The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Cause, Bias and What is Seen with the Eyes

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Aug 1, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    The Question is Cause, the answer is Bias and the solution is Human Eyes

    Intelligent Design or Spontaneous Generation?
    Global Warming caused by humans or caused by natural climate cycles?

    No doubt, people with ME / CFS will not agree on the above issues. Many of them will have strong beliefs on these issues. And each position can site evidence.

    The question in both of these is not as much debate over the validity of evidence, but what is the cause that produced that evidence.

    How can it be that reasonable people can look at the same evidence and come to different conclusions as to what is the cause?

    The answer given, from people on both sides, often reflects the bias they bring to the issue, whether it be the instruction they received in college or the instruction they received from their parents. Also, some people are affected by their selfishness, greed, desire for freedom from accountability, a desire for a world with justice or desire to control other people. These desires, on both sides, warp a persons processing of the evidence so they grab hold of the points that back up what they WANT it to prove and dismiss or minimize that which is contrary to what they already believe.

    ME / CFS science is plagued by the same problem. Common theories:
    • Something is wrong in the genetics that causes biological abnormalities, failure in body systems of central nervous system and leading to chronic inflammation and cognitive problems.
    • Something is wrong in the immune system that leads to cascading abnormalities that include the central nervous system and chronic inflammation.
    • Something happens in the patients childhood that likely warps the persons biological response to stresses, including problems in the central nervous system and chronic inflammation.
    • A person is just under so much stress (emotional and / or physical) that a central nervous system failure occurs leading to immune system problems, chronic infection and chronic inflammation
    • A retrovirus infects the immune system causing failure that leads to chronic inflammation and central nervous system dysfunction.

    These theories take the same evidence and make it fit into a pre-conceived bias. Its easy to do. Logic is used in all the above theories. None are speaking of Martians causing the illness. They are all plausible.

    Are patients influenced by the same human frailty? Of course they are. Theyre ideas of the illness are based on what they feel and what tests their own doctors run and what researchers say, that is researchers that present theories that match what the patient already thinks of their illness. Do they consider other theories with an open mind, even if it differs from their own conclusions?

    Certainly, researchers come to their research with opinions that shape what aspect of the illness they study and how that study is structured. They will likely find what they are looking for but will rarely find what they arent looking for. So often their own research just furthers their own previous beliefs of the illness. Immunologists find immunological abnormalities, psychiatrists find psychiatric problems, neurologists find neurological problems, virologists find viruses and cardiologists find blood pressure and heart rhythm problems. Unless of course, they are trying to prove something isnt there. Then likely, the study will be structured to not find it.

    A united understanding of CFS is not currently attainable as all those involved have drawn conclusions because they depend more on their minds, their bodies, their own motivations and preconceived ideas than their reasoning. A desire for proving what they have already concluded overrides any evidence to the contrary, since that evidence is not visible and not 100%. Their heart is stronger than the mind.

    How and where will the solution come?

    Looking back at another illness... only when lesions could be seen in the human brain was the dispute of cause of symptoms settled in the case of multiple sclerosis. Similarly, only when a bacteria could be seen in the stomach was stress alone rejected as the cause of stomach ulcers.

    Before these medical debates were solved, another scientific debate continued for centuries. The shape of the earth, some thought, was solved by Christopher Columbus. It wasnt. His theory was just one of the thoughts of his day. His discovery of the Americas did not show the earth was circular. The debate continued even among intelligent men. In that case, religious leaders were heavily involved in that debate, with their own bias that completely clouded their reasoning powers. Only when men traveled to the moon and could actually see the shape of the earth, was that debate solved among the world in general.

    Since God has not appeared in physical form, the debate over intelligent design or spontaneous generation will likely continue. Jesus of Nazarene, according to his apostles, had to deal with similar difficulties. As critics demanded a physical, visible sign. He refused, according to the reports. He said that by not showing a sign, they could show what is in their heart, whether they wanted to believe or not. He also predicted that later generations would want the same thing.

