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New Survey on CFS Risk Factors

Discussion in 'General ME/CFS News' started by jspotila, Jun 3, 2010.

  1. jspotila

    jspotila Senior Member

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    The CFIDS Association is taking a new survey about risk factors in CFS. All responses are anonymous and results will be reported in the aggregate only. Share information in this 48-item survey about factors that might have contributed to the onset of your illness. (It moves pretty fast, so don't be intimidated by the number of questions!) Only one response per computer. This survey will close on July 16, 2010.

    https://www.surveymonkey.com/s/RiskFactors
  2. gracenote

    gracenote All shall be well . . .

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    I'd like to know more about the questions the survey asks before I start. It won't let me past the first page until I fill it out, and I don't want to fill it out until I know the kinds of questions on the rest of the survey. Is there any way to see the questions ahead of time?
  3. dancer

    dancer Senior Member

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    gracenote,
    I just took the survey, and there were questions about water damage in the home you live in (looking at possible mold connections?), how the home is heated, what the water source is, pets of various kinds and their health, health of family members....
    my memory is so poor, it's already all fading...
    but it was quick and easy.
  4. richvank

    richvank Senior Member

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    Hi, jspotila and the group.

    This sounds like a pretty comprehensive questionnaire, though I haven't seen it all. I'm glad the CFIDS Assn is doing this survey.

    In 2004, I reviewed the available risk factor studies for CFS, and was able to conclude that all of the risk factors that were reported to be common were stressors known to place demands on glutathione. It will be interesting to see if this survey comes out that way, too. Here are some pages from my 2004 AACFS poster paper that summarized the risk factors from the studies up to that time. The full paper, with references, can be found at www.cfsresearch.org


    "IN THE GENERAL POPULATION, WHAT FACTORS OR CONDITIONS ARE KNOWN TO CAUSE DECREASES IN INTRACELLULAR GLUTATHIONE CONCENTRATIONS?

    These factors and conditions can be divided into three groups:

    • The first group is made up of those that (1) lower the rate of GSH synthesis or the rate of reduction of GSSG to GSH, or (2) raise the rate of export of GSH from cells, or (3) lead to loss of GSH from the scavenging pathway. This group includes the following: genetic defects [15], elevated adrenaline secretion [16-20] due to various types of stress, deficient diet [1] or fasting [21], surgical trauma [21,22], burns [23], and morphine [24].

    • The second group is comprised of toxins that conjugate GSH and remove it from the body [25], such as organophosphate pesticides, halogenated solvents, tung oil (used on furniture), acetaminophen and some types of inhalation anesthesia.

    • The third group is comprised of conditions that raise the production rates of reactive oxygen species high enough to produce oxidative stress, causing cells to export GSSG. These include strenuous or extended exercise [26], infections (producing leukocyte activation) [21], toxins that produce oxidizing free radicals during Phase I detoxication by cytochrome P450 enzymes [21], ionizing radiation [27], iron overload [28], and ischemia--reperfusion events (such as stroke, cardiac arrest, subarachnoid hemorrhage, and head trauma) [29].



    STRESS, DISTRESS, AND STRESSORS

    • For purposes of this presentation, stressors are defined in the broad sense as events, circumstances or conditions that place demands on a person and tend to move his or her body out of allostatic balance. Allostasis is similar to homeostasis, but allows for changes in the set-point over time to match life circumstances [30]. Stressors can be classified as physical, chemical, biological, or psychological/emotional.

    • Stress is the state that results from the presentation of such demands. Selye [31] defined stress as "the state manifested by a specific syndrome which consists of all the nonspecifically-induced changes within a biologic system." Although Selye emphasized the nonspecifically-induced responses, the body also exhibits specific responses that depend on the type of stress [32].

    • Stress can be of a beneficial or a destructive nature. Distress is the destructive type of stress [31].

    • The perceived stress that people experience depends not only on the stressors to which they are subjected, but also on "their appraisals of the situation and cognitive and emotional responses to it." [33]

    • A person's history of both the occurrence of stressors and of the degree of perceived stress can be evaluated by structured interviews, and this has been done in a number of studies of CFS risk factors [34-45].



    IS THERE EVIDENCE FOR HIGHER OCCURRENCE OF STRESSORS IN CFS PATIENTS PRIOR TO ONSET THAN IN HEALTHY NORMAL CONTROLS?

