Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Why is deceptive ME research tolerated?

Discussion in 'General ME/CFS Discussion' started by Keela Too, Aug 25, 2014.

  1. Keela Too

    Keela Too Sally Burch

    It's a good question and one that many ME folk struggle with.

    Anne Keith wrote on this subject in a FB thread, and it was so well expressed that what she said is now copied onto my blog.

    My favourite line: "Just as no doctor would accept any study that defined lung cancer as "a cough," so no doctor should accept any M.E. study which defines this illness as "fatigue." "

    Please read in full here:
  2. DanME

    DanME Senior Member

    What a sad story...

    I ve long thought about, why ME was dismissed from early on to be a serious physical, severely disabling and sometimes life threatening disease...and why psychiatrists gained unfortunately so much influence over time. And why the same cycle happened to a lot of other diseases like MS, Parkinson, Asthma, Atopy and Gastric Ulcera.

    I think several reasons played and still play a role. Here is my reasoning (sry for the wall of text;):

    1) We live in a society, which believes over all in mechanistic reasoning. This is a direct consequence of the scientific revolution, which formed our world more than anything the last 400 years. Things are only real, if they have a physical (or biological) cause. Anything else is dismissed. I agree with that. I am a naturalist, too, but this world view can sometimes cause problems, especially in medicine.

    (Religion often tries to counter this view and spiritual people believe in a lot of things, which have no known or seen cause, but even they adopted the mechanistic world view in day to day life. People believe in God or in Krishna, but most of them agree that a car is driven by combustion and a virus is the root for their cold (and not a demon).)

    2) The fundamental principle of all science is the unknown. Only, if you admit, that you don't know, why the world functions the way it does, you can start to look for new theories, new evidence and new ways to find out the real underlying principles. If you pretend to know (because of an old book or because an old wise man told you why), you stop looking and stop searching for new answers.

    3) Medicine is only half-scientific and not a core natural science. It is rather an applied science and evidence based medicine only gained more and more influence in the last 50 years. It is well documented, that going to a doctor before the beginning of the 20th century was a bad idea and reduced your chances of survival in almost any cases. Physicians are as old as mankind, but natural sciences are not. Physicians in the early times had often only their experience and some books with a lot of false information. Even today it is estimated, that in 40% (!!) of the cases used therapies are nothing more than a good (or bad) guess (and work mostly through the placebo effect) and the other 60% are based on good and reliable science. Ill people are desperate and want to get healthy again, it is only natural to try some approaches or drugs, which doctors used for a long time, but have in reality no scientific base. It is better than nothing.

    4) All this comes together, when people are clearly sick, but the doctors cannot find the cause. They often fall into the trap of their mechanistic reasoning and think it cannot be real, because they cannot see any known physical or biological cause, but they don't make the next step and start to think scientifically. Today the problem is worse than fifty years ago, because our high standard of technology gives us (and sometimes doctors) the false impression, we know anything fundamental about the body and the world (but we clearly do not). A real scientist would stand back and admit the unknown. He would say to himself, alright, the patient is very sick and I cannot find the cause, because I just don't know it yet. In practise most doctors don't do that, they stay to their catalog of known diseases and traditional approaches or ask the higher authorities like an older doctor, what do to. In emergency situation and well known diseases this is a real blessing. Scientific discussion in such situations is useless or harmful. In lesser known and not fully understood diseases it can lead to ignorance, pseudoscience and finally disaster.

    5) Something has to fill the gap, when doctors cannot find the cause. And this gap is primarily filled by the field of psychiatry and today by the field of psychosomatics. The incredible complex brain, the psychology and the character of the patient must be responsible for symptoms, if we cannot explain them through other bodily mechanisms. They can fill the gap so easily, because a lot of psychiatric theory is just a good guess and incredible hard to prove through the complexity of the brain and our psychology. It gets worse, if the patient does not get better and psychiatrists reason the cause is the will of the patient himself. Unconsciously the patient doesn't want to solve his problems etc. You couldn't say this, if the heart doesn't get better, because the heart has no personality and no will.

