ME Are We Just Marking Time?

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 13, 2008.

  1. tansy

    tansy New Member


    Are we just 'marking time'? by Jodi Bassett, November 2008 (modified
    version)

    http://www.ahummingbirdsguide.com/markingtime.htm

    Sometimes comments are made by some advocates about the lack of a unique
    diagnostic test for Myalgic Encephalomyelitis, comments like:

    "Until there is a single specific test for M.E., M.E. will not (and can not)
    be taken seriously..."

    "Until there is a specific marker for M.E., researchers will not/ can not
    separate out M.E. patients from those with various unrelated 'fatiguing
    illnesses' in their studies, unfortunately..."

    "M.E. will be seen as psychological until we have a unique marker that
    proves that it's a real disease ..."

    "The only way things will improve for people with M.E. is if research can
    give us a specific test for M.E. We must put everything we can into medical
    research. Only further research and a test will give us the respect and
    legitimacy we desperately need..."


    There are a number of serious flaws with this approach, including the
    following four main points:

    1. There may never be a specific marker for M.E. or we may not have one for
    decades

    Enormous sums of money have been spent searching for markers specific to MS,
    Lupus, and cervical cancer - as well as a vast number of other diseases -
    over many years and decades and have been entirely unsuccessful.

    Of course, so very little time and money has been spent researching genuine
    neurological M.E. patients and looking for the unique markers of M.E. that
    we may indeed find that the task is a simple one and easily completed within
    a short time frame. This is a very real possibility.

    BUT, the possibility that we may NEVER find a unique marker for M.E. present
    in 100% of cases must also always be taken into account. This is also a real
    possibility.

    (This second possibility is also made far more likely - or even a
    certainty - due to the fact that there are almost no studies being conducted
    using a 100% M.E. patient population these days:, because of the bogus
    disease category of 'CFS' and the newer but equally flawed concept of
    'ME/CFS.')

    You don't see people with Multiple Sclerosis commenting that of course
    nobody can be expected to take MS seriously or do legitimate MS research
    involving only MS patients until there is a specific MS marker, do you? Or
    people who have Lupus or cervical cancer? So why is M.E. somehow different?
    Scientifically at least, M.E. isn't.

    There are of course no tests which can be used to confirm a (mis)diagnosis
    of 'CFS,' but 'CFS' and M.E. are very different entities.



    2. These comments seriously undermine the credibility of all the existing
    M.E. research

    These comments imply that the science supporting the fact that M.E. is a
    distinct organic neurological disease is nonexistent, or 'shaky' in some
    way. The reality of course is that the science is very clear that M.E. is a
    distinct organic neurological disease, and it has been since at least 1969
    when the World Health Organisation classified M.E. as an organic
    neurological disorder in their International Classification of Diseases.

    Despite popular opinion, there simply is no legitimate scientifically
    motivated debate about whether or not M.E. is a 'real' illness or not or has
    a biological basis. The psychological or behavioural theories of M.E. are no
    more scientifically viable than are the theories of a 'flat earth.' They are
    pure fiction. There is enough objective scientific evidence to prove the
    basic facts of infectious, virally induced, acute onset neurological M.E. as
    per Ramsay and Hyde and the more than 60 documented outbreaks worldwide etc.
    many hundreds of times over. (For more information see What is M.E.? Extra
    extended version.)

    These comments about our need for a unique diagnostic test before we can
    expect to be given legitimacy also absolve those perpetuating serious abuses
    of M.E. patients of blame - and so remove any impetus for them to stop the
    enormous harm they are causing.



    3. Even if we had a unique single test, this would change little or nothing

    Even if there were a specific diagnostic test for M.E. discovered, there is
    no reason whatsoever to presume that this piece of evidence would not be
    ignored or misrepresented like the many hundreds of equally conclusive
    pieces of evidence that we already have. Of course it would be!

    There was enough hard evidence proving the organic and serious neurological
    nature of M.E. many decades before the bogus disease category of 'CFS' was
    even created. 'CFS' is 'medically unexplained' or 'unexplainable' and
    'mysterious' but genuine M.E. isn't and never was. Right from the start this
    was never a scientific battle, it has always been a political one. If the
    overwhelming evidence spanning over 70 years of severe testable
    abnormalities, viral causation, more than 60 outbreaks and even the many
    deaths from M.E. weren't enough, nothing ever will be. No amount of science
    alone will ever get us out of this mess. If it could have, it would have
    already, as the science has been there for decades. If this were about
    science, indeed the definitions of 'CFS' would never have been created in
    the first place.

    Yes, patients got rid of the 'hysterical paralysis' tag when it was proved
    that Multiple Sclerosis was an organic neurological disease, but what is
    happening with M.E. is completely different. We cannot stop our abuse in the
    same way, because in our case it happened the other way around; we had the
    evidence M.E. was an organic neurological disease already BEFORE the vested
    interest group even got involved.

    The problem we face is not that we don't have enough scientific evidence,
    but that all the overwhelming evidence we do have is being purposefully
    ignored for mere political and financial gain.



