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Results of Head Upright Tilt Table Test as a Predictor of Disability ...

Discussion in 'Latest ME/CFS Research' started by Kati, May 9, 2010.

  1. Kati

    Kati Patient in training

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    Results of Head Upright Tilt Table Test as a Predictor of Disability in a Group of Chronic Fatigue Syndrome Patients

    Susan M. Levine1*, MD

    Madeline Sterling2, MD/MPH candidate at Robert Wood Johnson Medical School

    ABSTRACT


    Background: Chronic Fatigue Syndrome (CFS) is a complex illness characterized by the presence of debilitating fatigue, myalgias, sore throats, headaches and cognitive disturbances. Autonomic dysfunction or orthostatic intolerance (OI) characterized by the presence of dizziness, palpitations and frank syncope has been implicated as a cause of some of the debility experienced by a subgroup of CFS patients.


    Methods: Using the results of Head Upright Tilt Table Testing (HUT), in addition to the frequency of symptoms of both CFS and OI reported by 15 subjects chosen randomly from S.L.s private practice, we sought to determine whether the presence of autonomic dysfunction was associated with a likelihood of disability among these patients.

    Results: Of the CFS patients studied 13/15 had a positive HUT. Twelve of the thirteen patients who had a positive outcome on HUT were fully disabled and receiving disability benefits. Three of the thirteen patients who were positive had a history of syncopal episodes and demonstrated syncope on HUT.

    Conclusion: Results of this study suggest that HUT in addition to a strong history of autonomic symptoms, especially syncope, may be useful in determining disability status among CFS patients. It is important to note that methodological differences among testing sites including experience with the method in general, angle of tilt, and monitoring of ambient conditions during HUT, may affect the interpretability of the HUT data. In addition, variability among CFS patients including comorbid medical conditions, such as presence of Mitral Valve Prolapse or Asthma or the use of vasoactive medications prior to testing, may influence the outcome of this procedure.

    This was taken from here and full text available for members only. Anyone member?

    I am curious about what "head upright: means, does it mean you need to keep your head up even when you're horizontal?
  2. rebecca1995

    rebecca1995 Apple, anyone?

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    Kati, thanks for posting this.

    I think what it means is that the study tilted people at a 70 degree angle, or whatever angle is usual for a TTT. I suspect people kept the back of their heads resting against the table in alignment with their bodies; I doubt they were asked to raise their heads. Probably the authors specify "head-up" tilt because sometimes, after the test, docs will put people into a reverse tilt with feet above the head ("feet-up") to help alleviate light-headedness, pre-syncope or syncope.

    From this I infer that the two patients with a normal TTT were less disabled. Interesting, and that goes along with my anecdotal observations of people I know.
  3. Dolphin

    Dolphin Senior Member

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    Normally, one might assume this as the paper was published.

    However I view this more as a filler paper as it wasn't the case!

    Earlier we had been told,
    So the two people, who had normal test results on a tilt table were "fully disabled and receiving benefits from Social Security."
  4. Hope123

    Hope123 Senior Member

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    Well, perhaps I'm splitting hairs here but if 14/15 were fully disabled and 13/15 had +tests, then 2/15 DID not have a positive test and 1 was disabled but another was not. Need full paper to confirm. What I'd like to know is did these subjects report symptoms of OI or did she just pick them based on disability?

    In any case the Journal of CFS has great papers but is not indexed in Pubmed and no longer published. (At some point, tomk, it was published.) Does anyone know the year of the paper? Also, for those keeping track Dr. Levine is one of the main legit docs seeing CFS on the East coast in the US and is newly on the CFSAC this meeting. She's seen CFS patients for more than a decade. Her e-mail is on the abstract; I don't want everyone e-mailing her so Kati, you can e-mail her for the full paper. I hear she responds to e-mail pretty well.
  5. Dolphin

    Dolphin Senior Member

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    No because:
    This suggests that there are two out of the 14 not used up.

    Not sure what the aside to me means?
    This was in the Spring 2010 Bulletin of the IACFS/ME which is totally separate from Journal of CFS.
    If somebody joins the IACFS/ME, they get the papers when they come out. Then when the next edition comes out, the previous edition is available for everyone to read the full papers.
  6. Hope123

    Hope123 Senior Member

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    This is how I read the numbers but the full-text would add clarity:

    15 people were chosen at random. (stated in methods)
    13/15 abnormal test for tilt table 2/15 normal on tilt table
    12/13 abnormal AND disabled

    This leaves 2/15 disabled unaccounted for so Tomk, you're correct, these two are from the "Normal" tilt table tests and this means that the paper can't make a strong statment about tilt tables results and CFS overall based not only on small numbers but also because there isn't anyone who has a normal tilt table, not disabled, and has CFS to fill out a 2X2 table.