    One of my favourite examples of this dangerous cascade is the Torsion Dystonia, a genetic disease, primarily found in some jewish families. It leads to painful muscle contractions, usually beginning in one arm or leg. 60 years ago, nobody knew the cause and the doctors couldn't find anything wrong. So they finally reasoned it is a problem of the mind. The only available treatment was decades of psychoanalysis. It didn't really help anybody, but nevertheless it wasn't dismissed at all. Today we know, the reason for TD is a gene mutation in some important nerves, which are responsible for muscle communication. The mutation is dominant, so it runs in certain families. Today it is treated with physical therapy, some drugs and Botox. But all this was unknown 60 years ago. It wasn't even known, what the DNA looks like.
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  3. Keela Too

    Keela Too Sally Burch

    Thought provoking post. Thanks for taking the time to write.

    I also think there is a problem with large organisations like the NHS - if a treatment can manage to become the recommended one for an illness there is massive money to be made.

    Thus research is no longer neutral. There are always vested interests. No longer does research impartially seek the truth, but instead there is often a desire to "prove" a certain treatment is effective. Which as we all know is NOT the way to do science.
    Little Bluestem, ahmo and DanME like this.
  4. Iquitos

    Iquitos Senior Member

    Doctors like Dr.Peterson, Dr. Cheney and others started sending the CDC proof of physical illness back in the 1980s. The CDC stonewalled them and everyone else since, either countering the docs' findings with bogus "research" or simply ignoring them. Some ME researchers have been black listed or denied permission to continue their ME research on pain of losing their positions in academia or research.

    It's not really that only psychology was left to explain this illness. Had the physical findings been taken seriously and followed up 25-30 years ago, we would not still be fending off the psychobabble attacks. I remember in 1994 finding out that in Japan the illness was called low natural killer cell disease. Had the US government health bureaucracies been interested in actually finding the cause and treatment, that was a good place to start -- with the immune abnormalities.

    Peterson and others sent the CDC the brain scans showing punctate lesions of the brains of their patients, similar to those found in MS, Alzheimers and AIDS. The CDC purported to disprove their findings by using old equipement to do brain scans and publishing that study to pooh pooh the real research done by the docs on the ground. So Peterson and Cheney re-did the scans on those original patients, using old equipment like the CDC used in their "rebuttal" and found that, yes, if you use that old equipment you don't pick up the lesions. Did that do anything positive? No, the CDC simply ignored that study and went right on with their $5 million dollar propaganda campaign to rename ME as Chronic Fatigue Syndrome.

    The fact that it took a Congressional investigation in the 90s to get the CDC to stop diverting ME/CFS research money and the fact that no one was punished for that crime, and the fact that they simply stopped diverting the money and started diverting public opinion by spending that Viral and Rickettsial Diseases research money on "mind-body" studies claiming it was childhood sexual abuse -- tells me that there is some unseen hand preventing progress in the research into the cause and treatment of ME.

    The conspiracy theories on WHY can be read elsewhere on PR and I believe there are enough dots to connect and find that there is a conspiracy from high up in the food chain, like from the Pentagon. None of the other explanations, like sexism, good 'ol boy stupidity and how "complicated" ME is, none of those do it for me. Too much time, too much evidence of physical evidence and too much push back against the truth just destroy those arguments, for me.
    heapsreal, Sean, xchocoholic and 2 others like this.
  5. DanME

    DanME Senior Member

    Politics certainly play a huge role in this process and the mismanagement and mistreatment of ME/CFS. And yes, there were physical findings from early on and if they had been taken seriously 30 years ago, we probably would have solved the mystery 20 years ago and there would be good treatment available today.

    But I don't believe in a conspiracy. ME is probably around for a long time and it didn't begin in the 80s. I think the mindsets of doctors and researchers play a huge role. If we struggle to find the cause, it is not real or psychological. Money plays a role, because if something is def proven, they have to pay for huge studies, research and treatment trials for hundred thousands of patients (In Germany they is a huge discussion at the moment, because of a new treatment option for Hepatitis C, which costs 60.000€, has a success rate of 90% in curing patients and nearly no side effects. It is the ideal wonder pill. The government calculated it will cost 18 Billion € to cure everybody in Germany alone. And nobody knows, where the money is going to come from).

    Science is not always a honorable discipline, but is often driven by huge egos (especially in medicine again), who stick to their theories and their life work no matter what. Also Science is often not a straight forward process and luck to find the right thing at the right moment has a great influence in paradigm shifts.

