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I just want to point out from having this illness for almost 30 years that many of these symptoms are transient. I did not experience PEM for many years. I went through a period when it was difficult to hold my head up, neck pain, eye twitching etc @JenB are there ME patients that...

My phenylalanine and tyrosine levels on my amino acids test were way below normal range. They were the lowest of all my amino acids.

Are you scolding us? ;) I have decent will power but I'm still human. I also had issues with caffeine before ME.

@hellytheelephant I haven't been out power walking because of viral/vertigo for the last month so I've not been taking the powder. I will update when I'm back out again :)

Exactly.

He is a resident of Llandyssil, Cardiganshire, Wales and travels down to France to ski? I'm sorry, but just 'travelling' to the grocery store in a car driven by my friend takes some out of me and I'm not 80% bedbound.

He's says he's bedbound 80% of the time. What am I missing here?

@erin I've noticed lately that the hot chocolate drinks with raw cacao powder are starting to make me feel a little jittery too. I almost purchased a Nespresso Vertuo coffee machine :nailbiting: but that would have been the point of no return and the end of me! I guess next will be dairy

@Trish you make very good points. I don't have any responsibilities except taking care of myself. I don't even have to talk for weeks if I choose not to.

Yes, this was my experience too. Cognitive decline was not an issue for years until I started exercising again. My PEM symptoms amplified over the years.

Just saying "I'm feeling better today" to your GP or family member is dangerous.:unsure:

Caffeine drains my energy, but if I can stick to 3 cups/week I'm doing ok.

@Rosie well said. Any amount of activity has to be carefully planned in advance. Plenty of rest before and after activities.

@ArtStu moderate exercise helps stiffness and achiness for me, but it does not help or improve M.E. It's a very fine line to walk, and benefits from exercise should not be used in the same sentence as M.E

How many SPECT scans were done? My dear friend who passed away showed hypoperfusion on one scan, and a few years later the hypoperfusion disappeared. I don't think it's a good indication on the severity of disability because he was feeling much worse on the second SPECT where there...

How many men compared to women suffer domestic abuse? People with PTSD and trauma events appear to be more susceptible and more at risk of developing fibromyalgia. There are several studies to support this.

She won her appeal, most likely. I think I may have used that term years ago.

Thinking of you @Rosie :hug:

@duncan The interesting part in the article is that Jacques was diagnosed with MS in 1991, this was the year I became ill with a sudden viral infection that developed into M.E. We live in the same city, but not in the same neighbourhood.