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Am thinking of changing my vote from "change" to "keep" after reading the comments. I found the name confusing when I first saw it but to be honest that's what attracted me. I do like "Skeptic with ME" though so will leave my vote as it is.

I experience more hunger than usual during PEM also. I don't crave sugar as I am intolerant to anything with added sugar and unfortunately most fruit but am just more hungry in general.

Thanks ME/CFS Skeptic Most interesting! I have tried to figure out how much of my being I'm bedbound is because of ME or POTS or what combination of these to no success. From a series of tests at an Autonomic Dystautonomia Centre run by a POTS specialist in Calgary it was concluded I don't...

My daughter's debut novel launched in April and totally coincidentally;) the main character's mother has ME. Rabbit Rabbit Rabbit by Nadine Sander-Green is a coming of age novel set in an isolated northern Canadian community. The main character, Millicent, is a new and naive political...

I have what my ME physician and I think is paresthesia. It started about 2 years ago, several decades after my journey with ME began. My main symptom is tingling and a burning cold feeling in the tops of my feet going up to my ankles and sometimes on the tops of my hands. Mine is triggered by...

I had a dramatic improvement on starting Mestinon. Was able to do small things like using an eraser or reaching for an object that would have caused PEM before starting Mestinon. I was sure I was on the mend but that was not to be. Exactly. Lasted about a week and then BAM - back in PEM. I...

Interesting thought. The incident I'm thinking of was definitely a delayed PEM response happening the next day. It was actually patting my back, not my arm. I do have an immediate aversion to any patting or movement on my skin, just seems like it is exhausting me so maybe that is cognitive...

Q&A is also interesting. Someone asked how to get more people to read articles like this. Ed's reply was that there's no magic answer but people can help by sharing it amongst their own networks. He also expressed frustration that his last Atlantic article "Fatigue Can Shatter a Person" that...

Yes, most definitely! And increasingly severe PEM with increasing disease severity to the extent that simply patting on my arm now that I am severe can create PEM. Not being able to tolerate massage seems to be a common experience in my network of PWME on social media. Related is Alain Moreau's...

It seems odd that there is a shortage of volunteers as the Massachusetts ME/CFS Association is a large active group.

Yes, I believe it is. I will send an email I have used in a message.

Wikipedia thinks so too. "Between 1985 and 1988, Karikó served as a postdoctoral fellow at Temple University in Philadelphia. Karikó participated in a clinical trial in which patients with AIDS, hematologic diseases, and chronic fatigue syndrome were treated with double-stranded RNA (dsRNA)"

I considered taking fludrocortisone but in the end didn't due to the possibility of worsening osteoporosis.

I'll answer that myself. Jarred Younger says in his youtube above that it will be recorded & available later.

Anyone know if this will be available to watch after the event?

Yes! I think that studying families with clusters of ME/CFS is an area that could potentially provide some good results. In my family of origin 3 out of 6 of the children have ME and in my own family 3 out of 4 children have or had ME, so it's something I've thought about a lot. First, you'd...

I took that stuff for a while in the late 1980's prescribed by my naturopath. Unfortunately or perhaps fortunately my gut was in so bad shape at the time I doubt much was absorbed.

"Ever heard of genetics?" I would respond. I have three children who have had ME.

Thanks Trish. Will do.

Am very interested in a report from this 20 minute presentation by Luis Nacul on Friday. Unfortunately I won't be able to catch it as it's at 1 AM for me in Western Canada. Don't have the energy to go into a lot of detail now but am finishing the year long Complex Chronic Disease Program out...