NIAID funding to Jackson Laboratory researcher to investigate chronic fatigue syndrome

[Simon]

Are those ICC or CCC samples?

Nominally CCC, but that's based on questionnaire answers with the original diagnosis made by the patient's own doctor (who may or may not be a specialist). Solve recently got a grant to help improve the quality of their biobank (sorry, can't find link) and have told bb patients they may need to provide more info to have a confirmed diagnosis. Such quality control is a good thing, and presumably in future the Solve bb will have patients with more certain diagnosis

No idea how the new cohort will be diagnosed and according to what critieria, but CCC now seems the norm in the US, especially with the NIH using it for its own study.

 

[Ben H]

This is great, but every time I see a new CFS grant from NIH, I think, "More money that could have gone to Ron Davis."

I agree. As exciting as this is (and a step in the right direction), the fragmented nature of grants here and there, especially with the NIH, doesn't fill me with much confidence. Diversity is a good thing, but we need to pull together to solve this, under a solid team looking at ALL areas imo. Findings in isolation i.e. Immunology markers without metabolic information could be really difficult or impossible to fathom the overall picture. The forest for the trees so to speak. And ofcourse, no one can possibly be invested in this as much as Davis.

Extreme motivation? Check
Huge expertise? Check
World class team? Check.
Impeccable study design and goals? Check.


Just give the money to Davis already.

(Hopefully they will collaborate, and share findings, but I just can't help but feel money direct to Davis would be a lot more economical, and far more suited to working out results in the grand scheme of things).

Ultimately though, I'm more excited about what this potentially means (disease being taken seriously etc) than I am about the actual study.

Just my 2cents.

B

 

[BurnA]

This is great, but every time I see a new CFS grant from NIH, I think, "More money that could have gone to Ron Davis."

My comment about the article is this physciain is completely unknown in the ME world. Why would NIAID fund someone who has no idea about case definition and the issues surrounding ME and not fund Dr Davis group?
.

Just give the money to Davis already.

I know it would be great if Ron Davis got more money but we shouldn't be turning a very positive story into a story tinged with negativity.

We need more money and we need more researchers - this ticks both boxes.

Lets hope this is a sign of things to come in terms of funding for Ron Davis and in the meantime lets celebrate this win.

 

[Kati]

I know it would be great if Ron Davis got more money but we shouldn't be turning a very positive story into a story tinged with negativity.

We need more money and we need more researchers - this ticks both boxes.

Lets hope this is a sign of things to come in terms of funding for Ron Davis and in the meantime lets celebrate this win.

Dr Davis has had a chance to meet Dr Whittemore at Invest in ME which is a very good thing. Currently Dr Davis is privately funded (OMF! 5 millions) and hopefully many papers will come out of this. Publishing papers is going to increase the likelihood of them getting NIH grants. They will get there.

 

[Ben H]

I know it would be great if Ron Davis got more money but we shouldn't be turning a very positive story into a story tinged with negativity.

We need more money and we need more researchers - this ticks both boxes.

Lets hope this is a sign of things to come in terms of funding for Ron Davis and in the meantime lets celebrate this win.

Hey @BurnA

I don't mean to be negative. I did state that it's a step forward for sure and a sign that the tide is turning per se.

It just hard to really celebrate it, when THE most impeccably designed study into M.E ever is still relying on public donations, because of a lack of hypothesis (which is exactly the wrong way to go about a disease like this).

We do need more money and more researchers for sure, but I wish it was less fragmented. I think it will hinder progress in the grand scheme of things, than if the same researchers were on Davis's team, for example.

I just hope they can pull all these findings together and not in isolation


B

 

[Tuha]

Ron Davis got currently a lot of attention from ME community. I think we will be able to fund his research with privat money. A lot of patients are sending money to his research and he also got some bigger donors.

 

[Ben H]

Ron Davis got currently a lot of attention from ME community. I think we will be able to fund his research with privat money. A lot of patients are sending money to his research and he also got some bigger donors.

