List of Tests for End ME/CFS Project's Big Data Study - Phase 1

[BurnA]

I like the idea of the amazing sounding OMF expert panel being able to brainstorm ideas unhindered by NIH beaurocracy and politics, so personally I think they really need to maintain their independence or only work together in a limited way.

Its not about independence, nobody is suggesting anything of the sort, and i dont think anyone wants to see OMF anything other than being independent.

Its about solving ME/CFS. "Collaborating ...would lead to answers faster"

 

[Daisymay]

Its not about independence, nobody is suggesting anything of the sort, and i dont think anyone wants to see OMF anything other than being independent.

Its about solving ME/CFS. "Collaborating ...would lead to answers faster"

View attachment 15402

OK, point taken, it's just I am wary of NIH and other such organisations due to the politics and their beaurocratic way of functioning.

 

[anciendaze]

Its about solving ME/CFS. "Collaborating ...would lead to answers faster"...

I'm afraid collaborating would lead to about a year of meetings before actually doing anything. Think about the schedule for the study Lipkin supervised on XMRV.

 

[BurnA]

I'm afraid collaborating would lead to about a year of meetings before actually doing anything. Think about the schedule for the study Lipkin supervised on XMRV.

I think you've missed the point. Ron davis expressd a desire to collaborate - do you know something he doesn't ?
Even if it is a year of meetings so what - that wouldn't be a year of delay because its not going to happen sooner the way things are currently.
A study that starts after a year of meetings is better than a study that doesn't start at all.


Why don't you recognise this for what it could be instead of being negative ?

 

[anciendaze]

I think you've missed the point. Ron davis expressd a desire to collaborate - do you know something he doesn't ?
Even if it is a year of meetings so what - that wouldn't be a year of delay because its not going to happen sooner the way things are currently.
A study that starts after a year of meetings is better than a study that doesn't start at all.

A study like PACE?

Why don't you recognise this for what it could be instead of being negative ?

Because I have lived through decades of official denial, obfuscation and misuse of millions of dollars in funds Congress allocated to study CFS.

 

[Hip]

Very extensive list of test, but it seems very odd that they have left out enteroviruses from the viral testing, unless enteroviruses are included within "Viral Digital PCR".

• Viral Digital PCR
• Viral Serologies:

EBV EA (Epstein Barr Virus EA)
EBV NA (Epstein Barr Virus NA)
EBV VCA (Epstein Barr Virus VCA)
CMV (Cytomegalovirus)
HHV-6 (Human Herpesvirus 6)
Parvovirus
HHV-7 (Human Herpes Virus 7)
HSV1&2 (Herpes Simplex 1 & 2)​

There are nearly two dozen studies showing that enteroviruses are found at much higher viral loads in ME/CFS patients compared to health controls. So enterovirus should be at the top of the list.


Digital PCR sounds interesting though:

RT-dPCR provides an effective means for testing the viral load for occult viruses that could easily be overlooked. It can specifically detect the presence of any viral genome of interest early in infection with prior sequence information available and bear key information needed for comprehensive patient prognosis.
Ref: 1

 

[halcyon]

Very extensive list of test, but it seems very odd that they have left out enteroviruses from the viral testing, unless enteroviruses are included within "Viral Digital PCR".

Not super odd given the OMI is probably where a lot of their ideas came from. OMI doesn't seem to believe in the enterovirus hypothesis and they don't routinely test their patients for them.

There are nearly two dozen studies showing that enteroviruses are found at much higher viral loads in ME/CFS patients compared to health controls. So enterovirus should be at the top of the list.

I did contact them about this a while back so they are aware of it and they are aware of Dr. Chia's work. At the time it sounded like the specifics of the viral testing were still up in the air. I really hope they add some appropriate enterovirus serology to the plan.

Digital PCR sounds interesting though:

And will be basically useless as we already know. If we were going to find the virus easily in the blood we would have by now.

 

[Hip]

OMI doesn't seem to believe in the enterovirus hypothesis and they don't routinely test their patients for them.

Well that would explain a lot.

And will be basically useless as we already know.

Lipkin said that the high-throughput sequencing technique he used in his ME/CFS studies would not detect enterovirus in the blood (but would detect this virus if infected tissue samples were used instead of blood).

However, whether digital PCR might have increased sensitivity over high-throughput sequencing, I am not sure.

 

[Justin30]

Very extensive list of test, but it seems very odd that they have left out enteroviruses from the viral testing, unless enteroviruses are included within "Viral Digital PCR".


There are nearly two dozen studies showing that enteroviruses are found at much higher viral loads in ME/CFS patients compared to health controls. So enterovirus should be at the top of the list.


Digital PCR sounds interesting though:

Yeah thats totally wierd why no Enterovirus testing.....that seems strange????

 

[Justin30]

Its not about independence, nobody is suggesting anything of the sort, and i dont think anyone wants to see OMF anything other than being independent.

Its about solving ME/CFS. "Collaborating ...would lead to answers faster"

View attachment 15402

Seeing that from Janet Dafoe Makes me so sad.....

