Clinical Trial: IV Albumin for Severe POTS

[kushami]

As I got diagnosed with something else last year (OCHOS) and CFS is now ruled out for me, I won’t be posting here any more as per forum guidelines.

I just wanted to pop back so as not to leave any conversations hanging.

Even though I didn’t have CFS, I do have horrible chronic fatigue, brain fog, and low blood flow to the brain, so I hope nobody minds that I visited for a while.

Best wishes to everyone and take care. Thank you for having me!

 

[Judee]

As I got diagnosed with something else last year (OCHOS)

Could you explain what that is as I haven't read the thread? (I also tried to look it up on the Internet but it was showing other things instead of a health condition.)

Also I don't think you need to leave the forum necessarily especially if your disease is similar to ME/CFS.

You might even be able to help someone else here who also has OCHOS but is undiagnosed. ??

@Mary was a moderator so maybe she can say if you have to because of guidelines.

 

[Mary]

As I got diagnosed with something else last year (OCHOS) and CFS is now ruled out for me, I won’t be posting here any more as per forum guidelines.

Hi @kushami - from what I understand, the forum guidelines have been changed and members are no longer required to have ME/CFS, though they were at one time. So I don't think there's any need for you to leave. But I want to confirm this with another moderator and will reply back here when I find out for sure.

Thanks @Judee for catching this -

 

[Mary]

@kushami - Phoenix Rising's policy has changed and persons are no longer required to have ME/CFS to be admitted as members though they should have an allied or related or similar condition and it certainly sounds like you qualify so there's no need for you to stop posting or leave the forum.

 

[sb4]

I didn't even know that was a rule.

I've been posting here for year and I don't have PEM / ME.

 

[Mary]

@sb4 - from what I understand, initially it wasn’t required to have ME/CFS to join PR but at some point it was made a requirement. But members who had joined prior to that time were allowed to stay. Nobody was asked retroactively to leave, it was just that new members were screened for whether or not they had ME/CFS.

And now the pendulum has swung back

 

[sb4]

I see. I was recently denied entry to a telegram group for not having ME.

I don't really see the benefit to such a rule but I'm sure there is one.

 

[Mary]

@sb4 - I didn’t make the rules or guidelines about this, but as I understand it, the reasoning for limiting membership to persons with ME/CFS was to keep the focus of the forum on ME/CFS. There’s almost nowhere in the world where persons with this illness can find help. There are forums for people with MS and thyroid issues, etc. etc. etc. so the fear was that the forum might get sidetracked with other illnesses which are recognized as being real and which do have a lot of support from the medical community.