Possibly, but unfortunately that's not the point.

 

[BurnA]

Hey @BurnA

I don't mean to be negative. I did state that it's a step forward for sure and a sign that the tide is turning per se.

It just hard to really celebrate it, when THE most impeccably designed study into M.E ever is still relying on public donations, because of a lack of hypothesis (which is exactly the wrong way to go about a disease like this).

We do need more money and more researchers for sure, but I wish it was less fragmented. I think it will hinder progress in the grand scheme of things, than if the same researchers were on Davis's team, for example.

I just hope they can pull all these findings together and not in isolation


B

I hear you. I agree that if they put Ron Davis in charge of all ME research and ran it like a proper coordinated project it would be great.
Ron is trying to do that himself and if he gets the money I am sure he will be successful.

But if this study, or Lipkins study or any other study shows something worthwhile I am sure Ron Davis will be all over it, so it's no harm that there are multiple strands, as long as all the studies are well designed and managed.

 

[Comet]

Isn't it also true that as more people ask for money, more money is allocated to a particular disease?

ETA - Not sure about this, but I think my foggy brainz read this somewhere.

 

[Tuha]

Possibly, but unfortunately that's not the point.

Why not? If NIH needs at first a hypothesis that´s not the case of Ron´s research. It´s good that the patients dont wait and they took the step forward.

 

[Kati]

Isn't it also true that as more people ask for money, more money is allocated to a particular disease?

ETA - Not sure about this, but I think my foggy brainz read this somewhere.

Congress needs to allocate funds for ME, so if everybody speaking to their Congress representant, it would make a difference. (A great example of this is Congress allocating 1.1 Billions to Zika research. i am not sure if this passed the vote yet, but it is where it is going

Also NIH says there needs to be a lot more grant applications , for which patients and researcher alike says it's an unfair system because the grant reviewers at NIH are biased and believe ME is not a physical illness. With the new and revived trans NIH working group, hopefully this will change.

P.S. i am following my own advice and will be meeting with my own political representant late next week

 

[Justin30]

unology markers without metabolic information could be really difficult or impossible to fathom the overall picture.

Hi Ben,

Not Funding Davis is what needs to be addresed by our ME associations....its a joke that the NIH wont give him money even though they want to make a commitment to us. I am in total agreeance with you on this...Simple

NIH GIVE DR RON DAVIS THE MONEY HE NEEDS!

This study actually I think is really good and may actually bring more merrit along with Lipkins Gut study. We just need the drugs to fix the gut and genes properly. Here is a few points about the study that I think make a lot a of sense and tie into Davis's Fundings:

• Immune hit virus or bacteria causes massive inflamation
• Immune system then turns on itself kind like high inflamation or autoimmunity
• Gut immune cells 70 to 80% sit on the edge of the GUT waiting to defend...when those get impacted bacteria translocation occurs and precipatates inflamation and autoimmunity...
• This immune hit to the body and the GI track messes with flora and and epethial lining deteriorates breaks down. This messes up nutrient absorption.
• Bacteria in the blood stream = endotoxins, neurotoxins and freee radicals ie uncleared waste which in the form of LPS and free radicals blocks the normal procceses of vitamin, mineral, amino acids and essentialy coenzyme conversion to essential bodily nutrients such as seratonin (500+ essential processes in the body tryptophan conversion) for example = this 1 molecule is part of brain, GI, cardio, immune and neurological functions.
• This has already been proven in HIV the breakdown and dybiosis leads to high levels of CD14 in the blood which is bacteria from the GUT particularly this is why some HIV Patients fail to recover.
• Recovered CFS patients talk tons about GUT health.
• This researcher is thinking gut too and by what it says he is working in molecular and immunity side of things including the Gut

One thing I want to make clear is I think there are people that dont have this disease bit have something else that has not fully been explored not by fault of themselves either by their Drs, the med system or a new or unfamiliar disease to the Dr.

