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In this digital era, the cell phone analogy is helpful in explaining non-initiated of what it feels like when you have ME. Figure that you get up in the morning and pick your phone as you hurry out the door. Only while in the bus you notice it’s charged at 10% and you left the cord at home...

All agreed @Andy and i feel that the first post of the thread mentioned more of the barriers rather than how to advocate for our disease. Personal advocacy pertains to getting appropriate care and social services in your personal context with what you personally need. Advocacy for our...

Feel free to like, comment and retweet! She deserves extra thank you especially in this busy time for Senate.

Would love to see full text.

This: https://www.cbc.ca/news/canada/british-columbia/karel-pekarek-cancer-misdiagnosis-emergency-rooms-1.5389039

The thing is for most discipline, Mayo clinic is the go-to place to get answers on what ails you. I suspect that new patient fall into this trap until they know better.

The thing is, the website is telling how they treat their patients at Mayo. Over the years, through forum posts and other social media channels, we have learnt that their service is all about group therapy, CBT, GET and the like.

Shame on them :(

No, @alktipping this happens in socialized medicine as well.

Early in my illness, i presented to ER with severe abdominal pain radiating to the back. I trashed in bed, it was so bad. They gave me morphine which made me sleep. In the morning the nurse pulled the Iv and said i did not need to be in the ER, and sent me home. I returned in the afternoon...

I agree that there is a lack of longitudinal study to look at functioning, level of activity and level of disability, just to name a few. Optimally this would need to get started as soon as the beginning of the illness which of course present challenges. In regards to causality of exercise...

We are still at it ( gently) arguing about exercise, exertion and activity. What do patients know and experience, what the science has been able to prove seems to still be different. Beyond exercise, I would argue that there are other ways for patients to crash themselves. In my case...

That is because antidepressants do not fix ME. It fixes depression. Coffee doesn’t fix ME either i am afraid.

Oh dear, why, why why?

And exercise can actually be house work, because you do not have a choice, and it sends you to a crash. The prescription of the exercise should be as deliberate as trying to dismantle an explosive device. If you don’t know how to do it, you leave it to the experts, and there are very, very few...

https://www.eurekalert.org/pub_releases/2019-12/uob-das120419.php

Rosie, when they put you to sleep, the anesthetic is in the syringes that they push into your Iv line. There may be more than one agent and sometimes other meds that prevent side effects as well. It would be a good question to ask for sure and for them to know your reaction to whatever was...

Hi @Rosie sorry about your diagnosis which will require more attending to. i have had several surgeries since sick and have never noticed any muscle paralysis while conscious. Most anesthetics (which require ventilation) cause you to stop breathing, but in 99% of the cases you never know, you...

Thank you @Jonathan Edwards. I could not help but read the comments at the bottom of the article, with the usual fights about ‘ME is not CFS’ and ‘it’s the enterovirus, stupid’. I am so over that.

The bastards didn’t want to get better... :ill: 6 months of ‘treatment’ at the hospital very much sounds like CBT