1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Drug Development survey by Lily Chu

Discussion in 'Latest ME/CFS Research' started by MeSci, Mar 23, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,859
    Likes:
    4,622
    Cornwall, UK
    I've just learned of this online survey. The notifier has a very high regard for Dr Chu.

    Read the preamble carefully, and don't start it if you don't think you can complete it in one session. Dr Chu provides this helpful advice:

    "You may want to look at the survey first, think about/ write down your choices, and then return to fill it out when you are ready. You may also choose to have someone else help fill in your answers for you after you have informed them about your choices."
     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    I filled it in and actually found it very quick and easy - but if you're having a bad day then that's good advice from Dr Chu.
     
    Valentijn likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,859
    Likes:
    4,622
    Cornwall, UK
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,859
    Likes:
    4,622
    Cornwall, UK
    Looks like it's only for people in the US, as it asks "In which region of the United States do you currently live?"
     
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    I contacted the CAA to ask if their similar survey could be filled in by people worldwide and they said a big 'yes'. Jenny Spotila on her blog encourages people to do both, although she doesn't address this non-US issue.

    The purpose of the survey is to determine the symptoms and outcomes that are most important to PWME and our experience with various treatments - I don't think those results would vary from country to country. We all have the same disease. If non-US people leave that field blank so that our data can be separated off if necessary, I don't see a problem.

    By all means check with Dr Chu, though!
     
  6. Hugocfs

    Hugocfs Senior Member

    Messages:
    110
    Likes:
    76
    U.S.A.
    I found that very early on I got stuck in the survey. For example question 7, cfs vs me? Generally the diagnosis of cfs is given in the United States, not me. Who really cares anyway? Isn't it just a matter of semantics? On question 9, I think the first time I became fatigued was after overexertion during Hurricane Wilma. It felt like I aged 10 years overnight, but the fatigue lasted only a week. The second time I became fatigued was after working too much at the end of 2007, and the fatigue lasted about 6 weeks. The third time I became fatigued was in September 2009 after working out too much, and that bout of fatigue has never left. So when did I really become sick with cfs, me, or whatever you want to call it? I find these surveys to be too general. I see them really as a waste of time and only serve to give the authors a cheap ticket to a publication to tack onto their c.v.'s. Maybe I am being too cynical?
     
  7. WillowTree

    WillowTree ME/CFS is NOT fatigue!

    Messages:
    36
    Likes:
    50
    Illinois
    I have a similar problem in that the course of my disease changed over time and circumstances until it became permanent and severe with new symptoms developing over time. I think this type of information is important for them and I filled in comment sections as such whenever applicable. The more we can inform them about our life experiences the better. This is our chance to have our voices be heard. Doctors Chu and Jason are some of our strongest and most knowledgeable advocates. I'm glad they are on our side and grateful for their work on our behalf.
     
    leela likes this.
  8. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,166
    Dr. Chu says to leave that question blank if you're from outside the US.
     
    Valentijn likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,859
    Likes:
    4,622
    Cornwall, UK
    I am struggling with some of the questions too and don't think I'll do it - it makes my brain hurt! For example, Question 7 asks whether you think you have ME or CFS, and then Question 8 asks whether you or a health professional diagnosed this. Well, I think I have ME, but this is rarely diagnosed in the UK, so my official diagnosis is CFS.

    I too had 'hints' of ME/CFS at various times of life from childhood onwards, although the year when it became full-blown was clear enough.

    Then there is the question about whether various symptoms are major or minor. I felt that I needed a graduated scale here, with some symptoms being intermediate between minor and major - say 'moderate'.
     
  10. Ember

    Ember Senior Member

    Messages:
    1,760
    Likes:
    1,872
    ME and CFS are different. They are diagnosed under different codes, and they have different case definitions:

    “According to the CDC ICD coding representative (July 2006), 'M.E. Has always been indexed to code 323.9. That is the code number that patients should be assigned.' Correctly diagnosing this disease benefits patients and health care providers by acknowledging the true prevalence of ME in the U.S.” (http://www.name-us.org/ICD%20Codes).

    "Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfil the criteria have ME; those who do not would remain in the more encompassing CFS classification” (http://www.hetalternatief.org/ICC primer 2012.pdf).
     
  11. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    I can understand people's frustrations in a filling in a questionnaire - any questionnaire - but I think it's worth keeping an eye on the big picture here, which is that the results of this questionnaire will be presented to the FDA workshop. This workshop is unprecedented and there'll be an audience of drug companies all wanting to know what symptoms are most important to us to tackle, what aspects of our daily function are most affected and so on, so that they and the FDA will know how to try to target therapies for us.

