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Realistic expectation of time frame before treatment that improves function.

Fighttolive

Fighttolive

Messages
99
Snowdrop said:
The answer I think depends a lot on where do you live and how much money do you have so that you can pay for treatment.

In the US presently there are some people who are being treated with some success (much better Quality of life but not cured).
Some even manage to get treatment that is covered in part by insurance.

But other places where social medicine is in place the funding of treatment will take longer and probably be a battle to be fought.

Even if a diagnostic marker is maybe within 5 years and confirmation of a particular drug therapy within another 5 many will be waiting to get access to diagnosis and therapy if they need their insurance/health plan to cover the costs.
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Hi snowdrop, I'm currently very lucky as I can still function pretty highly, I'm blowing my energy every day trying to make as much money as possible so I can have the ability to afford any treatment, or if luck should have it make enough to substantially donate to the work. We can't get 5 million measely dollars for the lipkin study? Such a joke. I currently do live in the USA, would you say it has the best possible treatment outcomes?
 
Gamboa

Gamboa

Senior Member
Messages
261
Location
Canada
perrier said:
These are very long wait times for folks who are bed bound enduring PEM and every other miserable symptom this horror brings on.
A day is a hardship, let alone 10 years.
There will be many suicides at this rate. Many folks won't make it...

Does anyone know what Dr Davis is working on now and what they have found?
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@perrier -- Dr. Davis is about to release the first set of data on his metabolomics study--any day now. He had hoped to be able to present it at the IAME/CFS conference at the end of December but there were some legal hurdles to overcome. This was anticipated to take a few more weeks.

I think it will be exciting news and will add to Dr. Naviaux's and others recent metabolomic studies. I think Davis, Montoya, Fluge and Mella know a lot more than they can reveal to all of us at the moment. :)
 
Fighttolive

Fighttolive

Messages
99
It's not a question of waiting for the FDA approved things so insurance can pay, well for some of us..it's actually finding something sufferers respond to. Who, (if possible) wouldn't hit the black market and spend money on something that could provide a remission. Ritux is kind of like Russian roulette I feel.
 
*GG*

*GG*

senior member
Messages
6,389
Location
Concord, NH
Fighttolive said:
With all the research being done now, what do you guys think is a realistic expectation of some therapies that might allow some suffers to have a normal life, even if it's a few days a week.

The fear of one day being unable to function and foster the social aspect of life I crave so much..just makes me want to sleep forever, drift off into the calming darkness and maybe wake up in some sunshine.
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@Fighttolive
Have you tired Low Dose Naltrexone (LDN)? Lots of people get good relief with it.

How is your sleep? If bad, what do you take for that? Remeron?

GG
 
P

perrier

Senior Member
Messages
1,254
Gamboa said:
@perrier -- Dr. Davis is about to release the first set of data on his metabolomics study--any day now. He had hoped to be able to present it at the IAME/CFS conference at the end of December but there were some legal hurdles to overcome. This was anticipated to take a few more weeks.

I think it will be exciting news and will add to Dr. Naviaux's and others recent metabolomic studies. I think Davis, Montoya, Fluge and Mella know a lot more than they can reveal to all of us at the moment. :)
Click to expand...
Gamboa said:
@perrier -- Dr. Davis is about to release the first set of data on his metabolomics study--any day now. He had hoped to be able to present it at the IAME/CFS conference at the end of December but there were some legal hurdles to overcome. This was anticipated to take a few more weeks.

I think it will be exciting news and will add to Dr. Naviaux's and others recent metabolomic studies. I think Davis, Montoya, Fluge and Mella know a lot more than they can reveal to all of us at the moment. :)
Click to expand...
Thanks Gamboa for the info. It's important for patients to know things are moving along. I have every faith in Dr Davis.
I have never ceased being astonished and furious that the world community hasn't been able to mobilize as it did with AIDS.
So many young lives are wasted; so many young folks enduring unimaginable daily agony from the symptoms, from the isolation, from the deprivation of what we healthy folk take for granted: a walk in the fresh air, buying something that delights us, sitting on a terrace drinking coffee, and making plans...
I just can't take watching my daughter's suffering anymore.....or thinking about all those I know or read about enduring the same horror
 
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