.
  17. ixchelkali

    ixchelkali Senior Member

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    Mark, I liked that definition of psuedoscepticism. I especially liked Truzzi's comment on the negative hypothesis:

    I can think of a number of scientists who need to have this explained to them; Greg Towers comes to mind, with his pronouncements that studies that show XMRV could be contamination mean that it is contamination and furthermore that it proves XMRV is not the cause ME/CFS. They most certainly have not met the burden of proof of their negative hypothesis.

    The fact that any hypothesis has not yet been proven does not mean that it has been disproven, and to imply otherwise is sloppy thinking. So many scientists make condescending remarks about the general public's lack of scientific thinking, yet they themselves engage in this kind of scientifically sloppy remark. It bugs me.
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    mark
    the thing about Shipman is, he was not the first mass murdering british doctor, he just happened to get caught is all! :/

    Dr John Bodkin Adams is believed to have killed 163 patients, and is the only known case in English legal history where the prosecution deliberately threw the case to let a guilty man walk free!
    why? cause "professionals don't do that kind of thing! only lower classes do that!" and other such ludicrous crap.
    http://en.wikipedia.org/wiki/John_Bodkin_Adams
  19. markmc20001

    markmc20001 Guest

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    Regarding Doctor abuse. I have had many-many doctors. Almost all of them truely wanted to help. There were one bad apples that stick out from the 20 or so doctors I've have over 25 years.

    One of the docs I appreciate very much suggested I get CBT. However, I now realize he suggested CBT because of the literature released on the CDC website that suggested CBT as being effective. Not his fault for supporting a useless form of treatment that is not covered by insurance.

    Treatment Options
    There are many different types of treatment and management tools available for Chronic Fatigue Syndrome. These include:

    Professional Counseling
    Cognitive Behavioral Therapy (CBT)
    Graded Exercise Therapy (GET)

    Symptomatic Treatment
    Alternative Therapies
    Support Groups
    Pharmacologic Therapy
    Sleep Hygiene
    Pain Therapy
    Orthostatic Instability Treatment
    Antidepressants


    http://www.cdc.gov/cfs/general/treatment/index.html
  20. kurt

    kurt Senior Member

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    Just want to point out that paranoia is a known side-effect of B12 deficiency. And CFS patients are often B12 depleted.

    So what happens when a group of B12 depleted people are systematically abused by medical doctors, for whatever reason, and treated condescendingly by authorities? I suspect there is almost no way to convince B12 depleted people in this situation there is no conspiracy.

    I don't know if there really are conspiracies here beyond the ordinary behavior of small-minded humans in high places, which is mostly stupidity and self-protection. And maybe some ME/CFS patients can make a difference by blowing the whistle, if they find a problem, CAA did that a few years ago with the CDC. But I have never seen any evidence of true conspiracies, intentional deception, in the CFS research world. Stupidity, definitely, just look at all the ridiculous psychological studies, but conspiracy? That may have happened on rare occasion but I don't think it is our main problem politically. Rather it is the stupid name and identity the CDC created for us.

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