    YES. The types of stressors found to have higher occurrence in one or more CFS risk factor studies [34-45] include the following:
    • Physical: Aerobic exercise (especially of long duration), physical trauma (especially motor vehicle accidents) and surgery (including anesthesia).
    • Chemical: Exposure to toxins such as organophosphate pesticides, solvents and ciguatoxin.
    • Biological: Infections, immunizations, blood transfusions, insect bites, allergic reactions, and eating or sleeping less.
    • Emotional/Psychological:
    Stressful life events, including death of a spouse, close family member or close friend; recent marriage; troubled or failing marriage, separation, or divorce; serious illness in immediate family; job loss, starting new job, or increased responsibility at work; and residential move.
    Difficulties, including ongoing problems with relationships, persistent work problems or financial problems, mental or physical violence, overwork, extreme sustained activity, or "busyness."
    Dilemmas "A dilemma is a situation in which a person is challenged to choose between two equally undesirable alternatives."[45] Choosing inaction in response to a dilemma leads to further negative consequences.
    Problems in childhood, including significant depression or anxiety, alcohol or other drug abuse, and/or physical violence in parents or other close family members; physical, sexual or verbal abuse, low self-esteem and chronic tension or fighting in the family.

    IS THERE EVIDENCE FOR HIGHER PERCEIVED STRESS IN CFS PATIENTS PRIOR TO ONSET, COMPARED TO HEALTHY CONTROLS?

    YES. Three studies [34, 37, 38] found that CFS patients rated their level of perceived stress prior to onset higher than did healthy, normal controls for a similar period of time.


    IS IT SURPRISING THAT GLUTATHIONE BECAME DEPLETED IN MANY CFS PATIENTS?

    NO. In view of the strong correspondence between the results of the CFS risk factor studies and the known GSH depletors, it is not surprising. It appears that the CFS patients who were studied had undergone a variety of factors and conditions that are known to deplete glutathione, and had also experienced high levels of perceived stress as a result."

    Best regards,

    Rich
  5. kit

    kit

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    Gracenote, here are the questions from the CFIDS survey to assess "risk factors" for CFS:

    1. Do you have chronic fatigue syndrome? Choose the answer that best fits your situation.

    2. What is your gender?

    3. What is your current age?

    4. What is your date of birth?

    5. What is your approximate height?

    6. What is your approximate weight?

    7. Were you born in the United States?

    8. What race do you consider yourself to be?

    9. Where do you live currently?

    City/Town:

    State/Province:

    ZIP/Postal Code:

    Country:

    10. How long have you lived in this city/town?

    11. If less than one year in this city/town, where did you live immediately prior to this? (Skip if it does not apply.)

    City/Town:

    State/Province:

    ZIP/Postal Code:

    Country:

    12. Where were you living when you became ill with CFS? (If onset was gradual, when your pattern of poorer health began)

    13. Are you pregnant or currently lactating?

    14. Have you had a baby in the last three months?

    15. What is your current marital status?

    16. What is the highest grade level you have completed or degree you have received?

    17. What is your current employment situation? (Choose the answer that best describes it)

    18. Including yourself, how many people (related or not) are living in or staying at your residence?

    19. Is anyone else in your household ill with CFS?

    20. Is anyone else in your household sick with a chronic illness other than CFS?

    21. Do any of your closely related family members have CFS or another chronic condition? (Check all that apply)

    22. Do you consume unpasteurized dairy products (milk, cheeses, etc.)?

    23. Do you drink alcoholic beverages?

    24. How many alcoholic beverages do you drink on average per day?

    25. How many alcoholic beverages do you drink on average per week?

    26. Do youu smoke cigarettes?

    27. What type of dwelling do you live in?

    28. Is this property actively used as a farm or ranch?

    29. What is the approximate age of the dwelling?

    30. When did you start living there?

    31. Is there a garage attached to the dwelling?

    32. Are automobiles, vans, trucks, or other motor vehicles parked in the attached garage?

    33. Are any gasoline powered devices stored in any room, basement or attached garage in this dwelling?

    34. During the past 12 months, has there been water or dampness in your home from broken pipes, leaks, heavy rain or floods?

    35. Does your home frequently have a mildew odor or musty smell?

    36. Is air conditioning (refrigeration) used to cool your home?

    37. Which fuels are used for heating this dwelling? (Mark all that apply)

    38. Does this dwelling have a central heating system with ducts that blow air into most rooms?

    39. In the last 12 months, did any dogs, cats or other small furry animals such as rabbits, guinea pigs or hamsters, or birds live or spend time in your home?

