Poll: Do you think that guidelines for how to avoid worsening ME would actually be useful?

[Wishful]

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.

 

[wabi-sabi]

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?

I didn't know I had ME when I was still mild, so it's an important question.

But the other problem is doing the things I needed to do to hold down a job and a home may have made my ME worse. Guidelines to avoid them without real and solid disability support would almost be worse than nothing. Sort of like lecturing people who can't afford food on eating enough fruits and veggies.

 

[Rufous McKinney]

I think it basically comes down to: "If something makes you feel worse, stop doing it."

Agree

In my case- I went about 5 years too long. By continuing to work full-time, retirement was within eyesight. And I had 700 hours of accumulated sick leave. And a mechanism to use it, to Pace. Which more or less tied to the weekly collapses after the 40 hour week.

But going out on disability did not sound like a good plan, and having no diagnosis then at all . I was still just being stared at by the woman in the white coat.

Some warnings about that seem worthwhile. But otherwise, I think your take on the value of guidelines makes any number of good points.

 

[Rufous McKinney]

Guidelines to avoid them without real and solid disability support would almost be worse than nothing. Sort of like lecturing people who can't afford food on eating enough fruits and veggies.

We face sobering realities.

I really lucked out. If I had not had that accrued sick leave. Then, forced to retire several years too soon, financially it would be even worse right now.

I didn't use my sickleave very often because I worked at home mostly. So feeling run down, or lousy one day, I"d simply not make phone calls, or not go to the meeting, but I'd so some calmer activity that still needed doing. and then gobs of unpaid COMP time (working too much on weekends because your dedicated).

so: I worked WAY too hard. Thats very evident now. And I"d prefer my Prior Mild State- to this Moderate crap.

AND ALSO: disease trajectory is poorly understood. I wish we knew much more about it. So now the latest will look at Very Severe, the rest of us not included. Fine- but still, not included means- they still know nothing about you. Its more invisibility.

 

[Rufous McKinney]

In my case, the specifics would be

1) do not let your home burn down with everything in it;
2)do not live in an RV for six months, staring out the windows and stepping on your spouse.
3)Do not get gastroenteritis 9 times so far....for unknown reasons.
4) do not spend 3 months visiting your only daughter, in a foreign exotic place, full of fun and beauty and being with your only grandchild baby.
5) do not listen to Spanish and English conversations.
(the crash I got from the 2 hours I merely listened to 3 young women chat).

6) I think everyone sees where this list is going....

***
improvements do sometimes happen. Two years ago, I could hardly listen to one single piece of music. I now can sort of cope with several songs in a row.

The Tachy and POTs got better. But sort of lives on, as the symptoms YOU DON:T WANT RETURNING.