This is why in my eyes to have things need to happen:

• symptom clusters need to be defined, subsetted or staged like cancer
• A revision of disease tests needs to occur to add in more Mito, Autoantibody, and new Autoimmune diseases
• POTS reaearchers need to be involved especially autonomic neurologists....this seems on the balance of scales to be a Vagues Nerve problem which feeds in to the Autonomic Nervous system which feeds into the HPA Axis
• Specialists from all areas of medicine need to work in collaboration to treat patients so Neuros, Immunologists, Cardiologist, Gastroenterologists etc all working together on ME not Siloing yhe disease like what is happening at the moment.
• Centers of excellence need to be built to treat, researh and care for patients.

The sooner the money is given in a big way sooner this can happen....

I think the only way to get it to happen sooner than later is to protest as much as possible. Like HIV did...We need to team up with other disease groups to help us or to gain healthy volunteer support. I really think both needs to happen.

Finally we need a famous face and PACE brought out to in the light so that it can be shown for what it is.

Sorry ben verbal dump....I get bored sitting inside not living a life.

 

[dreampop]

Congress needs to allocate funds for ME, so if everybody speaking to their Congress representant, it would make a difference. (A great example of this is Congress allocating 1.1 Billions to Zika research. i am not sure if this passed the vote yet, but it is where it is going

Also NIH says there needs to be a lot more grant applications , for which patients and researcher alike says it's an unfair system because the grant reviewers at NIH are biased and believe ME is not a physical illness. With the new and revived trans NIH working group, hopefully this will change.

P.S. i am following my own advice and will be meeting with my own political representant late next week

Do you have any data/information on grant review bias? I'm trying to find grant approval rates for CFS annually but haven't been able to do so using the NIH data system, which doesn't let you sort by disease.

 

[Kati]

Do you have any data/information on grant review bias? I'm trying to find grant approval rates for CFS annually but haven't been able to do so using the NIH data system, which doesn't let you sort by disease.

Mary Dimmock or Pat Fero, perhaps even Jennie Spotila would know this information, they have kept track. MAry Schweitzer is also another one who has a wealth of knowledge.

 

[dreampop]

Mary Dimmock or Pat Fero, perhaps even Jennie Spotila would know this information, they have kept track. MAry Schweitzer is also another one who has a wealth of knowledge.

Thanks, Kati. I tried e-mailing Pat Fero, but I'm not sure if its an old address. I found it in one of her interviews here.

 

[Bob]

Suzanne Vernon at the Bateman Horne Center writes a blog about the proposed study...
It doesn't include anything particularly new or interesting...

$3.28 Million Awarded for ME/CFS Biomarker Study
https://batemanhornecenter.org/3-28-million-mecfs-biomarker-study/

 

[panckage]

Curious as nobody has mentioned this yet. Why did me/cfs get a grant from National Institute of Allergy and Infectious Diseases. Was there a classification change or something?

 

[dreampop]

Curious as nobody has mentioned this yet. Why did me/cfs get a grant from National Institute of Allergy and Infectious Diseases. Was there a classification change or something?

AFAI all diseases are eligibile from funding from any institute in so far as the study relates to that institute's mission. Most CFS funding comes from NIND, NIAID and Nursing Institute.

 

[Groggy Doggy]

@Ben Howell

I agree, give the money to Ron Davis. We have issues with our mitochondria system, that is what causes ME.. If the NIH gives money ONLY to scientists that are chasing the "immune theory", then in my opinion its a waste of money and will continue to set us back even more years. ME is not AIDS and we have aleady wasted 30 years trying to make ME fit the successful AIDS model.

Ron Davis will find the answer and we need to fully support him.

GD

 

[Kati]

Bateman Horne Center Leadership are Co-Investigators on this Cutting-Edge Immunogenomic Study to Quantify ME/CFS

It looks like Dr Bateman and Vernon's team are co-investigators of that study (providing patients)- read more here:
https://batemanhornecenter.org/3-28-million-mecfs-biomarker-study/