Dr Ron Davis on why his NIH proposal was rejected

[viggster]

Why does all this happen during the same period in history and the same players control the direction of research, e.g. oblivion, blocking, failures, mismanagement, and time wasting. Everything happens for a reason and highly intelligent people no exactly what they're doing.

A lot of what you said made sense to me, but are you implying a small group of people got together and decided to bury "ME" and make sure no research was done? If so, who are these people and when, where, and how did this happen?

 

[A.B.]

It really is obvious, and it will never change, ever, until independent researchers find the pathogen(s) away from major institutions who study tired people with Fukuda CFS (rebranded SEID), some who have burn out and recover by gentle exercise, others who are neurotic and avoid any activity and need reprogramming with CBT.

Yes, many with CFS, do have biological disease, but they all share the label of 'CFS' so the numbers are diluted in research studies. No consistency is possible. Any 'leads' are thus dropped, thus no treatment ever 'works' for CFS.

In the recent Rituximab open label study, they added about 10 Fukuda CFS patients to the 20 patients from the previous study. The response rate in both studies was the same.

And the idea that CBT and GET are the right thing for some patients is laughable. In the PACE trial nobody recovered as shown by absence of improvement in outcomes such as fitness, walking test, employment, etc.

I think reality is more nuanced than the "ME = real illness, Fukuda CFS = garbage bin diagnosis with many neurotic cases" viewpoint.

I'm also surprised that a patient so readily dismisses another patient group as not having a real illness. You should know better than this.

 

[greeneagledown]

In the recent Rituximab open label study, they added about 10 Fukuda CFS patients to the 20 patients from the previous study. The response rate in both studies was the same.

And the idea that CBT and GET are the right thing for some patients is laughable. In the PACE trial nobody recovered as shown by absence of improvement in outcomes such as fitness, walking test, employment, etc.

I think reality is more nuanced than the "ME = real illness, Fukuda CFS = garbage bin diagnosis with many neurotic cases" viewpoint.

I'm also surprised that a patient so readily dismisses another patient group as not having a real illness. You should know better than this.

Well said!

 

[ukxmrv]

The problem in my view is the stigma. No one wants to be caught funding a disease which is believed to be psychological.

Maybe it is a little different in way?

No one wants to be caught funding a disease that the individual researchers think is physical but everyone knows is "really" psychological

 

[Scarecrow]

Maybe it is a little different in way?

No one wants to be caught funding a disease that the researchers think is physical but is "really" psychological

Oh, can I play, too?

No one wants to be caught funding biological research for a disease that some deluded researchers mistakenly think is physical but which some really clever reviewers *know* is psychological.

 

[alex3619]

Perhaps real solution is to create an entirely new (NIH) institute, 'emerging diseases' or some such, to focus on rare and emerging diseases, to foster a broader approach than would be delivered with the rigid segmentation of existing institutes (eg neurology, infectious diseases etc).

You mean like NCNED here in Australia but part of the NIH in the US?

 

[snowathlete]

Fukuda CFS (rebranded SEID),

Didn't read the whole post but just felt it important to challenge this. I did read the whole IOM report and definiton for SEID though - SEID has its own criteria which is more strict than Fukuda, so the idea that SEID is just Fukuda rebranded is just not an accurate picture at all.

 

[msf]

I haven´t looked into it much, but according to Jason´s analysis, the SEID criteria are only slightly stricter than the Fukuda (identifying 88% rather than 92% of the patient group, as I recall).

 

[jimells]

The problem in my view is the stigma. No one wants to be caught funding a disease which is believed to be psychological.

It wasn't "psychological" until government funders made it that way...

 

[jimells]

A lot of what you said made sense to me, but are you implying a small group of people got together and decided to bury "ME" and make sure no research was done? If so, who are these people and when, where, and how did this happen?

In the UK, there is evidence of collusion between the Dept of Work and Pensions, the Wessely gang, and the disability insurance companies, as discussed by an official UK Parliamentary Group:

"CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments."

"We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies."

