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Email to IOM re: diagnostic algorithm

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Feb 11, 2015.

  1. Andrew

    Andrew Senior Member

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    Even though I think the new name and criteria will work to our advantage, I think a mistake was made with the diagnostic tree. Here is my email to IOM.

     
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  2. taniaaust1

    taniaaust1 Senior Member

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    (i hope you dont mind that I broke your post up when quoting it, it's hard to read like it was).

    I agree Andrew. I didnt even mention "fatigue" at all to a doctor till a year into the illness. I was going to my doctor over "viral symptoms", terrible viral symptoms.

    I was going to the doctors mentioning the following symptoms - headache, muscle pain, very sore throat, swollen glands and high fever". Fatigue was a minor thing compared to the other things making me feel very unwell, so I didnt even mention it or think about that. I did not present with "profound fatigue" till after a year into having ME as that was soo over shallowed with other symptoms and it was the feeling so unwell which was sending me off to bed, not fatigue!

    Its like when someone has severe flu, they go to bed as they just feel very very sick. They dont go to bed cause they feel exhausted!! And neither does someone with severe flu usually go to a doctor over "fatigue", the go due to muscle pain and feeling gastly.
     
    Last edited: Feb 11, 2015
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  3. taniaaust1

    taniaaust1 Senior Member

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    ?? someone. What's the email for IOM? I havent done an email for ages as I have issues with my email but I really want to do one on this even if I got to get another to send it for me.

    Its completely wrong the fatigue part and I think needs correcting.

    .......

    I also dont like that the symptoms need to be present for 6mths thing either. With a good ME definition, one should be able to tell one has ME/CFS way before that as soon as the tests rule out everything else.

    If they cant tell from the defintion if someone has me or not and need to base it on a time thing, I think it shows there is something wrong with the definition.

    What other illnesses are out there in which one needs to wait SIX WHOLE MONTHS before they can be diagnosed?
     
  4. Andrew

    Andrew Senior Member

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    mecfs@nas.edu
     
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  5. Sasha

    Sasha Fine, thank you

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    Thanks for doing this, @Andrew - it's important.
     
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  6. Keela Too

    Keela Too Sally Burch

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    I agree "fatigue" although present was never the main symptom for me either.
     
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  7. Andrew

    Andrew Senior Member

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    I wonder how many people with bad flu call their doctor office ask to be seen for profound fatigue.
     
  8. anciendaze

    anciendaze Senior Member

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    I believe the report obeys a principle I call "conservation of confusion". The basic criteria for intake to the diagnostic process are the same as those for existing guidelines. If you examine all the boxes, you will see no requirements for clinical tests that might find exclusionary conditions. This is also in line with current posted guidelines. Exactly what goes on when you tell a doctor to "consider other diagnosis" is pretty vague. And, once a patient is in this diagnostic category there is no obvious way out.

    Any busy and pragmatic clinician who realizes the end treatment recommendation of this algorithm is to provide symptomatic relief and sympathy, where possible, is not going to waste time going over details. Then there is the problem of exactly what the terms in those diamonds mean.

    If you are dealing with a cardiologist who regularly runs stress tests, the term exercise tolerance means the patient completed the test without collapsing or showing serious cardiac abnormalities during the test. This will be written in the chart before the patient leaves, completely ignoring any question about what happens in the next 24 to 72 hours. Should the patient end up in the emergency department during this period this might (or might not) be revised. It is quite probable no one will tell the cardiologist. Don't expect a change in this definition of exercise tolerance without a long fight.

    Orthostatic intolerance is another criterion which already involves widespread misunderstanding. There have been cases on this forum where a patient with serious tachycardia when upright was told this did not indicate POTS. They simply had a "high normal heart rate". The reason was that the doctor did not feel any particular effort when sitting in a chair, and could not imagine that the patient's heart rate was already far above basal rates under those conditions. With heart output already close to maxed out, the added effort involved in standing scarcely mattered.

    I won't even waste time here arguing about misinterpretation of cognitive impairment.

    If anyone reading this comes up with a rare disorder which will end up in the wastebasket at the bottom, and possibly lead to permanent injury or death, they could send me a message so I can include it in a later post.

    The bottom line is that the mountain has labored and brought forth a mouse (Parturient montes, nascetur ridiculus mus). Anyone with a text editor that does systematic search-and-replace can now make a quick pass over existing documents or web pages providing "guidance" for doctors and ostensibly bring them in line with this report by changing a little terminology. For bureaucrats such activity is all in a day's work. Actually changing what doctors do is another matter entirely.
     
  9. Andrew

    Andrew Senior Member

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    Maybe both of you could email them and tell them your personal experience. It certainly cannot hurt

    The doctor guide is not out yet, but this is what can make us or break us. If the guide clarifies things properly, patients can use this as an authority to argue with. And some doctors will actually read it. Also, according to what was said at the presentation, the recommendation includes that these criteria be reviewed for revision in no more than five years. Now, I'm not so naive as to think that this cannot possible be ignored. But I think that if NIH/CDC/embraces the IOM recommendations (including the name and criteria), I think we are better off then if this whole thing flops. Not that I'm thrilled with it; just that I think we are worse off without it.
     
    Last edited: Feb 11, 2015
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  10. SpecialK82

    SpecialK82 Ohio, USA

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    I couldn't agree more Andrew, I think that diagnostic algorithm was poorly-written and overly simplistic. I haven't read the paper, but from watching the presentation and reading quotes here from the report, the algorithm does not rise to the quality level of the rest of the paper.
     
