4 ms·

Journalists, this is quite the story. Here you have a bunch of really sick patients with docs around the world saying it's in there head. Then a UK study comes

Journalists, this is quite the story. Here you have a bunch of really sick patients with docs around the world saying it's in there head. Then a UK study comes out (PACE) saying patients should engage in activity to help themselves. This only makes the patients worse and eventually so bad that the study was pulled. In comes dr ron davis. His son acquired me cfs while traveling in india. Completely unsatisfied with the lack of care provided by his doctors, he ventured off to research the disease himself assembling a team of esteemed scientists. They all begin to promptly kick ass and take names making more headway on understanding the disease more than anytime in history. Meanwhile, they have open conferences which are posted on YouTube for patients to watch (and see hope) and other scientists to learn from. Davis and his collaborators discover all sorts of cfs links and debunk a bunch of myths.really interesting research is occurring on trypanosomes, metabolic traps, and the microbiome. Eventually a large signal is found when the cells are stressed and voila, we arrive at the test mentioned in the link. This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing. These folks will eventually win the Nobel, im sure of it.

heavenlyblue 7y ago
>> This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing. So you imply that only scientists with money and direct personal interest in the research are supposed to work on the given topic?
- ipunchghosts 7y ago
  Not at all. What i mean is that scientists discovered a problem and 1) pursued it regardless of what the major funding agencies thought of it 2) encouraged patients to get involved and 3) informed the public of their progress regularly allowing for open discussion and collaboration.
  - cpach 7y ago
    Amazing!
  - heavenlyblue 7y ago
    No wait - the scientist was a father of a person who had the illness, and the father had a team of scientists willing to work on the issue he himself decided to work on. You on the other hand are selling it as if all of those researchers were working for free at the time.
    - nyolfen 7y ago
      you should re-read his comments
    - dc_gregory 7y ago
      I think you've misread the OP here; jump back to this guideline as a rule of thumb, its helped me a great deal. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html: >> Please respond to the strongest plausible interpretation of what someone says, not a weaker one that's easier to criticize. Assume good faith.
- pjc50 7y ago
  That was the whole of science before about 1850.
GordonS 7y ago
Many CFS patients have learned the hard way about the outcome of the PACE study, and many have found the methods of the study itself to be deeply questionable. Even today the NICE guidance and doctors both still recommend exercise - despite many CFS patients having found out the hard way about the damage it can cause. The NICE guidance is currently under review, with new guidance due to be issued in 2020. But appointment of certain panel members has been viewed with hostility by some CFS patients, and it's far from clear whether the new guidance will actually change its stance on exercise.
- nuclx 7y ago
  What kind of harm does exercise do? Can you refer to any sources?
  - ufo 7y ago
    It aggravates the symptoms of CFS (fatigue, pain, headaches, etc). It can last multiple days after exercise. (Source: I know a person who suffers from CFS)
    - bpfrh 7y ago
      not only days, it can be forever.
    - MRD85 7y ago
      I had CFS that originated as a post viral illness after Epstein Barr Virus. The kicker is that I was in the military when this happened. By Tuesday every week, after 2 PT sessions, I was on a downhill slope. If I did a third session on Wednesday it was likely I was spending 5-7 days in bed. I'd been hospitalised for exhaustion. I had every medical test under the sun and everything came back negative except my recent markers for EPV. I was lucky, my OC signed off for me to not to exercise and I didn't do PT for 9 months. During this period my CFS very slowly got better and I appear to be mostly better now. You don't want to get CFS while in Army
  - skinnyarms 7y ago
kens 7y ago
As a cautionary note, consider the Whittemore Peterson Institute for Neuro-Immune Disease. It was founded by parents of a CFS patient to research CFS. In 2006, this institute found the XMRV virus in CFS patients, showing a physical basis for CFS and the potential for a cure. Unfortunately, XMRV turned out to be a lab contaminant, leading to retracted publications, people being fired, and a big mess. Of course, this indicates nothing about the current result, which hopefully pans out.
- ipunchghosts 7y ago
  Humans making mistakes is nothing new. This is why the open medical foundation is so open; other people can critique and replicate the work if desired.
DoreenMichele 7y ago
really interesting research is occurring on trypanosomes, metabolic traps, and the microbiome. Maybe I missed something, but can you point me to some of this? Thanks.
ipunchghosts 7y ago
Wow, this really blew up. Thank you for your support. Consider donating to the open medical foundation which funds a good portion of this research (i did). https://www.omf.ngo/ways-to-donate/ https://www.omf.ngo/ways-to-donate/
SonOfThePlower 7y ago
Best wishes to dr R.Davis and his team - great job! My uncle suffers from Guillaine-Barre Syndrom (GBS) (or rather A-CIDP, but that still needs to be determined). I'm trying to educate myself on GBS and research newest treatment methods, but most resources/articles are paywalled. That does not help.
- Knufen 7y ago
  There is a certain website that allows you to bypass paywalls, All you need is the doi number.
  - SonOfThePlower 7y ago
    Thanks!
travmatt 7y ago
>Then a UK study comes out (PACE) saying patients should engage in activity to help themselves. This only makes the patients worse and eventually so bad that the study was pulled. For those unaware, the PACE study is a famous for exposing the worst aspects of modern medicine. It twisted statistics and definitions to the point that patients whose conditioned worsened were declared cured, they fabricated death threats against themselves to discredit their critics, and are generally notable for the harm they inflicted upon patients and future research into CFS.