The Group called for investigation of what they called, "numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

(quoted from Wikipedia)

The Countess of Mar, a member of the panel, is a tireless advocate for ME patients in UK. I'm sure she would be happy to talk to most any journalist regarding the political history. Her email is marm@parliament.uk


Meanwhile, it has been reported (sorry, I don't have any good references) that the UK psychobabblers were good buddies with Dr Straus and that they were hired by CDC to work on "CFS". We have very good evidence that Straus intended to bury the illness:

I'm no investigative journalist, but I smell a whiff of smoke. With a bit of time and resources, I'm betting a journalist could find the fire. Do you know anybody interested?

p.s. This letter was displayed at the CFSAC meeting. But nobody commented on it. Not one word from any other committee member.

 

[msf]

These people are morons, and dangerous morons at that. ´I have felt for some time?´ What kind of scientist, or pseudo-scientist even, uses phrases like that? These people are all charlatans and shills and the ME community needs to make sure that they are exposed as such.

 

[Bob]

Latest OMF newsletter (Summer 2015):
https://bos.etapestry.com/prod/viewEmailAsPage.do?databaseId=OMF&key=&jobRef=773.0.115879967

 

[halcyon]

Latest OMF newsletter (Summer 2015):
https://bos.etapestry.com/prod/viewEmailAsPage.do?databaseId=OMF&key=&jobRef=773.0.115879967

I guess I'm confused. They're going ahead with the big data study even though they haven't reached the full budget yet?

 

[Sasha]

I guess I'm confused. They're going ahead with the big data study even though they haven't reached the full budget yet?

They started even before they got the $500k. They're doing as many patients as they can afford, and because they're so very sick they're hoping that the signal in the data will be very strong.

But we need to be throwing money at them to fully fund it - we've got to give them the best chance possible, and we've got to keep pressure on the NIH to do the right thing.

 

[halcyon]

They started even before they got the $500k. They're doing as many patients as they can afford, and because they're so very sick they're hoping that the signal in the data will be very strong.

Oh, I hadn't heard that. Awesome.

 

[Sasha]

Oh, I hadn't heard that. Awesome.

Each patient costs $25,000 to run so every time they notch up another $25,000 they'll process another patient. They want 40 patients for a total of $1m.

 

[viggster]

Thanks, I didn't know about this report in the UK. We need a Snowden of the insurance industry to leak all the documents showing how awful they are...but that's another topic.

 

[Gingergrrl]

Latest OMF newsletter (Summer 2015):
https://bos.etapestry.com/prod/viewEmailAsPage.do?databaseId=OMF&key=&jobRef=773.0.115879967

Thanks for posting this @Bob and I tried earlier today but couldn't get it to work!

And yes, everyone please keep donating to the severely ill big data study!!!

 

[Hutan]

A lot of what you said made sense to me, but are you implying a small group of people got together and decided to bury "ME" and make sure no research was done? If so, who are these people and when, where, and how did this happen?

@viggster, have you seen this?

http://www.occupycfs.com/2015/05/08/the-burial-of-me/

"With the intent of providing a tool to help with such efforts, my son and I compiled a detailed, referenced document titled Thirty Years of Disdain: How HHS Buried ME. This document is intended to bring together in one place key events in the story of HHS’s failed public policy toward this disease.

The resulting document is long, making it more suitable as a deep background reference. We are creating shorter, targeted pieces to focus on congressional leaders and the media. The community is welcome to use it if it’s of benefit in their advocacy efforts. http://bit.ly/The_Burial_of_ME"​

 

[jimells]

The NIH party line is remarkably consistent across the years. Is there an agency-wide policy manual so everybody knows what to say?

3. NIH: There was a lack of clear hypotheses to be tested and many felt there was a lack of detail provided in the proposal

(Dr Davis rejection)

Dr. Hanna noted that the NIH review process requires a testable hypothesis and researchers must explain how they will accomplish the study. Research proposals must rank in a respectable percentile to be funded. CFS research at NIH will only grow if more grant applications are submitted, accepted, and funded.

(1st CFSAC meeting minutes, Sept 2003)