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Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

dannybex

Senior Member
Messages
3,564
Location
Seattle
Do you have any good resources on how to connect with a Billionaire philanthropist?

Glenn Hutchins is the co-founder of Silver Lake Partners, a $26 billion private equity firm. He is also a partial owner of the Boston Celtics. His son has CFS, and he started a foundation several years ago (mentioned on PR) to raise funds for research:

http://cfinitiative.org/about-the-initiative

And here's a gentleman from the UK, a billionaire who claims 11 family members have Lyme's disease. Yes, not ME/CFS, but who knows...?

http://www.dailymail.co.uk/news/art...sease-believes-s-passed-people-NOT-ticks.html
 

arewenearlythereyet

Senior Member
Messages
1,478
I don't think we know yet, but perhaps the dysfunction is more of a spectrum than a simple on/off scenario. For example, in the latest Fluge and Mella study they found that PDK1 expression related to disease severity.
Perhaps it's like overloading an electrical circuit in your house. Some people slowly turn on a toaster, a light bulb, then might try a blender and slowly they overload the circuit until it goes bang, whereas others may just plug in 20 Marshall amps and switch it on for a quick boom!!
 

Tuha

Senior Member
Messages
638
from the transcription:
"And it’s possible that if they’ve tried to “push through” that illness, too early, that’s what’s caused them to continue to have the disease. In other words – the “crashing” reinitiates the disease, over and over again. And that’s what keeps them in it, year after year"

This is what I ask myself - if we dont push all the time through the limits maybe we could slowly recover. I read some recovery stories and the basic was that the patients avoided crashes and were very disciplinated to dont push themself through the limits. But it´s really difficult to dont go through your limits with this disease
 

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Glenn Hutchins is the co-founder of Silver Lake Partners, a $26 billion private equity firm. He is also a partial owner of the Boston Celtics. His son has CFS, and he started a foundation several years ago (mentioned on PR) to raise funds for research:

http://cfinitiative.org/about-the-initiative
Reading through the details they've funded some of Lipkin and Hornig's work at the Centre for Infection and Immunity.

I guess priorities are different for the mega rich though.

The couple's education philanthropy is highlighted by their support of Hutchins' alma mater, Harvard. The school received a $30 million gift in 2012 to support academic initiatives in the Faculty of Arts and Sciences
.....
CFI received at least $3.35 million in the two most recent tax years for which records are available.

From https://www.insidephilanthropy.com/...us-a-look-at-glenn-hutchins-philanthropy.html

Imagine what research could have been done with the $30 million...
 

Aroa

Senior Member
Messages
109
Location
Spain
For the purpose of Fundraising, wouldn´t it be good to have a video telling different stories from people around the world ?.

There are many touching ones !!!!, and IMO it is not the same reading than watching and feeling it. It would be easier to share it on Facebook , youtubers, and try to reach famous , billionaire people, ....

Of course we need someone who may help in doing it.o_O
 

Diwi9

Administrator
Messages
1,780
Location
USA
@Tuha - I saw something (video/article?...sorry brain fog) with Dr. Jose Montoya recently and he talked about when people improve on antivirals how important it is to rest and then rest some more even after one starts to feel better. It's hard to delay gratification when you've been in bed and bored for a long time.

Two problems specific to ME/CFS: 1) We cannot improve ourselves by pushing limits (which is counter to every Western cultural adage); 2) We cannot listen to normal body signals, as feeling better doesn't mean you actually have energy...it just means you feel better. We seem to only have a "feel good/feel bad" switch, but we need an energy meter!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@Tuha - I saw something (video/article?...sorry brain fog) with Dr. Jose Montoya recently and he talked about when people improve on antivirals how important it is to rest and then rest some more even after one starts to feel better. It's hard to delay gratification when you've been in bed and bored for a long time.

Two problems specific to ME/CFS: 1) We cannot improve ourselves by pushing limits (which is counter to every Western cultural adage); 2) We cannot listen to normal body signals, as feeling better doesn't mean you actually have energy...it just means you feel better. We seem to only have a "feel good/feel bad" switch, but we need an energy meter!
Dr Myhill also talks about rest a lot. In my mito profile testing I had done with her she said I was IN THE CATEGORY WHERE ACRTIVITES OF DAILY LIVING CAUSE ME (sorry caps loc, not shouting) to crash. I'm not bedbound, but just getting dressed and washed, making breakfast and clearing a couple of plates of the table is enough to send me back to bed. I cant live permanently in bed - its too depressing. And when I feel a little better I need to go out and look at the sea or be taken for a walk in my wheelchair and even to go on holiday, even if it means crashing. Otherwise I may well have had to end my own life by now.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
  • The notion that "pushing through" adversities could be what proves the tipping point for people's energy management mechanisms, and maybe pushing them erroneously into this damage-limitation mode. Interestingly - could this be why women are statistically more likely to suffer from ME? Whether us fellahs like the idea or not, I bet that - though there will be plenty of exceptions to the rule - statistically there will be more women than men who habitually push themselves hard to get through infections, whilst looking after the kids, getting them to school ... and in many cases still looking after their man too! What a real irony that would be for the BPS brigade: That the very thing triggering and perpetuating ME/CFS, is because people do not have false illness beliefs, and are determined to not let it beat them! And so GET actually enforces a "GET Sicker" regime, thanks to a little knowledge (and lots of arrogance) being a dangerous thing.

