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    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.

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OMF progress

Kati

Patient in training
Messages
5,497
@Janet Dafoe (Rose49) thank you so much for the snippets of what life is like at Stanford. Every snippet is important to maintain hope. Science and funding process is so slow. There seems to be no sense of,urgency unless you are either a patient or a family member- but there are a few exceptions to this. That is so frustrating. I keep on hoping that physicians and health care professionals i have contact with could understand what is happening in my body and what it feels like, but they do not have the slightest interest.


I had a 4th surgery to my ankle as of late and things didn’t really go well att he hospital, i had to stay 3 night, in a room with 3 other patients, always one who could not stop talkimg loudly with the call bells ringing non stop amd seemingly no one answering them. There were horrible pain issues and the doctors that came to visit could not even ask me questions about my condition, they simply read in my chart and who knows the kind of informtion that is written in my chart. I was over-sedated and people kept poking me seemingly every 5 minutes just to remember to breathe, and yet i was in so much pain. I had fevers and sweats and yet no infection. The local ansethesia I got, the tubing disconnected and so that cathether was pulled out. Things went south after that. It will take me a long while to recover from this.

There is so much work to be done, and it is too much work for the very few ‘believers’. The experts are now at retirement age with no one to take over. Scary times.
 

Gingergrrl

Senior Member
Messages
16,171
It would be lovely to hear whatever he thinks worthwhile to share, WITH the qualifying words highlighted so no one gets the wrong idea. It would be exciting to hear the thought process and, who knows? Someone around here might just have some nugget to add that could lead to a breakthrough.

I agree with this and enjoy hearing updates, even if they are short.

I had a 4th surgery to my ankle as of late and things didn’t really go well att he hospital

I am sorry to hear this @Kati and hope that you are on the road to recovery and feeling better soon.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
Do you guys like hearing about little stuff like this? Ron would like your feedback!
I very much like hearing about this sort of stuff because it gives up hope and keeps us in the loop. It also gives us ideas to work on which may lead to new theories we can send to you and Ron.
I had wondered about blood storage because i recall Dr Davis saying they could not go back for more and i wondered what if a valuable species breaks down over time so its very interesting to hear information from your end about this :)
In my replies earlier perhaps i was not clear about the big picture, its not that i think journal publications and peer review are the best way of doing things, its just that they are what he have so far and a new system has to be proven before the old system is dismantled. A new better system is of course welcome.

BTW were you able to get Domperidone for Whitney?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Thank you very much @Janet Dafoe (Rose49) for keeping us posted on the progress................all the little details are of great value to us as it helps us to feel connected to the research. We are grateful for your time, considering how much you have to cope with.

I hope you are able to get sufficient rest too.

Please thank Dr Davies for us and tell Whitney we are rooting for him. :)
 

edawg81

Senior Member
Messages
142
Location
Upstate, NY
I love hearing about every little detail. Actually because I have a background in science, I would try to help if I wasn't so sick. Keep the news coming. We tend to fixate on the disease and the progress, due to our condition. Setbacks like results being incorrect actually make me (imo) MORE hopeful because I understand the context of trial and error and love hearing about problem solving on ANY level. That said I know the industry disaproves of unpublished results, but this is different, peoples lives are at stake. Updates good or bad reminds us that while we suffer someone is pouring over datasets in hope to help us. Thank you for everything EVERY reseacher is doing for us....
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Messages
97
Location
San Francisco, CA USA
For those of you not on Instagram, OMF posted this picture of Linda with Dr. Kaufman today: https://instagram.com/p/BbcwlaFH2nI/

IMG_2502.PNG
 
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Messages
97
Location
San Francisco, CA USA
@KristenSF Thank you for posting that and I am not on Instagram and would not have seen it. Are they at his new office in the photo?

@Gingergrrl I'm not sure! I've been to the new office a few times but I don't recognize the background. I have an appointment with Dr. K on Monday (and will be there all day for my third Rituxan infusion) so I'll be sure to ask him about this photo and report back! :)
 

Gingergrrl

Senior Member
Messages
16,171
Thanks, Kristen, and I have not been to the new office yet so I was not sure... and good luck w/your next Rituximab infusion!
 
Messages
38
@KristenSF Thank you for posting that and I am not on Instagram and would not have seen it. Are they at his new office in the photo?

I'm confused. Kaufman...left OMF? Did they take the clinic name? I hadn't been able to see him due to $ issues, and then this office split happened and maybe I missed something (note: I searched threads to see if I could figure it out, but couldn't find anything)
 

Gingergrrl

Senior Member
Messages
16,171
I'm confused. Kaufman...left OMF? Did they take the clinic name? I hadn't been able to see him due to $ issues, and then this office split happened and maybe I missed something (note: I searched threads to see if I could figure it out, but couldn't find anything)

Michael, Dr Kaufman and Dr. Chheda left OMI a few months ago along with Lorie, Adie, Ellen and started a new private practice called the "Center for Complex Diseases".

It is still on the same street in Mtn View, just a few doors down but has new ph#, fax#, email, etc. You can easily have your medical records transferred to the new practice if you choose to (which I did) or you can stay with the original OMI.

I have no idea when or where the photo was taken that Kristen posted and it doesn't look like OMI (but I have not been to the new office in person yet). Hope this helps.
 
Messages
38
Michael, Dr Kaufman and Dr. Chheda left OMI a few months ago along with Lorie, Adie, Ellen and started a new private practice called the "Center for Complex Diseases".

It is still on the same street in Mtn View, just a few doors down but has new ph#, fax#, email, etc. You can easily have your medical records transferred to the new practice if you choose to (which I did) or you can stay with the original OMI.

I have no idea when or where the photo was taken that Kristen posted and it doesn't look like OMI (but I have not been to the new office in person yet). Hope this helps.
you are pretty much always helpful. :) thank you
 

Gingergrrl

Senior Member
Messages
16,171
It appears to me to be Dr. K's new office. Looks a little updated from when I saw him this summer and they had just moved in to the new space.

Thanks and I was just curious and I bet it's the new office... will wait for confirmation from Kristen ;)