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.
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Is the suramin trial for me/cfs? I hadn't heard that a suramin trial for me/cfs was planned. Any more details on that?There's also Ron Davis and Nancy Klimas drug repurposing efforts, the enterovirus antiviral drug development in Rega, and Robert Naviaux's suramin trial
Is the suramin trial for me/cfs? I hadn't heard that a suramin trial for me/cfs was planned. Any more details on that?
Thanks. What is this Rega? The others I'm familiar with.There's also Ron Davis and Nancy Klimas drug repurposing efforts, the enterovirus antiviral drug development in Rega, and Robert Naviaux's suramin trial
It takes time. A rush to do something in science can still take years. A lot of the data this is based on has yet to be published and reviewed. I expect we will hear much more on this next year.There was the reported finding that cells from healthy people put in serum from people with ME became unhealthy (developed problems with energy production?).
I believe both Ron Davis and Fluge and Mella have found this (?).
To me, that is a very significant finding. I'm surprised we haven't heard more. I would have thought other researchers would have rushed to replicate this finding.
This is one thing advocacy can make a huge difference in. Antibiotics for gastric ulcers finally came to be widely used after a decade of patient advocacy. We must be prepared to fight if the science is there.Thanks for the additions. Even without a mechanism, if existing drugs prove to be theraputic, that can significantly reduce time to them being available, by skipping most of the approvals process, or allowing doctors to confidently prescribe off-licenced-indication where this is possible.
Who is 'they' and where can I read further about that?It takes time ... one finding I have been waiting for since at least last year ... they found elevated beta cortisol receptors, which will act to induce cortisol resistance. Yet the details are lacking, so we cannot judge if this is important or not
Hi @perrier i can relate to this.It's very hard waiting
This was from a video conference, in Sweden I think. Its not written up, though I think I came across a brief mention somewhere else. I am not sure I recall the name, was it Bansal? I do recall it caused some commentary at the time. Which is why I want to see something in writing. Details matter.Who is 'they' and where can I read further about that?
There was the reported finding that cells from healthy people put in serum from people with ME became unhealthy (developed problems with energy production?).
Yes Kati, so am I. But it's very hard when you have a family member who is severely ill: this waiting,this hoping,this praying. There is no sense of urgency in the general research community,except for Dr Davis.Hi @perrier i can relate to this.
i think we will find hope on August 12th when Dr Davis and his team presents at his symposium in Stanford. The good news is a Canadian researcher, Dr Alain Moreau, will present there.
Keeping all my appendages crossed.
As to 'mechanism', there are a lot of 'this is weird' papers - but there is no mechanism for why CFS happens. In order for drugs to be developed specifically for CFS, a mechanism and then a point to attack the disease with a drug needs to be found.
It seems unlikely this would happen before 5 years, with a designed treatment at least 15-20 years away.
This is for a specifically designed drug, based on a known mechanism - the gold standard of development.That is terrible to read and the worst part is it's possible they still won't have a cure. Seriously F this. I'm at a loss for words. I guess I better learn to accept this reality.
That is one avenue that Ron Davis is working on--testing all existing drugs against ME/CFS.In some cases, drugs for other diseases prove useful at some point, either with or without a clear reason why it would be so.