heavenlyblue 7y ago

>> This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing. So you imply that only scientists with money and direct personal interest in the research are supposed to work on the given topic?

ipunchghosts 7y ago
Not at all. What i mean is that scientists discovered a problem and 1) pursued it regardless of what the major funding agencies thought of it 2) encouraged patients to get involved and 3) informed the public of their progress regularly allowing for open discussion and collaboration.
- cpach 7y ago
  Amazing!
- heavenlyblue 7y ago
  No wait - the scientist was a father of a person who had the illness, and the father had a team of scientists willing to work on the issue he himself decided to work on. You on the other hand are selling it as if all of those researchers were working for free at the time.
  - nyolfen 7y ago
    you should re-read his comments
  - dc_gregory 7y ago
    I think you've misread the OP here; jump back to this guideline as a rule of thumb, its helped me a great deal. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html: >> Please respond to the strongest plausible interpretation of what someone says, not a weaker one that's easier to criticize. Assume good faith.
pjc50 7y ago
That was the whole of science before about 1850.

GordonS 7y ago

Many CFS patients have learned the hard way about the outcome of the PACE study, and many have found the methods of the study itself to be deeply questionable. Even today the NICE guidance and doctors both still recommend exercise - despite many CFS patients having found out the hard way about the damage it can cause. The NICE guidance is currently under review, with new guidance due to be issued in 2020. But appointment of certain panel members has been viewed with hostility by some CFS patients, and it's far from clear whether the new guidance will actually change its stance on exercise.

nuclx 7y ago
What kind of harm does exercise do? Can you refer to any sources?
- ufo 7y ago
  It aggravates the symptoms of CFS (fatigue, pain, headaches, etc). It can last multiple days after exercise. (Source: I know a person who suffers from CFS)
  - bpfrh 7y ago
    not only days, it can be forever.
  - MRD85 7y ago
    I had CFS that originated as a post viral illness after Epstein Barr Virus. The kicker is that I was in the military when this happened. By Tuesday every week, after 2 PT sessions, I was on a downhill slope. If I did a third session on Wednesday it was likely I was spending 5-7 days in bed. I'd been hospitalised for exhaustion. I had every medical test under the sun and everything came back negative except my recent markers for EPV. I was lucky, my OC signed off for me to not to exercise and I didn't do PT for 9 months. During this period my CFS very slowly got better and I appear to be mostly better now. You don't want to get CFS while in Army
- skinnyarms 7y ago

kens 7y ago

As a cautionary note, consider the Whittemore Peterson Institute for Neuro-Immune Disease. It was founded by parents of a CFS patient to research CFS. In 2006, this institute found the XMRV virus in CFS patients, showing a physical basis for CFS and the potential for a cure. Unfortunately, XMRV turned out to be a lab contaminant, leading to retracted publications, people being fired, and a big mess. Of course, this indicates nothing about the current result, which hopefully pans out.

ipunchghosts 7y ago
Humans making mistakes is nothing new. This is why the open medical foundation is so open; other people can critique and replicate the work if desired.

DoreenMichele 7y ago

really interesting research is occurring on trypanosomes, metabolic traps, and the microbiome. Maybe I missed something, but can you point me to some of this? Thanks.

ipunchghosts 7y ago

Wow, this really blew up. Thank you for your support. Consider donating to the open medical foundation which funds a good portion of this research (i did). https://www.omf.ngo/ways-to-donate/ https://www.omf.ngo/ways-to-donate/

SonOfThePlower 7y ago

Best wishes to dr R.Davis and his team - great job! My uncle suffers from Guillaine-Barre Syndrom (GBS) (or rather A-CIDP, but that still needs to be determined). I'm trying to educate myself on GBS and research newest treatment methods, but most resources/articles are paywalled. That does not help.

Knufen 7y ago
There is a certain website that allows you to bypass paywalls, All you need is the doi number.
- SonOfThePlower 7y ago
  Thanks!

travmatt 7y ago

>Then a UK study comes out (PACE) saying patients should engage in activity to help themselves. This only makes the patients worse and eventually so bad that the study was pulled. For those unaware, the PACE study is a famous for exposing the worst aspects of modern medicine. It twisted statistics and definitions to the point that patients whose conditioned worsened were declared cured, they fabricated death threats against themselves to discredit their critics, and are generally notable for the harm they inflicted upon patients and future research into CFS.