    Since humans can not see CO2 coming out of tail pipes and causing rise in temperatures, also not visible, that debate will likely continue. Nothing visible shows human activity has increased higher temperatures more than past warming cycles of the earth.

    If XMRV turns out to be a cause of many CFS cases, it will be the visible evidence that is needed to solve the debate for the illness many patients are suffering from, no matter what it is labeled.

    In the mean time, all stake holders need to remember that the question is cause, the answer - even their own - is bias and the solution will be what is seen by the eyes.

    If only our pee were blue.

  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia

    I pretty well agree with Tina. There are many ways to assemble explanations for perceived facts. Some people prefer one explanation over another. The criteria for why somebody prefers one explanation over another can explain a lot about them. Even many pro-fact and pro-science people are stuck in dogma. Everything is subject to question so far as I am concerned, even the so-called "facts". The problem with much of the public is that they either don't want to question anything (this takes time and effort), or don't want the answers (they don't think certain answers are in their interest) or they either don't know enough to realize the problem exists or simply don't care. It is always a minority of people who drive understanding forward, and eventually carry the rest of the population with them. The problem we face is that we require a certain critical mass of people who are knowledgeable about ME and CFS and aware of the costs of not acting - and give a damn.

    The main point I think Tina is making (please correct me if I am wrong Tina) is that we need some piece of evidence so obvious and dramatic that very few will even try to deny it. This will ultimately come from the continued scientific research, and is one reason we have to keep supporting the researchers. The only other way this could happen is with a runaway pandemic, and that is not how any of us want to see understanding dawn in the minds of deniers.

  3. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I mostly agree - with a few differences of perspective. People do not look at the same evidence. Biology itself is impossibly complex to fully understand. But even the known body of potentially relevant published information (not to mention unpublished knowledge), is impossibly large to study in one lifetime. As such, bias is not only frequent, but actually requisite to actually function. Bias itself is actually well respected in all societies. We usually call it experience.

    The major systematic flaw of medicine today is that the disease paradigm is overly reductionist. A disease is not just caused by a microparasite or a SNP or an environmental factor. It is caused by complex interactions between combinations of such factors over time. Even in cases that some people may consider black and white - single nucleotide polymorphisms (SNPs), the actual expression of the disease still depends on these complex interactions. It begs the question, how does the patient still survive? The 'overwhelming piece' of the puzzle is not the end of the discussion.
    Most medical practitioners, especially the gps I've talked to, more or less admit that they aren't actually doctors (in the definitional sense), but rather 'medical technicians' (in different words of course ;) ) who rely on the science and tools of others to practise. There are of course exceptions - those who teach and research are 'real doctors'.

    On a higher level, the relationships between the various institutions, practitioners and patients themselves are poorly optimised but that is another topic altogether.
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi Andrew1,

    I don't disagree with you. My background includes a lot of systems theory. I would like to add, though, that it isn't only about what information that people use, its also about what they choose to use. Choice is influenced by beliefs, values and experience.

    Biology as a science still has a long way to go. We are only just beginning to understand the fine points of genetics, while proteomics and understanding symbiotic organisms and detailed neural function are still right at the beginning. It takes time, its very complex, and most of the information we need probably still hasn't been discovered yet. We also have to unlearn a lot of dogma.

    As to complex interactions of pathogens and body, it is more complex than just genetic variation, pathogens etc. It also depends on the time course of events - as things happen, the body/pathogen system will react differently, and those changes affect future interactions. The system adapts over time, and may well represent a moving target of changing pathophysiology - which is another reason why researchers have so much trouble with this.

    I think most of what we think we understand about ME and CFS are just pieces of the complex pathophysiology. We need to isolate a single (or several) critical cause/s such that treating it will treat the illness. The pathophysiology is only a clue: finding treatment, or better a cure, is the ultimate goal. I still think XMRV is the best chance we ever had of finding a critical cause - even if XMRV is not causal, the high prevalence in CFS will ultimately tell us a lot about the illness.



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