I ignored disabling fatigue from age 13-17 because I thought it was just depression or just how my life was. It was the exact opposite of frickin somatization.
 
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Diwi9

Administrator
Messages
1,780
Location
USA
@justy - I understand. I parcel my outings and have to plan recovery as they always seem to end up in a crash these days. I'm also looking for new low energy activities, my latest idea is weaving a mohair cinch (girth strap for Western style saddle).
 

BurnA

Senior Member
Messages
2,087
Dr. Davis says around 2:30 into the interview that most of the signal was filtered out during their filtration experiment.

Hence, it could be a protein.

But why would only 'most' of the signal be filtered out and not all of it?
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
from the transcription:
"And it’s possible that if they’ve tried to “push through” that illness, too early, that’s what’s caused them to continue to have the disease. In other words – the “crashing” reinitiates the disease, over and over again. And that’s what keeps them in it, year after year"

This is what I ask myself - if we dont push all the time through the limits maybe we could slowly recover. I read some recovery stories and the basic was that the patients avoided crashes and were very disciplinated to dont push themself through the limits. But it´s really difficult to dont go through your limits with this disease

IME the Bruce Campbell "80% solution" approach doesn't work because when I lower my activity my overall capacity/ceiling also actually shrinks/lowers pretty quickly. I don't think it's muscular deconditioning but some sort of internal activity thermostat somehow. It seems to be use it or lose it in my case.

OTOH if I were to be *extremely* precise and always do 95-100% as opposed to say 95-110% - who knows? I'm too ill for that to be possible now. IMO though chronic ME is the physiological state when no amount of rest will switch off the Naviaux alarm response.
 
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Jan

Senior Member
Messages
458
Location
Devon UK
from the transcription:
"And it’s possible that if they’ve tried to “push through” that illness, too early, that’s what’s caused them to continue to have the disease. In other words – the “crashing” reinitiates the disease, over and over again. And that’s what keeps them in it, year after year"

This is what I ask myself - if we dont push all the time through the limits maybe we could slowly recover. I read some recovery stories and the basic was that the patients avoided crashes and were very disciplinated to dont push themself through the limits. But it´s really difficult to dont go through your limits with this disease

This is why I think children are more likely to recover, they have parents taking care of them. For me, not pushing myself would require a full time carer, a cleaner, housekeeper and secretary. Just the basics of keeping myself clean and fed require pushing myself too far. It sounds like pwme need hospitalization with bed rest, or full time carers in order to recover from the early stage.
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
I know this is not the answer for everyone but i do think we need to sit back and let the OMF figure out what exactly is going on before we try devising hail mary treatments. They know what they are doing and they have research resources no one else has so they can do much more then we can, so as hard as it is to sit on our hands we should let them figure out and confirm what is actually going on (and why) then use our talents to devise treatments. Just my opinion.

And so GET actually enforces a "GET Sicker" regime
Very quotable.
I wish i had known i had this condition years earlier, i kept trying to push as hard as i could because i had no reason not to, i had to survive at any cost and doing this has cost me dearly. Things may have been different if i had known what not to do earlier, but many doctors have no idea about this condition and others push CBT/GET garbage :(
 

Marc_NL

Senior Member
Messages
471
In the transcript it says:
it may be that a single dose will cure you

That's not something that inspires "big pharma" in developing a new drug so let's hope it already exists.
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
from the transcription:
"And it’s possible that if they’ve tried to “push through” that illness, too early, that’s what’s caused them to continue to have the disease. In other words – the “crashing” reinitiates the disease, over and over again. And that’s what keeps them in it, year after year"

This is what I ask myself - if we dont push all the time through the limits maybe we could slowly recover. I read some recovery stories and the basic was that the patients avoided crashes and were very disciplinated to dont push themself through the limits. But it´s really difficult to dont go through your limits with this disease

I've read similar GET recovery tales though...
https://www.theguardian.com/society...ried-alive-victim-of-chronic-fatigue-syndrome
Independently of Noakes, White was developing similar ideas about chronic fatigue. He doesn’t call it a central governor, but he too believes that a combination of triggers – genetic, environmental, psychological – overwhelms the body and throws the nervous system out of balance, causing the brain to reduce massively what it considers a safe level of exertion. To try to reverse the change, he developed with colleagues an approach called graded exercise therapy (GET), which is intended to work like an ultra-gentle form of interval training.

The idea is to set a baseline of activity that the patient can maintain safely, then gradually increase it. Each step has to be small, so as not to risk a relapse.
…..

She kept an activity diary and as the months progressed she was able to do more. “Walk two minutes around the block,” she recalls. “Then walk three minutes. But walking five minutes might put you in bed for three weeks.” She had to stick to the regime, doing no more and no less than the prescribed activity level, no matter how good she was feeling.

If she pushed herself too hard, she would crash. “It takes incredible discipline,” she says. “One slip-up and you are back to square one.” If she broke the rules and tried to do too much, she would start to feel her body go. “I’d feel hot from the feet up, almost like I was being poisoned. Then I’d be ruined for weeks.”

It took five years of grim determination, but she finally clawed her way out of the fatigue and back into a normal life.

This is not that different from pacing. Neither works for me.
 
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