Friday, June 17, 2011

Red Letter Day


I opened up the paper (computer) this morning and was astonished to read the announcement on Dr. Jamie Deckoff-Jones' blog. The Whittemore Peterson Institute in Reno, NV is going to begin seeing patients on August 1, 2011. In a sea of shit, this is one beautiful piece of information. You can read all about it on Dr. Deckoff-Jones's blog.

Many years ago now, a small group of people resolved to tackle these complex neuro-immune illness - ME/CFS in particular. They gave up waiting around for others to step forward, and they decided to do it on their own. These are remarkable people, able to push a situation to its fulfillment. In today's world, this kind of self-driven accomplishment is almost unheard of.

Today's announcement marks the beginning of the full realization of the dream of the Whittemore family (and their wide network of supporters in Nevada and world-wide). They dreamed to have a research and medical facility - researchers and clinicians - working side by side (bench to bedside) to figure out this complex disease - and to design treatments. They resolved to establish an Institute that had the sensitivity, expertise, and determination to wrestle with this illness that has been so marginalize and neglected for so many years.

Now the world has a physical place that can be a destination point for the thousands of patients who suffer from ME/CFS. Perhaps some of us will not be able to get to the medical treatment center - but all treatment protocols will be transportable. The real hope is that this medical unit will be the first of many. This is a huge step forward in this illness. This treatment center is something very real - and its reality is full of great symbolic meaning.

It is worth spending a moment viewing this short video about the WPI made by Peter Cairns last summer. In it you can catch a glimpse of Dr. Fredericks, an endocrinologist, the first specialist attached to the treatment center.

Congratulations to the WPI and all those who are attached to it. Special congratulations should be extended to Dr. Jamie Deckoff-Jones, for assembling this team of physicians. Her work and expertise will serve as a model for future clinical staffs working with this illness.(It is also worth viewing Dr. Deckoff-Jones' remarkable interview in this video.)

For those of you who want to read up on the meaning of "red letter day" go here.

84 comments:

  1. This really is a Red Letter Day, Patient Advocate--for all of us! This kind of news is what keeps me going.

    Patricia Carter

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  2. Chris,

    See you there with our daughters!

    Val

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  3. The WPI are a lighthouse in a stormy sea, shining hope and clarity for you and me.

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  4. When I win the lottery, i'll be there too.

    In the mean while we in the UK are so glad of this much needed hope of a future treatment.

    Hopefully the evidence produced by the WPI, will make it impossable for the USA & UK governments, to deny the family of HGRVS running rampant through-out the human population.

    The fact that governments can't afford HGRVs makes them NO less real.

    fly

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  5. While no one in particular has ME/CFS, the WPI continues the most comprehensive and meaningful research into these neuroimmune illnesses.
    We are so fortunate to have such dedication and support.

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  6. the more one knows, the scarier this stuff gets; but, as said above, the wpi remains a ray of hope. the suffering is unimaginable. xoxoxoxo

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  7. Anyone who possesses the parameters of the illness that brought "CFS" into creation has CFS.

    Since this illness called "CFS" "possesses all the primary determinatnts of ME", if a patient has all those determinants, then they have ME/CFS.

    Every 'particular' one of them!

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  8. Erik - no it doesn't. The parameter(s) of CFS is fatigue. No one has ME/CFS because there is no such thing.

    ReplyDelete
  9. "Characterized by" doesn't mean "Nothing MORE".

    The CFS definition states that its purpose is to "identify persons with a possibly unique medical entity".

    And... what "possibly unique medical entity" was under scrutiny, being in fact, the REASON the syndrome was created?
    An entity that "possesses all the primary determinants of ME"

    YOU keep saying that you must abide by the definition. Then ABIDE by it!

    CFS is ME.
    Using the facts, it all makes sense.
    YOUR tactics of obfuscation never will.

    ReplyDelete
  10. The stated purpose is just that. It fails to do so, thus it is not. The reason it was crated was based on the failure to recognize the unique medical entity that was already in existence. Since then it has failed a diagnosis, overall doing more harm than good. This is obfuscation, no matter how the rhetoric is spun.

