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    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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Poll: What Gives You the Most Hope for a Cure?

What gives you the most hope for a cure?

  • Dr Ron Davis and OMF

    Votes: 36 53.7%
  • Dr Fluge and Dr Mella

    Votes: 7 10.4%
  • Dr John Chia

    Votes: 1 1.5%
  • Dr Jose Montoya and Stanford

    Votes: 0 0.0%
  • Dr Kenny De Meirlier

    Votes: 2 3.0%
  • Dr Dan Peterson and WPI

    Votes: 0 0.0%
  • Advocacy leading to increased research funding

    Votes: 0 0.0%
  • Funding and recognition by NIH and Francis Collins

    Votes: 1 1.5%
  • General advancements in medical research and science

    Votes: 7 10.4%
  • Demise of the PACE trial

    Votes: 1 1.5%
  • The Singularity

    Votes: 0 0.0%
  • Spirituality / Religion

    Votes: 0 0.0%
  • Lasting spontaneous remission in yourself

    Votes: 1 1.5%
  • Lasting remission in yourself due to an existing treatment

    Votes: 0 0.0%
  • Research by Hemispherx

    Votes: 0 0.0%
  • A general nonspecific feeling of hope

    Votes: 1 1.5%
  • I have no hope for a cure at this time

    Votes: 5 7.5%
  • Something else (mention in comments)

    Votes: 2 3.0%
  • Discovery via experimentation by someone on PR

    Votes: 0 0.0%
  • Medicine from an advanced extraterrestrial civilization

    Votes: 3 4.5%

  • Total voters
    67
Messages
2,158
A hard one to answer - none of us can know where advances will come from. It might have been better to make this a survey where we could choose more than one item. I hesitated over funding, PACE demise, Ron Davis and other researchers, and ended up choosing the most general item General advances....
 

NelliePledge

Senior Member
Messages
807
I struggle with understanding all the science my feeling is that the effect Ron Davis has had iis much wider than his work with OMF. Seems to be giving a new impetus
 

keenly

Senior Member
Messages
814
Location
UK
None of them, Dr Cheney was doing the best work IMO, but I respect anyone looking to help those suffering.
 

RogerBlack

Senior Member
Messages
902
I question if anything on the list in terms of research is meaningful.
There is no current research at all into a cure. The closest we've come is the Rituximab and friends trial, but that is a very blunt instrument with dangerous possible side-effects (including the odd fatality).

At the moment, to use a bad analogy, we're taking apart the dashboard of a car, because all these lights started going off after the engine failed.
Chasing it down and finding the actual fault in the engine is going to take some time.

There is clear mitochondrial dysfunction.
In order to get a 'cure' for a subset of people who seem to have 'CFS', we need to probably work out in detail the biochemistry of what is happening now. Then work out in detail the biochemistry of what went wrong in order to cause this cascading failure. Then find some candidate stage(s) in which we can intervene. Then design drugs for those. Then test the drugs.

We're in the middle of the first stage.
With my rational head on, I find it really hard to believe that we can get to 'design a drug' stage in 5 years, and then an available drug in 15.

The only hope before then is if existing drugs are found to be reasonably safe and effective.

Of course - I mentioned subset of people above.
It is quite likely IMO that in the middle of the above analysis, it turns out that CFS is really two or three or twenty diseases all with similar presentation, some or all of which may need different treatment.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
The poll results are clear and most likely correct.
OMF are made up of some of the best minds medicine has to offer, if we could get them the $5 million a year they need we will all be better off for it
 

Old Bones

Senior Member
Messages
808
None of the options entirely accommodated my thoughts. Ron Davis and OMF are major players, as are the other esteemed ME researchers. But, no one individual or team is likely to solve the puzzle on their own.

I'd vote for: "Collaboration among ME-specific and other medical researchers at various facilities worldwide."
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
On second thought, can I add 'the zombie apocalypse'.
well played :lol:
I have thought of this as well, if i were a zombie i would be better off then i am today. Perhaps the Umbrella Corporation can save us :woot:

That said alien technology or just capturing some time traveling Starfleet doctors would be quite helpful. I'm sure the tricorder is calibrated to read ME/CFS and they would have the necessary hypospray in their medkits :nerd:
 

Jo Best

Senior Member
Messages
1,032
I'd vote for: "Collaboration among ME-specific and other medical researchers at various facilities worldwide."
I second that and I believe that UK-based charity Invest in ME Research has made a great contribution to instigating and facilitating this since their first international ME conference in 2006 (IIMEC*) and adding the biomedical research into ME colloquium (BRMEC*) where the researchers can scratch their heads together :) I feel quite sure the researchers would agree with this because they keep returning to the London events year on year and there is evidence of initiatives and collaborations that have sprung from these meetings of their minds. http://investinme.eu/index.shtml
 

pamojja

Senior Member
Messages
2,384
Location
Austria
Voted "A general nonspecific feeling of hope" with a lot of ambivalence and in lack of alternatives.

The reason is I just reversed the disability of a 8 year of a chronic allegedly non-reversible disease all naturally.