    40. What kind of pet(s)? Check all that apply:

    41. Were any of the pets allowed to go outdoors?

    42. Do (or did) your pets appear generally healthy to you, aside from typical problems associated with age, etc.?

    43. What is the primary source of drinking water at your home?

    44. Have you ever received a blood transfusion?

    45. Have you ever donated blood or blood products (ex., plasma)?

    46. How many times have you donated blood or blood products in the past 12 months?

    47. How many times have you donated blood or blood products in the past 10 years?

    48. How many times have you donated blood or blood products since being diagnosed with CFS?
  6. gracenote

    gracenote All shall be well . . .

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    Thank you, kit. Much appreciated.
  7. ahimsa

    ahimsa Senior Member

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    Thanks for transcribing the questions, Kit! I took the survey and the two questions above confused me. Did they mean to say "In the 12 months before you got sick" instead of "In the last 12 months"?

    Many of us have been sick for years! (20 years for me) If they are asking about risk factors then these questions should be related to what was going on at the time of illness onset, right? I don't get why it matters what happened "in the last 12 months" unless there were also followup questions about symptoms being better/worse/same during that time period.

    So, help me out, what am I missing? :confused:

    Marjorie
  8. HopingSince88

    HopingSince88 Senior Member

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    What are the answer selections for #1 - Do You Have CFS?
    How does one answer that question?
    Do they only want folks that have been officially diagnosed by a doctor?
  9. beesknees

    beesknees Senior Member

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    I wondered the same thing. apparently so did alot of people on Facebook. Here was the CAA's reply. The CFIDS Association of America Thanks for the feedback on the survey. More than 125 people have completed it already! Questions on the first page are required to be answered before you can move to the next page. We added more comment space to question 12 about the residence where you lived when you became ill. We'll keep other suggestions for future surveys. It's hard to include everything and keep it to a size that doesn't scare people off!
  10. shiso

    shiso Senior Member

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    I found many of the questions in the #27 through 43 range confusing if the goal of the survey is to assess risk factors for the same reasons ahimsa pointed out above...

    I interpret "risk factors" as factors for a person who does not currently have CFS getting CFS, so I would think the questions would ask about dwelling conditions, alcohol and smoking habits, interactions with pets, etc. at the time of onset, instead of at the present time/in the past year.

    My answers to these questions would have been different if the questions asked about time of onset as opposed to present time/past year (e.g., I used to drink alcohol at time of onset but I can no longer tolerate it; I lived in a different/better quality home when I got sick as opposed to now (I had to move due to disability/inability to afford); I did not have a pet at the time of onset but I now spend some time with a neighbor's dog, who I wouldn't have met had I not moved due to disability, etc.)

    Just offering my impressions from taking the survey - my understanding of "risk factors" may be off-kilter with the data the survey is seeking...

    Otherwise, the survey itself was easy to take (easy on the eyes, simple language, simple multiple choice questions, anonymous). Thanks.
  11. Angela Kennedy

    Angela Kennedy *****

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    I think the issues raised here shiso are very important.

    Also- for Rich, the problem with 'psycho-social stress' is that this is a ubiquitous phenomenon. Just because people are reporting retrospectively that they had stress at time of onset- in the words of Eliot Slater, it doesn't mean very much. On top of that- self- reporting retrospectively of stress is unreliable when one takes into account learned responses from ME discourse etc.

    Trying to elucidate exactly (and specifically) what kind of 'stress' causes specific dysfunction in a population which includes massive cardiac, neurological, endocrine, immunological, mitochondrial dysfunction (A Canadian cohort, say) is likely impossible at this time, and may never be possible.

    this ties into the Selye theory- scientists are certainly not elucidating specific 'psycho-social' 'stress' for Canadian cohort patterns of illness at this time. They may never- especially because of all the other theoretical and methodological problems present in 'stress' claims.

    I think scientists have to be very careful when they claim in any way 'psycho-social' stress is a 'risk' factor. Currently not happening.

    Next - what star sign were you at time of onset (lol!)
  12. awol

    awol *****

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    I just did the survey -

    i didn't think it was very complete. If is supposed to look at risk factors, it left out a lot of those that have been proposed. I also found it weird that it did not ask how long you have been ill.

    - Left out vaccines
    - Left out CDC's theory of childhood abuse (would have loved to enter an emphatic no there)
    - Left out non-home exposures
  13. Min

    Min Senior Member

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    I don't know why they are only interested in our present homes; I've been ill 23 years and have moved several times.
  14. Mithriel

    Mithriel Senior Member

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    Maybe jspotila could help us with this.

    I started doing it, but gave up because what relevance could my answers about my weight and living circumstances now have on whether I developed the disease forty two years ago?

