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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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XMRV Positive? What are your symptoms/medical history?

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jan 14, 2010.

  1. cfs since 1998

    cfs since 1998 *****

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    Sounds good.

    Oh and I have a suggestion for a symptom question. We should ask about crimson crescents:
    http://www.immunesupport.com/93sum007.htm
     
  2. Advocate

    Advocate Senior Member

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    Hi CFS Since 1998,

    Do you know if the quicksurveys form that we are currently using to build a survey does allow people to complete the survey multiple times? I've wondered about that.

    Would the quicksurveys form enable someone to analyze the data easily?
     
  3. Advocate

    Advocate Senior Member

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    Kim, I LOVE the multiple choice answers.
     
  4. Countrygirl

    Countrygirl Senior Member

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  5. Advocate

    Advocate Senior Member

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    Hi Sushi,

    I'm behind on this string, so forgive me if you've already answered this, but is there a name for their method that we could use in the survey? (And just curious: how does the method work?)
     
  6. Advocate

    Advocate Senior Member

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    Hi Sushi. I should have waited!
     
  7. Countrygirl

    Countrygirl Senior Member

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    Hi Kim
    I haven't been able to use my computer during the day, and it's too late for me now, so will get back to this tomorrow morning. By that time, given the current rate of progress, it'll probably be done and dusted. It's a great piece of work. Well done everyone. :Sign Good Job:

    I just have to :In bed:

    See you tomorrow. :Retro smile:
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Advocate,

    They call it Direct Resonance Testing. See post 110 on pg 8 of this thread for a description.

    Thanks!
    Sushi
     
  9. Advocate

    Advocate Senior Member

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    Hi Dr. Yes,

    No, it's not a minor point! I think Dr. Bell's scale is the best one out there, but it's still not perfect, especially at the bottom end. There might be a way to solve this--such as inserting a 5 between the 0 and 10 (with apologies to Dr. Bell)--but want to think about it some more. Do you have any suggestions?
     
  10. Advocate

    Advocate Senior Member

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    Nicely said. We've all taken surveys that have disappointed us. Our group effort will surely produce an excellent survey.
     
  11. mezombie

    mezombie Senior Member

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    Dr. Yes & others: another useful functional scale

    I don't know how this thread got on the topic of functional scales, but since it is, I thought I'd add that it's important (IMHO) to consider cognitive as well as physical abililities. If this has already been mentioned, my apologies. There is no way I can read all the posts in this thread.

    Anyway, here's an example of two scales, one for physical function and one for cognitive:

    http://www.hfme.org/themeabilityscale.htm

    Dr. Yes, you'll see that these scales specifically break down Bell's scale into subcategories for the severely affected. You may find them useful.

    ETA: Oops! Never mind, I found the survey you all are working on.:ashamed: And it covers the cognitive problems very nicely. Good job! Well, I was only able to skim, but what I saw looked good!:tongue:
     
  12. Cloud

    Cloud Guest

    I think "trigger" would be important too.

    Also, regarding the posts on preventing multiple surveys from one person......Why would anyone do that?
     
  13. Kim, this is AMAZING.
    You are such an asset to this forum. Thank you.

    Do we need to add in having a virus as one of the trigger options?
    Can we add in "Post-viral Fatigue Syndrome" as one of the diagnoses? (My neurologist gave me that as a tentative diagnosis.)
    Finally a suggestion for one of the symptoms would be 'cold extremities' - I think this is related to POTS and is called Raynaud's phenomenon?

    Rachel xx
     
  14. _Kim_

    _Kim_ Guest

    The kwiksurveys allows the survey maker to import the data into Excel, but since we have no responses up there, I can't tell how well it's working or not. I don't think it's very sophisticated.

    Here are the options when you set up the survey.

    Allow Participants to:

    Take survey once
    Take survey once and return to edit survey
    Take survey many times

    I set it up so we can edit it - I know how our brains work. We need an edit option, I think.
     
  15. _Kim_

    _Kim_ Guest

    Thanks marie,

    I think you may have given us the solution to the Disability Scale issue. There are actually 3 Scales on The Hummingbird site - Physical ability, Cognitive ability, and Symptom severity. It looks like we can use the text verbatim.

    Any thoughts?
     
  16. julius

    julius Watchoo lookin' at?

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    how about a section for;

    Treatments I have found useful/effective

    maybe they can just type their answer, because a list of the possible treatments would be long.
     
  17. Countrygirl

    Countrygirl Senior Member

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    Hi Kim and everyone,

    After working through the survey again I have the following suggestions.

    I think we need to ask age of onset or the answers to the educational level question could be misleading

    Question about educational level:

    At what age did you become ill?

    What is your level of educational attainment: (1) GCSE (U.S. equivalent) (2) A level (U.S equivalent (3) degree (4) post-graduate degree.



    I am still concerned about the PAST questions. We cannot add more columns, I guess, but perhaps it could be refined by asking another question about the trend of symptoms to improve/worsen.

    For example: Have your immune/neurological/digestive/sensitivities/sleep/cogntive/cardiac problems worsened, improved or stayed the same over the course of the illness? This may help to tease out the nature of the evolution of the illness over time and possible stages.

    Also would it be helpful to say what time frame 'current' refers to' ? Given that the symptoms of this illness fluctuate, I think we do need to qualify the words 'current' and 'past' For example, up to very recently, I experienced severe breathlessness, but it has resolved itself, for the moment, since Christmas. It could re-occur at any time. So is this current or past? So many of our problems are cyclical, so I think we do need to define 'current' eg. Has it been a regular or prominent symptom in the last year?



