Anyone else feeling frustrated with the research efforts?

[wabi-sabi]

Ron Davis did a recent youtube within the last two weeks.

Can you give the link for this? I can't find it.

 

[Rufous McKinney]

Can you give the link for this? I can't find it.

This explains that the two manufacturers approached to make the new nannoneedle device- both are COVID shut down.

 

[wabi-sabi]

Thanks- I always feel so hopeful and inspired when I hear Dr. Davis speak.

 

[ebethc]

This explains that the two manufacturers approached to make the new nannoneedle device- both are COVID shut down.

who are the manufacturers? (2 hrs is too long to sit thru for that info - if it's even in the video )

 

[keepontruckin]

I believe an interview on tv would help a lot. An interviews that discusses the funding dilemma and latest breakthroughs.

 

[lenora]

It's a bit depressing but I suspect if we don't get the same recognition as MS or cancer or motor neurons. We won't actually get anywhere near a cure anytime soon. If you look at how much money time man power went into cancer nevermind covid. It's depressingly clear how bad the issue is.

Hi godlovesatrier......If you think the other two are bad, please check out how much is spent each year on research for MS, and nowhere near the number of people as those suffering from ME.

I hope you're having a good start to the week. Yours, Lenora.

 

[wigglethemouse]

If you think the other two are bad, please check out how much is spent each year on research for MS, and nowhere near the number of people as those suffering from ME.

In the US MS prevalence is around 0.3% or 1MM cases.
https://www.nationalmssociety.org/About-the-Society/MS-Prevalence
https://n.neurology.org/content/92/10/e1029

This is in the range of CDC/IOM prevalence numbers for ME/CFS in the US of 836,000 to 2.5 million
https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html

NIH 2020 predicted spending numbers : MS = $118MM, ME/CFS = $16MM, so way underfunded for similar prevalence
https://report.nih.gov/categorical_spending.aspx

 

[valentinelynx]

Developing a reliable diagnostic test would help further

So, what do you think of this response that Ron Davis got on one of his (rejected by the NIH) grant applications by a reviewer:
"There's no cure for ME/CFS, so why would you want to diagnose it better?"

This is what good scientists are up against—the endless stupidity of bad scientists.

 

[Wishful]

"There's no cure for ME/CFS, so why would you want to diagnose it better?"

I hope there's some sort of "Stupid Remarks of the Year" list that gets sent around to bureaucrats, so that people like that can be properly humiliated by their peers (and thus try to avoid future stupidity).

 

[ebethc]

So, what do you think of this response that Ron Davis got on one of his (rejected by the NIH) grant applications by a reviewer:
"There's no cure for ME/CFS, so why would you want to diagnose it better?"

This is what good scientists are up against—the endless stupidity of bad scientists.

who said that?? I'm just curious about their background.. what they have studies, solved..plus the full remarks from that person would be interesting, too.

 

[wigglethemouse]

"There's no cure for ME/CFS, so why would you want to diagnose it better?"

who said that?? I'm just curious about their background.. what they have studies, solved..plus the full remarks from that person would be interesting, too.

In the ME Action #MillionsMissing day event on Facebook Ron Davis and Janet Dafoe spoke. This is the transcript, I believe it was Janet speaking, referring to a reviewer from the National Science Foundation grant application

46:40
reviews of the grants don't make any
46:42
sense most of the time they're wrong
46:44
they're scientifically wrong recently
46:47
one of them
46:48
this was not an NIH grant but it was one
46:51
of the grants from NSF where they said
46:54
that why do we need to have a diagnostic
46:57
if there's no cure which was the
47:00
ultimate of weirdness

Link to Video

Source: https://youtu.be/2EhTzwJQNOg?t=2800

 

[ebethc]

@wigglethemouse

yes, unfortunately, if there's no drug that some pharma company can make billions of dollars from, then it doesn't exist... it's the ultimate chicken vs egg scenario... monetizing the cure is the endpoint, not curing patients. gee, it's almost like "letting the market decide" doesn't always work! <sarcasm> I'm hoping that one of the positive outcomes of covid is that ppl will see that having a healthy population is crucial for a sound culture (economy, security, to name a couple factors). Up to now, the mentality has been if you're sick it's your fault. e.g., if you have diabetes, cancer, etc., you brought it on yourself. which is sometimes true but not always... the pandemic is clearly not the fault of the sick.

Maybe there is no way to monetize CFS, because, perhaps, the core problem is gut dysbiosis* which takes long-term dietary changes to fix .. it sure seems like the only ppl who get better make radical dietary changes, and maybe find the right supplement stack (including digestive supplements). There's a lot of money going into microbiome science, so one thought that I've had is that the insights for CFS will come from one of those teams stumbling on a "eureka" moment.


* and a genetic predisposition, perhaps... I have the FUT2 gene and MAYBE that is the first domino, but that's just an illustration of what could be the trigger for me .. who knows... a lot of potential reasons for gut dysfunction.
https://metabolichealing.com/fut2-gene-mutations-your-gut-flora/

 

[Rufous McKinney]

who are the manufacturers?

I don't think he said...I just moved the curser on the video until Ron was shown talking...and I didnt listen to the whole thing.

 

[Rufous McKinney]

Thanks- I always feel so hopeful and inspired when I hear Dr. Davis speak.

OMF just announced today a major new effort to fund examining Post-COVID-19 syndromes...and looking at recruitment of new MECFS victims.

This is major and very exciting news.

 

[Celandine]

Here's the OMF Covid19 info I got in an email today. Seems the best way to get funding for anything ME/CFS is to piggyback onto something else. Like Dr. Klimas has done with Gulf War Syndrome--

"We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME/CFS and if it occurs, to study the molecular transformation.

This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME/CFS, as many other viruses serve as triggers for the disease.

The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.

In a significant percentage of patients, severe viral infection preceded their development of ME/CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME/CFS.

It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME/CFS or Fibromyalgia.

After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME/CFS.

A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.

The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."

 

[ebethc]

Seems the best way to get funding for anything ME/CFS is to piggyback onto something else. Like Dr. Klimas has done with Gulf War Syndrome--
...
The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.

exactly... don't even mention CFS or ME.

On a related note: I finally found a helpful doctor, but then reached an impasses b/c when she refers me to specialists, they see in my chart "CFS" so they won't take my case. NEVER label yourself a CFS or ME patient... This is a rookie mistake I made w my current doc b/c I thought that current researchers in the bay area had given credibility to the illness, but it's not true, or, at best, it spotty... One intern I gave my health history to knew all about CFS and believes it's a real illness... He went to Yale medical school, for whatever that's worth...So, always leave CFS out of any communication if at all possible!

 

[Rufous McKinney]

exactly... don't even mention CFS or ME.

Its very clearly stated in the Title of the Research, in the opening description and discussion.

COVID-19 patients CONVERTING TO ME/CFS

I imagine they debated this term Converting...for quite a while.

CURIOUS- really wonder how they will select patients. That will be pretty challenging.

This is a smart move for OMF in my opinion. I hope they can generate more funding.

 

[ebethc]

This is a smart move for OMF in my opinion.

hopefully.

How much is the grant? who gave the money?

 

[Rufous McKinney]

How much is the grant? who gave the money?

I'm not clear on the funding. I thought the announcement suggested- OMF is funding this and will "seek" funding to...keep at it.

I did not see mention of any direct outside grants. (but maybe I just missed it).

 

[JES]

who said that?? I'm just curious about their background.. what they have studies, solved..plus the full remarks from that person would be interesting, too.

You most likely won't find out, reviews for academic papers are usually anonymous and I'd imagine it's similar here, so not even Ron would likely know.