The topic of researching prevention of ME came up on S4ME. Since we don't know how or why ME starts, we can't prevent it, so I think research into the root cause of ME should come first. Guidelines for how to prevent worsening of ME might be more useful, although since we all seem to react differently to various factors, I'm not sure how useful general guidelines would be. I think it basically comes down to: "If something makes you feel worse, stop doing it."
One problem with guidelines for preventing worsening of ME is whether it would reach the appropriate people in time to be useful, thus this poll. Those of you who have made your ME worse long-term probably wish you knew what to avoid beforehand, but at the time you did whatever it was, did you know that you had ME and thus needed to check guidelines for what to avoid? If there had been a set of guidelines published, would you have know to check it and been convinced to make whatever sacrifices necessary to follow them?
Yet another problem is that since we respond so variably to things, how likely is it that the guidelines would actually help some people and how likely is it that it would actually harm some people? Avoiding exercise is good if exercise actually worsens your ME. If it doesn't, avoiding exercise could harm your health. Guidelines recommending supplements might also harm some people without offering any benefit, because they can be harmful to some people, and we know they don't necessarily benefit everyone with ME. Keep in mind that there will probably be many people who don't actually have ME who might think they have it and follow the guidelines.
If a group were given funding (taking limited funding away from other research), I can easily imagine some very useless recommendations followed by enough avoidances of responsibility for negative outcomes that it still comes down to figuring out on your own what you need to avoid.
For the poll question, don't assume that the guidelines would have warned you about whatever specific thing it was that did make your ME worse; imagine the kind of guidelines that would actually be created by the kind of group that would create them (keeping in mind GET and CBT). Also keep in mind whether you knew that you had ME and needed to look for such guidelines at the point in your life when you did whatever it was that caused long-term worsening.
One problem with guidelines for preventing worsening of ME is whether it would reach the appropriate people in time to be useful, thus this poll. Those of you who have made your ME worse long-term probably wish you knew what to avoid beforehand, but at the time you did whatever it was, did you know that you had ME and thus needed to check guidelines for what to avoid? If there had been a set of guidelines published, would you have know to check it and been convinced to make whatever sacrifices necessary to follow them?
Yet another problem is that since we respond so variably to things, how likely is it that the guidelines would actually help some people and how likely is it that it would actually harm some people? Avoiding exercise is good if exercise actually worsens your ME. If it doesn't, avoiding exercise could harm your health. Guidelines recommending supplements might also harm some people without offering any benefit, because they can be harmful to some people, and we know they don't necessarily benefit everyone with ME. Keep in mind that there will probably be many people who don't actually have ME who might think they have it and follow the guidelines.
If a group were given funding (taking limited funding away from other research), I can easily imagine some very useless recommendations followed by enough avoidances of responsibility for negative outcomes that it still comes down to figuring out on your own what you need to avoid.
For the poll question, don't assume that the guidelines would have warned you about whatever specific thing it was that did make your ME worse; imagine the kind of guidelines that would actually be created by the kind of group that would create them (keeping in mind GET and CBT). Also keep in mind whether you knew that you had ME and needed to look for such guidelines at the point in your life when you did whatever it was that caused long-term worsening.