New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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IOM’s Redefinition of ME Invites Over-Diagnosis and Risks Inclusion of Primary Psychiatric Disorders

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

  1. Nielk

    Nielk

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  2. halcyon

    halcyon Senior Member

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    I'm not sure I agree. Since PEM is a requirement of the IOM criteria, and PEM isn't a symptom of any psychiatric disorders that I'm aware of, how could the IOM criteria include psychiatric disorders?
     
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  3. taniaaust1

    taniaaust1 Senior Member

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    People who have severe mental health disorders should not qualify for a ME/CFS diagnoses seeing nothing in it is testable and its just all based on the persons subjectivity.

    Im annoyed that no tests have been included in the new definition as this would of stopped this issue of those who may only have mental health issues being diagnosed with ME/CFS.

    Those with severe mental health issues get delusions, halluncinations etc .. They can imagine things etc so how does one know they even have PEM? even if they think they do and say they do..

    There is also the issue of that people define PEM differently.

    A person who is a true hypochondriac.. will believe they get PEM just like they believe all the other things they think they have be it a failuring heart or whatever. (I know those are extremely rare.. Ive only met one.. but they are out there).
     
  4. catly

    catly Senior Member

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    Unfortunately I don't think physicians or anyone else have an inkling of what PEM means. Unless training accompanying the roll out of this new definition includes specific definitions around PEM and how to assess and confirm it in patients happens, I think the notion of over diagnosis of SEID in a primary depressed population could certainly happen.
     
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  5. Nielk

    Nielk

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    People with major depression feel listless and are known to feel a heaviness when upright. This might be construed as PEM.
     
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  6. anciendaze

    anciendaze Senior Member

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    @Nielk and @catly

    You've touched on a point which bothers me concerning both exercise intolerance and orthostatic intolerance. Many doctors interpret this to mean the patient simply does not want to exercise or remain upright. (At the other extreme we have doctors who fail to diagnose either intolerance unless the patient collapses and is incapable of continuing.) You have also brought in the problem which turned up when Leonard Jason ran a group of very carefully diagnosed patients with major depressive disorder past a group of doctors who had been given the material used to train doctors for an actual study based on the Reeves "empirical definition"; 38% of them were immediately classified as having CFS. Based on studies of incidence of depression this could easily add millions of cases to the CFS diagnostic category, outnumbering those with clear physiological illness.

    This was a major failing, and at this time I don't see anything to prevent this happening with SEID. This is a special problem when research cohorts are deliberately put together which are dominated by such misdiagnoses, and that is one reason so much research has failed to find anything consistently wrong with patients so defined.
     
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  7. snowathlete

    snowathlete

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    We are always going to have some people being misdiagnosed with our disease. I don't see this changing until we have a good biomarker. And this is true with Fukuda, CCC and ICC as well. But it is something that can be minimized - and should be!

    I think Dr. Clayton is right to not arbitrarily rule people out just because they have a comorbin condition, but the proposed definition relys too heavily on physicians being honest, cautious, not lazy, and good at their job, to rule SEID out if the comorbid condition accounts for all the symptoms that the patient has. My experience of doctors suggests they are going to be pretty rubbish at that.

    Although research definitons would undoubtably have to be much tighter, this still means a continuation of the problem we already face, perhaps inflatted further, where too many people are misdiagnosed and so you tell someone you have SEID and they say, "Oh, yeah, my neighbour had that, they're alright now - had the Lightning process/GET/drank the blood of a newt/CBT/Homeopathy/took a holiday/antidepressants and now they're back at work and right as rain."
    We could do without that, it helps no one, least of all us.
     
  8. catly

    catly Senior Member

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    @snowathlete :lol::lol:Ha, ha where can I get some newt blood because I think I've tried all the rest except that and lightening process and so far they haven't worked for me!

    But on a serious note, unless there is some major effort to create training materials and/or assessment tools to accompany these criteria I agree that there could be issues with over diagnosis.

    I also think that encouraging diagnosis by any/ all providers without giving suggestions for treatment that specifically excludes CBT/ GET is another problem area. We're already seeing that in media reports like the NBC news broadcast where the medical consultant obviously didn't bother to read the report herself and ends with the recommendation that CBT and exercise helps, UGH!
     
  9. anciendaze

    anciendaze Senior Member

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    Was the newt struck by lightning while doing yoga? That would cover several treatment options at once.
     
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  10. halcyon

    halcyon Senior Member

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    They said they are releasing a separate clinicians' guide soon.
     
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  11. catly

    catly Senior Member

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    I do hope that it includes assessment criteria to distinguish PEM and decreased functional status related to ME- I mean SIED-from depression or other fatiguing illnesses.

    I know when I was first affected and got referred to a rheumatologist I was trying to describe how I could still perform my usual activity and exercise but then, what seemed to be random to me then, I would be totally overwhelmed with fatigue. Later I came to realize that this was the beginning of PEM for me, but it was delayed some times by days. The rheumy knew and commented to me that I wasn't depressed, but he was totally perplexed by my symptoms. In hindsight it's hard to believe he hadn't had any patients with these symptoms before since he was pretty close to retirement age when I saw him.
     
  12. Vic

    Vic

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    That is actually because... the cause of CFS and many cases of major depressive disorder are actually the same thing! Muahahahaaaa
     
  13. Hope123

    Hope123 Senior Member

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    1) I've seen and treated patients with depression and they react differently to exertion. In fact getting out, doing things, and exercising helps with their symptoms. They may not want to go out but when they do, they often feel better.

    2) Look at the section in Chapter 4 on PEM. The type of symptoms, onset, and duration of them in response to exertion are not like what is seen in depression. Most people with only depression do not suffer symptoms of pain, fatigue, etc. that last hours or days after minor exertion.