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  11. Butydoc

    Butydoc President

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    Hi SpecialK82,

    I actually like the diagnostic criteria. By being simple, most clinicians now have a easy way to distinguish cfs/me from most other diseases. It helps the average clinician to ask the correct questions to identify this illness. This would seem to steer the discussion from a psychological problem to a real somatic disease. Since there isn't any accepted biomarkers as of yet, this gives the physician something to go on. I suspect these diagnostic criteria will make it easier for disability claims. Just my opinion as a clinician.

    Best,
    Gary
     
    Last edited: Feb 11, 2015
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  12. anciendaze

    anciendaze Senior Member

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    @Andrew

    We can agree that we should get all the mileage we can out of whatever scraps are thrown our way. Where we disagree is on the effect of documents carrying recommendations from independent committees. I would be overjoyed if this produced significant improvement in organizations controlling government medical research, but have seen nothing indicating such changes are actually in the works. The way many news organizations had stories all queued up and ready when the publication embargo was lifted shows pretty clearly that this was implemented to achieve a change in public relations. The revision within 5 years recommendation shows the timescale on which this process operates.

    When the controversy over XMRV erupted I thought this would result in some new science in fairly short order. If people were upset about "wasting all that money" in fighting over the cause of ME/CFS, and disagreed with the authors of the science paper, the obvious solution would have been to leave the mistaken claims alone, after saying you did not find them convincing, and find the real cause to end the argument once and for all. When various powers-that-be brought in W. Ian Lipkin to act as an honest broker between groups with irreconcilable opinions, I cynically estimated it would be at least another year before anything was settled. This was an underestimate.

    You can assign blame in any number of ways which do no one any good. What you cannot deny is that the solution I mentioned above was not even contemplated seriously until the war over XMRV was pretty well over. Nobody in power seems overly distressed by delays of years. Since this follows such stabs at diagnostic criteria as Holmes (1988), Oxford Criteria (1991), Fukuda (1994) and Reeves (2005), or questions about etiology going back at least to the 1950s, I think I'm on safe ground in stating that nobody in government has lost their job for delaying solution of this particular medical problem.

    My own experience with bureaucracy shows that clear statements from an independent panel are only the starting gun for a new round of organizational games. You can go back and read the Rogers Commission report on Challenger, including the minority opinion by Richard Feynman, and follow subsequent history to see the results. If you can do this when organizational failure was written large in the Florida sky, for a dyed-in-the-wool bureaucrat doing so in a case like this is merely something like the finger exercises concert pianists use to warm up.
     
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  13. Andrew

    Andrew Senior Member

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    I don't disagree. I just think we need to show up for the match. I think the IOM results would have been much worse were it not for patient advocacy. One example is all the FDA testimony that was referenced. Patients showed up at the FDA event and testified, when they could have stayed home and said "what's the point." And I think this (and other actions by patients) had an effect here. So even though I'm not feeling like there is a bright future ahead, and see how easily this can all go sour, I feel less hopeless than I did before. At least today, I do. Who knows how I'll feel when I get a chance to dig into the document..
     
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  14. alex3619

    alex3619 Senior Member

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    Yes @Andrew, its been bugging me too. Mild patients who are pacing well or getting good treatment wont have much chronic fatigue. For most though it will be accurate. Its a hole in the process.
     
  15. alex3619

    alex3619 Senior Member

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    There are probably things we need to fight, but so far, for the most part, this is good information we can use for advocacy. So we rightly should have issues with errors, but we should not throw all this out without considering it. We need a basis for advocacy in the future. The question is still, right now, what is good and what is bad, and how do want to proceed. I have only started on the full document ... its a little large. :grumpy: (Which is expected)
     
  16. Andrew

    Andrew Senior Member

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    I think some of the press articles might have gotten it wrong, and they are swinging it over the be more like fatigue. And I think this is an opportunity for us to comment. My problem is I have not been able to browse the report, and I don't like to challenge things unless I know of what I speak.
     
  17. SpecialK82

    SpecialK82 Ohio, USA

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    Thanks for giving us a clinician's viewpoint @Butydoc, makes sense - busy practice, needs easy, quick tools. Do you think the patient would then need to be referred to a SEID specialist, or is there enough here for any physician to treat and manage SEID? I would think physicians would still be scared away of managing such a complex illness, and the patient would probably fare better at least seeing a real trained specialist at least initially...
     
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  18. Andrew

    Andrew Senior Member

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    I live in Los Angeles and doctors here (and possibly elsewhere) refer to rheumatologists. But an easier diagnosis matters little as long as the CDC doctor toolkit (which the CFSAC said should be removed from the web) continues to be the standard of treatment that is parroted by most major medical institutions. And that's something that needs attention.
     
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  19. Butydoc

    Butydoc President

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    Hi Special82,

    They problem I see is that there isn't enough SEID specialist to treat all the patients with this disease. Dr. Montoya had a 4 year waiting list before he closed his practice to new patients. Ideally everyone with SEID should see a SEID specialist, unfortunately this is not practical. Hopefully these new guidelines will assist other physician to identify this disease and offer treatments that aren't psychologist based.

    Best,
    Gary
     
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  20. SpecialK82

    SpecialK82 Ohio, USA

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    Yes I agree that there are not enough specialists and it creates a huge problem. The other alternative is for us to go under an existing specialist like a rheumatologist, but how do we make them take us (lol). I wonder how that works. Hopefully in the next few years there will be enough research to put us under neurology, immunology, rheumy, etc
     
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