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  11. Oh, since H Pylori didn't induce immediate acceptance by the medical profession, Barry Marshall should have just switched names until he found one more to their liking?

    Yes, CFS is a failed diagnosis.
    But amazingly enough, not due to the name OR the definition, but because the entire medical profession met this disease with the exact same response they apply to ANYTHING they don't already know... "ME" included:

    Utterly contempt and disdain!

    So regardlesss of how many screwups there are on this planet, "CFS" is still the entity to which that term was applied.
    This cannot be undone. People can only lie about it and hope they don't get caught.
    Which.. in this new age of information, it is more likely that they will.

    When H Pylori prevailed, it wasn't Barry Marshall who had to change his mind. It was the entire medical profession.

    ReplyDelete
  12. CFS is a failed name and diagnosis. Unequivocally no doubt about it. Of course it can be changed. We call ME what it is. Which is what is was.

    ReplyDelete
  13. No name or flawed definition ever prevented anyone from finding out what CFS is.

    What FAILED was the ethics and integrity of those who didn't bother, before they based their entire assessment of the illness on one word.

    Ignorance is not made correct by majority rule.

    No doubt the name WILL be changed, and regardless of what it is changed to, "CFS" will still be the same "possibly unique medical entity" that the syndrome was based on.

    One thing you should bear in mind is that Ramsay Royal/Free ME had strong evidence of variant polio virus.

    "CFS" was based on a herpetic virus.

    If it should turn out that proteomic comparison finds that all the current crop of people diagnosed with ME have more in common with CFS than they do with Ramasay ME, they will have ME/CFS instead of ME.

    Their preference is immaterial
    because scientifically categorized immune parameters take precedencs over opinions.

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  14. Jill, please, please, please stop preaching your pointless mantra. We've heard it thousands of times, and it's an insult not only to patients who have been diagnosed with CFS/ME, but also to the dozens of doctors who put together the Canadian Criteria definition that is named "CFS/ME".

    I truly feel sorry for you, and especially for your daughter. Having a mother with such bitterness certainly can't be very healing.

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  15. Apparently Jill would like to throw away the thousands of papers showing such things as NK-cell deficiency simply because they researched "CFS" patients, and she wants to throw away the Canadian Consensus Criteria because it uses the name ME/CFS and is faulty (which she claimed right before admitting she had never read it). That would be incredibly short-sighted. Jill is a troll with a vendetta as damaging as the psychiatrists and contaminationists.

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  16. Dr Hyde has said that he regrets walking out of the Holmes committee proceedings with the other ME literate doctors, and allowing them to go ahead with caling the entity under scrutiny, "CFS".

    But as we all know, the deed was done.

    If anyone want to know what "CFS" really is, that's all it takes to explain it.

    (Silly obfuscationists! Those tricks are for kids)

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  17. I wondered what would happen if we were to just stubbornly insist, "OK... you named it, but it is STILL the illness we say it is!"

    And there you have it.

    Opposition pops up from the most unexpected sources you could ever imagine.

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  18. Kelly, no one is diagnosed with CFS/ME or ME/CFS. There is no such thing so why not stop your ridiculous mantra. It's just another made up term. My daughter needs an acceptable diagnosis, as do all patients.
    Game players, I've never said I've never read the Canadian def. so let's not just keep making things up.

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  19. Erik - sure let's all go to our dr or ER and say it is what we say it is.

    ReplyDelete
  20. We will.

    And they will conform to the evidence.

    Not willingly, not voluntarily, and not right away, but they will do it.

    Just as in all past medical-debacles of a similar kind, the facts leave no choice.

    ReplyDelete
  21. Well it's been 20+ yrs. So when do you think this will happen. Another 20? Meanwhile, enjoy the psych ward. The fact is that the actual recognizable and diagnosable illness is ME and we'll stick with that. (And not some bogus ME/CFS or CFS/ME claptrap.)

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  22. As you can see by the way some "CFSers" are getting ampligen and being taken very seriously, it has already BEEN "happening" for 20 years.

    We see no reason to backtrack or surrender just because there are still a lot of ignorant "holdouts" out there.