    3) I don't think the line between "primary" and "secondary" depression is as clear as people like to think it is, especially for people with this illness and depression. Depression actually comes in many flavors. People may become depressed because they lost their job, their spouse left them, they are alone, etc. but they can also become depressed because of inflammation in the brain (what those who tout ME believe) or body. The strongest evidence has come from studies showing medicines that decrease brain inflammation can treat some depression that is non-responsive to traditional anti-depressants. (A blood test was used to show inflammation) Sick people could have depression due to both these causes. The science is not yet refined enough that we can say it was only the circumstantial reasons or it was only the illness.

    While I used to think it was important to exclude people with depression from diagnostic criteria -- I don't have depression and I did not want them clouding studies -- my reading has changed my mind. *Including* people who are ill and have active depression may in fact provide a key to this illness: perhaps these are the folks with the most brain inflammation and by excluding them, we have or will miss the boat. The second key is to compare the folks with illness + depression with those that have illness but NO depression, not cut out people with depression across the board.

    4) From a clinical point, there is NO science to say that if you have a psychiatric condition, you can't have this illness. That was a byproduct of Fukuda in my view because fatigue, not PEM, was the focus and fatigue is common in both depression and ME/CFS. There are no studies to show that being depressed protects you against getting ME/CFS.

    There are likely people right now who have both illnesses but aren't getting diagnosed or treated for ME/CFS, even if they have it, because of prior exclusive criteria. How would you like to be one of those people?

    5) Questionnaires will have to be developed or validated to address PEM in clinics but that is separate from the issue of listening and believing what people tell you, even with psychiatric conditions. People with psychotic disorders -- if they are treated, during certain times in their illness, etc. -- can still communicate their symptoms accurately. I had schizophrenic patients on regular medication; they didn't have any problems communicating and I didn't have problems understanding them. Similarly, I had patients with Alzheimer's disease whose complaints were dismissed by other doctors -- the assumption was they don't know what they're talking about -- but many did if one took the time to ask and listen. Assessing someone to see if they are actively psychotic and unable to differentiate reality from hallucinations is different from an across-the-board view that mentally ill individuals can't realistically convey their symptoms. We want healthcare professionals to take our symptoms seriously, let's extend the courtesy to patients with other illnesses.
     
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  14. Wildcat

    Wildcat

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    There could be some very clumsy mis/diagnoses with the SEID definition/diagnosis. Because the IOM have concentrated on the limited number of symptoms they say that everyone has, it risks the dismissal of f(by doctors inexperienced in CCC/ICC), or simply non recognition and non treatment of, very disabling symptoms that are in the CCC/ICC definitions but are not the central symptoms of SEID.
    .
     
  15. Vic

    Vic

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    @Hope123 I didn't say they ARE the same thing, their CAUSE is the same thing.
     
  16. adreno

    adreno PR activist

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    You don't know what the causes of ME and depression are, so please stop claiming so.
     
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  17. beaker

    beaker ME/cfs 1986

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    You are a relatively new member ( almost a month ) . It seems to me that most of your posts {http://forums.phoenixrising.me/index.php?search/18530487/ } are all about promoting a physc agenda. Are you being intentionally provocative ? OR Are you just new and trying to get your legs here ? Or do you really, as a patient, take to heart what you post ? Or maybe you have a different illness then the majority of members ? I ask sincerely. I'm thinking that as as a new member, you might want to read a bit more on this illness. There's a great library of information. In fact the "meat" of the IOM report actually is quite thorough on much of this. We welcome new members and are happy to answer questions the best we can. Some have more science and medical experience then others, we are all trying to understand and find our way through this plague. Not everyone agrees. That's ok.
    It's just that when you continually post to promote your psych theories on every thread, it becomes old. It's ok to start a new thread on it. -- a mind body thread ? But then maybe keep it on that thread, and those interested in refuting research w/ psych theories have a place to post.
    If you read the research ( or ask questions about it on the forum) you will see that the research does not support your theories. Neither does the new IOM report.
    Best of health to you.
     
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  18. Vic

    Vic

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    @beaker I'm not proposing psychological theories, I'm proposing Physical theories of the cause of CFS/ME being in the body. I'm just trying to point out how psychology can affect our body, particularly where the physical cause of CFS resides. I'm not saying it's "psychogenic" or born in the mind. It's is a 100% physical disease. In some of the posts I've made so far I'm just trying to tease out the possibility of psychological interrelationships between the mind and the body. It seems like in some people, including me in my experience, DO have some kind of mind-body interplay that can cause some symptoms to fluctuate. It's actually tiny, but I was able to notice small changes. Again, doesn't mean it's "in the mind," and it doesn't mean meditating or CBT can cure it, though I think there's a reason CBT has been somewhat effective as it just helps reduce some of the acute psychological triggers or exacerbations of fatigue,

    I've been studying CFS/ME and a handful of other syndromes for over a year now after trying to find out why I was so tired and half bed-bound approaching the end of 2013. I am being somewhat provocative because I was able to figure out the cause in myself. From what I've seen/read/heard, it seems to be the same cause in most others with the syndrome. Just trying to see if others can come to similar conclusions for themselves without it having to be told to them. It's complicated... but I'll make a thread sometime. Not ready yet.
     
  19. lansbergen

    lansbergen Senior Member

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    The brain is part of the body.

    What is the mind???????? Definition please.
     
  20. Vic

    Vic

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    Hah, good question.

    The mind is the body and the body is the mind.



    Not me, but some clues. This isn't his best video on the subject, but the quickest I could find. Don't take this as at all specific to CFS, but maybe you can glean something from it :)

    Oh here:

     
    Last edited: Feb 12, 2015

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