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Natelson study at Beth Israel - studying CF or CFS or ME/CFS?

Discussion in 'Active Clinical Studies' started by Anne, Feb 19, 2015.

  1. Anne

    Anne Senior Member

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    (Apologies if this is already being discussed - couldn't find it through a search.)

    Have you seen this ad for a study at Mt Sinai Beth Israel, by Benjamin Natelson (if I understand things correctly)?
    https://www.facebook.com/CFIDSAssn/photos/a.74987762107.90825.47921632107/10152746962142108/?type=1

    Do we know if they are studying ME/CFS (PEM mandatory), Fukuda-CFS or the very broad concept "chronic fatigue"?

    I find the wording confusing. In the headline they ask for people with "fatigue with no medical explanation". They then go on to talk about chronic fatigue syndrome, but as we know those two are different entities.

    It could be that they are screening a lot of people with chronic fatigue to then find the very small number with actual ME/CFS - I hope that's the case, though it seems a round-about way to go about it.

    I wish all researchers would be clear on the fact that ME/CFS and chronic fatigue are not the same, and make sure to study narrowly-defined ME/CFS where the characteristic symptom is PEM (for example using the Canadian criteria).

    Don't ads like these add to the confusion?
     
    Last edited: Feb 19, 2015
    oceiv and dancer like this.
  2. PennyIA

    PennyIA Senior Member

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    I also did a search about the study, didn't find any other posts on it. I don't think the criteria is very clear... but I have good friend in NY and was looking for excuses to go see her as it was. I went ahead and filled out the paperwork to see if I can learn more.

    The form was 17 pages long. At least one page was clearly trying to identify if it was depression (my gut tells me this is a bad thing, but the optimist in me is hoping they are using to filter people out).

    There was an entire page trying to identify the quality (or lack of it) sleep and whether or not you felt refreshed after your sleep.

    There were several pages capturing health history (but not family medical history - which seemed odd).

    One positive was that they were trying to clearly ask leading questions to try to identify post exertional fatigue as different from regular fatigue after exertion.

    Another positive was that while they asked if I had anything traumatic in my past - they asked it in a very interesting way. Instead of assuming my ancient history was affecting my current health they asked me if anything traumatic in my past was frequently on my mind, or caused me to continue to react to it, or affecting my behavior. I do have trauma in my past. But I'm a firm believer that having been sexually molested as a child didn't cause my physical illness 40 years later. And the fact that it's still on doctor's health histories with a point blank kind of question means that doctors still think that we're all messed up in the head if something like that has happened, ergo, stuff must be psychological. This was clearly trying to probe to see if I might have PTSD or something similar (I don't)... but I can imagine that if I was constantly stressed or anxious about things that had happened 40 years ago, that my energy and strength wouldn't be very good.

    I'm still reserving judgement, but am cautiously hopeful that they asked the pointed questions they did to rule out PTSD, Depression, etc... I meet the CCC concensus - so I might get included in the study even if they are using Fukada... so if they do accept me, I'll have more questions before I'll commit to participate. I won't waste my time with the trip if it's not clear that they are truly studying ME/CFS/SEID (whatever acronym you want to use).
     
    Anne, Valentijn and oceiv like this.

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