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Ron Davis featured in "nature" journal of science article

Esther12

Senior Member
Messages
13,774
Amy Maxmen is a former mentee of mine and it's great to see her do good work like this. She recently started working for Nature out of the Bay Area after covering Ebola in West Africa and other daring adventures. She's a good reporter who is now in the front door as more findings emerge. Oh, and Nature is based in London and has a big sway in the UK science community. The sound you hear is the Science Media Centre getting nervous (I hope). ☺

That'll explain the impression I got!

I remember thinking that Nature has been particularly bad for us in the past.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Amy Maxmen is a former mentee of mine and it's great to see her do good work like this. She recently started working for Nature out of the Bay Area after covering Ebola in West Africa and other daring adventures. She's a good reporter who is now in the front door as more findings emerge.

Well done to Amy.

Maybe, with her background and contacts, she would be interested in exploring post-Ebola syndrome in the context of its similarity with ME? I think there are some moving and important stories to tell about post-Ebola syndrome. Nath, for example, may have insights.
 

viggster

Senior Member
Messages
464
Well done to Amy.

Maybe, with her background and contacts, she would be interested in exploring post-Ebola syndrome in the context of its similarity with ME? I think there are some moving and important stories to tell about post-Ebola syndrome. Nath, for example, may have insights.

Maybe, although there'd have to be some research to base a story on. Perhaps the NIH study Nath is running will provide that. Amy wrote this piece about Ebola survivors, which is fascinating:
http://www.slate.com/articles/healt...rra_leone_who_conference_and_how_to_help.html
 
Messages
84
this is great news, good article.
I wish it all had some influence on changing the narrative in the UK though.
Perhaps it will, eventually but we have MUS pulling us in the opposite direction.

But this is great.

The movie ''Unrest'' has done loads to change the narrative in Denmark already. It is actually quite incredible. A lot of people whom I know and who had previously never heard about CFS have read about the movie in some very well written articles.

I feel like the movie could have an even bigger impact in Britain.

Not only this but if the Norwegian Ritux studies turn out good this fall, it could really be a massive game change for the disease in Europe regarding the narrative.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
No CFS or SEID - a totally new name based on the new biomarker. This is how other similar chronic diseases have gotten traction.
A biomarker changes it all. SEID would merely be temporary for countering CF and babble claims, it would never be a permanent thing. Given there are several biomarkers under investigation I do not know if we would even have time to get SEID out there to most doctors before we had to change it again.
 
Messages
46
Ooh, brilliant! :):thumbsup: Reading this gave me full body goosebumps! :nerd:

Here is Nature's tweet ("like", reply, retweet!):

And Nature's Facebook post ("like", comment, share!):
https://www.facebook.com/NatureNews/posts/1430281343709037

Please remember to add the link to OMF's "Donate now" page, when you share this article or post comments :)
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/


This is AMAZING news and could potentially change the landscape of Medicine. Also seeing reports in the press linking Alzheimers, Autism and Motor Neurone Disease to the gut biome.

Ironically CFS sufferers are amongst the canary's whom could finally shake up the medical profession into realising that degenerative diseases such as CFS are not in the head but rather they are real.
 

Murph

:)
Messages
1,799
I'm excited by the news of Lipkin's impending gut bacteria study. The gut is just so intrinsic to this disease in my experience. I can draw a direct line from eating the wrong stuff (e.g a huge garlicky meal at a chinese restaurant for mate's birthday last friday) to feeling very drab in the subsequent days.

And I'm also excited about gut bacteria as a source of improvements because there has been a lot of work recently on FMT. For example, Australian scientist Tom Borody recently published a protocol for FMT that seems to make it effective in reducing symptoms of autism.

One big change is he puts a huge amount of effort into cleaning out the gut beforehand, including antibiotics, fasting and that laxative stuff you take for a colonsoscopy. Then the FMT itself is recurring, not a one-off:

"The protocol involved 14 days of therapy with oral vancomycin followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep. On day 16, to repopulate gut microbiota, a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach."

I'm interested in how soon Lipkin's paper will come out? This line from the story makes it seem imminent: "(D. Nagy-Szakal et al. Microbiome; in the press)"

:)
 

RogerBlack

Senior Member
Messages
902
This is AMAZING news and could potentially change the landscape of Medicine. Also seeing reports in the press linking Alzheimers, Autism and Motor Neurone Disease to the gut biome.

Ironically CFS sufferers are amongst the canary's whom could finally shake up the medical profession into realising that degenerative diseases such as CFS are not in the head but rather they are real.

I question how much this actually means.
Not the changes, but the clinical meaning.

If the gut biome was wiped out completely and recolonised with a healthy one (never mind that this is impossible for the forseeable future), would there even be a transitory effect on many diseases, never mind long-term ones.
Changes in gut secretions or diet, or bowel musculature, or activity patterns will all change the biome.
This doesn't mean in many diseases that changed biome is anything other than a marker.
Might in some it cause (through secretions of the bacteria) a condition to continue - certainly.

But taking the position that it's 'magic' and will lead to cures seems as logical as expecting finding a way to make hair brown again after growing grey will reverse all other signs of aging.
 
Messages
46
I question how much this actually means.
Not the changes, but the clinical meaning.

If the gut biome was wiped out completely and recolonised with a healthy one (never mind that this is impossible for the forseeable future), would there even be a transitory effect on many diseases, never mind long-term ones.
Changes in gut secretions or diet, or bowel musculature, or activity patterns will all change the biome.
This doesn't mean in many diseases that changed biome is anything other than a marker.
Might in some it cause (through secretions of the bacteria) a condition to continue - certainly.