Then I came across this:



During the course of the study, Kelly identified more than seventy-five factors that cancer survivors said they used as a part of their healing journey. Nine of these factors were used by almost every one of them. They are as follows:

1. Radically change the diet
Let your food be your medicine, and medicine your food (Hippocrates)
- Avoid sugar, meat, dairy products and processed foods
- eat lots of fruits and vegetables
- limit to organic food
- drink only filtered water

2. Take control of health
Action is the basic key to success (Pablo Picasso)
- actively participate
- be prepared for change
- resolve resistance

3. Follow your own intuition
In vital matters, the decision should come from the unconscious, somewhere from within (Sigmund Freud)
- listen to body signals
- activate the intuition
- find the right change

4. Take herbs and food supplements
The art of healing comes from nature and not from the physician (Paracelsus)
- help digestion: digestive enzymes, prebiotics and probiotics
- boost the immune system: e.g. Vitamin C, other vitamins (B12, D3, K2), fish oil, trace elements, certain edible fungi, aloe vera; and hormones (melatonin)
- detoxify the body:
- antimycotics (eg olive leaf extract, celery, nettle)
- antiparasitic substances (eg wormwood, yellow root, black nut husks)
- antibacterial and antiviral (eg garlic, oregano oil, Pau d'Arco)
- liver detoxification (eg milk spotted dwarf, dandelion root, sweet tooth root)
- supplements alone is not enough

5. Release oppressed emotions
Anger is an acid which can cause much greater damage to the vessel in which it is stored than to what it pours (Mark Twain)
- disease is blockade
- what are suppressed emotions?
- stress and cancer
- anxiety and cancer
- the waterfall solution

6. Enhance positive emotions
The meaning of life is to be happy (Dalai Lama)
- what are positive emotions?
- what are the positive emotions in the body?
- happiness must be practiced daily
- but one does not have to be permanently happy

7. Allow social support
In poverty and misery, friends are the only refuge (Aristotle)
- experience love- do not feel alone
- physical contact

8. Deepen the spiritual connection
This is the greatest mistake in the treatment of diseases: that there are doctors for the body and physicians for the soul, where both can not be separated (Plato)
- experience sprituality
- a third kind of love
- the relationship between the physical and the spiritual
- it is important to exercise regularly
- it is important to calm the mind

9. Have strong reasons for life
People say that it is the meaning of life that we all seek. I do not believe that this is what we are really looking for. I believe what we are looking for is an experience of being alive ... (Joseph Campbell)
- place deep trust in his inner being
- the mind directs the body
- find ones calling

http://www.radicalremission.com/

Though I'm aware that many will feel resistance to many of its points, since everyone of us has been told 'its all in your mind', I also have to admit that such an all-encompassing approach was which helped in my 'purely' physical and overcome non-reversible disease.

So if even cancer and other non-reversible diseases can be overcome by stepping completely out of one's box - as it was in my experience already too - why couldn't that be possible with ME/CFS too?
 

otherworldly

very severe
Messages
36
toss up b/w ron davis & et's, but i voted Medicine from an advanced extraterrestrial civilization only b/c i feel it is they who truly know whats going on w/us. in all seriousness. i 've spent my free time these past few yrs exploring exo-politics & such & i've recently concluded that this disease, rather, the mechanism that has turned on & is "stuck" on in this disease, very well may b a result (a very unfortunate result) of humans having been genetically tinkered w/by ET's (since i believe all humans originate from various ET's species & this planet has been terraformed).

so called "junk" DNA is really from ET origin so, this makes perfect sense 2 me

as a side note, i find also it interesting that davis is a geneticist having worked on the human genome project...& perhaps there is some ineffable link & the ET's r subconsciously assisting davis w/the intel, as if they r working 2gether, telepathically, subconsciously, idk....but aside from all the ET stuff, which will certainly b considered ridiculous unscientific psycho babble 2 most, i truly believe ron davis & team r gonna unravel this in a very deep way.

most ppl laugh & may call this gibberish, but as i said, i've been deeply ensconced w/this notion. (& i have a strong medical/science background 2 boot) theres so much more i can say about this but i don't feel most ppl r ready....& i'm far 2 weak 2 get in2 it. over & out .
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
Can you vote for more than one? My answer (re: my own case) is a combination of what is found by OMF and Fluge & Mella/Rituximab. I'd really have to vote for both to give my full answer!
 

rosie26

Senior Member
Messages
2,446
Location
NZ
All good research looking into different aspects of this disease gives me hope. Not just one or two researchers. We need lots of good researchers and we need to support and encourage them all so that we can find all the puzzle pieces as quickly as possible.
 

Murph

:)
Messages
1,799
I've slowly come to the view that some people on these boards might be inclined to place an excess of faith in one person. I know why they might. When you see a scientist from a prestigious institution, with a great track record, whose motivation is second to none, who seems like an absolutely terrific person and looks like an iStock photo of a brilliant and revered scientist, i's comforting to believe in him.

This is classic cognitive bias of the 'base rate fallacy' kind. It's a very big world. Take a Bayesian approach. If there are hundreds of groups working on metabolism problems world wide, the odds you can point to one and say that's the one that'll make a breakthrough are low.

[This type of anaysis can be equally applied to people who think one virus/molecule/treatment is likely to be the sole and single key.]

Most of the money is in cancer. I sort of suspect the big discovery that cures us is most likely to come from an oncology researcher nobody's heard of. And I think this is reason to hope, not reason to despair.

(FWIW I've given a chunk of money to OMF. But that doesn't mean I think they're the only ship in the armada.)