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'Social interactions often help patients start to rehab their brains. Visits with family and friends can keep them engaged and help them flex the cognitive powers that lost strength during an illness'. This has been quite the opposite 'solution' in my case of 'brain fog'.

I can identify with this when describing pacing and PEM prevention, but would not describe it as "mild ME'. I wish we could get away from labeling ME as 'mild, moderate and severe' when describing PEM. It gives the impression that we are only 'mildly' affected. When PEM occurs, my...

GI motility testing with a wireless capsule reveals significant GI dysmotility in people with POTS, EDS, MCAS and/or autoimmunity.

I was genuinely trying to understand other people's experiences, and was not being dismissive if that was your interpretation.

So is it the "label" of ME in particular that people are prejudice about in UK and other parts of europe? Or is it from having a chronic illness and being disabled? Yes cultural differences and how each country labels ME. There were 2 ME doctors in my city in the early 90's when I became...

My abandonment from family members over the last 28 years was not from having ME (no one showed that much interest in learning about it-ever), but was from ignorance and being caught up in their own lives.

Agree, we all have our own experiences. I was active in ME support groups for years, and met many people irl with ME, but I have never heard stories of this type of abusive behaviour, dismissive yes, but not this sort of ugliness and shame put on them.

Are you referring to children or young adults who haven't established themselves yet? If that's the case then the parents are abusive- period. I mean, I was an active productive adult before becoming ill, and my family (who know who I am) would not question my illness if I could no...

[refers to a poster who has since deleted their post] I am so sorry you experienced this! That is cruel. How common is this? I have encountered dismissiveness and "condition your life around it" comments, but I've never been bullied or abused because I was sick or had ME by anyone.

@Trish I've had several ppl tell me, "I have CFS too, or a friend had it and tried . . . and got better" :emoji_rolling_eyes: Thanks to the stupid name. That would be the main reason for me to avoid mentioning it.

Yes I do, and I certainly wouldn't be disowned or made to feel ashamed because I have an illness that is still not well understood. I have never been threatened or felt the need to hide because I'm disabled. No one in my life has ever accused me of choosing to live a 'lifestyle' of ME. I...

I don't think the reason that there is little awareness and funding for ME is because we are 'hiding' our illness from friends and family. We need a little more perspective here.

29. I hope I didn't offend anyone with my message. I guess comparing it to the LGBT experience made me react.

I've never hid my illness and have never gone into great detail about ME only because it's too complicated to explain PEM, not because I feel ashamed or judged. I have been dismissed by one or two doctors because they didn't believe ME was a lifelong illness, they understood PVFS though...

The feeling of a new, snug pair of socks makes me believe anything is possible.

But Sharpe has a pathology, he has become addicted to his own ignorance, digging in his heels, unwilling to surrender it.

True, but PEM is a very poor definition that doesn't even come close to describing how we feel after going over our 'energy window'.

Source Urban Dictionary. TOP DEFINITION: Covidiot Relating to the 2020 Covid-19 virus: Someone who ignores the warnings regarding public health or safety. A person who hoards goods, denying them from their neighbors. Did you see that covidiot with 300 rolls of toilet paper in his basket? That...

I think the new term is "COVIDIOTS".

I find that I'm ok if I only use specific muscles groups at a time. I can power walk, but can't take a shower afterwards because of the warm water, and it would require using my arms. I can lift light weight afterwards as long as I dont' raise my arms above my shoulders. I could never...