+100%-

when you get it right

you pass it on… Gary Snyder

When things go wrong, the “If only I had known! “, “If only I could have that back!” mantra shows up in spades.

Differently survey for ME/CFS and FM

If you could do it all over again – what would you do differently?

Of course, we all make mistakes – major mistakes – that we wish we could have avoided.

False assumptions or expectations are often the culprit.  We didn’t realize we were playing with a bad hand, didn’t see that train coming down the tracks. Basically we missed or didn’t know something.

We thought “this cold will go away”, “I can trust my doctor”, “Doing “X” surely won’t hurt me,” only to find out later that we were wrong. We carried on, sometimes blissfully ignorant of the fact that we were digging ourselves deeper and deeper into some hole.

Of course, hindsight is always 20/20. While hindsight can’t undo the mistakes of our past, it can help others to smooth their path, and make their journey through ME/CFS/FM a bit easier, and that’s what this survey is all about. These diseases are big enough challenges without us adding on unforced errors along the way.

This survey’s genesis is a 2013 post which asked, “Given what you now know, what would you have done differently on your journey with ME/CFS/FM?” A followup post was promised and, six years later, here it is. (:))

Given What You Now Know, What Would You Have Done Differently With Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

This survey is part of Health Rising’s Community Reports series…

The Community Reports: How to Manage, Thrive (or Just Survive) Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia

The Survey

The poll questions created from this survey are derived from the 100-plus comments the earlier post elicited. (Plus I added a few.) They cover doctors, treatments, stress reduction, relationships, finances and disability.

A little warning – that resulted in a rather long poll but it should go quickly. The results of the poll will be featured in another post (which will not take six years to produce).

Note that all poll answers are anonymous. There is absolutely no way to tell who provided what answer.

Feel free to suggest additions to the poll.

 

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HISTORIC Action to Double NIH Funding For ME/CFS Under Way

Raskin Jamie ME/CFSNOW IS THE TIME

After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.

Be a part of making history. Find out more about the effort here and join it here. 

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