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ME/CFS: A disease at war with itself
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Mt Sinai recruiting for PEM study

Discussion in 'Active Clinical Studies' started by Sasha, Nov 12, 2012.

  1. Sasha

    Sasha Fine, thank you

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    This has appeared as a 'news flash' on Dr Enlander's website:

    Mount Sinai is conducting a study on ME/CFS, to learn more about the immune system and genomic data of patients with ME/CFS. The study will involve filling out questionnaires, riding an exercise bike for up to 30 minutes as tolerated, taking a stool sample for genetic testing and drawing blood for three consecutive days after the initial exercise. Participants will receive their test results as well as $140 compensation (check). If you are interested in participating, please email micol.zweig@mssm.edu, with any questions and your contact information. Micol Zweig, the Clinical Research Coordinator, will contact you via email.​

    I don't know if it's the same study mentioned back in May as being in the pipeline:

    http://forums.phoenixrising.me/inde...many-faceted-exertion-physiology-study.17530/

    In that thread, it said:

    Sounds very well worth participating.
     
    snowathlete and Mjmouser like this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I plan to be I this study. I've never done one before. don't look forward to exercising, but the test results may be useful.
     
  3. Sasha

    Sasha Fine, thank you

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    Thanks, Justin - that's going to help all of us. I wish I was in NY so I could do it too. Good luck with the exercise test! Hope you recover quickly.
     
    snowathlete likes this.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks, Sasha. Mt. Sinai is in my neighborhood, otherwise I wouldn't do this study! : )
     
    ggingues likes this.
  5. Sing

    Sing Senior Member

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    Ha, ha. I hope you don't recover quickly. Show them the evidence! It looks to be a good study. You are a trooper--

    Thank you!

    Sing
     
    justinreilly likes this.
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I would participate, but it's a haul for me, and the compensation is not enough to cover my expenses (fuel, food, lodging etc..), so I cannot do it. Why does a study that last 3 days pay so little? Who determines this?

    GG
     
  7. beaker

    beaker CFS/ME 1986

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    I've been in multiple studies over the years and have never been offered any reimbursement. In fact, some of the studies cost me quite a lot to participate in. For me, the payment , hopefully down the road, is a better understanding of this plague and treatment. And of course some studies were treatment oriented and I certainly hoped those would of made me much better. I live off of disability, and it is not easy. I do realize that some could not do that w/ such limited resources, which is sad.
    It's a tricky thing....... would you rather have funds for studies go to participants or to pay lab expenses, etc.. so more work can be done (when there are patients who can afford to participate) ? There were those, in the past, who have been offered or have been able to successfully solicit community help to participate in studies . --- Not just cfs/me community, but other groups -- church, etc.. where a person is from. If you feel strongly about participating, maybe there are some resources in your community you could tap? Ask for sponsors ? Friends or family for a chip in ?
    Other patients to hook up with and share a room and expenses with ? Just shooting out some random ideas.
    It all takes more energy.... so may not be right for you to do. Best wishes either way. It's generous of you that you are willing to make yourself sicker for a study.
     
    snowathlete and AFCFS like this.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm, I have participated in a few studies in Boston, and they have all paid something. Thank you for your contributions, I would think that the compensation to participants is a drop in the bucket for studies.

    I would rather have funds go to poor patients, if your rich and don't need the money, then don't take it.

    I have been ill for 9 years, soon after moving into my community, so I don't have much for resources. Family is not well off, so not going to ask them for any money. I would not have a problem sharing a room, but they probably only do 1 person at a time, I'm not bashful anymore.

    GG
     
  9. Nielk

    Nielk

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    It seems like the advantage here, unlike some other studies is that you would receive your results. This in turn, besides helping all of us, could be beneficial for you as well.
     
    taniaaust1 and justinreilly like this.
  10. loayachil

    loayachil

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    I have called and emailed them, and they told me that it was only open to one of Dr. Enlander's patients (or someone who was not a patient but was willing to go for the initial visits that would cost around $1300). Has this changed? I can understand that Dr. Enlander would need to know that his patients are really CFS and not something else, but was dissappointed that I could not take the test, or at least been given an exam for the test (as other tests have offered).
    Oh well. I am still desparate for some bio-marker that would either come as a test or that my insurance would cover (still haggling for a spect scan).
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I did the 2 day disability testing over 2 years ago now. I woud like to help the science/CFS, but I need additional motivation to go thru such a large undertaking.

    GG
     
  12. Recovery Soon

    Recovery Soon Senior Member

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    I'm in this study. I have requested to exercise as vigorously and for as long as they will allow in order to induce the biggest reaction possible.

    I want some answers- and I'm hoping this will paint a very big picture for me- and the disease.
     
    Little Bluestem and ggingues like this.
  13. Firestormm

    Firestormm Guest

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    Sasha, have you been able to confirm if he is recruiting precisely for that study you detailed? Is there any more information available do you know. I'd also like to see how many participants he is including and if the study will be blinded. Thanks.
     
  14. Sasha

    Sasha Fine, thank you

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    Hi Firestormm - I haven't asked him - I just noticed that on his site and posted it here. If you're interested in taking part and want that info to help you decide, that guy with the contact email would probably be able to tell you.
     
  15. Firestormm

    Firestormm Guest

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    I'm based in Cornwall in the UK Sasha :)

    No doubt we'll find out more in due course. Thanks anyway x
     
  16. Sasha

    Sasha Fine, thank you

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    Oops, should have seen that!
     
    Firestormm likes this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If you feel like you can do this without seriously damaging your health, then I applaud your effort and am totally in awe. Thank you!
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    overall, I think Dr. Enlander is a bargain, even including the initial tests. If you are not already a patient of another specialist, I would urge you to consider becoming a patient of Dr. Enlander if you are in a reasonable distance (I see you are in NY). (He takes Medicaid, btw)
     
    Sasha likes this.
  19. Recovery Soon

    Recovery Soon Senior Member

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    I have no idea how seriously this will affect my health- and I don't care- I've been waiting 6 years for someone to do exactly this study and see what's happening after exercise and I want maximum data- which I think will only happen by a big effort- which I plan to give.

    I'm also really excited about the genetic test- I want a bio-marker so when a treatment comes I'll know what will or won't work for me.
     
    PhoenixDown, taniaaust1, Sea and 2 others like this.
  20. Nielk

    Nielk

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    More info re: the study:

    The Mount Sinai POST EXERTION MALAISE STUDY takes place in NEW YORK over a PERIOD OF 4 DAYS. so the patients need to be here for that time. The study measures indices before and after exercise, these indices relate to various systems including the cardiopulmonary system, liver, kidney and immune cytokines, T and B cells antibodies to various antigens; viral, bacterial, mycoplasmata, mold, yeast and parasites, a complete blood count, and the genome. Included are bowel motion studies to assess possible relationships of gastro intestinal bacterial, viral , mold and parasite abnormalities. This is the most comprehensive multi disciplinary study ever performed in ME/CFS.
     
    Firestormm likes this.

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