Discussion in 'General ME/CFS News' started by Sasha, Mar 24, 2016.
Just had this in an email:
I think this is the video in question:
Excellent update/summary of Dr. Bell's work as a leading ME/CFS clinician/researcher.
So grateful he's joined OMF!
I found the sound quality somewhat difficult but the content is so outstanding I would rate this talk as top of the line!
OMF is very fortunate to have him, or I could put it the other way around: the fact that they invited him onto their Advisory Board shows how smart they really are and how intent on success.
I'm halfway through watching the vid. At 23:15m Dr. Bell said that 80% of ME patients can have a circulating blood volume of 50% of normal. He added that people who lose 15-20% circulating blood at one time in car crashes, it's fatal.
No wonder we feel like we are dying at times.
This is fantastic news. I would love to see more of our experts join the OMF yet am grateful that for all the support and researchers that have joined.
Now NIH step up and give them some money!!!!!!!!! Makes me sick how the NIH won't fund these experts; what does the NIH and Wallit want to say "see look we found whats wrong first????"
If we should be signing or fighting something as well we should be calling out the NIH on the OMF Study as well as Dr Lipkins work.....
You know I want to believe that the NIH wants to help and I think Drs and people their do...but.....somewhere behind the scenes some group keeps pulling on that rope....that rope that is preventing the ones at the NIH and CDC from breaking this thing wide open so we can get funding and more researchers and Drs involved....
Great news. Not only a talented and knowledgable MEcfs clinician , but a very good person too !
Interesting - Dr Bell says (at 32:40 or so) that severe ME patients don't respond to IV saline and don't have reduced blood volume.
He did say that....weird.
How could this be considering the most severely affected have barely been studied from what I understand?
He said he did a lot of work studying blood volume so I guess he's done it but it hasn't been followed up.
With recent findings out of OMF as Mitochondria being a big player for the severely ill this may just point to another subset or stage of the disease.
We need so much more research and money.
I don't understand that. My first two severe years were the very worst for POTS.
True. He did quite a few. When mine came back normal he said he wasn't surprised and why. ( I wasn't in his study) It has a couple theories about it.... long time ago can't remember exactly. One conjecture was that it was so low that the blood vessels adjusted and so gave false reading. Wish I could explain like he did
Some of those he repeated and registered low later.
So he was able to study the blood volume of the severely ill? I am havin a rough day..brain and eyes are just a mess
You were tested by him?
It would be interesting to put some of these severely ill patients through current mayo clinic tests for Dyautonomia/POTS and some of the dysregulated receptor type tests?
But can't people have POTS without low blood volume? I don't know - just asking!
You might be right I'm not sure either now. I have always thought POTS was due to low blood volume. I'll watch the rest of the video today.
I have POTS and normal or slightly high blood volume. My POTS is due to small fiber neuropathy.
Thats very interesting. I was told that SFN causes POTS.
Did you have a biopsy to confirm the SFN?
What test did they use to TEST blood volume?
Isnt SFN caused by an autoimmune response?
I am really interested and hope you dont mind sharing.
You can also try a Google Site Search
Separate names with a comma.