I Hope our organizations would demand a form of collaborations....

Or at least a very thorough response from the NIH as to why this is not taking place.

There is no reason for this not to take place....

They need to fill in the GAPS.....

@viggster is MEAction going to look into this?

 

[Justin30]

I know of other CFS Drs that have contacted NIH Drs to try to collaborate but have been pushed away....Pathetic

I am glad the NIH is doing the study but some things they do need greater explanation....

@BurnA can you link me to the Janet Dafoe comment?

 

[BurnA]

A study like PACE?

Because I have lived through decades of official denial, obfuscation and misuse of millions of dollars in funds Congress allocated to study CFS.

Nobody is talking about PACE, why would you bring that up on this thread ? This is about as far from PACE as you can get.
Comparing to PACE is not the answer to a question about the OMF collaborating with the NIH.

 

[Justin30]

Well that would explain a lot.





Lipkin said that the high-throughput sequencing technique he used in his ME/CFS studies would not detect enterovirus in the blood (but would detect this virus if infected tissue samples were used instead of blood).

However, whether digital PCR might have increased sensitivity over high-throughput sequencing, I am not sure.

Maybe they should biopsy people and check for several things including Small Fiber Neuropathy and Enteroviruses....or.....can enteroviruses be found in stool? I know they were found in stomach biopsies...?

 

[BurnA]

I know of other CFS Drs that have contacted NIH Drs to try to collaborate but have been pushed away....Pathetic

I am glad the NIH is doing the study but some things they do need greater explanation....

@BurnA can you link me to the Janet Dafoe comment?

https://twitter.com/i/web/status/718612230804103168

I dont know where the original post was made but this was a tweet by Janet Dafoe.

 

[anciendaze]

Nobody is talking about PACE, why would you bring that up on this thread ? This is about as far from PACE as you can get.
Comparing to PACE is not the answer to a question about the OMF collaborating with the NIH.

The reason I mentioned PACE is that it is an example of what happens when government experts take control of research on this disease. U.S. examples include millions spent on building a patient cohort defined by W.C. Reeves using a severely flawed definition that over-represents patients with primary depressive disorders. That definition is still being defended, ignoring the bias it introduces. This is one confounding factor which is not necessary, as patients without depression can be found. If we have to wait until the cure for all forms of depression is found we are going to be waiting a long time.

The work of Dr. Montoya at Stanford was funded by a private donation which did not pass through government channels. The OMF initiative was funded by 10 million dollars in private funding. Those CFS experts on the advisory board have been around for many years, but their advice was completely ignored. Example: David S. Bell published repeatedly on a cluster outbreak among children in Lyndonville NY, official response was that there were no clusters and CFS did not occur in children.

Two studies which showed an objective drop in anaerobic thresholds during PEM have not been replicated by government investigators, who don't seem to know what to do with objective data confirming a physiological disease. This is an obvious place to start looking at physiological changes.

If you take the consensus opinion of many senior medical authorities, there is no question that you will decide what most doctors tell you, this is a personal problem you can overcome by positive thinking and exercise. There is a long history of failed attempts to discover anything by researchers thinking the same thoughts and doing the same tests. It is now clear that solving this problem will require innovation. What is the NIH record for innovation?

Truthfully, there isn't much evidence of actual innovation making it all the way into standard medical practice. The timescale for any change is quite long, even if current practice is harmful. Those people in senior positions within NIH did not get there and stay there by innovating, which requires change. What any large, long-lived organization trains people to do is to fight for funding and control. The people you expect to help OMF are far more skilled at destroying competition and taking credit for accomplishments that would not have happened if they had been in charge from day one. Sooner or later they become motivated by the cold, hard fact that it would be so much cheaper for government to declare this a personal problem of CFS patients. We have abundant evidence doing so will not cost them their jobs or funding.

 

[BurnA]

The reason I mentioned PACE is that it is an example of what happens when government experts take control of research on this disease.

But who is talking about taking control of research ?

I am afraid some people have become so entrenched that they are missing the big picture.

Everybody knows that government agencies are not the most innovative places, but frankly at this stage I just want good bio-medical research. OMF seem to be at the forefront of this, so if they think its a good idea to collaborate why on earth would anybody not want that ?

The way I look at it is: Would I rather get better in 10 years time purely by OMF research, or would I rather get better in 5 years time by OMF collaborating with NIH ? It's a no brainer.

 

[anciendaze]

But who is talking about taking control of research ?

I am afraid some people have become so entrenched that they are missing the big picture.

Everybody knows that government agencies are not the most innovative places, but frankly at this stage I just want good bio-medical research. OMF seem to be at the forefront of this, so if they think its a good idea to collaborate why on earth would anybody not want that ?

The way I look at it is: Would I rather get better in 10 years time purely by OMF research, or would I rather get better in 5 years time by OMF collaborating with NIH ? It's a no brainer.

I'm still waiting for evidence that collaborating with NIH accelerates anything except the proliferation of meetings and paperwork. If you have more than naive hope, I'd like to see it. Once the research process is too far along to derail, it will be time to consider NIH involvement. Right now it is in a delicate state.

