• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Support for those too ill to post - or even sign in

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
People sometimes disappear from PR for a varying amount of time - sometimes permanently - and no one seems to know what is happening with them. They may be well, and busy; they may be ill and struggling; they may not be well enough to post messages, or even to type at all, so may not be able to sign in, hence my posting this in an open forum. Sadly, things may be even worse...

There are also many who have not joined because they lack confidence, do not have a good grasp of English, etc., again hence my use of an open forum.

I just want to say to all these people:

I am thinking of you, and wishing you well. Stay strong. Please join us if you can, but don't worry if you can't - we know you are out there and suffering and struggling as we are.

I hope that this site gives you strength, support and hope as well as practical help.

While no one you meet may understand you - we do.

Things will change - and are changing - for the better, overall, although there are setbacks.

Together we are strong.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Together we are strong. Thank you @MeSci

I'd like to also include in this a special thanks and support for all those who care about us and care for us.

We are millions in number around the world- we may be an invisible community to most, but we have strength in numbers and huge strength in our determination and hope for a better life and better health. I truly believe this is coming.
 
Messages
3,263
We are thinking of you often - those of you who are reading us but are not well enough to post.

Inspired by @Mij's post above, I thought I'd post this sweet song. Its about deafness, but I feel its speaks to anyone who has a voice they cannot share.

"... I'd like to tell you all I know... can you hear me?"

 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Yea, my reaction tool. The sobbing thing does a number on my symptoms, though! Hell, we can't even emote without paying for it!

But try to explain that to the "outside world" - they just don't get it. To most people, a flat affect = depression. They can't comprehend that it could be a shield and a way to conserve energy.