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Student Project: Medical Questionnaire, Volunteers are STILL Needed

Discussion in 'General ME/CFS News' started by linzi031088, Jan 2, 2010.

  1. linzi031088

    linzi031088 Guest

    Hi All,

    This study forms a large part of my course, in which it is necessary to carry out a study/project based in the area of medicine, and necessary to gather 200 participants, suffering from CFS, to answer a questionnaire. The names and addresses of participants is not going to be asked for, however, there will be an option to state which County you live in, as this can give me a better indication of services for CFS in your area. All data protection acts apply and no personal information will be disclosed.

    The study will look into areas such as the classification of CFS, debating the Royal College of General Practitioners mental health guidelines in which they classified CFS as mental health disorder in 2007/8 only to revoke it the same year. The study will examine patients views on this mental health classification vs a physical origin for CFS, such as the XMRV virus.

    I will also be looking at effective treatments, such as cognitive behavioural therapy vs traditional drug treatments etc.


    If you have any questions or would like to participate, please send me a private message and include your email address so I may send you a copy of the questionnaire to complete.

    Many Kind Regards

    Linzi.

    It may be a point of reassurance to know that permission has be granted to post this thread by the moderater of this site.
  2. _Kim_

    _Kim_ Guest

    Hi Linzi,

    Welcome to the forums. I've got a couple of questions.

    Are you looking for participants only from the U.K.? This isn't clear in your post.

    Before I would participate in something like this, I would want to know the discipline that your are framing this research within. Is this project for a medical school class? A psychology or sociology class?

    And to put it sweetly, are you one of the 'good guys'? How would your project potentially help the cause of ME/CFS?
  3. linzi031088

    linzi031088 Guest

    Hi All,

    Thank you for your questions. First of all, the study is NOT restricted to the UK and ANYONE can participate.

    I am a ME suffer myself, for the past 11 years. The questionnaire is entirely patient based and is being undertaken specifically for the purpose of determining patients views into western medicine help (i.e. to evaluate how ME patients feel their condition is treated, if such medicine offered helps, etc.)

    The answers coming back from the questionnaire vary, with some individuals believing western medicine to be the cure to their illness, while others find it has made no difference or made it worse. The practical intentions is to interpret whether under the current guidelines, how patients feel their condition is interpreted, as there if research from every angle to support and deny ME is a Physical/Mental condition. As a result, this has a knock on effect onto benefits and treatments offered etc.

    The course I am currently doing is a 1 year course for mature students , before entering Medical School.

    If you have any other questions, please don't hesitate to contact me. :)
  4. _Kim_

    _Kim_ Guest

    Thanks Linzi,

    Best of luck to you during this course and onward to Medical School.

    Kim
  5. linzi031088

    linzi031088 Guest

    Thank you to all agreeing to take part so far. Your participation is very much appreciated. :)
  6. Alesh

    Alesh Senior Member

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    What is "western medicine"? Is there also an "eastern medicine"? "Northern medicine"? "Equatorial medicine"? "Bermuda Triangle medicine"?
  7. Advocate

    Advocate Senior Member

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    Hi Linzi,

    Is this a questionnaire that you have devised? Your teacher? Is it a standard questionnaire used in other studies?

    I ask because in many questionnaires the authors assume that fatigue is psychogenic.
  8. Samuel

    Samuel Bedbound with NO DOCTOR

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    Selection bias looms. Those who are aware will shy away from the quiz, and those who are not will be more willing to try it.
  9. Martlet

    Martlet Senior Member

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    I like to think that I am aware, but I am happy to participate. For starters, Linzi's post has Cort's approval and secondly, she cannot continue her study unless people sign up. Have pm'd you, Linzi.
  10. That cracked me up, Alesh.

    Sorry, linzi

    I have to pass on any survey per CFIDS/ME/WTEver particularly when I do not know who designed the study, who sponsors it, to what purposes it will be applied, and what is in it for me. I need to know who FUNDS the research. I need names of all universities, agencies and governments involved directly or indirectly or potentially, and I need names of physicians and researchers directly or indirectly or potentially involved.

    I am already the victim of Bermuda Triangle Medicine in which my illness was 'disappeared'. And am not about to be pirated a second time.

    I hope you do not take this personally. And if not now, I hope that one day you come to understand what is at stake here and why you may get many responses such as mine.
  11. muffin

    muffin Senior Member

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    I too have reservations on any survey about CFIDS because I know that it can and has been used against us terribly sick people. We are made to look like nuts and this causes us further damage. That said, I would like to help you get your coursework done. But we all need assurances that our personal informatoin will NOT be sold or used in any way (except validation from your school, if need be).