    To this day, there are still those who say that HIV-AIDS is bogus. Possibly a few "Flat Earthers" left as well.

    "Man never landed on the moon".

    The rest of the world just goes on without them, for it seems that such people are incapable of coming to grips with reality.

    ReplyDelete
  23. Some CFSers are getting Ampligen - vs - over the past 20 yrs - how many? who've fallen off the cliff (fill in the blank - put in psych wards etc.) Clinging to CFS is to surrender to those true denialists of the "real illness."

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  24. Flapdoodle!

    Backing down and delivering CFS into the hands of the psychs is not only an unconditional surrender, it means they were right all along, the victory is theirs, and it allows all the psychs to keep the prisoners they've taken.
    Their veracity is immeasurably enhanced.

    Back to square one. Start all over, give up CFS and beg for ME, which, after having been proven right about CFS, implies their accuracy on THAT one as well.

    You're not secretly working for the psychs, are you? Or perhaps not so secretly, since it's so clear that you want them to make them CORRECT about CFS.

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  25. It's already there, in case you didn't notice. So yes, go back to ME. CFS was never correct and never will be (for ME). It is the psychs who need CFS to make ME disappear. We all know this. So who is working for the psychs?

    This is way off topic of this post. Patient advocate is right, we still have the red letter day.

    ReplyDelete
  26. CFS is the term that was applied to represent a dataset of evidence.

    The quality of the name is immaterial to scientific methodology.

    Science tells us that CFS is that dataset.
    You tell us it is what the psychs say.

    Clearly, it is you who is working for them.

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  27. It is a broad dataset that can include psych diagnoses. That's what the psychs want - to deny the real illness. That's what you want also.

    ReplyDelete
  28. Only if you deliberately ignore the part where psych diagnoses are an exclusion.

    -------------------------------------

    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings. These conditions include:
    chronic psychiatric disease, either newly diagnosed or by history (such as endogenous depression; hysterical personality disorder; anxiety neurosis; schizophrenia; or chronic use of major tranquilizers, lithium, or antidepressive medications);

    ReplyDelete
  29. Really amazing.
    The CDC knew exactly how much they needed to put in, to avoid direct malfeasance, yet precisely how much to leave OUT... so gullible people could be easily confused.

    Then the master stroke!
    A trivializing name that will caused confused people to demolish the only time the CDC was ever forced to concede to the direct evidence of an ME epidemic.

    Spread rumors that "nothing is known about CFS" and let the "Jillogicals" take over from there.

    Brilliant!

    ReplyDelete
  30. Note to Erik - the 88 def hasn't been used since, well, 1988. And even that fell short. We will not concede a real dx to the phony CFS construct - try as you may to misinform and justify it. The Erikillogicals just are too obvious.

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  31. It was used until 1994-Fukuda when that provision was (strangely) removed.

    But one cannot alter a syndrome to render it devoid of its original purpose..
    Those who knowingly subscribe to a deliberate alteration for purposes of diversion or claim the original illness no longer matters...
    (This means you , Jill A or B, or whichever you are at the moment)
    ... are just as guilty of disingenuous intent as those who perpetrated the deliberate alteration.

    CFS was to find out what happened in "four groups of patients":
    Two high schools, a casino, and a girls basketball team. In order to find out if "a possibly unique medical entity" in them might also be the cause of sporadic illness elsewhere.


    http://www.cfids-me.org/holmes1988.html
    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389
    The chronic Epstein-Barr virus syndrome, also known as chronic mononucleosis or chronic mononucleosis-like syndrome, is a syndrome of unknown cause that has been the subject of interest in both medical and popular literature, particularly since 1985.

    As it was described [1-4] in four groups of patients.

    More recent studies [6, 7] have cast doubt on the diagnostic value of positive Epstein-Barr virus serologic results and on the proposed relationship between Epstein-Barr virus infection and patients who have been diagnosed with the chronic Epstein-Barr virus syndrome.
    We, therefore, propose a new name – the chronic fatigue syndrome -that describes the most striking clinical characteristic of the chronic Epstein-Barr virus syndrome without implying a causal relationship with Epstein-Barr virus
    This definition is intentionally restrictive, to maximize the chances that research studies will detect significant associations if such associations truly exist. It identifies persons whose illnesses are most compatible with a possibly unique clinical entity

    ReplyDelete
  32. Your surrender is so utterly unconditional, that you wish to concede on all counts.