But taking the position that it's 'magic' and will lead to cures seems as logical as expecting finding a way to make hair brown again after growing grey will reverse all other signs of aging.

Not quite 'magic' - but rather just a step in the right direction. Scientists will now focus more energy on researching the link between illness and gut micro biome. My hope is that it will mark a shift from the more traditional routes of enquiry with regards to illnesses like CFS and finally focus minds on the root causes of this illness which often (but not always) begins in the gut.

I was speaking to someone recently who is currently in remission from CFS and she had been seeing a well known Environmental Doctor in the UK who also strongly believes that amongst a number of her patients gut micro biome and environmental stresses hold the key to her helping them recover. So you can see the benefit of developments like this in beginning to focus the general populations mind in the importance of protecting the gut microbiome at all costs to prevent illness in the future.
 

RogerBlack

Senior Member
Messages
902
So you can see the benefit of developments like this in beginning to focus the general populations mind in the importance of protecting the gut microbiome at all costs to prevent illness in the future.

No.
I can see that for some illnesses it may be an issue.
It has recently become easily measurable - hence it's being measured.
Correlations are being found, and little is understood about the direction of those correlations.

Should the above study be done - certainly - as it should be done for many chronic conditions.
Some of them may improve, some may get worse, and some may be unchanged.

You are assuming with no evidence something correlated to CFS is causative.

I expect the same sort of burst of papers when viral sequencing becomes possible for all the currently unsequenceable viruses in the gut, bacteriophages, antibodies and the transcriptome. Just because you can measure something and find correlations does not mean those things are what causes a disease.
Severe CFS is correlated with lying down a lot. It's not caused by lying down.
(I note I've donated to the above study)
 
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Messages
46
No.
I can see that for some illnesses it may be an issue.
It has recently become easily measurable - hence it's being measured.
Correlations are being found, and little is understood about the direction of those correlations.

Should the above study be done - certainly - as it should be done for many chronic conditions.
Some of them may improve, some may get worse, and some may be unchanged.

You are assuming with no evidence something correlated to CFS is causative.

I expect the same sort of burst of papers when viral sequencing becomes possible for all the currently unsequenceable viruses in the gut, and bacteriophages. Just because you can measure something and find correlations does not mean those things are what causes a disease.
Severe CFS is correlated with lying down a lot. It's not caused by lying down.
(I note I've donated to the above study)


Understood, however my point is that on an individual level people can now take further responsibility for their health by educating themselves and refusing to do things which compromise their gut i.e. over use of antibiotics and vaccines, understanding of the effects of food/ drugs on their body ecology. That for me is the real victory.

As a young student (who originally started studying medicine before switching discipline), I allowed myself to be over medicated with anti-biotics for every simple ailment under the sun. As a child my GP used to prescribe me with antibiotics for even a common cold. Add to the mix synthetic hormones (the pill) and NSAIDs for my monthly bouts of horrific period pain (fibroids and endometriosis) and the other hormone repressing drugs I have had to take, the surgery and multitude of other life events as a child / young adult , had I understood then the interaction of my body i.e. specifically gut and the stresses and strains placed on my body, I would have advocated for myself better.

So my point is that the sooner that this sort of information enters the mainstream, the more hesitant (some) people will be to do things which compromise their gut biome. It will be years before scientists will be able to understand the true nature of illness as it relates to our gut and even then I suspect that some scientists will attempt to find an angle from which they can exploit their research in order to fund and profit from it. In the mean time I hope that people take a greater interest in their health.

I will finish on the following example - 30-40 years ago in Boarding Schools in England pupils were forced to smoke as it was allegedly good for them and prevented fever/ colds. Fast forward to today and the population knows better.
 

Molly98

Senior Member
Messages
576
The movie ''Unrest'' has done loads to change the narrative in Denmark already. It is actually quite incredible. A lot of people whom I know and who had previously never heard about CFS have read about the movie in some very well written articles.

I feel like the movie could have an even bigger impact in Britain.

Not only this but if the Norwegian Ritux studies turn out good this fall, it could really be a massive game change for the disease in Europe regarding the narrative.

This is really good to know @Rick Sanchez, thank you for posting this it lifts my spirits.
 

Solstice

Senior Member
Messages
641
No.
I can see that for some illnesses it may be an issue.
It has recently become easily measurable - hence it's being measured.
Correlations are being found, and little is understood about the direction of those correlations.

Should the above study be done - certainly - as it should be done for many chronic conditions.
Some of them may improve, some may get worse, and some may be unchanged.

You are assuming with no evidence something correlated to CFS is causative.

I expect the same sort of burst of papers when viral sequencing becomes possible for all the currently unsequenceable viruses in the gut, bacteriophages, antibodies and the transcriptome. Just because you can measure something and find correlations does not mean those things are what causes a disease.
Severe CFS is correlated with lying down a lot. It's not caused by lying down.
(I note I've donated to the above study)

Well, I can give you my own experience with diets and with gut abnormalities. About 2 years back I was slowly getting better with treatment, then that summer I felt a huge decline in health. So much so that I was pretty much lying on the couch all day. At that time my stool samples were frequently checked, at the beginning of the year everything was fine. Had another check after becoming so ill and it turned out streptococcus and especially bacteroides were festering in my small intestine. I've been getting treatment for that and slowly and steadily getting beter since up to the point I've been doing walks, playing with my nieces and nephew, visiting Ikea(lot's of chairs there :D ) etc. I'm far from cured but the bacteroides are now under control leaving the streptococcus and my health has improved over the past 2 years.

As for my diet I can only say that eating outside my diet gives me all sorts of issues from being very tired to poor sleep to feeling very restless/pain/anxiety depending on what types of food I eat. I'm avoiding gluten, fructose and lactose btw after a battery of tests.