Comment by ipunchghosts | Hacker News Reader

Comment by ipunchghosts | Hacker News Reader

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.

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.

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.

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.

What kind of harm does exercise do? Can you refer to any sources?

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)

not only days, it can be forever.

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

A quick google of "CFS exercise" lead me to few articles, this is the one I'm reading now: https://www.npr.org/sections/health-shots/2017/10/02/5543693...

The information is sourced from the official CDC guidelines on ME/CFS: https://www.cdc.gov/me-cfs/index.html

It leads to worsening of the illness. A CFS patient who goes beyond the boundaries of his energy reservers shrinks these. That leads to smaller and smaller energy reservers, till you can't get out of the bed, sit upright, read longer text, type longer comments.

>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.

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/

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.

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.

There is a certain website that allows you to bypass paywalls, All you need is the doi number.

Thanks!

>> 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?

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.

Amazing!

That was the whole of science before about 1850.

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