    The important questions on the questionnaire are those, not the ones about what diagnosis we've got or how long we've been sick and so on. If you object to those questions, perhaps you could just leave them blank if the questionnaire will let you, or just put the best answer you can.

    Totally understand the frustration but let's not waste this extraordinarily powerful opportunity to be heard! :)
     
    Nielk, Marianarchy and urbantravels like this.
  12. Ember

    Ember Senior Member

    Messages:
    1,760
    Likes:
    1,872
    Notice that there are two surveys that will collect data for presentation at the Workshop.
     
  13. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    What Sasha said. I don't think either of these questionnaires are the place to solve the ever-vexed question of ME vs. CFS vs. ME/CFS vs. CFS/ME vs. vs. vs. vs. The point here is that the FDA really needs to hear from us about how ill we are, how badly our lives have been impacted, and how adequate (or not) are the current treatments available to us. The bigger the data set, the better.

    It doesn't seem ideal that there are two surveys, and in a perfect world maybe those two efforts could have been combined, but whatever. I am happy to do both. I think people who feel strongly that they want to say something more detailed than the surveys allow should submit written testimony *in addition* to filling out the surveys.
     
    Sasha likes this.
  14. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    I agree - the CAA one took me about 18 mins, the Chu one a bit less. Not much time to spend on something that could gain us so much.

    Neither group could have guessed the other were on the case - just one of those things, and better two of them at it than none.
     
    Little Bluestem and Marianarchy like this.
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,129
    Likes:
    3,399
    N. California
    I'm glad you posted this survey. I hope people take the time to fill it out. Below are the first 2 paragraphs of the introduction to the survey. And here is the link again: http://kwiksurveys.com/app/rendersurvey.asp?sid=mnwykzr9g2ae1l5112627&refer=www.facebook.com

    "This survey is being conducted by Dr. Lily Chu and Dr. Leonard Jason's research team, not by the US Food and Drug Administration (FDA). The main purpose of this survey is to help answer questions the FDA has about ME and CFS symptoms, their impact on daily life, which treatments patients are using or have tried, and which treatments patients have felt to be effective. Your answers will help teach pharmaceutical companies about the symptoms/ severity of these illnesses while considering new medications for treatment. Dr. Chu will present the results of this survey at the April 25-26, 2014 FDA Drug Development Workshop for ME and CFS. We may also publish some of the information we gather in order to inform the wider medical/ scientific community of your experiences with this illness.

    Instead of asking you to type in answers to each of FDA's questions, this survey lets you choose specific answers to questions while allowing space for more comments. This may save you some time/ energy typing and also remind you to think about certain symptoms, their impact on your life, and certain treatments. It also allows us to compare your answers to others affected by ME or CFS. The information collected may be different from what you have sent (or plan to send) in to FDA so we encourage you to participate even if you have already participated in other ways. Survey responses are anonymous and will be kept confidential. "
     
  16. Hugocfs

    Hugocfs Senior Member

    Messages:
    110
    Likes:
    76
    U.S.A.
    I filled out a rather large CDC survey earlier this year and swore I would never fill out another survey again. Probably that accounts in large part for my bad attitude towards this survey. But when cfs/me patients like us have a hard time answering some basic preliminary questions, it makes me think that these researchers, though highly respected, really just don't get it. At least they could have passed the survey by some patients for some critical review. Maybe they did, but something seems amiss here to me.
     
  17. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    Hi hugo - I completely understand your frustration but apart from one or two questions I found the Chu survey easy to do. Maybe they did give it to some patients to review but unless you give a draft questionnaire to a lot of people you can't find all the problems that will come up and the most important thing about this survey is that it gets done. The workshop is only a month away now.

    I'm grateful to these researchers for trying to get our views about what's important to us about our symptoms and the difficulties we have with our inadequate medication, and for being willing to pass them on for us to the FDA. Let's give them as much help as we can. They're trying to help us.
     
  18. SpecialK82

    SpecialK82 Senior Member

    Messages:
    897
    Likes:
    475
    USA
    I think it's great that there is more than one survey. If we all fill out both surveys and also send in our own testimony then it just makes our numbers look bigger and that's all good with me.

    I agree with above comments that it is so critically important that we all give feedback as much as we possibly can.

    Let's make sure that the FDA is completely clear - the treatments that we have right now are completely inadequate for even relieving our symptoms much less hitting on anything that is curative!!
     
    Sasha likes this.

See more popular forum discussions.

Share This Page