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If there were no barriers, financial or otherwise, what treatments would you try

erin

Senior Member
Messages
885
I would like to try Rick Simpson's oil. It is illegal where I live and it is probably expensive too. I loved @Dainty's answer, and @Skippa's suggestion make sense to me. If I had money I would get blood transfusions regularly. Other treatments I tried not worked, and the ones I'm not tried seems too complicated and not very straight forward.
 

junkcrap50

Senior Member
Messages
1,330
Dr. Ron Davis said that there will be an important break-through by the end of the year, but we don't know how long it will take to translate to treatment.

What's Dr. Davis alluding to saying that there will be an important break-through by the end of the year? Is he talking about a specific breakthrough he's made in his research, but it's too early to comment on? Or is he just speculating there will be one because of all the recent big CFS research news?
 

maybe some day

Senior Member
Messages
775
Location
West coast
What's Dr. Davis alluding to saying that there will be an important break-through by the end of the year? Is he talking about a specific breakthrough he's made in his research, but it's too early to comment on? Or is he just speculating there will be one because of all the recent big CFS research news?
Ron has youtube videos posted..his latest one might be able to answer your question. In my opinion he and his team are one of the best chances of finding proven treatment. Hope this helps.
 

perrier

Senior Member
Messages
1,254
I think at this moment in time all of the somewhat radical treatments are a crap shoot. And maybe I'm somewhat of a chicken. Ask me again in 2 years! I bet we have a lot more information and efficacy about treatments in a couple of years! I know, I am oh so tired of waiting for real help too!
Two years is too long
 

geraldt52

Senior Member
Messages
602
I don't want any more treatments.Too many times my heart broke from hopes that never became a reality. If I had endless supply of finances..I would give it all to Ron and his team. Im handing the baton to him on my knees because honestly for me, nothing really ever worked to make me feel that much better. I gave up searching quite some time ago.
I could not agree more. I'm not letting money or fear or anything else hold me back from a treatment, I'm just critically looking at what is being offered and see nothing but exaggerated, undocumented claims...albeit by well-intentioned doctors.

If the well-known CFS specialists have the percentage of their patients "improve" that they seem to claim have "improved", with a disease with no known treatment, why would they not put together a small informal trial, with reasonable criteria for inclusion, and reasonable measures for "improvement", and publish the results for all to see? I'm sure the CFS community would be eager to see the results, and flock to their door if the results seemed real.

We as a community jump down the throat of people like Wessely and White when they make unsubstantiated claims of successful treatment, but tend to give those who are more sympathetic to our plight a pass when they make equally unsubstantiated claims of successful treatments. Where and who is this large percentage of patients who these CFS specialists are making well with their treatments? We certainly don't seem to hear from them, and I know I'd be screaming it from the rooftops if after 33 years someone made me well, or even significantly improved.

It would be a good idea of someone figured out what they're treating before they start treating. I hope that person is Ron Davis, and I'd rather give him my money than waste any more of my money, time, and energy going to visit doctors who have no answer, no matter how considerate and sympathetic they are.
 

Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
Two years is too long
I totally agree perrier, but I work in the medical research field, and I am sorry to say that things move at a snail's pace in the USA. And, yet, some pharma companies have had what came to be "bad" drugs pushed through the approval process in record times with questionable study statistics. It's all very frustrating to say the least! I'm pinning my hopes on Dr. Davis and crew. He has about the greatest reason of anyone on this planet to find this thing, and I'm quite hopeful he will be the one.
 

Invisible Woman

Senior Member
Messages
1,267
Perhaps, but if the discovery involves either a non-regulated substance or a drug that is already approved, doctors are free to implement it--at least in the US.


Also they are working on that tiny little gadget that will enable them to see if the drug will be effective for individuals without/before using it on patients. That should speed things up a little . It makes it a bit more worthwhile exposing yourself to the risk of side effects too, as you will know that the drug is likely to work for you.
 

perrier

Senior Member
Messages
1,254
Yes
I could not agree more. I'm not letting money or fear or anything else hold me back from a treatment, I'm just critically looking at what is being offered and see nothing but exaggerated, undocumented claims...albeit by well-intentioned doctors.

If the well-known CFS specialists have the percentage of their patients "improve" that they seem to claim have "improved", with a disease with no known treatment, why would they not put together a small informal trial, with reasonable criteria for inclusion, and reasonable measures for "improvement", and publish the results for all to see? I'm sure the CFS community would be eager to see the results, and flock to their door if the results seemed real.

We as a community jump down the throat of people like Wessely and White when they make unsubstantiated claims of successful treatment, but tend to give those who are more sympathetic to our plight a pass when they make equally unsubstantiated claims of successful treatments. Where and who is this large percentage of patients who these CFS specialists are making well with their treatments? We certainly don't seem to hear from them, and I know I'd be screaming it from the rooftops if after 33 years someone made me well, or even significantly improved.

It would be a good idea of someone figured out what they're treating before they start treating. I hope that person is Ron Davis, and I'd rather give him my money than waste any more of my money, time, and energy going to visit doctors who have no answer, no matter how considerate and sympathetic they are.
yes but how many decades can a young person endure being bed bound
 

Knockknock

Senior Member
Messages
212
I'm curious to know what some of the groundbreaking but out of reach but promising treatments out there that people would try.

For instance, stem cell therapy, fecal transplants (there was another but sigh...my brain doesn't work enough to remember).

Are there therapies that exist that hold promise but aren't attainable due to cost or other reasons?[/QUOTE
I will try antiretrovirals, nucleotide antiretrovirais like raltegravir(insetress) tenafovir( travuda) .
They seem to help alot of people to achive grear improvements.
Probabli both of them with valacyclovir or one of them with valacyclovir.
Very interesting i found that late studies disproved previous studies showing that valacyclovir( valtrex) actually reduce HIV viral load significaly.
This may expain why peope ger better on antivirals( it may have some action reducing. Viral load im the ( unknow retrovirus we may have).
It may also explain why this two Hiv drugs help many cfs patients.
It seems the earlier you use them the better
The results are.

Here is the publication.
http://www.medicalnewstoday.com/articles/290926.php
 

Knockknock

Senior Member
Messages
212
At the moment we have many "helps some with some symptoms" treatments but even those may not be available. The two in this category that helped me the most are no longer available due to regulatory issues: GcMAF and Nexavir.

It may be a time for waiting, as research will probably be pointing to interesting new approaches quite soon.
They still sell GcMAF in Europe and Japan.
first immune is on Facebook.
Im not sure how acure or legic they are since i have never try them.
Did GcMAF really help you sushi??
 

Knockknock

Senior Member
Messages
212
Someone on here said they had a friend who had recovered through stem cell therapy. Does anyone know more about stem cell therapy effectiveness?

Rixumitab scares me - feels too risky although I certainly don't blame anyone for trying.
Why people dont use antiretrovirais?why the tabu if so many people have use them with incredible results going from 5 in the scale to 8-9 .. to almost normal go to the Gym etc.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
They still sell GcMAF in Europe and Japan.
first immune is on Facebook.
Im not sure how acure or legic they are since i have never try them.
Did GcMAF really help you sushi??
Yes, it really helped me. The European and Japanese products cannot be brought to the States though--and First Immune was raided again last week. But if you want to talk more about GcMAF, let's go to another thread.