    We all are suspicious of any surveys, etc. as they really have been used against us - the data twisted and then we are abused again. Additionally, I do NOT mean to be cruel, but, if you do have CFIDS/ME how can you do a grueling Medical School stint? I hate to ask that question, but CFIDS/ME people are so terribly sick that we can barely make it out the door to the supermarket or the doctor. There have been times that I can only sleep days and days on end. So Medical School? How?
    Please forgive my seemingly "nasty" comments and questions. It is not for me to stand in judgment of anyone else. But you understand how we CFIDS/ME people have been damaged over the years.
    I'm hoping that you made a rare remarkable recovery from CFIDS/ME and that is why you can attend school.
    How many surveys do you have now? Do you have enough? Can you publish it on this website for us to view? More information please so that we can help you if possible.
  12. klutzo

    klutzo Senior Member

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    I have one "neutral" question and one "nasty" one:

    1. Do you only accept those with a formal CFS diagnosis from a conventional medical doctor? It has always been assumed that I have CFS, since I meet the diagnostic criteria, but there are no Infectious Disease doctors within range of where I live, and my only formal diagnoses are Fibromyalgia and Lyme Disease. I would gladly participate, but I don't want to skew your research. I would think you would need a pretty tight definition of who is to be included in this study for your results to be considered valid by your Professor.

    2. I can't help but be suspicious that you are really a pre-Med student, when your grammar and sentence structure are so atrocious that you could not have passed first semester freshman English at the University I attended. Sorry, but like many here, I am suspicious from the way we've been treated over time, and this is a glaring red flag to me. If there is a rational explanation for this, I am all ears.

    klutzo
  13. Koan

    Koan Be the change.

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    Klutzo,

    I just wanted to say that, due to cognitive issues shared by many with ME, my grammar and sentence structure sometimes boarders on the bizarre and at other times it just tips right over.

    ETA The above being a case in point!
  14. _Kim_

    _Kim_ Guest

    muffin, there are degrees of CFS. There have been several personal stories that members here have shared about how they finished school, got advanced degrees, etc.

    Until I was whopped with a relapse in September, I was on the Med. School track. Much like Linzi, I was returning as an adult student and was doing quite well in my studies. If I can heal enough through the various protocols that I am on, I plan to resume my course.

    Linzi's initial request did warrant some further questions, which she has been answering.

    It is not our place to question anyone's diagnosis here. No matter how ambitious their dreams. No matter how able they are.

    In fact, we should be encouraging those that have mild CFS and the interest in research and medicine to pursue it. We sure could use more doctors and researchers who understand the illness in the way that only a patient could know.
  15. _Kim_

    _Kim_ Guest

    Was 'atrocious' really necessary or even accurate? Being suspicious is fine, but criticizing Linzi's grammar and sentence structure is not.
  16. klutzo

    klutzo Senior Member

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    Dear Koan (and ETA for Kim),
    I agree with your comment in the case of most of us here, but I know of no college Professor who would give you an exception due to that problem. You must be able to write a paper properly and type it without tons of typos to pass a class, let alone get a good grade, and only those with the top grades get into Medical School. You are not claiming to be a candidate for Medical School, or is there something you're not telling us (grin)?

    I know someone who did not get into Medical School simply because he could not complete the MCAT test in the time allowed due to his dyslexia. Doctors have to act fast and think on their feet. They have to read charts fast and write fast. No exceptions. Doctors hold people's lives in their hands, and cognitive problems that severe are not something they look for in a future doctor!

    Sorry to sound harsh, but not everyone can be everything. We all come into this world with strengths and weaknesses, and only suffer when we keep trying to stuff a square peg in a round hole. Would you want a blind pilot on your next flight? I am not without compassion if cognitive problems are the reason for the disjointed posting style of this author. It is truly sad how this illness limits people. I feel my own brain is being wasted, or what is left of it.

    I went through this in my own life. I desperately wanted to be a researcher in psychoneuroimmunology, and personality testing showed scientific research to be the best career match for me, but the one area I am not good at is advanced mathematics, so I had to face facts. As much as I love science, the higher you go, the more math there is, and I was not up to the task. I could ace any other course with my hands tied behind my back, but I could not understand abstract math at all. It is like there is a piece missing in my brain. The counselor told me I had a genius IQ in every area but math, where I was only above average. If I am above average, then God help the merely average, because I am a math moron!

    I don't mean to sound like I don't care about the poster.....it's just the opposite.....I hate to see people's hopes crushed, and I have an extremely realistic personality type, so that is just how I see things. Anyone is welcome to take it or leave it. That's okay by me.