    Also it is not just about the CDC or the NHS. Other countries indipendently dismissed CFS as a real disesase, even in socialised medical systems and in socialised research programms.

    The failure to recognize a disease as physical is not new. It happened to a lot of other diseases as well.
    Last edited: Aug 25, 2014
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  6. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    As more and more diseases were moved from the psychological to the physical realm, the psychobablers must have become more and more desperate. No wonder they do not want to give up ME.
  7. Valentijn

    Valentijn Senior Member

    I think one reaction is that they are tightening their stranglehold on the patients still within grabbing distance. The good thing is that with more and more blatantly biological causative factors being found, it's getting more and more apparent to bystanders that the psychobabblers really are trying to strangle us :eek: (<- strangle face)

    But some psychobabblers seem to be trying to branch out. One way is by insisting that many or most biologically ill people also have psychological dysfunction causing psychosomatic symptoms (fatigue, pain) in addition to the "real" ones, or which continue after treatment. And the marginally saner psychobabblers are more interested in automatic psychiatric referrals for all people diagnosed with certain diseases, since a small percentage of those patients develop psychological problems as a consequence of being ill.
  8. Min

    Min Guest

    If there were a link between the fast growing numbers of cases of myalgic encephalomyelitis and vaccine contamination, the pharmaceutical industry would not want it found, or even considered, , would they?
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    This is not a failure of mechanistic reasoning. Its a failure of reasoning, yes .However its more about magical thinking. This comes down to a bunch of things. One of them is the psychogenic fallacy, for which I wrote a blog:

    Skip down to The Siren Call section. The first section is about the UK disability scandal.

    There are other forces here too though. One of them is about how vested interests distort science, a phenomenon called Zombie Science. Part one of my blog on that is here:

    Yet there are more insidious forces at work too. My simplified take on that, a little satirical, is here:

    I highly recommend Angela Kennedy's book on this topic: Authors of our own misfortune?: The problems with psychogenic explanations for physical illnesses

    I have been looking into these issues for years. I am trying to write a book on this though its on hold at the moment as my cognition is compromised for now. There are many complex factors in play here. For the most part doctors are not to blame, but they are responsible, at least in part There is a difference. An older comment (out of date) on my book is here:

    There are political, ideological, economic, vested interest, zombie science, irrational, rationalizing, biased etc. factors involved here. Putting it down to any one of them is focusing on one tree and not the forest. You can get some flavour of where I am coming from by reading my signature.
    biophile and DanME like this.
  10. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    It is easier to blame or dismiss patients than to accept that you have been neglecting them for decades.
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  11. A.B.

    A.B. Senior Member

    The other is by claiming that mind and body are one and the same, then pretending to treat physical symptoms with psychobabble. Or by making some vague references to physical abnormalities and pretending they support psychological models. This leads to the bizarre situation of abnormal lab tests "proving" that the patient has a psychological disorder. In CFS, some of them claim the endocrine abnormalities are sign of poor adaptation to stress (rather than sign of an underlying pathology).
    Last edited: Aug 27, 2014
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  12. Sean

    Sean Senior Member

    At the very least we would probably not be treated so shabbily by the medical system and broader society.

    It is arguable that somatisation (under its various names) is the core claim of 'pure' psychiatry, certainly one of the core claims, and that the profession's overall credibility and authority is based largely on the validity of that claim.

    Having that claim disproved or substantially weakened, with the inevitable loss of influence, status, and income that would accompany it, does not appeal to them.
    biophile, Keela Too, alex3619 and 2 others like this.
  13. xchocoholic

    xchocoholic Senior Member

    Imho, it's because the medical profession is mostly made up of test takers who'll believe anything if they think it's from a "reliable" source.

    Btw @DanielBR A link between dystonia and gluten was discovered as far back as 2006 or 7. I'm not sure how often a gf diet resolves this tho. It came to my attention back when my ataxia resolved.

    The treatments you gave, botox, drugs and pt won't get to the root of the problem and only keep the patient going back to the medical provider. Follow the money trail.

    Tc .. x
    Last edited: Aug 29, 2014
    ahmo likes this.
  14. ukxmrv

    ukxmrv Senior Member

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