    Would it be possible to be able to tick both current and past boxes? That way it would be possible to see whether a symptom is new. It would again give an indication of the evolution of the symptoms and whether the condition could be divided into stages.



    For Q.25 could rheumatoid arthritis be added? There have been suggestions that this could be caued by a retrovirus? Also hyper-reflexia because of its association with M.E. Dementia was also mentioned by Dr Bateman - I guess we can all tick that box to some level.



    There is another thought. Some of us have spent years with very low BP and POTS, but some have now developed high BP. This may be our genes kicking in, but it would be interesting to see how many of us have developed hypertension. Cheney said no more than 2%. Could we check that? eg. for 29 years I have had very low BP down to 60/40. Now, during the last months, it has rocketed to nearly230/120. So a hypertensive question somewhere, perhaps.....what do you think?



    I have drawn up a poll to test for transmission between genetic and non-genetic household members. After looking at the questions in the survey, I would just like to suggest a couple of things. Could there be a column added for non-related (non-spouse) household members? I have in mind au pairs, lodgers etc. I know of some who have developed the illness when staying in a home where one person has the condition. It might be useful to know. The time frame would be helpful, but it is getting rather long. Also, one thing that I believe is important, so that the results do not become scewed, is to ask the question 'Do you live alone?'


    One more, what about family pets who have developed the illness? My vet told me that my dog, she was sure, had developed M.E. from me. It was triggered by a vaccination - her third booster. I have since heard a documentary which claimed that a number of dogs develop such an illness after their third (and unnecessary) booster vaccination.



    Another stray thought...a number of us who were brought up in the 50s had contact with polio. I developed it in 1955 and suffered from muscle weakness ever after, although the paralysis was only temporary. This could be quite important to ask the over-50s if they had exposure to polio because of the similarities to post-polio syndrome.

    Phew! :thumbsup::hug: Sorry about the looong block of print:eek: :tear:
     
  18. Countrygirl

    Countrygirl Senior Member

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    Why has my post laid out as above???? Did I do something wrong?

    C.G.:ashamed::ashamed::worried:
     
  19. Countrygirl

    Countrygirl Senior Member

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    Huh??? :confused: :eek: :worried: It's changed again and I'm replying to myself. :worried::eek: Is someone tickering with the nuts and bolts???
     
  20. coxy

    coxy Senior Member

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    what about younger children who've developed ME/CFS, mine were both only 8yrs old, to young for gcse, A levels etcQUOTE=Countrygirl;37465]Hi Kim and everyone,

    After working through the survey again I have the following suggestions.

    I think we need to ask age of onset or the answers to the educational level question could be misleading

    Question about educational level:

    At what age did you become ill?

    What is your level of educational attainment: (1) GCSE (U.S. equivalent) (2) A level (U.S equivalent (3) degree (4) post-graduate degree.



    I am still concerned about the PAST questions. We cannot add more columns, I guess, but perhaps it could be refined by asking another question about the trend of symptoms to improve/worsen.

    For example: Have your immune/neurological/digestive/sensitivities/sleep/cogntive/cardiac problems worsened, improved or stayed the same over the course of the illness? This may help to tease out the nature of the evolution of the illness over time and possible stages.

    Also would it be helpful to say what time frame 'current' refers to' ? Given that the symptoms of this illness fluctuate, I think we do need to qualify the words 'current' and 'past' For example, up to very recently, I experienced severe breathlessness, but it has resolved itself, for the moment, since Christmas. It could re-occur at any time. So is this current or past? So many of our problems are cyclical, so I think we do need to define 'current' eg. Has it been a regular or prominent symptom in the last year?



    Would it be possible to be able to tick both current and past boxes? That way it would be possible to see whether a symptom is new. It would again give an indication of the evolution of the symptoms and whether the condition could be divided into stages.



    For Q.25 could rheumatoid arthritis be added? There has been suggestions that this could be caued by a retrovirus? Also hyper-reflexia because of its association with M.E. Dementia was also mentioned by Dr Bateman - I guess we can all tick that box to some level.



    There is another thought. Some of us have spent years with very low BP and POTS, but some have now developed high BP. This may be our genes kicking in, but it would be interesting to see how many of us have developed hypertension. Cheney said no more than 2%. Could we check that? eg. for 29 years I have had very low BP down to 60/40. Now, during the last months, it has rocketed to nearly230/120. So a hypertensive question somewhere, perhaps.....what do you think?



    I have drawn up a poll to test for transmission between genetic and non-genetic household members. After looking at the questions in the survey, I would just like to suggest a couple of things. Could there be a column added for non-related (non-spouse) household members? I have in mind au pairs, lodgers etc. I know of some who have developed the illness when staying in a home where one person has the condition. I might be useful to know. the time frame would be useful, but it is getting rather long. Also, one thing that I believe is important, so that the results do not become scewed, is to ask the question 'Do you live alone?'


    One more, what about family pets who have developed the illness? My vet told me that my dog, she was sure, had developed M.E. from me. It was triggered by a vaccination - her third booster. I have since heard a documentary which claimed that a number of dogs develop such an illness after their third (and unnecessary) booster vaccination.



    Another stray thought...a number of us who were brought up in the 50s had contact with polio. I developed it in 1955 and suffered from muscle weakness ever after, although the paralysis was only temporary. This could be quite important to ask the over-50s if they had exposure to polio because of the similarities to post-polio syndrome.

    Phew! :thumbsup::hug: Sorry about the looong block of print:eek: :tear:[/QUOTE]
     

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