    Regards,

    klutzo

    P.S. To Kim - Okay, I sincerely apologize for my choice of words, which I now see was too harsh. Remember that song called "Cruel To Be Kind"? It did not come across in my post, obviously, but I was trying to be kind and realistic at the same time. Did you go to a University? Would that have been acceptable even in a freshman class, or do I live on another planet from the rest of you? Am I so much older than the rest of you that standards for writing have been dumbed down that low? I honestly don't know, and am asking the question here in all sincerity. I would hate to see anyone with this illness do a lot of hard work, maybe relapse in the process, then hand it all in and end up with a failing grade anyway. I know how I would feel in that case and it would cause a relapse if I had not had one already. We don't have kids, so if it is acceptable in college now to write this way, then my whole post is irrelevant and I will be glad to have it deleted. I truly do not know.
    Am I being clear now, or am I still coming off like a hard a**? That is the problem with writing;the emotional tone cannot be transmitted along with the text. I feel truly bad if I hurt her feelings and she is legit. I should have used the word suspicious and left it at that....you are correct it would have been a better choice.
    How about just deleting my original post and this one along with it. I hope she sees my apology before you delete it. Today's lack of writing and speaking skills are a hot button with me, but I had no right to project that onto others.
  17. gracenote

    gracenote All shall be well . . .

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    we still have the potential to dream

    I just want to add my thoughts. I've been in college in one form or another for the past (I hate to put down this number) 16 years. I started back to college at age 40. I had the equivalent of two years of coursework to do before getting my BA. It took me 6 years, numerous Incompletes that had to be made up during the summer, and THAT'S ALL I DID. I pretty much never left the house other than for classes and doctor appointments and groceries. I had excellent supportive services, but it was HARD due to physical and cognitive issues.

    Then I got the bright idea to attend graduate school. (Don't you just love it that we still have the potential to dream?) I began a Portfolio MA program which meant I got to be self-directed and create most of my classes, a lot done at home in 2001. I am still trying to complete the final requirements. My original plan was (and oh how much I wish I could even pretend that I could one day maybe try it) was to finish my MA and get into a PhD program. Ha!

    I have been in research classes myself, and at one point had wondered about using an online survey of people with ME/CFS similar to this one. This can be a valid form of research as long as it is made clear how the information was gathered.

    I think the questions are good and necessary, but I'm a little uncomfortable with what sounds like attack on a fellow PWC.
  18. Koan

    Koan Be the change.

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    Klutzo,

    There is little point in you and I getting into a long debate about this. An inordinate number of my friends and family are doc.s and, were it ethical to do so, I would quote here some of their emails. An equally inordinate number of my friends and family are published writers and some of their emails would make equally amusing reading in terms of awkwardness, typos, spelling, etc.

    We are not discussing a paper, we are discussing a post. I don't participate in anything I do not fully understand so I will not be taking part. However, I can make no judgments about the fitness of this poster to attend med. school based on a post.
  19. klutzo

    klutzo Senior Member

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    I was not making a judgment; that is an assumption. I was merely asking a question, but I've learned my lesson about doing that now, and my face is stinging from the coldness.

    The more I thought about it, the more I felt the objection was illogical, so I asked my husband, to be sure it wasn't just me, and he agrees with me that he would much rather have his grammar criticized than his motivations. He agrees with me that the word "suspicious" is MUCH more hurtful than grammar correction, yet everyone here feels the word "suspicious" is okay. I welcome having my grammar corrected and don't take it personally. I want to be corrected. I was trying to go along to get along, but apparently no amount of apology was acceptable enough to make up for not thinking like everyone else.

    So, I won't post on this thread anymore, so I don't upset your peace. Out.

    klutzo
  20. _Kim_

    _Kim_ Guest

    klutzo, there are exceptions! These days there are many ways to practice medicine. There is a new model of medical practice that's emerging called a Micropractice. This is the type of physiatry practice that I am dreaming of. And it wouldn't require any of the fast paced chart reading and fast writing.

    Apology accepted :Retro smile:. I did see that you were trying to paint a realistic picture of what you saw as a doomed attempt to follow a dream. Education is never a mistake. Even if Linzi or I don't ever become doctors, we will have learned a good deal.

    I started college in the fall of 2008 at age 42. I aced the freshman writing course, but there were many many who failed. I know lots of professors and all of them tell me the exact same thing: writing skills among today's college student are 'atrocious' <--- just ribbin' ya ;)

    One of my professor friends (history) has said that he no longer asks for students to write papers, because the results are so inferior. It's way too much work for him to wade through such poor products and to have to correct the grammar, etc. Instead, he gives pointed assignments where they answer specific questions.

    I know you didn't mean your words to be hurtful. I actually think that Linzi would get some value out of your responses. If she is to do CFS research, she needs to be aware of how suspicious the patient population will be.

    It would also give her a chance to reflect on her choices. I am putting myself in her shoes and when I read your warning statements, it just fired me up ever more to get well and move onward and upward in the pursuit of my dreams.

    Also, it'll give me the chance to say:

    Hey Linzi - if you need someone to proof-read your paper before you turn it in, I'd be happy to give it my editor's eye for grammar/sentence structure errors. I do this for several of my international researcher friends who publish in English, yet it is not their primary spoken language.

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