Please help me learn more about what has helped you cope with, manage and recover from ME/CFS. I am interested in the things that we can do to get better and live happy and fulfilling lives. Most of what I write about is what I have learned from my experience, and from the many books I have read in my plight to recover. But I am aware that many people experience this condition in different ways and different people find different things helpful. I would like to gather as much information as possible to create a self-help resource that will have something for everyone.
Please tell me as much or as little as you want to about the following questions either by emailing me or leaving a comment on this blog. I’m asking for a lot of information which I know might be a bit overwhelming if you haven’t got much energy so please just answer what you feel you can. I totally appreciate any information you would like to give. You don’t have to answer every question, I’d like to hear about what helps you the most! If you email please let me know if you would be willing to hear from me with follow up questions. I will publish what I learn from this informal survey both on this blog and in the self-help book I am writing. Help me help others by sharing your positive experiences! Thank you so much for your time and energy!
Section 1. Your illness experience
1. Has you condition been diagnosed? By what kind of professional? As What?
2. How long did it take you to get a diagnosis?
3. How long have you had this condition?
4. Can you give me an estimate of how much your condition has improved if 0% is the worse that it got and 100% means complete recovery?
5. Do you consider your illness to be mild, moderate or severe? (Now? At its worst?)
Section 2. Information you were given about illness management
1. What information did you receive from health professionals about illness management? What kind of professional? Was it helpful? How long had you been ill when you were offered this advice?
2. How else did you find out about how to manage this illness? Books? Internet? Support groups? Complimentary/alternative health practitioners?
3. What is the most useful advice you’ve received about illness management?
Section 3. How you manage your illness
1. What sort of things do you do to manage the illness? How helpful are they?
2. What do you think is the most important factor contributing to improvements in your health?
3. What sort of things makes your illness worse? What sort of things do you find you have to avoid?
4. Do you find yourself oversensitive to light? Noise? Chemicals? Extremes of temperature? Anything else?
5. Do you have to take measures to improve your quality of sleep? What works best for you?
6. How important do you think it is to tackle problems with sleeping?
7. Do you think exercise is helpful for this condition? How do you exercise?
8. How important do you think a healthy diet is to improving your condition?
9. Do you take any supplements? What kind? What supplements do you think have been most useful?
10. Have you developed any food intolerances/ gut problems/ blood sugar problems since having this condition? How do you deal with these issues?
11. Have you had to make any changes to your diet? What changes? How much have they seemed to help?
12. Have you tried relaxation techniques/ meditation/ yoga/ tai chi? How useful were they? How often do you practise? How understanding of your condition is your teacher?
Section 4. Coping emotionally
1. Have you experienced Depression/ anxiety / emotional liability as a result of this illness? What has helped you cope with these?
2. Do you think you went through a grieving process for your old life? Do you have any advice for others grieving their old life?
3. How do you keep your spirits up? What helps you to be happy?
4. Were you judged negatively /misunderstood because of this illness? How did you deal with that? Do you have any advice to give other people about being judged/misunderstood?
5. How did you manage your relationships with your friends and family? Any particular difficulties? How did you overcome them? Any advice?
6. Did you get a lot of support from your friends and family? What do you think they did that helped you the most?
7. Did you have to give up any important aspirations/goals? How did you cope with that?
8. Did you have to make any big life changing decisions? How did you deal with that?
9. Has the experience of having this illness changed you in a good way or taught you anything of value? How and what?.
Section 5. Sources of help
1. Have you received professional advice on pacing? CBT? GET? How helpful were they? In your opinion did the professional involved have an appropriate understanding of the nature of the illness?
2. What prescribed medications have you found useful for what symptoms? How much do you think medication has contributed to your improvement/recovery?
3. Did you try any kind of complimentary therapies? Which? How helpful did you find them? Do you believe you saw a skilled practitioner? In your opinion did they have an appropriate understanding of the nature of your illness?
4. How much do you think complimentary therapies have contributed to your improvement/ recovery?
Section 6. Demographics
1. Are you male or female?
2. Age: under 16? 18-25? 26-35? 36-45? 46-55? 56-65? 66 and over?
3. Do you live alone? With a partner? With a family?
4. Do you work? Study? How many hours a week?
Thank you so much for answering whatever you could. Hopefully together we can make life easier and happier for other sufferers of this condition whilst we wait for a cure.
It is so refreshing to see a blog about ME/CFS that mentions the word ‘recovery’ and wants to know what people who have recovered have done! Will email or maybe blog in reply with our experiences soon for your survey. In the mean time you may find some of our blog posts on ME/CFS, interesting.
Replied via our blog post Hope it is useful.
Thanks for taking the time to give such a comprehensive reply to the survey questions Debbie. I hope that your blog post will inspire others to aim for a full recovery too!
Keep these tips in your mind each day. If you find that you forget them or don’t want to think about them, choose a particular time each day to sit and contemplate them, may be first thing in the morning and last thing each night. Then it will become a routine and be much easier for you.