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The MEAO and National ME/FM Action Network ask for your prompt participation in a short survey. Non-members, including non-Canadians are welcome. We encourage you to pass this survey on. All information will be confidential and results will be shown summarized by group). The survey will take less than 10 minutes to complete.

In this survey we focus on the awareness of ME (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome), FM (Fibromyalgia) and MCS (Multiple Chemical Sensitivities) by physicians.

Throughout this survey, the reference to “doctors” is meant as MDs from qualified medical schools.

Deadline for survey completion is Wed, March 9th. Our plan is to compile and present results on WWW.MEAO.CA and in our “Reaching Out” Newsletter in the spring. We would also like to have the results available for discussions with Government and the Medical association and for the May 12th activities. We are simultaneously investigating Canadian Medical Faculties Curricula with respect to the teaching objectives on ME/FM/MCS.

Many people with ME do not use internet. If you know of anyone who does not use internet and who would be interested in this survey, please let us or them know and we will arrange for a paper copy.

Please don’t worry if some questions don’t fit your individual situation perfectly. Choose the answer that best represents your experience and move on to next ones.

Please respond to survey only once. Any duplicate entries will be disqualified.

Thank You,

Ralf Pohlak, MEAO board-member, Reaching Out co-editor
survey@meao.ca

Lydia Neilson, CEO & founder, National ME/FM Action Network
mefmaction@ncf.ca

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* 1. Do you live in Canada; What Province? Please check one

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* 2. Are you a member of the MEAO

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* 3. Are you a member of the National ME/FM Action Network ?

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* 4. Have you been diagnosed with? Check all that are appropriate

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* 5. Who made the diagnosis?
For ME:

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* 6. Who made the diagnosis?
For FM:

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* 7. Who made the diagnosis?
For MCS:

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* 8. If you were diagnosed with ME, FM or MCS, did your doctor first rule out other illnesses?

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* 9. In your opinion, did getting a diagnosis of ME/FM/MCS contribute to a change in your quality of life?

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* 10. IF YES, indicate if

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* 11. Please indicate your current level of severity (0 to 10 functionality scale)?

  0 1 2 3 4 5 6 7 8 9 10
Good Day
Bad Day
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The FUNCTIONAL CAPACITY SCALE:
incorporates energy rating, symptom severity, and activity level.
Rest is defined as lying down, eyes shut, meditating or sleeping.

0 = No energy, severe symptoms including very poor concentration; bed ridden all day; cannot do self-care (e.g. need bed bath to be given).
1 = Severe symptoms at rest, including very poor concentration; in bed most of the day; need assistance with self-care activities (bathing).
2 = Severe symptoms at rest, including poor concentration; frequent rests or naps; need some assistance with limited self-care activities (can wash face at the sink) and need rest afterwards for severe post exertional fatigue.
3 = Moderate symptoms at rest, including poor concentration; need frequent rests or naps; can do independent self-care (can wash standing at the sink for a few minutes) but have severe post exertion fatigue and need rest.
4 = Moderate symptoms at rest, including some difficulty concentrating; need frequent rests throughout the day; can do independent self-care (can take a shower) and limited activities of daily living (e.g. light housework, laundry); can walk for a few minutes per day.
5 = Mild symptoms at rest with fairly good concentration for short periods (15 minutes); need a.m. and p.m. rest; can do independent self-care and moderate activities of daily living, but have slight post exertion fatigue; can walk 10-20 minutes per day.
6 = Mild or no symptoms at rest with fairly good concentration for up to 45 minutes, cannot multitask; need afternoon rest; can do most activities of daily living except vacuuming; can walk 20-30 minutes per day; can do volunteer work – maximum total time 4 hours per week, with flexible hours.
7 = Mild or no symptoms at arrest with good concentration for up to ½ day; can do more intense activities of daily living (e.g. grocery shopping, vacuuming) but may get post exertion fatigue if ‘overdo’: can walk 30 minutes per day; can work limited hours, less than 25 hours per week; no or minimal social life.
8 = Mild intermittent symptoms with good concentration; can do full self-care, work 40 hours per week, enjoy a social life, do moderate vigorous exercise three times per week.
9 = No symptoms with very good concentration, full work and social life; can do vigorous exercise three to five times a week.
10 = No symptoms, excellent concentration, over achiever (sometimes may require less sleep than average person).


Dr. Alison Bested ©
Dr. Lynn Marshall
Environmental Health Clinic, Women's College Hospital, Toronto, ON

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* 12. Please indicate your average level of severity since onset (0 to 10 functionality scale)?

  0 1 2 3 4 5 6 7 8 9 10
Good Day
Bad Day

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* 13. Please indicate level of severity at time of diagnosis (0 to 10 functionality scale)?

  0 1 2 3 4 5 6 7 8 9 10
Good Day
Bad Day

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* 14. Please answer the following questions with the 4 digit year. (e.g. 2011).

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* 15. Number of doctors you saw before your diagnosis was made?

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* 16. Please indicate on a scale of 1 to 5 whether you agree with the following statement about the doctors you have seen for your illness. (1=don’t agree at all, 2=don’t agree, 3=neither agree or disagree, 4=agree, 5=agree very much)

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* 17. Are there any symptoms that your doctor(s) have refused to treat?

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* 18. Please describe the impact of delay in diagnosis(of ME/FM/MCS), if any, on your life: (optional - open ended)

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* 19. Please estimate your present financial status Recent “Poverty lines” are published by Canadian Council on Social Development: http://www.ccsd.ca/factsheets/economic_security/poverty/lico_06.htm

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* 20. Has illness impacted on your relationships?

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* 21. Comments on survey questions (optional)?
(Or write email directly to survey@meao.ca )

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* 22. Future Survey

  1 (High) 2 3 (Limited) 4 5 (Never)
What is you interest in doing future surveys?

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* 23. (optional) Contact info for future surveys (if not member of MEAO or National ME/FM Action Network)

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