Innovation takes place rapidly in small groups, and not at all in huge conglomerations with mixed motivations. People trained to survive in bureaucratic environments have incredible skills at infighting and obstruction. If you haven't seen it you simply can't imagine. Innovation is regularly reduced to a smooth line of talk, if not bullets on Powerpoint, and smooth talking is another skill promoted in these environments. The correlation between talk and performance is frequently negative. Taking control of initiatives started elsewhere is practically built into bureaucratic DNA. Don't expect people to change their DNA. Intelligent and innovative individuals do exist within large organizations, but they are generally limited by organizational inertia. Those that don't accept limitations are ejected.

A small group at Google has probably had more impact on scientific research than the entire NIH. Expecting NIH participation to accelerate matters is akin to expecting an elephant to become a figure skater.

 

[BurnA]

I'm still waiting for evidence that collaborating with NIH accelerates anything except the proliferation of meetings and paperwork. If you have more than naive hope, I'd like to see it. Once the research process is too far along to derail, it will be time to consider NIH involvement. Right now it is in a delicate state.

Innovation takes place rapidly in small groups, and not at all in huge conglomerations with mixed motivations. People trained to survive in bureaucratic environments have incredible skills at infighting and obstruction. If you haven't seen it you simply can't imagine. Innovation is regularly reduced to a smooth line of talk, if not bullets on Powerpoint, and smooth talking is another skill promoted in these environments. The correlation between talk and performance is frequently negative. Taking control of initiatives started elsewhere is practically built into bureaucratic DNA. Don't expect people to change their DNA. Intelligent and innovative individuals do exist within large organizations, but they are generally limited by organizational inertia. Those that don't accept limitations are ejected.

A small group at Google has probably had more impact on scientific research than the entire NIH. Expecting NIH participation to accelerate matters is akin to expecting an elephant to become a figure skater.

You've missed the point here.

I'm still waiting for evidence that collaborating with NIH accelerates anything except the proliferation of meetings and paperwork. If you have more than naive hope, I'd like to see it.

Why would you want evidence when the OMFs Ron Davis has expressed a desire to collaborate ?
Collaboration can mean sharing samples and results it doesn't mean waiting for a Government agency to innovate.
I don't know what you mean by naive hope, are you suggesting collaboration is a scientifically unproven method and that anyone who believes it is useful is naive ?
Are you aware of the testing that the NIH is performing as part of its intramural study - Many of the testing techniques have been developed by the people in the NIH. I think that qualifies as being innovative.

You have done nothing to justify your argument other than pointing at PACE as if that somehow is representative of all government funded research. That sounds naive to me. A lot of what you say in previous posts is true but the point is it doesn't justify your argument.

If you don't believe collaboration is a good thing then you are entitled to your beliefs, but I think Ron Davis knows what he is doing.

 

[Hip]

I can't comment on the OMF because I know nothing about their organization structures, but I do think @anciendaze's point about large bureaucratic government organizations has validity.

It's the sort of people that these government organizations tend to attract; they have the wrong sort of mindset; by inclination they prefer status quo over innovation. They prefer homeostasis to moving forward.

Same can be the case with large corporates: they can attract the "steady as she goes" sort of people that feel uncomfortable with change. That's why all the best innovation usually comes from tiny startup companies, not behemoth corporates.

So it's not just the large corporate organizational structures that can stifle innovation; it's also the sort of stagnant-minded people these large corporates attract.


For example, what positive steps has the CDC ever taken in their decades of involvement with ME/CFS?

For a start, the CDC were responsible for creating the duplicate disease classification of CFS, which was unnecessary, since the ME classification already existed, and was a disaster for the whole field (except for disability insurance companies, who were able to save billions in disability payouts as a result of the creation of CFS).

When the CDC was looking into cardiopulmonary exercise testing (CPET), even though it is the two-day CPET test that only on the second day is able to distinguish ME/CFS patients from healthy controls, the CDC incomprehensibly and incompetently chose to do only a one-day CPET examination of ME/CFS patients! Ref: 1

When recently Dr Chia sent his ME/CFS patient enterovirus-infected stomach tissue samples to the CDC, because the CDC said they were interested in replicating Dr Chia's finding of an enteroviral stomach infection, after receiving Chia's samples, the CDC left these samples hanging around for a year before they even looked at them. And then when they did finally look at them, the CDC could not find enterovirus. I will place bets that not finding the virus is due to CDC incompetence. Ref: 1

 

[BurnA]

@Hip like i said in my previous point a lot of what @anciendaze says is correct.

However we need to look beyond common generalizations and ask what is good for us.

Asking what the CDC has ever done for ME/CFS has nothing to do with the sharing of samples and results between the NIH and OMF. ( ie collaboration) If we want to get better sooner we need to avoid the easy temptation to criticize something because it has a connection to a government agency.

We all know the history of failed efforts in researching this disease, they are not a reason to slow down further research.

There is a bigger picture.