    You are working harder to portray CFS as a psychiatric illness than the CDC ever did.

    Is there no way to make Jill A or B understand that if the CDC was completely correct on all points, perhaps UNDERestimating how much of a psychiatric illness it was, from 1988 until 1994, then all CFS doctors and patients were wrong?

    If they were this right about CFS,
    this extends to their views on ME.

    ReplyDelete
  33. Jill, this is the CFS Patient Advocate blog. If you say CFS doesn't exist, then go away!

    ReplyDelete
  34. I didn't say it doesn't exist but it is not ME. I am not trying to portray anything as anything, only to state the fact of what is - not what anyone's "views" are. Such as the case with CFS. CFS is a different case definition AND may capture a different patient population; thus they are not the same. This is what is called a fact in the medical/scientific world. When something does not fulfill the original purpose you can and should render it null and void. You can advocate for CFS, but you CANNOT take away our dx by continuing to bury it as "CFS."

    ReplyDelete
  35. Please help win funds for WPI by voting daily in the Vivint contest via Facebook - they're already winning in their region for a prize of $100,000 and will win $250,000 if they win overall (they're currently 4th overall). Over 1,000 of us are already voting every day - join in!

    Here's the voting link:

    http://www.vivint.com/givesbackproject/charity/769

    I'd love to see a blog post on this - we need to get the word out to the whole community, especially those who support the WPI and want to see more research.

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  36. One can explain that the original entity that was named "CFS" was found by Hyde, Parish and Shelokov to "possess all the determinants of ME".

    So when the patient is diagnosed by a knowledgeable physician, their "CFS" diagnosis represents that entity, despite the badness of the name.
    The knowledgeable doctors can't prevent the others from being incompetent. They can only present the facts and hope that sensibility will eventually prevail.

    Lots of people say "Elvis lives".
    Their numbers do not make them right.

    The coroner "diagnosed" Elvis as being "Deceased".
    The coroner may just be one guy, but he's the one that counts.

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  37. "Knowledgeable" doctor is the operative word. Regardless of the history of what CFS should be today it is effectively: not well for 6 months and 4 vague symptoms. In other words, every chronic illness or complaint seen in a doctor's office.

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  38. It was never otherwise.

    If you look in Osler's Web, you'll see the story of the local doctors who tried to drive Cheney and Peterson out of town.
    All their patients with the "mystery malady" bailed out and had their records sent to Cheney/Peterson.
    Pissed these other doctors off, and they were out for revenge.

    After CFS was coined and it became clear that their rotten attitude toward the illness and disbelief of their patients was putting them in a bad light... guess what they did?
    They became "CFS believers", except, of course, the "CFS" they "believed in" was stress, depression, burnout, and fatigue.

    You could get a real CFS diagnosis from Peterson, or a phony one from a "bait and switch" lying scumbag doctor only six buildings away.

    There was never a time when patients didn't have to fight their way past the liars.
    From what I hear "across the water", even "ME" is no protection against a similar attempt to undermine and destroy the patients.

    So what the Hell. No more game playing.
    Call it CFS, call it 'Yuppie Flu', or call it "That stupid EBV thing" (which I have heard from a doctor).
    They still know what it is.
    It's the "Damned Disease".

    And it is what WE say it is.

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  39. I am totally serious about getting a historical plaque for Cheney and Peterson.

    The CFS debacle has been one of the amazing incidents in all of medicine.

    Regardless of how this insanity turns out, there really should be some sign to indicate
    "X marks the spot" where it all began.

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  40. Which came first, Incline Village or Lyndonville?

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  41. Incline Village did.
    Kaplan and Holmes had already been to Incline and gone before Dr Bell saw his first cases in Oct. of 1985.

