Open Medicine Foundation Receives Monster Donation For ME/CFS

[Cort]

Made it to Reuters

https://www.usnews.com/news/us/arti...pist-donates-5-million-to-medicine-foundation

 

[Cort]

Fantastic news, maybe I am biased, if verbatim Pine sounds female! Thank you, thank you. Re the Weird Blood, in the late 1980's an Adelaide, Australian researcher, Dr Muckajee, ? spelling, found that during a reaction (crash) the RBCs became mis-shapen, swollen, inelastic and unable to travel through small capilliaries to deliver oxygen, he likened this to a similar reaction found in Marathon runners. The difference being the marathon runners reverted to normal in 4 hours but the people suffering the abnormal reaction took about 5 days. Are the researchers able, or do they do the testing during a bad crash??

That's a great idea but thus far they've only tested so far as I know from blood at baseline - and even then there were problems. Who knows what doing it after exercise would find. That's a fascinating question! I hope it gets done...

 

[Cecelia]

I sent a note of appreciation to “Pine”, with this quotation from Piet Hein, a well known Danish poet, designer and inventor,

“Love is like a pineapple,
Sweet and undefinable.”

 

[keepinghopealive]

I think ME/CFS is a complex illness, but unlike AIDS or cancer, maybe it's just our bodies being out of whack and all they need is a little push in the right direction to snap themselves out of this. Hopefully with an already-FDA-approved drug. But now I'm just daydreaming.

I think it will be easier and the reason is that they haven't found evidence of organ or other physical damage. I think it could be a signalling problem that might be easier than we think to reverse.

Cool! Thanks Neunistiva and Cort!

 

[Beth from Oz]

Thank you Remy!

You can leave a message on this Reddit thread: https://www.reddit.com/r/cfs/comments/7uqoep/the_pineapplefund_has_donated_a_further_4m_to_the/

 

[Cecelia]

I sent a note of appreciation to “Pine”, with this quotation from Piet Hein, a well known Danish poet, designer and inventor,

“Love is like a pineapple,
Sweet and undefinable.”

And I heard back from Pineapple with a thank you note!

 

[Not dead yet!]

Let me start by saying thank to the people who are funding the OMF.

Ohhh - you missed that

Interesting stuff! It was in this post

https://www.healthrising.org/blog/2017/12/21/urgency-ron-davis-chronic-fatigue-research-center/

and here it is...

Yes, I'm totally behind the Wierd Blood Project, as described here. When I was only 19, my mom happened to visit a naturopath, and she also insisted that he check me out (bc I'd been sick as a child and suffered starvation, but seemed to have recovered now). I had something like a live phlebotomy test. They hooked me up to a blood donation type machine, and just circulated my blood through it so they could look at it live. The phlebotomist was concerned about my level of coagulation. He said my RBCs were "sticky" and showed me how some of them, you could see two or three stuck together. I asked what I should do and unfortunately he gave me no ideas. He could've said, take vitamin E or Natto, but he didn't.

This was after my suspicious MMR vaccine by the way. I've never had that test again, before or since. But years later when I discovered I was more likely to clot than the average person, and nearly died from multiple PE with an abscess, I remembered that test and did one of those, "gee I wish I'd known what to do." So I can get on board with a theory that the sticky blood is part of the problem.

Edit: wanted to point out that this might explain some of the wierd pain stabs I feel in extremities. I've ended up on sickle cell anemia descriptions, even though I didn't have that, because the description fit. We might be looking again at a situation where Sickle Cells kill, and stiff RBCs just make you miserable and disabled. I hope more information about our illness can help those with SCA also.

 

[Abrin]

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