This the first in a series of “innovation blogs” which focus on creative ways the chronic fatigue syndrome (ME) community is taking matters into its own hands, and producing projects that move this disease forward. The first blog focuses on a worldwide survey that was produced to provide some answers to a crucial question – how ME unfolds over time.
Some early survey results. The biggest subset of ME patients have experienced major fluctuations in their illness over time (thick blue line).
The disease course survey created by the Norwegian ME Association and the European ME Alliance includes questions on how long you’ve had ME, how long it took to get diagnosed, how your condition proceeded, how much healthcare, family, business support you’ve received, etc.
It’s a European survey with a twist – people in the U.S. and Canada and, in fact, anyone who speaks English (or another European language) can join in as well. (The survey is provided in 13 languages). By the time the survey is done, it’ll be possible to compare results across well over a dozen countries.
The survey is given in 13 languages
The survey will likely run through July. The goal is to get 10,000 responses. I just took the survey from the U.S. It took about five minutes.
The survey results will be used to better understand ME and to support advocacy efforts. This is an easy way to participate in the worldwide movement to move ME forward.
Please Take the Survey Here
- Next Up in the Innovation Series – ME Action Goes on a Chronic Illness Adventure
Norwegian-link is wrong :
A totally foreign language;)
The language is just Croatian but will fix it. Meanwhile, if you click on another flag, and then back to Norwegian it works. (Same is true for Swedish, click on another flag first.)
I will do the survey another day. My concern now is hearing the Dr Paul Cheney died on June 10. AMMES posted this, by an unsigned post in their newsletter. I cannot find an ordinary obituary online. Is it true? He was one of two doctors to give me direct and useful help, when his office was in Charlotte, North Carolina, in the 1990s. I hope the patient community can honor his career and the help he gave.
I am working on a memorial piece.
That is good to know. Thank you.
I was able to complete the survey, short and only clicking required. Apparently, due to the number of spelling and grammer errors I made in the first sentence, it did tax my cognition.
I’ve done survey but I struggled with last part, the statements didn’t make sense to me in relation to the possible selections. I answered the ones that made sense and selected N/A for the others.
I think it’s great to have these surveys, it’s nice to feel that I’m contributing, just a little ?
Done! Always happy to participate in these surveys – the results could shed light on the illness.
The course of the illness over long periods of time is a gold mine – I hope they produce more detailed surveys on this subject – life circumstances can change greatly over a long period of time, affecting the answers.
Done. Thanks for sharing, Cort!
I still can’t understand why there has become the new nomenclature where suddenly we have become ME. I went to take the survey but couldn’t because although I’ve had an extensive workup, both by Dr. Montoya and by Dr. Bateman I have been diagnosed with CFS. This “Holier than thou” thing started by the ME people when the whole movie thing came out is just really disturbing. The name of our disease is NOT ME! as the survey asks, it’s “ME/CFS” according to the last nomenclature.
I usually use ME/CFS but in deference to the term used in the survey, I used ME throughout this post. Honestly, that seemed a little strange for me 🙂
I have completed the survey. Not too taxing, though I did have to try and figure out what they were asking, in some parts. However, having said that, it felt good to have the opportunity to participate.
The course of my illness wasn’t mentioned. I was bad, got worse then slowly got better over 32 years (so far). It was a 15 year down slide and a slow steady improvement as we figured out all the comorbidities and got help for them. At the worst I was losing consciousness several times a day and was bed bound. Now I am at about 40-50% of normal.
Hi Cort! Survey was straightforward & fast. So sorry to hear about Dr. Cheney.
Thanks for sharing!
Done ! Profound science crafted this survey via long covid.
my trajectory was:
mild ME started as a child about 57 years ago
moderate horrible ME took over 3 years ago-possibly a new viral exposure or extreme physical stressor or both.