    The reason Incline was "Ground Zero for CFS" wasn't because nothing like it had happened before. Dr Rylls 1975 outbreak sounds identical.
    It was because new lab testing had only just become available, and it was upon the basis of these exotic (and expensive) tests that the CDC was finally forced to confront the fact that their working-hypothesis of "CEBV Syndrome" was fatally flawed... necessitating a replacement concept.

    During the CDC's 1987 conference to discuss this, Dr Bell's evidence base had not yet reached a par with Cheney and Petersons.
    (Ted Van Zelst had provided Dr Cheney with a grant to fund these special tests)
    This is why the aim of the Holmes committee was directed at the cohort which had the most evidence at that time:
    "The Raggedy Anne Disease".

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  42. This is where "CFS" gets its "identity papers".
    The "four groups"

    The very fact that the illness occurred in "groups" was the first clue that CEBV syndrome was wrong. The incubation period for EBV is too long for this to be likely.
    Dr Cheney said that this is where "it all began to fall apart", because the literature on chronic-mononucleosis-like-illness never mentioned epidemics.

    ---------------------------


    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    The chronic Epstein-Barr virus syndrome, also known as chronic mononucleosis or chronic mononucleosis-like syndrome, is a syndrome of unknown cause that has been the subject of interest in both medical and popular literature, particularly since 1985. As it was described
    [1-4] in four groups of patients,

    ReplyDelete
  43. In what other investigational endeavor, is there ever the slightest question that if confusion should arise, one simply goes back as far as possible to see where things went wrong?

    "Check your premise" is a scientific standard that is the accepted methodology for virtually every problem that exists... except this one.

    If anyone had ever wanted to know why "CFS" was created, and in response to what illness, there was never any reason for them to be confused.

    Once there was no "Chronic Fatigue Syndrome" and then there was.
    This means that this particular assemblage of evidence had a start point to it.

    All they had to do was go back to where CFS began... and ask.

    ReplyDelete
  44. This is easy. We don't have to go back and ask - we know where and what went wrong - it was CFS. Of course it was the reason for everyone to be confused as it did not actually define or describe the illness that occurred at Incline Village (i.e., ME).

    ReplyDelete
  45. The prologue states that it was never intended to.
    This was just a startpoint.
    Which makes it clear, "You have to ASK".

    -----------------------------------

    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    We have organized an informal working group of public health epidemiologists, academic researchers, and clinicians, to develop a consensus on the salient clinical characteristics of the chronic Epstein-Barr virus syndrome and to devise a definition for the chronic fatigue syndrome that will be the basis for conducting future epidemiologic and clinical studies. Because the syndrome has no diagnostic test, the definition at present is based on signs and symptoms only. This definition is intentionally restrictive, to maximize the chances that research studies will detect significant associations if such associations truly exist. It identifies persons whose illnesses are most compatible with a possibly unique clinical entity; persons who may have less severe forms of the syndrome or who have less characteristic clinical features may be excluded by the new definition.

    ReplyDelete
  46. Furthermore, the evidence grows that this particular entity might not be precisely the same as Royal Free Ramsay ME.

    But one would never know the details....
    unless they ask.

    ReplyDelete
  47. The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    >
    Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings. These conditions include:

    chronic psychiatric disease

    ----------------------------

    Isn't it incredible?
    Right there in the Holmes 88 CFS definition.

    Apparently, nearly everyone in the world felt perfectly free to say that CFS is a psychiatric disease because they didn't even bother to read it.

    CFSers could even have used the "fine print" as a defense against the psychs, but apparently THEY didn't bother to read it either.

    ReplyDelete
  48. 88 def is no longer used, and even if someone had never formally had a psych dx, symptoms are similar.

    ReplyDelete
  49. Are you trying to tell us that anyone diagnosed under the original version has had their diagnosis reversed?

    "symptoms are similar"?

    You really think so... do you?

    You're not "working for the psychs".

    You ARE one.

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  50. The symptoms listed for CFS are similar and without a formal dx they overlap greatly. It is what it is. I am stating the obvious, which you either ignore or do not understand.

    ReplyDelete
  51. The mandate of psychiatric disease being an "exclusion" for a CFS diagnosis means any "overlap" has been ruled out.


    "It is what it is. I am stating the obvious, which you either ignore or do not understand."