    Maybe she could explain or maybe they could change the survey. If they don't it will be another one of the wasted efforts that litter the world of ME/CFS "research"

    I stopped at the weight section because after all these ears of being unable to exercise I am over weight, but I wasn't when this started. They could easily conclude that obesity is a risk factor and so agree with the CDCs rubbishy work.

    Mithriel
  15. Jenny

    Jenny Senior Member

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    I agree - the survey seems very odd. What a missed opportunity!

    Jenny
  16. HopingSince88

    HopingSince88 Senior Member

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    Mithriel,
    I am in the same boat as you. Was thin and healthy at time of onset 22 years ago. Now overweight from inactivity. I had read through the survey questions and decided it was not a good survey, so did not even attempt it.

    At onset was living in an old house with husband, 3 kids, 2 dogs a cat and a variety of fish, in a suburban home next to a woodland. Now I live alone in a rural setting in a newer house.

    Hoping...
  17. Angela Kennedy

    Angela Kennedy *****

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    Are they REALLY asking for people's responses from NOW, NOT at onset?

    Unbelievable. It was worrying enough to think they would be asking for any retrospective reports on any psycho-social stressors. But to look at situations AFTER the event/prolonged condition? This data could lead to EXACTLY the same methodological flaws and fallacious reasoning that is present in most psychiatric research on ME/CFS.

    I can't access this survey as not a sufferer.
  18. jspotila

    jspotila Senior Member

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    Here is additional information posted on the Association's Facebook page about the survey:
    I will share additional information when it becomes available. Most staff and Board members are in transit today (although I'm not!).
  19. creekfeet

    creekfeet Sockfeet

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    At first glance I was excited to participate in a survey but on seeing that it gathers information about the current situation instead of the situation at onset, I don't see how that will be of value. Also it seems to me if the purpose is to support funding applications that the most vital funding right now relates to XMRV and finding out in as timely as possible a manner whether it causes illness or not. If it does cause illness then other factors are of interest as possible triggers but ... and here my brain goes clunk.
  20. richvank

    richvank Senior Member

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    Hi, Angela.

    Thank you for your comments. I agree that it is very difficult to quantify what I call psychological/emotional stress that occurred prior to the onset of a case of CFS. It's actually also difficult to quantify other types of stress (physical, chemical or biological). I have taken a certain amount of flak from some people over the past few years for even suggesting that stress, and particularly psychological/emotional stress, is a factor in the etiology of CFS. However, I've received detailed histories from a lot of people who have CFS, and I've studied the published risk factor papers, and I'm convinced that various stressors do play important roles in causing onset of cases of CFS. I listen to the people who have this disorder, and I take what they tell me seriously. True, this is a collection of anecdotal reports, but it gets to be a rather large collection, and over time I think it's valid to draw impressions from the general features of these reports that appear over and over.

    Can I apply some sort of rigorous statistical analysis to this? No. But is this type of information valid to the degree that one can confidently base hypotheses for etiology and pathogenesis on it? I believe it is, and I'm not sure there is another way to do it for a disorder like CFS. Stress is an inherently difficult thing to quantify and analyze, but it's very real.

    The CFS population is very heterogeneous. For some people, psychological/emotional stress doesn't appear to have been a significant factor, and those people seem to be the ones who become the most incensed if this subject is raised. I think it is a human tendency to start one's thinking from one's own experience, and that is normally a good place to start. But if a person is not able to go beyond this and entertain the possibility that everyone's experience is not the same as their own, I think their ability to get a complete picture of what is going on will be limited.

    For other people who have CFS, pychological/emotional stress appears to have been a very important contributor, and after this topic has come up on a CFS board, they often write to me in private emails to tell me that, because they don't want to be criticized on the CFS boards for reporting that emotional stress seems to have been important in bringing about onset of their illness. I can't blame them for that, and I have appreciated what people have shared with me over the past few years.

    I understand the sensitivity of this issue. People with CFS have been and are too often accused of being psychiatric cases. I certainly do believe that CFS is an organic, physiological disorder, not a psychiatric condition at its basis. But the fact is that the brain and the body are intimately linked, and the nonspecific stress response system responds to all types of stress, whether physiological or emotional, by producing the same hormones and neurotransmitters: cortisol, epinephrine, and norepinephrine. And when this occurs excessively and over long time periods, it results in oxidative stress and depletion of glutathione. That goes on to produce significant biochemical changes, and the resulting illness is very physiological, regardless of what types of stressors originally brought it on. And having this illness certainly can affect a person's state of mind, such as by producing depression as a result of the loss that has occurred and the difficulty in maintaining hope that there will be a positive change. I think this is very understandable. But to conclude that depression is the root issue is just wrong.

    Best regards,

    Rich

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