    4. We already have a SERIES of tests that allow M.E. to be reliably
    diagnosed

    Most compelling of all, there are actually a series of objective tests which
    readily allow a diagnosis of M.E. to be confirmed - in a manner similar to
    the way MS and Lupus are diagnosed - RIGHT NOW!

    If all tests are normal then a person does NOT have M.E. That is a fact.
    M.E. is a distinct easily recognisable and testable disease with a number of
    unique features, it is not merely a diagnosis of exclusion as 'CFS' is.
    These tests which together can confirm a M.E. diagnosis include:

    SPECT and xenon SPECT scans of the brain, MRI and PET scans of the brain,
    neurological examination, neuropsychological testing and the Romberg or
    tandem Romberg test, various tests of the immune system (including tests of
    natural killer cells), insulin levels and glucose tolerance tests,
    sedimentation rate testing, 24 hour Holter monitor testing, tilt table
    examination, exercise testing and chemical stress tests, and physical exam.

    On a purely scientific level, we have more than enough information to
    reliably diagnose patients with M.E. using objective tests (and by taking
    detailed case notes and conducting a detailed physical exam etc.) within
    just a few weeks of the onset of the disease. If the will and the funding
    were there, scientists could right now very easily make sure that studies
    contained a 100% M.E. population - just as they do with MS patients or
    patients with Lupus and so on. Scientifically, it would be no more difficult
    to do this for M.E. than with these other diseases. For more information
    see: Testing for M.E. and Dr Hyde's The Nightingale Definition of M.E.

    The problem is not that these tests don't exist, but that doctors - and many
    patients - are unaware of this information on testing, and so on.


    In conclusion...

    M.E. is not difficult to diagnose, or to distinguish from 'CFS' or any other
    fatiguing illnesses. M.E. is also not 'difficult to define' or 'mysterious'
    or 'medically unexplained' or a mere 'diagnosis of exclusion.' These are
    characteristics of 'CFS' but not of M.E. M.E. is no more difficult to
    diagnose though using a series of tests than is MS. In fact, it has been
    suggested that M.E. diagnosis is significantly less difficult and more
    reliable than that of MS! We can also be a lot more certain about the cause
    of M.E., compared to MS. The cause of MS is hotly debated, while the fact
    that M.E. is caused by a virus is well established beyond doubt and there is
    overwhelming evidence that M.E. is caused by an enterovirus.

    This 'we need to wait for a test and more science before we can expect any
    real change' approach to M.E. advocacy does us no favours. There are so many
    enormous hurdles facing people with M.E., and M.E. activism and advocacy. At
    times it seems overwhelming.....and it is overwhelming, but especially so
    when additional hurdles are put needlessly in place by us.

    Yes, having an idiot-proof one-step diagnostic test would be wonderful, and
    of course we should do what we can to make that happen. But to imply that we
    can't expect much to change until we have such a test is madness.

    We are fighting so many powerful and influential groups, but what we have on
    our side is ethics, reality and SCIENCE. That is HUGE for us. Even with all
    their power and money we have a truly enormous advantage over them; but only
    if we use it. The truth has to win out in the end, but we have to let it!

    We must act now with the abundance of science we have, there is no need to
    wait endlessly for more. We must dedicate ourselves to not ever compromising
    on the facts of M.E., and doing everything we can to get the facts out
    there. This is a political battle. We also need to know enough not to work
    against our interests by promoting harmful propaganda to the public as if it
    were fact, and to refuse to support groups and individuals who are guilty of
    this. That is the only way we will get anywhere. (We also need far more
    doctors and others to have the guts, intelligence and integrity to do the
    same, it goes without saying. We can't do this alone.)

    The unadulterated scientific facts about M.E. are mind blowing and utterly
    compelling and credible, but the 'CFS' and 'ME/CFS' propaganda isn't.

    There will never be a better time to act than NOW. Things are only getting
    worse for us as time goes on, not better. People with M.E. are being
    horrifically abused and neglected by the medical profession and even friends
    and family. They are suffering horribly and dying horribly (often
    needlessly) every minute of every day. There is no time for any of us to
    waste just 'marking time.'

  2. jasminetee

    jasminetee Member

    This helps explain our situation very well: "Yes, patients got rid of the 'hysterical paralysis' tag when it was proved
    that Multiple Sclerosis was an organic neurological disease, but what is
    happening with M.E. is completely different. We cannot stop our abuse in the
    same way, because in our case it happened the other way around; we had the
    evidence M.E. was an organic neurological disease already BEFORE the vested
    interest group even got involved.

    The problem we face is not that we don't have enough scientific evidence,
    but that all the overwhelming evidence we do have is being purposefully
    ignored for mere political and financial gain."

    That is helpful for us to know so we can understand what's happened in the past and how we can try to change the perception of ME in the future.

    I don't think however that any of us are just "marking time" as the article states. We are doing the best we can to survive day to day. Even those of us who are totally bedridden are faced with more challenges than anyone can imagine. I think they were just trying to get everyone motivated but I had to say something about that.

    Thanks for posting this Tansy.

    tee