    ReplyDelete
  52. Can we assume that the Jill who says we MUST abide by the CFS definition is "Jill A", and the one who says that it doesn't matter is "Jill B"?

    ReplyDelete
  53. Erik - I am not saying what to abide by, but what it is. Has nothing to do with me.

    ReplyDelete
  54. jill...are u saying that AIDS doesnt exist? immune deficiency is a symptom just as CFS is a symptom...but HIV is the cause.

    ReplyDelete
  55. Jill, you DID tell us we must abide by the definition... or, your alternate personality did:

    ---------------------------------
    Jill said...
    The obfucationists and denialists are those who ignore the facts and deliberately mislead for some agenda.

    Fact:
    1. CFS is fatigue by definition. You really want to keep the CFS is not fatigue game going? Rational people should give this some thought.

    2. It is not neurological.

    3. It can be what the psychs say it is by nature of the definition.

    ---------------------------

    And as you can see, "it" cannot be what the psychs say... because psychiatric disease is an exclusion in the original version.

    You're telling us that everyone who was properly diagnosed from '88 until '94 should be agreeable to having their NONpsychiatric diagnosis reversed... because the psychs say so even though the definition says NOT?

    Please refer yourself or your alternate personality to re-reading your own quote about "obfuscationists and denialists".

    ReplyDelete
  56. The other really good "Jillogism" is the one where it's "insane" and sadistist to promote this illness as CFS... except when someone she likes, like the WPI does it.
    In which case its worthy of a Nobel prize.

    "Truth is immutable"... except when it isn't.

    And the "Think pple" understand.... somehow.

    ReplyDelete
  57. Anonymous, immune defficiency is not a symptom but is measurable and testable. Fatigue is not.

    ReplyDelete
  58. Erik, CFS is so broad and vague that people with psych problems can meet the definition. This skews research results. The WPI does not promote CFS. They used the term which has been in play. They do not like it. They have stated as such.

    ReplyDelete
  59. At what subjective point does "CFS happened exactly as described in Osler's Web" turn from explaining what CFS is, to "loving the term" and "clinging to it"?
    Have you invented some magical cutoff point,
    or is this something only the "Think pple understand"?

    Jill, do you understand the meaning of "exclusion"? and "criteria"

    ---------------------------------

    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    >
    Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings. These conditions include:

    chronic psychiatric disease

    ReplyDelete
  60. Erik we all know how it happened. Do you understand what a definition is for and if symptoms are similar and broad enough they can include those with those nonspecific symptoms if they have psych problems. Well obviously not....

    ReplyDelete
  61. It cannot "include" people with psych problems because "chronic psychiatric disease" is an "exclusion" for a CFS diagnosis.

    Do you understand the words "must be excluded"?

    The "CFS Working Case Definition" itself tells us what it is for:
    "It identifies persons whose illnesses are MOST COMPATIBLE with a possibly unique clinical entity"

    --------------------------------

    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389


    Because the syndrome has no diagnostic test, the definition at present is based on signs and symptoms only. This definition is intentionally restrictive, to maximize the chances that research studies will detect significant associations if such associations truly exist. It identifies persons whose illnesses are most compatible with a possibly unique clinical entity; persons who may have less severe forms of the syndrome or who have less characteristic clinical features may be excluded by the new definition.

    ReplyDelete
  62. The CFS definition wasn't based on ALL the evidence that was available,
    for admitting to this was an embarrassment to Straus and Jones, but they WERE careful enough to include sufficient accuracy to avoid being antiscientifically WRONG.

    ReplyDelete
  63. Do you understand that the 88 def is no longer in use. Or that symptoms overlap enough for inclusion regardless of what it says.

    ReplyDelete
  64. One cannot alter a syndrome to strip it of its original purpose.

    Nor reverse a prior diagnosis that was based on excluding psychiatric disease to BEING one, by creating a definition which omits that specific exclusion.

    Not even Fukuda '94 distorts the perspective as much as you do.