    Re: the publishing. As I understand, the Journal of CFS was the journal that IACFS/ME produced until 2006, at which point they stopped paper publication and starting printing only the online bulletin. I don't know the details but suspect it was switched to this because of money and perhaps not enough members, which is sort of a pity as I don't know if having it online has increased readership of their articles or not. I believe very few doctors/ researchers know of the bulletin unless they are steeped in the ME/CFS world already and because it is not indexed, they might be less inclined to publish in it due to concerns about having more exposure. (More exposure/ citations = career advancement.)
  7. rebecca1995

    rebecca1995 Apple, anyone?

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    Thanks for catching this, Tom!
  8. Dolphin

    Dolphin Senior Member

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    The Journal of CFS was independent of the IACFS/ME (or AACFS as it was then) as far as I know. What I heard was Haworth was bought by another publishing company but the new company (perhaps from looking at the sales, etc of the JoCFS), decided not to keep it going.

    The Bulletin of the IACFS/ME has certainly struggled to have sufficient articles. However this gives opportunities for people or articles that might have difficulty getting published elsewhere, in the same way that the JoCFS gave opportunities. So I hope it continues.
  9. Great to see some more research on TILT tests on CFS in this thread, it's not a pleasent procedure but it gives you a neurological label if positive, something CFS patients find very hard to do otherwise. Everytime I have one done, I am very anxious and worry I will faint - yet never do as they (Doctors) abandon the test due to my pulse rate. Oppps.

    UK Professor, Dr Julia Newton who researches and see POTS patients in the UK with CFS had her funding application for Dysautonomia research rejected, using TILT tests.
    Maybe this was because Clinical Champion for CFS, Professor Peter White (NHS Psychiatrist) stated on BBC Radio 4 that diagnosing Dysautonomia (POTS subset)
    was ''unethical' due to the use of a TILT test that was ''un necessary''.

    Oddly, I see that Dr Williams Reeves, refered to Professor Peter White as an 'Expert' in Dysautonomia. Some may see this this as evidence of blocking patients with CFS finding out they have a neurological condition (Dysautonomia) and Dr Reeves is encouraging this, by calling an Psychiatrist an expert in something he is not.

    Ideally a TILT test should be given to all persons suspected of, or diagnosed with CFS. Some attempts at treatment can have some beneficial effects and increase mobility (Midodrine, Vascular Support Stockings).
    Conversely, a negative syndrome label like CFS, removes CFS person's from autonomic clinics, and prevents patients getting a diagnosis and medications.

    There is a terrible irony in a CFS patient 'asking' (for example) for vasoconstrictive medications such as Midodrine, and then being told this is proof they are mentally ill, because they 'believe' they have Dysautonomia. Critically, they (the CFS patient) only believes they have Dysautonomia, as they are prohibited from, or are not aware of, the TILT test procedure.

    I would imagine I am somewhat of a 'rarity' to have this diagnosis of POTS verified in the UK, yet maybe 30% or more people with well defined CFS have it - they just don't know.

    Please see attached ME Research UK document on TILT testing.
    Please also consider quickly clicking through this presentation on findings of orthostatic intolerance in CFS patients in the UK.
    If anyone wants to ask questions about Dysautonomia/POTS or look at symptoms in more details, please check out this site on Dysautonomia.

    Thank you.
  10. Dolphin

    Dolphin Senior Member

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    That's disappointing about the grant. Do you have a reference by any chance or did you just hear it on the grapevine. I'm not doubting it but if I want to mention it, it's useful to know the source of the information (feel free to PM or not answer if you prefer).
  11. Sing

    Sing Senior Member

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    Most of my ME/CFS symptoms fall within the large symptom list for Disautonomia! I just got clued into this word vis Dr. Charles Lapp's recent seminar. Here I am near fainting all morning long, unable to do much at all which requires walking and standing, until later on in the day. Even then I am hardly normal in what I can do. I am now actually wondering if a new designation for ME/CFS might include the word Disautonomic, or Disautonomia....

    I think your pairing both Disautonomia and XMRV in your "name" is a very powerful indicator of the direction in which exploration, or research, ought to go.

    Sing

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