Healthcare Journal dedicates an entire issue to Severe ME

[Nord Wolf]

I agree with many here in that it is a tricky to near impossible task, and rather pointless, to try categorizing people with ME/CFS and placing everyone into a neat little descriptive box. The illness is to unpredictable for many of us, shifts with the seasons, time of day, weather patterns, emotional swings, ptsd/or not, comorbidity, etc. Yes when it comes to lawyers and insurance, the deck is usually stacked against those truly in need. Unless you have a LOT of money, or happen upon one of those rare lawyers, financial aid is like trying to catch a speck of dust in the wind.
90% of my waking time I am either in bed, or laid back in a large recliner chair with a pillow under my head. I have one of those cushioned lap desk that the laptop can sit on with ease, so typing in bed works fairly well.
Bouts of suicidal thoughts I also feel is a rather common occurrence in those of us with more severe cases, especially in those of us with pretty high levels of chronic ptsd, and higher levels of ME/CFS. The medical field tends to shy away from any real help for those with ME/CFS, but they will never shy away from grabbing people and placing them under "safety surveillance" if they present as possibly suicidal.
Thanks for posting all the articles Pyrrhus.

 

[Rufous McKinney]

I agree with many here in that it is a tricky to near impossible task, and rather pointless, to try categorizing people with ME/CFS and placing everyone into a neat little descriptive box.

there probably are actual subtypes of ME CFS but progress identifying those more formally seems just as stalled as all the other progress.

I wonder how the heck do people write all this and read all that, post videos, conduct webinars. When we are this sick? So I"ve got those symptoms extra bad. yet so many others don't .

If I do anything that focuses my attention for any length of time, I'll get bad PEM. I listened to the first 15 minutes of Martin's podcast, and started getting weary, and can't get back and now he is onto Podcast 3.

I"m still in the roadside ditch with flat tires.

I packed up the art supplies, focusing on the tip of a brush is nearly impossible.

Focus is nearly impossible.

I'm diffused.

 

[BlueCoffeeMug]

I do not want to sound dismissive of mental illnesses, but those who choose to end life because that is the only solution to be free from physical and daily living sufferings should be "volunteer dying" instead of "suicide". Some can access assistance to have a good death. Others have to go through bad death. Just my thought.

 

[Nord Wolf]

I do not want to sound dismissive of mental illnesses, but those who choose to end life because that is the only solution to be free from physical and daily living sufferings should be "volunteer dying" instead of "suicide". Some can access assistance to have a good death. Others have to go through bad death. Just my thought.

I agree that ending one's own life should be the choice and freedom of the individual. I do feel that those who care about that person should do what they can to support and help the individual perhaps find alternatives. But in the end, the decision should be up to the individual... so long as the taking of their life does not place others in harm.