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I'm at the stage where I need to have my hair in a ponytail, but I can't reach back far enough to do it due to wonky shoulders. Too bad the idea of doing it for me freaks out my DH. I told him it's just like wrapping a rubber band around a bunched speaker cable. I think he got that!:laugh...

I can't offer anything except my sympathy, @ScottTriGuy, but you certainly have that! It sounds so uncomfortable and distressing. I hope you find answers soon. :hug:

The article relies heavily on a Dr. Kellman from an eponymous clinic in New York City. Never heard of him. Does he have any bona fides in the field?

https://www.cbc.ca/radio/whitecoat/should-i-have-kept-my-cancer-1.5454239

Oh, this looks so interesting, and I could only manage two minutes!:banghead::banghead:

Suzy, in my book you are probably the biggest hero in the world of ME. Your boots show it. Thank yous beyond measure!

I was struck by their imagined roster of daily activities. I wouldn't be able to do one day's activities in a week!

Thank you, @Mike Harley, for all you do to bring attention to our disease. I'm in awe of the time and effort you expend on behalf of PwME. :heart::heart::heart:

This article was the lead article in the Science & Health section of our Sunday newspaper. At least should help with public awareness.

Do we all have high resting heart rates? Mine is as low as 48 bpm.

Feb 1990 following an undiagnosed flu-like illness.

I'm not sure if your objection is to the concept of a feeling of having utterly no energy---of being so exhausted you can barely sit upright---or to the use of the word "fatigue." I'm aware of the difficulties with the word "fatigue," but I sometimes wonder if we run the danger of rejecting...

I'd say you were very lucky to happen upon doctors who would actually listen to you and believe you! When my autoimmune disease was diagnosed, I had the good fortune to come across 2 doctors who took me seriously, who believed me, and who knew enough to recognize my disease. This was after my...

Good luck to him. After I was diagnosed with obstructive sleep apnea in 1997 (having come down with ME in 1990), I was assured that my life was to get much better, and that my ME would disappear. Umm......no. Over twenty years later, and with faithful use of a CPAP machine, I'm much worse now...

I wonder if the reason we have so much trouble talking about this disease is because we have no words. I know I can never find any that seem adequate. And think about it: Our disease may have characteristics that have never before been seen in human history and therefore we don't have words...

There have been many excellent suggestions for topics to be covered. Before deciding what is to be included, though, I think there needs to be clarity on the audience(s) for this material. I can see that it might be a writing we share with our doctors, or a text we give to a neighbor or put...

I have found the body scan meditation by Jon Kabat Zinn to be very helpful. It teaches you to separate from the pain.

I am not a scientist; I'm a long term (29 years) pwME. I think this discussion is critically important. When I first joined s4ME in October 2017, I felt confident that I was getting good information. That appears to have changed over the past year. Now it seems that many people are talking...

May my thoughts, and everyone else's, buoy you up and carry you along this journey, @Gary Burgess ! Thinking also of your spouse in my circle of concern. Strength and love to him.

Balsamic? Red or white wine? Fig?