    ---------------------------

    Conditions that Exclude a Diagnosis of CFS


    1. Any active medical condition that may explain the presence of chronic fatigue, such as untreated hypothyroidism, sleep apnea and narcolepsy, and iatrogenic conditions such as side effects of medication.
    2. Some diagnosable illnesses may relapse or may not have completely resolved during treatment. If the persistence of such a condition could explain the presence of chronic fatigue, and if it cannot be clearly established that the original condition has completely resolved with treatment, then such patients should not be classified as having CFS. Examples of illnesses that can present such a picture include some types of malignancies and chronic cases of hepatitis B or C virus infection.

    3. Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features;

    bipolar affective disorders
    schizophrenia of any subtype
    delusional disorders of any subtype
    dementias of any subtype
    anorexia nervosa
    or bulemia nervosa

    ReplyDelete
  65. The original purpose failed, without altering. Major depressive disorders are easily excluded but others types can easily fit - fatigue, sleep, memory and concentration.

    ReplyDelete
  66. The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    It identifies persons whose illnesses are most compatible with a possibly unique clinical entity;

    ----------------------------------------------

    It succeeded.
    The entity became publically known, and a possibly unique clinical entity (XMRV) has been found.

    The purpose of a syndrome is not to "be" a disease.
    It is to determine the cause of the disease.

    ReplyDelete
  67. The authors of the CFS definition scrupulously included a scant minimum of accuracy necssitated by the eviddence.
    It wasn't "right enough", but nor was it totally wrong. This allowed Dr Komaroff to sign it, with some misgivings.
    I'm sure that Dr Komaroff expected that the omissions of the definition would not stand in the way of science, for all they had to do is look at the entity under scrutiny... and if they had any confusion... just ask hima about it.

    It wasn't "CFS" that was the real problem.
    Pure medical apathy was.

    ReplyDelete
  68. Syndrome, disease and cause are not the same. Becoming known and success aren't the same either. XMRV may be the cause of some patients in the CFS bucket but WPI still used a different def than CDC's, so even this is not entirely true.
    CFS was/is the problem. And CFS created most of the apathy.

    ReplyDelete
  69. Accomplishing the stated purpose is usually considered "success".
    Although in this case, it was not due to any effort on the part of the CDC.

    So the "CFS" term overwhelmed your logical facilities so badly that it caused you not to care about finding out that psychiatric disease was an exclusion before you spent years telling everyone that "CFS is what the psychs say"?

    Anyone can read the definition and see the real problem and cause for "confusion":

    It's people like you.

    ReplyDelete
  70. The real story.

    Primetime 1996.
    http://www.vimeo.com/13048135


    If anyone can watch this and still say
    "CFS is fatigue", their soul is a Black Hole.

    ReplyDelete
  71. Erik, you've done all this for years and has never worked. Now back to making me the scapegoat. No, CFS overwhelms everyones logical facilities. How many yrs did we play the CFS is NOT fatigue game? That makes sense. And I do not tell everyone it is what the psychs say - but it can be and psych/mood problems can be included (that are not or had not been previously dx as MDD).
    CFS is fatigue by definition. It is really a medical and clinical judgement, not a moral one, so let's not play to emotions. If what we saw on this interview or what occurred in Incline village or the typical what "we" have, then it should not be called CFS. Sorry if this continues to overwhelm your logical facilities.

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  72. Dr Anthony Komaroff. Co-author of the
    1988 Holmes CFS definition.
    Ann Intern Med. 1988; 108:387-389


    "Ten discoverious about the biology of CFS"
    http://www.cfids.org/about/10-discoveries.pdf

    #1. "CFS is not a form of depression".

    --------------------------------------

    I think I'll take Dr Komaroffs word for it,
    and not yours.

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  73. Jill, by saying,
    "How many yrs did we play the CFS is NOT fatigue game?"
    By "we", I take this to include you.
    This means you gave up.

    Not only that, but literally joined the opposition by browbeating people in CFS groups that it is "ignorant" "unscientific" "insane" and "sadistic" to use the term or attempt to "Justify this illness as CFS", and the "Only bullies resort to insults".
    (thatnks for making that clear)

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  74. Erik, It is ridiculous to call something as serious as ME fatigue. It has gotten us nowhere. So yes, doing so is all of the above. You know, the definition of insanity. Only you (and the shrinks) can accept and justify CFS.

