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 register, simply click the Register button at the top right.
You might have this article in mind, along with the replicated findings on NK cell activity?But given the big improvements some ME patients see treating individual chronic viruses like enterovirus and EBV with antivirals it seems this is the direction with the most promise and the shortest time to research (apoptosis inducers). There is no point re-inventing the wheel if you just have to tweek nature a bit chemically to get the result you need.
Edit:Thirty patients who fulfilled clinical criteria defined by the CDC for Chronic Fatigue Syndrome were treated with alfa 2a interferon or placebo in a double-blind crossover study. Outcome was evaluated by Natural Kilter (NK) cell function, lymphocyte proliferation to mitogens and soluble antigens, CD4/CD8 counts and a 10 item Quality of Life (QOL) survey.
Although mean NK function rose from 87.8 +/- 19.6 to 129.3 +/- 20.7 lytic untis (LU; p <.05) with 12 weeks of interferon therapy, there was no significant change in the other immunologic parameters or QOL scores. When the 26 patients who completed the study were stratified according to their baseline NK function and lymphocyte proliferation, 4 groups were identified:
3 patients had normal NK cell function and lymphocyte proliferation when compared to normal, healthy controls, 9 had isolated deficiency in lymphocyte proliferation, 7 had diminished NK function only, and 7 had abnormalities for both parameters. QOL scores were not significantly different for the four groups at baseline.
After 12 weeks of interferon therapy, QOL score significantly improved in each of the seven patients with isolated NK cell dysfunction (mean score, 16.3 +/- 7.9) compared to baseline (39.7 +/- 12.1; p < .05). In these patients the mean NK function increased from 35.1 +/- 11.7 to 91.5 +/- 22.7 LU (p < .01).
Significant improvement was not recorded for QOL in the other three groups. Thus, therapy with alpha interferon has a significant effect on the QOL of that subgroup of patients with CFS manifesting an isolated decrease in NK function.
that the groups that end up with a lot of govt. funding are those who start their own fundraising themselves.
For a "co-op funder" that's not a relevant question, because they are raising money for their own Scientific Board, not to fund some random grant applications.How many grant applications have been submitted by OMF till now ?
Not sure how long youve been health challenged. Im pushing 30 years. My point is, OMF wasnt even around until recently. Before that, we would gets blips on the radar about this illness, but thats it. Forced to push through that maybe something will be around the bend. Years after years would pass.
Now I agree like many, that research should be faster, no doubt. But be aware, heres a man (Ron) who works tirelessly for you, us, and everyone globally. His son is very severe. He has a marriage, a family. Not to mention finding time for himself. Naturally, he doesnt have the resources to cover everyones concern.
Researchers could easily say f-it, it cant be solved, and leave us all. OMF put a bulls eye on the map for all the doubters in the medical field to take a second look
Just have an open mind, and see how far things have come, and will come.
I want to say once more: neither type of non-profit is better than the other, but they are different and you should not hold them to the same standards, ask them the same questions, or expect the same behaviors from them.
We weren't given a fair chance, and as more and more unknown illnesses are discovered today, it's only going to get worse. Me, I'm now past the stage where anything is going to make a difference.