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  75. for ErikMoldWarrior

    Could I steal you away from Jill for a moment to talk about one of your favorite subjects...mold?

    I've had ME/CFS since January 1984 and for the first 15+ yrs had a very strong reaction to it. Like a bloodhound, I knew when mold was anywhere nearby.

    For the last 10+ years, however, that's no longer the case. I can be in close proximity, even touch it, and have no reaction.

    What's your take on this? I've chalked it up to Cheney's 3rd Phase of CFS...no antibodies. Do you still react to mold after all this time?

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  76. Jill, you still can't figure out that if you refuse to allow people to alter the original intent of the CFS definition and KEEP their "original CFS diagnosis", in which psychiatric disease is an exclusion, it doesn't serve "the shrinks" at all?

    Anyway, I guess it's "only me".. the WPI, CFS Patient advocate... Cheney, Peterson, Klimas...
    Oh, and don't forget Dr Bell.

    http://www.davidsbell.com/

    "Attempting seriously to get to the bottom of CFS is not false hope. I challenge those who discriminate against and disrespect CFS to make accusations of irresponsible medicine."
    -Dr David. S. Bell M.D.

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  77. Rendere, it looked to me like the mold had temporarily gained access to something that dramatically increased its pathogenesis.

    Mold could lash out and hurt people, and then just as mysteriously, subside and vanish as if it had never been there.

    This is why I kept saying "effect from mold" rather than "mold itself".

    It may be that in your location, whatever it got ahold of to make it so potent is no longer there.

    This strange "enhancement" of what mold was doing caused me to warn Dr Cheney that "There will be millions of us."

    Back in 1986, people totally scoffed at the notion that mold could do anything so bizarre.
    Everyone thought the idea was utterly ridiculous... but no longer.
    I think it is worth noting that, in general, people aren't laughing anymore.

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  78. In answer to your question about whether I am still reactive.
    Yes.

    But only to the stuff that is "acting up"

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  79. Interesting, do you recommend any research I could read about this?

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  80. "Mold Warriors" by Dr Ritchie Shoemaker, or his new book "Surving Mold"

    I recomment ignoring everything else.

    Consider this.
    If some molds changed their characteristics, all the old literature would be nothing but misleading.

    Doctors who do a little cursory investigation are instantly convinced that we "moldies" must be mistaken.
    That's the problem with relying on peer reviewed literature. It makes doctors the profession LEAST capable of responding to paradigm shifts.

    Notice that the insurance companies lost no time in writing exclusions for ANYTHING related to Water Damaged Buildings. They know!

    We are completely on our own. No one will help us, because their literature tells them that our complaints do not exist.

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  81. Here's another interesting clue.

    Years ago, remediologists took no special precautions when cleaning up flooded buildings, yet they worked in the industry for years without getting sick.
    Not even when Stachybotrys Atra (changed to Stachybotrys Chartarum) was identified.
    I interviewed old time remediolgists to find out, and retired ones were mystified that I would even ask if their work made them ill.

    Now they use HazMat procedures with "moon suits", full face-masks, negative air-pressure containment, and even with extensive precautions and training... they ARE.

    If that's not a sign that mold has changed, what is?

    People should consider reading the warning signs before they hit the end of the road.

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  82. In additon to the "Weird flu" during the Tahoe epidemic... what I saw... was this!

    ----------------------------------------

    Black Mold Exposure docmentary film trailer

    Mold: Hazard or paranoia
    Are these people susceptible or crazy?

    http://www.moldreporter.com/?p=1664

    -------------------------------------------------
    A Mold Movie: Melinda Ballard’s House
    Attack of the Stachybotrys Mycotoxins

    http://www.moldreporter.com/?p=1666

    ReplyDelete
  83. Anyone who deliberately omits evidence for purposes of misinformation is dishonest.

    When the deprivation of information harms people, it is "Criminal negligence"

    -----------------------------------

    If people don't know about the mold factor in CFS, it is either because someone never bothered to find out, or they were told, but decided to withold that information from you.

    ReplyDelete